Got Kidney?

Transplant Trotters have cause to savor Hood to Coast

2011-12-15T17:06:00.001-08:00

Here is another article that came as a result of Donate Life Northwest's "Hood to Coast" PR blitz. I can't say enough how HONORED I am to be part of the Transplant Trotter team! Running is a passion of mine. Promoting organ donation is a passion of mine. Having an opportunity to combine running and organ donor awareness is like GOLD to me.

I've talked to so many people about the risks of becoming a living organ donor - I love to tell people that I am an even more dedicated runner post donation. It's so fulfilling to let people know that you don't have to sacrifice your passions to donate an organ -in fact for me it was quite the opposite situation. The entire process helped me prioritize my life and put even more attention to running. Plus - I was able to meet the founder of Hood to Coast this summer and I treasure the stories we shared about the very first Hood to Coast races. Most people think about the Hood to Coast as some crazy running experience, but Bob tells of stories of people, ordinary people doing great things (like running 200 miles!) Isn't that really what life is all about?

Anyways - here is the story that highlights Hood to Coast 2011 and my organ donation story: Transplant Trotters have cause to savor Hood to Coast

Transplant Trotters

2011-08-24T13:33:00.000-07:00

It's August again so that means I'm prepping for my 5th Hood to Coast Relay! This year I get to be part of the Transplant Trotter team again and I'm very excited. The entire team is made up of organ donors, recipients, family and friends. I'm still working on getting Anna to join the team. Maybe next year!

I was very honored yesterday when I was asked to do an interview with THE FOUNDER of Hood to Coast, Bob Foote. Bob is a two-time kidney recipient and is an amazing example of how you can lead a healthy active life post transplant. Here is the interview we did together on KOIN television. It was in front of a live audience so that was a little nerve racking, but still a lot of fun! Enjoy!

Here is the link for the video and story

This year our Transplant Trotter team consists of 4 Living Donors, 7 Kidney recipients, 3 Liver recipients, 3 family members of recipients & 3 friends of recipients ages 14-70. Should be an interesting journey once again this time around!!!

Moving forward...

2009-01-24T22:07:00.000-08:00

Anna and I are now a year and a few months post kidney transplant. I’m often asked “how is Anna doing?” and it has come to my attention that I had a better answer to that question when she was in dialysis and awaiting a new kidney. The year that Anna’s kidneys shut down, I made it a priority to drive the three hours from Portland to Seattle to stay connected to Anna. We did little more those days than sip Chai Tea and talk; Anna often slept as she was in a great deal of pain. It wasn’t much, but I could tell you how she was holding up. But what about today? I simultaneously love and hate that I don’t really have a good answer to that question. You see, since the kidney transplant Anna has been healthy. She has been living her life, she has been out of the house and unconstrained by poor health. It’s a great problem to have. But unfortunately, I haven’t spent as much time with my best friend as I’d like.

Anna and I did spend the weekend of our one-year transplant anniversary together. We had originally planned on having a girl’s weekend getaway somewhere fun and sunny but life got in the way and we opted for a weekend halfway between Portland and Seattle. Yep – there is a tiny little town tucked off of Interstate 5 called Chehalis. We stayed at the local McMenamin’s, shopped, watched movies, had pedicures, read tashy tabloids, played pool and caught up with one another. It rained the entire weekend (November in the Pacific Northwest after all), but we had a wonderful time – significantly less painful than the year before J

Since the surgery, I seem to be drawn to the notion of evangelizing organ donation. Just ask me one question about the process, and I’ll talk your ear off and then ask you if you are a registered organ donor. It’s my charity of choice (alongside food allergy awareness) that I promote over lunch, via twitter and even in Vegas nightclubs. I think my friends might be getting tired of it, but I feel like its something I should share. As such, I’m slated to volunteer for the local chapter of the Donate Life organization. This spring, I’ll be going into local area high schools to chat about organ donation. As a PR professional, I find it amusing they won’t let me talk to the students until I go through presentation and messaging training. All those dozens of media training sessions and I’m still not trusted J

Looking back on this process, I am still humbled by the gracious gifts and words that friends, family and strangers offered to us. It's funny how this decision changed my entire outlook on life, but it was easily one of the most guttural decisions I’ve ever made. Yes, I would do it again in a heartbeat. Yes, even though it hurt (people always ask me if it hurt), yes it hurt worse than childbirth, but yes I’d do it again in a heartbeat.

The fact this kidney transplant has given Anna more than a year of good health, makes me proud. Her body could easily reject this kidney next week but I would still not regret this decision. I get to see Anna next month at her cousin’s wedding in our hometown. The last time Anna and I hung out in our hometown was just weeks before her kidneys shut down, it seems almost like another lifetime. I’m looking forward to the wedding weekend, just as much as I am looking forward to sharing years of good health with my best friend.

Another perspective

2008-06-11T23:47:00.000-07:00

Decision to Donate is an inspiring video story of a kidney donation between two friends. Basically, the video is a lot like this blog but significantly less winded - I mean condensed. The movie runs about 15-minutes and is a lovely example of how wonderful and rewarding organ donation can be, for both the recipient and the donor.

"Decision to Donate tells the story of two men, one in need of a kidney transplant and the other willing to donate a kidney. The film explores this profound, life saving decision and the emotional experiences of the donor, the recipient and their families."

This particular kidney donation story touches a soft place in my heart because the kidney donation occurred at the same hospital as our surgery, Virginia Mason Hospital. Even my surgeon, Dr. Kozlowski, makes an short appearance in this video.

Somewhere near the middle point, the film shows footage from the day of surgery. As the film follows down the hospital corridor, I could feel myself there again; smelling that horrendously clean antibacterial scent and experiencing a confusing whirlwind of emotions twisting through happiness, loss, concern and pride. Watching John Backus up and walking post surgery made me clutch my side, even though I haven't felt pain there in months. That footage brought my surgery back in an instant. If you have the time, I suggest a viewing, then click on the registration link for organ donation if you feel inspired.

We are now seven-months post surgery and I'm happy to report that we are both doing well. I have no complaints, everything is as it should be. Anna is HEALTHY, her tests continue to show excellent results and she has resumed living a normal life again. What can I say? Life is good.

Singing in the Rain

2008-04-22T14:01:00.000-07:00

April is National Donate Life Month and as such, the Living Legacy Foun dat ion hosted it's fourth annual giving luncheon last week. Anna and I had the pleasure of attending the luncheon and were able to sit with a table full of Virginia Mason donors and recipients. I've communicated with these folks leading up to and through our kidney transplant processes via email but I had yet to meet anyone in person before last week's luncheon. I have to say everyone was so kind and delightful to meet.

The luncheon itself was wonderful, it was a very professional event and I think everyone had a lovely time. They even provided every table with Kleenex tissues due to the highly charged nature of the guest presenters. And let me tell you, those tissues were used! The luncheon is open to anyone interested in supporting organ donation - so I welcome all of you to consider attending next year.

The Spoon Theory

2008-04-08T18:34:00.000-07:00

Over the years, I've read dozens of articles on Lupus and kidney failure. Most are technical in nature, technical to a point I have trouble understanding the medical jargon. Never before have I come across a really good article that explains Lupus from a personal perspective. This article came my way today thanks to friend. I had never read it before, but the author - Christine Miserandino - does an amazing job of describing the pain of living with Lupus. It's a great read if you have the time.

http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

"I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to the spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn't just good of understanding Lupus, but anyone dealing with any disability or illness."

Changes to Organ Donation Process

2008-04-02T20:15:00.000-07:00

Do you have a "D" on your driver's license? I'm sad to say, but I just had to check mine this morning, because although I thought I had signed up to be an organ donor back when I got my license years ago - I honestly couldn't remember. Up until this year, if you had selected this deisgnation on your license you probably assumed that your organs would and could be donated if certain critera were met. Most people think this is the case, I did as well. Even with this designation organ recovery agencies still required consent from family members - giving final decision to another party. And sadly, on many occasions organ donations were halted because of this policy. But thanks to some hard working folks at Donate Life Northwest, this is no longer the case! According to the new policies announced today, this burden has been removed from the family.

Here's a quick Q&A on the changes:

Q: What changed in the organ, eye and tissue donation process?
A: In the past, the family of a potential organ, eye or tissue donor made the final decision for donation regardless of a donor designation on the driver’s license. Now that burden on the family has been removed because the license designation has the same application as an online or paper registration.

Q: Why has this change been made?
A: This change was made to be consistent with national donation practices. It is in line with what most Oregonians already believe — the “D” designation signifies their final consent to be organ, eye and tissue donors.

Q: How did recent legislation play into the change?
A: During Oregon’s 2007 Legislative Session, lawmakers passed the revised Uniform Anatomical Gift Act (UAGA), which strengthened the existing UAGA law by aligning it with national trends.

Q: When will this change take affect?
A: The revised UAGA went into affect January 2008. Organ, eye and tissue recovery agencies will be making the necessary changes over the next several months.

Q: How do I sign up to be a donor?
A: There is one donor registry with three ways an individual can register to be a donor: 1) online at www.donatelifenw.org, 2) through a DMV-issued driver’s license/instruction permit/ID card, 3) filling out a paper form obtained by calling 1-800-452-1369.

Q: What does the “D” on my license mean?
A: The driver’s license is global consent, i.e. consent for recovery of all organs,
eyes and tissues for transplant or medical research. Those who do not have a
donor designation on their license and wish to be a donor can register online at
www.donatelifenw.org or call 1-800-452-1369 to request a paper form.
Individuals signing up through these methods are added to the same donor
registry as DMV registrants and can also provide global consent, as defined
above. Online registration and paper forms also allow an individual to specify
what they wish to donate and for what purposes.

Cellular Memory

2008-03-30T07:35:00.000-07:00

We’ve all experienced Déjà Vu at some point in our lives, I’ve heard a lot of explanations for it over the years. Even the movie The Matrix, positioned a theory about why we experience this feeling of “been there, done that.” There are scientific theories and there are mystical explanations, but at the end of the day nobody really knows what it is, but most people agree it happens and have first-hand experiences to relay to others.

There is another similar, but far less known phenomenon, called Cellular Memory. The reason people don’t know about it as they do Déjà Vu, is because a much smaller subset of people have the right factors in place to feel it. Cellular memory is said to occur when a person has an organ transplant, it is the idea of adapting traits, memories, preferences compulsions, and habits of your organ donor. Although a vast majority of the public has never experienced cellular memory, the idea is not a new one – at least in Hollywood. Over the years there have been several movies made to fit into this theme. There have been touching ones like the James Caan/Billy Dee Williams flick, Brian’s Song and there are the slasher films like Body Parts and to a lesser degree this year’s Jessica Alba movie The Eye.

When the organ is placed in the recipient, the information and energy stored in the organ is passed on to the recipient. The theory applies to any organ that has cells that are interconnected. They could be heart, lungs, kidneys, liver and even muscles.

Late one February night, I was watching an interview with a kidney recipient. He received his gift of life when a young teenager died in a car accident. The recipient never met his organ donor nor had he had the opportunity to meet with his donor’s family. The interview primarily focused on how the recipient’s life had changed since his surgery. He described new hobbies he liked to experience and new foods he now craved that he never had interest in before. As it turned out, the donor’s family had been contacted and they shared some of the background of the young man that served as the kidney donor. His favorite hobby and favorite foods matched the recipient’s new desires. I have no idea if any of this was staged for dramatic impact, but it did make me start to think about Anna and I began wondering if she would pick up anything new from me?

The next time I talked with her I told her about the interview and asked if she had any new food cravings or interests. She dismissed my line of questions pretty quickly. She couldn’t think of any examples that would be interesting to my cellular memory study. Disappointed, I let the conversation go, but I continued to daydream about my best case scenarios on how cellular memory could impact Anna’s life. Perhaps she would be compelled to vote Democratic for the first time in her life? Perhaps she would start craving the limelight and start kareoking at Friday nights? Maybe she’d get an instant desire to hit the highway, get her license and drive to Portland to visit me?

There are always skeptics that try to disprove theories and things that interest me. Cellular memory is no different. There have been plenty of theorists and scientists that believe cellular memory is nothing more than a reaction to drugs, pure coincidence and/or the power of suggestion. This could likely be true, but it isn’t very much fun in my opinion. There are several authorities though that do support the idea of cellular memory:

"It's highly controversial, but I don't exclude it completely," said Dr. Jack G.
Copeland, UMC's chief of cardiothoracic surgery and head of the heart team that
has performed more than 700 transplants in 25 years. "With any solid organ, you
are transferring DNA from the donor to the recipient," he said. "These are genes
that relate not only to the specific organ, but to other systems as well, such
as cerebral function. So there may be something to this thing that personalities
can change."

I found this site that lists out 10 very different and very interesting cellular memory scenarios. http://www.nexusmagazine.com/articles/CellularMemories.html Some stories even made me want to cry.

Edited to include content as link is no longer active:
To protect the privacy of the donors' families, recipients and their
families, physicians and hospitals, donors and recipients are referred to by
number, except when their first names were mentioned by family members or
friends in the transcripts. All recipients and family members or friends of the
donors were interviewed by Pearsall and audiotaped. The transcripts were
examined by Schwartz and Russek and selected for inclusion in this report.Each
of the 10 cases includes a donor family member's report (or equivalent), a
recipient's report (or equivalent) and a recipient family member's or friend's
report. Donor family members, recipients and recipient family members or friends
are quoted directly from the transcripts. Personal opinions (including
controversial content) are reported verbatim. Each case includes two to five
sample parallels between the donors and changes observed in the recipients post
transplant surgery.

Case 1 The donor was an 18-year-old boy killed in an automobile accident. The recipient was an 18-year-old girl diagnosed with endocarditis and subsequent heart failure.The donor's father, a psychiatrist, said: "My son always wrote poetry. We had waited more than a year to clean out his room after he died. We found a book of poems he had never shown us, and we've never told anyone about them. One of them has left us shaken emotionally and spiritually. It spoke of his seeing his own sudden death. He was a musician, too, and we found a song he titled "Danny, My Heart Is Yours"—the words about how my son felt he was destined to die and give his heart to someone. He had decided to donate his organs when he was 12 years old. We thought it was quite strong, but we thought they were talking about it in school. When we met his recipient, we were so...we didn't know, like, what it was. We don't know now. We
just don't know."
The recipient reported:"When they showed me pictures of their son, I knew him directly. I would have picked him out anywhere. He's in me. I know he is in me and he is in love with me. He was always my lover, maybe in another time somewhere. How could he know years before he died that he would die and give his heart to me? How would he know my name is Danny? And then, when they played me some of his music, I could finish the phrases of his songs. I could never play before, but after my transplant I began to love music. I felt it in my heart. My heart had to play it. I told my mom I wanted to take guitar lessons—the same instrument Paul [the donor] had played. His song is in me. I feel it a lot at night and it's like Paul is serenading me."
The recipient's father reported:"My daughter, she was what you say....a hell-raiser. Until she got sick—they say from a dentist, they think—she was the wild one. Then she became quite quiet. I think it was her illness, but she said she felt more energy, not less. She said she wanted to play an instrument and she wanted to sing. When she wrote her first song, she sang about her new heart as her lover's heart. She said her lover had come to save her life."
Case 2The donor was a 16-month-old boy who drowned in a bathtub. The recipient was a seven-month-old boy diagnosed with tetralogy of Fallot (a hole in the ventricular septum with displacement of the aorta, pulmonary stenosis and thickening of the right ventricle).The donor's mother, a physician, noted:"The first thing is that I could more than hear Jerry's [donor's] heart. I could feel it in me. When Carter [the recipient] first saw me, he ran to me and pushed his nose against me and rubbed and rubbed it. It was just exactly what we did with Jerry. Jerry and
Carter's heart is five years old now, but Carter's eyes were Jerry's eyes. When
he hugged me, I could feel my son. I mean I could feel him, not just symbolically. He was there. I felt his energy."I'm a doctor. I'm trained to be a keen observer and have always been a natural-born sceptic. But this was real. I know people will say that I need to believe my son's spirit is alive, and perhaps I do. But I felt it. My husband and my father felt it. And I swear to you, and you can ask my mother, Carter said the same baby-talk words that Jerry said. Carter is six, but he was talking Jerry's baby talk and playing with my nose just like Jerry did."We stayed with the ... [recipient family] that night. In the middle of the night, Carter came in and asked to sleep with my husband and me. He cuddled up between us exactly like Jerry did, and we began to cry. Carter told us not to cry because Jerry said everything was okay. My husband and I, our parents and those who really knew Jerry have no doubt. Our son's heart
contains much of our son and beats in Carter's chest. On some level, our son is still alive."The recipient's mother reported:"I saw Carter go to her [donor's mother]. He never does that. He is very, very shy, but he went to her just like he used to run to me when he was a baby. When he whispered 'It's okay, mama', I broke down. He called her 'Mother', or maybe it was Jerry's heart talking. And one more thing that got to us. We found out talking to Jerry's mom that Jerry had mild cerebral palsy mostly on his left side. Carter has stiffness and some shaking on that same side. He never did as a baby and it only showed up after the transplant. The doctors say it's probably something to do with his medical condition, but I really think there's more to it."One more thing I'd like to know about. When we went to church together, Carter had never met Jerry's father. We came late and Jerry's dad was sitting with a group of people in the middle of the congregation. Carter let go of my hand and ran right to that man. He climbed on his lap, hugged him and said 'Daddy'. We were
flabbergasted. How could he have known him? Why did he call him dad? He never
did things like that. He would never let go of my hand in church and never run
to a stranger. When I asked him why he did it, he said he didn't. He said Jerry
did and he went with him."
Case 3The donor was a 24-year-old woman who was the victim of an automobile accident. The recipient was a 25-year-old male graduate student suffering from cystic fibrosis who received a heart-lung transplant.The donor's sister reported:"My sister was a very sensual person. Her one love was painting. She was on her way to her first solo showing at a tiny art shop when a drunk ploughed into her. It's a lesbian art store that supports gay artists. My sister was not really very 'out' about it, but she was gay. She said her landscape paintings were really representations of the mother or woman figure. She would look at a naked woman model and paint a landscape from that! Can you imagine? She was gifted."
The recipient reported:"I never told anyone at first, but I thought having a woman's heart would make me gay. Since my surgery, I've been hornier than ever and women just seem to look even more erotic and sensual, so I thought I might have gotten internal transsexual surgery. My doctor told me it was just my new energy and lease on life that made me feel that way, but I'm different. I know I'm different. I make love like I know exactly how the woman's body feels and responds—almost as if it is my body. I have the same body, but I still think I've got a woman's way of thinking about sex now."
The recipient's girlfriend said:"He's a much better lover now. Of course, he was weaker before, but it's not that. He's like, I mean, he just knows my body as well as I do. He wants to cuddle, hold and take a lot of time. Before he was a good lover, but not like this. It's just different. He wants to hug all the time and go shopping. My God, he never wanted to shop! And you know what, he carries a purse now. His purse! He slings it over his shoulder and calls it his bag, but it's a purse. He hates it when I say that, but going to the mall with him is like going with one of the girls. And one more thing, he loves to go to museums. He would never, absolutely never, do that. Now he would go every week. Sometimes he stands for minutes and looks at a painting without talking. He loves landscapes and just stares. Sometimes I just leave him there and come back later."
Case 4The donor was a 17-year-old black male student victim of a drive-by shooting. The recipient was a 47-year-old white male foundry worker diagnosed with aortic stenosis.The donor's mother reported:"Our son was walking to violin class when he was hit. Nobody knows where the bullet came from, but it just hit him and he fell. He died right there on the street, hugging his violin case. He loved music and his teachers said he had a real thing for it. He would listen to music and play along with it. I think he would have been at Carnegie Hall some day, but the other kids always made fun of the music he liked."
The recipient reported:"I'm real sad and all for the guy who died and gave me his heart, but I really have trouble with the fact that he was black. I'm not a racist, mind you, not at all. Most of [my] friends at the plant are black guys. But the idea that there is a black heart in a white body seems really...well, I don't know. I told my wife that I thought my penis might grow to a black man's size. They say black men have larger penises, but I don't know for sure. After we have sex, I sometimes feel guilty because a black man made love to my wife, but I don't really think that seriously. "I can tell you one thing, though. I used to hate classical music, but now I love it. So I know it's not my new heart, because a black guy from the 'hood wouldn't be into that. Now it calms my heart. I play it all the time. I more than like it. I didn't tell any of the guys on the line that I have a black heart, but I think about it a lot." The recipient's wife reported:"He was more than concerned about the idea when he heard it was a black man's heart. He actually asked me if he could ask the doctor for a white heart when one came up. He's no Archie Bunker, but he's close to it. And he would kill me if he knew I told you this, but for the first time he's invited his black friends over from work. It's like he doesn't see their colour any more, even though he still talks about it sometimes. He seems more comfortable and at ease with these black guys, but he's not aware of it. "And one more thing I should say. He's driving me nuts with the classical music. He doesn't know the name of one song and never, never listened to it
before. Now, he sits for hours and listens to it. He even whistles classical music songs that he could never know. How does he know them? You'd think he'd like rap music or something because of his black heart."
Case 5The donor was a 19-year-old woman killed in an automobile accident. The recipient was a 29-year-old woman diagnosed with cardiomyopathy secondary to endocarditis.The donor's mother reported:"My Sara was the most loving girl. She owned and operated her own health food restaurant and scolded me constantly about not being a vegetarian. She was a great kid. Wild, but great. She was into the free-love thing and had a different man in her life every few months. She was man crazy when she was a little girl and it never stopped. She was able to write some notes to me when she was dying. She was so out of it, but she kept saying how she could feel the impact of the car hitting them. She said she could feel it going through her body."
The recipient reported:"You can tell people about this if you want to, but it will make you sound crazy. When I got my new heart, two things happened to me. First, almost every night, and still sometimes now, I actually feel the accident my donor had. I can feel the impact in my chest. It slams into me, but my doctor said everything looks fine. Also, I hate meat now. I can't stand it. I was McDonald's biggest money-maker, and now meat makes me throw up. Actually, when I even smell it, my heart starts to race. But that's not the big deal. My doctor said that's just due to my medicines. "I couldn't tell him, but what really bothers me is that I'm engaged to be married now. He's a great guy and we love each other. The sex is terrific. The problem is, I'm
gay. At least, I thought I was. After my transplant, I'm not...I don't think, anyway...I'm sort of semi- or confused gay. Women still seem attractive to me, but my boyfriend turns me on; women don't. I have absolutely no desire to be with a woman. I think I got a gender transplant." The recipient's brother reported:"Susie's straight now. I mean it seriously. She was gay and now her new heart made her straight. She threw out all her books and stuff about gay politics and never talks about it any more. She was really militant about it before. She holds hands and cuddles with Steven just like my girlfriend does with me. She talks girl-talk with my girlfriend, where before she would be lecturing about the evils of sexist men. And my sister, the queen of the Big Mac, hates meat. She won't even have it in the house."
Case 6The donor was a 14-year-old girl injured in a gymnastics accident. The recipient was a 47-year-old man diagnosed with benign myxoma and cardiomyopathy.The donor's mother reported:"Look at her [shows photograph]. My daughter was the picture of health. There wasn't an ounce of fat on her. She was a gymnast and her coach could lift her above his head with one hand. She was so excited about life that she would just hop and jump all the time like a kitten. She had some trouble with food, though. She would skip meals, and for a while she was purging. I think they would call her a little anorexic. We took her to therapy about it,
but she just wasn't much into food. And she had this silly little giggle when
she got embarrassed. It sounded like a little bird." The recipient reported:"I feel new again. I feel like a teenager. I actually feel giddy. I know it's just the energy of the new heart, but I really feel younger in every way, not just physically. I see the world that way. I'm really young at heart. I have this annoying tendency to giggle that drives my wife nuts. And there's something about food. I don't know what it is. I get hungry, but after I eat I often feel nauseated and that it would help if I could throw up."The recipient's brother reported:"Gus is a teenager. No doubt about that. He's a kid or at least he thinks he's a kid. Even when we're bowling, he yells and jumps
around like a fool. He's got this weird laugh now. It's a girl's laugh and we tell him that. He doesn't care. His appetite never did bounce back after the surgery. He's pretty much nauseated almost all the time. After Thanksgiving dinner—and he loved it—he went upstairs and vomited. We took him to the emergency room, but it wasn't anything to do with his new heart. They said it was probably a reaction to something in the meal. None of the rest of the family got sick, though. He's going to have to watch it. His doctor is concerned about his weight."
Case 7 The donor was a three-year-old girl who drowned in the family pool. The recipient was a nine-year-old boy diagnosed with myocarditis and septal defect.The recipient's mother said:"He [the recipient] doesn't know who his donor was or how she died. We do. She drowned at her mother's boyfriend's house. Her mother and her boyfriend left her with a teenage babysitter who was on the phone when it happened. I never met her father, but the mother said they had a very ugly divorce and that the father never saw his daughter. She said she worked a lot of hours and wished she had spent more time with her. I think she feels pretty guilty about it all...you know, the both of them sort of not appreciating their daughter until it was too late." The recipient, who claimed not to know who the donor was, reported:"I talk to her
sometimes. I can feel her in there. She seems very sad. She is very afraid. I tell her it's okay, but she is very afraid. She says she wishes that parents wouldn't throw away their children. I don't know why she would say that." The recipient's mother said about the recipient:"Well, the one thing I notice most is that Jimmy is now deathly afraid of the water. He loved it before. We live on a lake and he won't go out in the backyard. He keeps closing and locking the back door. He says he's afraid of the water and doesn't know why. He won't talk about it."
Case 8The donor was a 19-year-old woman who had suffered a broken neck in dance class. The recipient was a 19-year-old woman diagnosed with cardiomyopathy.The donor's mother reported:"We've met Angela [the recipient], and she is the image of our daughter [Stacy]. They could almost be twins. They're both bright girls; I mean, my daughter was bright, too. She wanted to be an actress, but we thought she had too much academic potential for that. Her father is a doctor and really wanted her to follow in his footsteps." The donor's father reported:"Stacy was extremely bright. It's so tragic. She would have made an outstanding physician, but she wanted to dance and sing. That's how she died. She fell in dance class. We always argued good-naturedly about how disappointed I would be if she went to Hollywood instead of Harvard. I hope she knew I just wanted her to be happy."The recipient reported:"I think of her as my sister. I think we must have been sisters in a former life. I only know my donor was a girl my age, but it's more that that. I talk to her at night or when I'm sad. I feel her answering me. I can feel it in my chest. I put my left hand
there and press it with my right. It's like I can connect with her. Sometimes she seems sad. I think she wanted to be a nurse or something, but other times it's like she wanted to be on Broadway. I think she wanted to be on Broadway more. I want to be a nurse, but I could be a doctor too. I hope she will be happy, because she will always be my angel, my sister in my chest. I carry my angel with me everywhere."
The recipient's mother reported:"We can sometimes hear her talking to her heart. It's like a 'Dear diary' thing. She puts her hand on her chest and talks to who she thinks her donor is. Once we found her holding a stethoscope to her chest to try to hear her new heart. I think she still does that sometimes. And the only other thing is that she really wants to go to medical school now. She never wanted to do that before, but that's because I don't think she thought she would live. She's already changed her college classes."
Case 9The donor was a three-year-old boy who fell from an apartment window. The recipient was a five-year-old boy with septal defect and cardiomyopathy.The donor's mother reported:"It was uncanny. When I met the family and Daryl [the recipient] at the transplant meeting, I broke into tears. Then we went up to the giving tree where you hand a token symbolising your donor. I was already crying when my husband told me to look at the table we were passing. It was the donor family with Daryl sitting there. I knew it right away. Daryl smiled at me exactly like Timmy [the donor] did. After we talked for hours with Daryl's parents, we were comforted. It somehow just didn't seem strange at all after a while. When we heard that Daryl had made up the name Timmy and got his age right, we began to cry. But they were tears of relief because we knew that Timmy's spirit was alive."
The recipient reported:"I gave the boy a name. He's younger than me and I call him 'Timmy'. He's just a little kid. He's a little brother like about half my age. He got hurt bad when he fell down. He likes Power Rangers a lot, I think, just like I used to. I don't like them anymore, though. I like Tim Allen on Tool Time, so I called him Tim. I wonder where my old heart went, too. I sort of miss it. It was broken, but it took care of me for a while."The recipient's father reported:"Daryl never knew the name of his donor or his age. We didn't know either until recently. We just learned that the boy who died had fallen from a window. We didn't even know his age until now. Daryl had it about right. Probably just a lucky guess or something, but he got it right. What is spooky, though, is that he not only got the age right and some idea of how he died, he got the name right. The boy's name was Thomas, but for some reason his immediate family called him 'Tim'."The recipient's mother reported:"Are you going to tell him the real twilight zone thing? Timmy fell trying to reach a Power Ranger toy that had
fallen on the ledge of the window. Daryl won't even touch his Power Rangers any
more..."
Case 10The donor was a 34-year-old police officer shot attempting to arrest a drug dealer. The recipient was a 56-year-old college professor diagnosed with atherosclerosis and ischaemic heart disease.The donor's wife reported:"When I met Ben [the recipient] and Casey [Ben's wife], I almost collapsed. First, it was a remarkable feeling seeing the man with my husband's heart in his chest. I think I could almost see Carl [the donor] in Ben's eyes. When I asked how Ben felt, I think I was really trying to ask Carl how he was. I wouldn't say that to them, but I wish I could have touched Ben's chest and talked to my husband's heart."What really bothers me, though, is when Casey said offhandedly that the only real side-effect of Ben's surgery was flashes of light in his face. That's exactly how Carl died. The bastard shot him right in the face. The last thing he must have seen is a terrible flash. They never caught the guy, but they think they know who it is. I've seen the drawing of his face. The guy has long hair, deep eyes, a beard, and this real calm look. He looks sort of like some of the pictures of Jesus."The recipient reported:"If you promise you won't tell anyone my name, I'll tell you what I've not told any of my doctors. Only my wife knows. I only knew that my donor was a 34-year-old very healthy guy. A few weeks after I got my heart, I began to have dreams. I would see a flash of light right in my face and my face gets real, real hot. It actually burns. Just before that time, I would get a glimpse of Jesus. I've had these dreams and now daydreams ever since: Jesus and then a flash. That's the only thing I can say is something different, other than feeling really good for the first time in my life."The recipient's wife reported:"I'm very, very glad you asked him about his transplant. He is more bothered than he'll tell you about these flashes. He says he sees Jesus and then a blind flash. He told the doctors about the flashes but not Jesus. They said it's probably a side effect of the medications, but God we wish they would stop."

Anna called me about two weeks ago and she had a lot of joy in her voice. She was excited to tell me that she now did believe there was some cellular memory transferred from me to her with our kidney transplant four months ago. She told me that my shoe addiction had now taken up residence within her! Now that is funny because although Anna has always appreciated a good, cute shoe; she has spent the last few years of her life in a boring shuffle between flip flops, Sketchers and Converse. Since our transplant surgery she has purchased no less than eight pairs of high heeled smoking hot shoes. I know, because she calls to describe them to me every time she makes a purchase. Of all the things to transfer onto someone, she gets my shoe addiction. The only way this scenario could have played out better is if we wore the same shoe size!

Happy World Kidney Day!

2008-03-12T07:12:00.000-07:00

In case your little desktop calendar left off this very important day, I am here to inform you that tomorrow, March 13th is World Kidney Day!!!!

World Kidney Day is being celebrated in more than 80 countries and territories and 6 continents. WKD is a joint initiative of the International Society of Nephrology (ISN) and the International Federation of Kidney Foundations (IFKF) and is held every second Thursday in March.

Countless events will be taking place around the world to spread the message that Chronic Kidney Disease (CKD) is common harmful and treatable. For more information about the events, please visit the 2008 Planned Events section of the website. Unfortunately, there isn't anything going on in Portland, but it looks like there is some activity up in Seattle.

And for the record, our favorite kidney (taking up residence with Anna) is still doing great. We are both doing great. The surgery seems so long ago even though it was only four short months ago. Thank you everyone for your continued interest and best wishes for our continued health. And because I've received some hate mail (ok maybe not hate mail but update mail ...this if for you KANDACE) I'm going to try and be better about updating this site. I just honestly thought that since the big stuff was over, that folks weren't reading this so often anymore. My apologies!

So what are you all doing to celebrate World Kidney Day? I'm sending a care package to my old kidney..check the mail Anna!

What a difference a year makes

2008-02-08T17:10:00.000-08:00

Today is the one-year anniversary of Anna Nicole Smith's death. Why am I writing about this on the kidney blog? Well it just so happens that this date was also the beginning of our kidney transplant journey one year ago.

I remember hearing the news about Anna Nicole's death and needed to call my Anna right away. She is the queen of all things Hollywood you see and we have an unsaid pact to always keep one another up to speed on all the celebrity gossip. I called and to my surprise Anna didn't know anything about Anna Nicole's death. I could hear Anna's mother Diane in the background saying "Whaaaat, how did we not know that?" Come to find out the reason why Anna didn't know about this sensationalized death was because this was the day her kidneys started shutting down. Well, if I'm being technical, her kidneys started shutting down years ago. But on this date one year ago, her kidney function hit a point that she could no longer resume a normal daily routine. On this day last year, Anna learned that her life was about to change - of course none of us thought it would be such a dramatic year full of dialysis and numerous hospitalizations, eventually leading to a kidney transplant.

People tend to laugh when they say our names together "Anna/Nicole" - which is why I find it extra creepy that the death of the over-publicized sensation marked the beginning of life-changing experience for this Anna/Nicole duo. In addition, after Anna Nicole's death, reports were made public that she had been battling Lupus - the same auto-immune disease that shut down Anna's kidneys.

So even a year later, when I see the footage of that creepy Larry Birkhead and his daughter; I still go back to that place a year ago where I sat in my office and cried because it was the beginning of a immensely long and arduous year.

I talked to Anna today, she had her bi-weekly doctor's appointment this morning and found out some bad news. At the ripe old age of 33, Anna has Osteoporosis. This is directly connected to her Lupus and kidney failure. Apparently, it's a pretty bad case too and is in at least three different locations. She goes back in next week for an MRI to determine if it is anywhere else in her body and to set up some type of treatment program. She's stuck in a difficult position, the Osteoporosis, located in her lower back and hips, is highly painful, but she cannot take pain medications (they make her violently sick). She can't even take over the counter Advil for pain, because you cannot take Advil or any other NSAIDS if you only have one kidney. So I'm trying to convince her to move onto the path of Eastern medicine and try some acupuncture for pain relief. Anyone know of any good acupuncturists in the Seattle area?

So hear we are, another February 8th, getting more bad news. Next year I'm considering sleeping through this day.

Sick of being sick

2008-02-07T05:47:00.000-08:00

I was told that my immune system was compromised post surgery. I was told that if there was any sickness to catch, I would catch it, at least for the next 12 months. I guess I was feeling a little invincible because I didn't catch anything in November and December. But here I sit in mid-February and I've been sick for about a month now.

It all started with Macworld, it's a yearly event I attend for work and this year I lost my voice, total and complete laryngitis. This has happened to me before, so I didn't think anything of it. But unfortunately, this was just the beginning of my weakened immune system. After the laryngitis, I caught a cough that rivals an emphysema patient. It's such a deep ugly hacking cough that I finally went to the doctor over it last week. She told me that she'd send any other patient home, but because my immune system is so compromised, that she wanted me to take some potent drugs.

Then yesterday, just when I was finally getting rid of my cough, I've come down with some real icky and funky illness. I'm incredibly achy, my joints are in severe pain and I'm very feverish. I woke up around 2:00 am this morning drenched in sweat. I can't seem to bring my fever down, I hope this passes soon because I am sick of being sick.

That's one way to do it

2008-01-29T18:40:00.001-08:00

As seen on billboards across the great state of Texas last year. Apparently, it worked. Butch found himself a donor (five of them actually) and the transplant went smoothly.

a little show

2008-01-20T13:47:00.000-08:00

Anna and I put this little slideshow together last fall for our poker night fundraiser. I kept meaning to add it to this blog for those of you that couldn't make it to the event, but never got around to it until now. So here you go - a step back in time, complete with 80s hair and 70s fashion. Be forewarned, this is pretty long - make sure you settle in with a cup of tea first.

Kidney Vacation

2008-01-14T23:01:00.000-08:00

Anna caught a nasty flu bug that turned into some extra nasty stuff like water on the ear among other icky things last week and as one might imagine, it knocked her out pretty badly considering her immune system is so weak these days. The good news is that we learned she has been taking a consistent dose of antibiotics since the transplant –so she was actually able to recover faster than normal, which is good news.

When I went to visit Anna a couple of weeks ago, we decided to take a big trip on our transplant anniversary next November. Anna has decided that since she is likely going to be healthier than she has been in years, she doesn’t want to take a lazy holiday on the beach – instead she would like to participate in an active vacation. So we are trying to brainstorm some fun ideas for our November anniversary getaway. Currently we are considering a backpack trip down into the Grand Canyon. It’s only a three day trip – so even if it turns out to be exhausting and excruciating it will be short. Scott is recommending we play City Slickers and participate in a cattle drive, but I’m pretty sure that is more of a summer activity than late fall.

Soooooo – anyone have any good ideas? Where should we go to celebrate a year with a new kidney?

A week of firsts

2007-12-28T16:47:00.000-08:00

Today is the seven week anniversary of Anna's kidney adoption. Currently, everything is going well for both Anna and her kidney. Her tests continue to show good results and she is feeling better and better every day.

This week I added some "firsts" to my mono-kidney routine. I was able to take my first post-surgery bath - which really isn't a big deal since I'm a shower person and don't like baths too much. But I was feeling pretty icky earlier this week and when I'm getting sick, I want a long hot bath. So I checked in with my kidney coordinator to make sure everything was ok and after checking on my incision scars to ensure everything was as it should be - got to enjoy my first post-surgery soak. It was pretty nice too.

Also this week I ran for the first time. I was prepared to just take a nice stroll on the gym's treadmill as I have been doing for the past month but for some reason I just had the biggest desire to run on Wednesday. Not sure if I just had extra energy or if something inside of me was telling me it was time to turn up the speed but I wanted to run. So I did. Now by run, I mean I jogged. I'm sure some of my running friends would qualify my jog as a fast walk, but I know I had two feet off the ground at the same time so it was certainly not a walk. It felt good. I only ran two miles, but it was great to do it again and a day later I'm still feeling good so I think I'll try it again next week.

The other "first" for this week is that in about 4 hours or so, I'm going to see Anna again. I haven't seen her since I left her house the day after Thanksgiving. I'm excited to see her because you can only really check in with someone in person - talking on the phone is a limited experience. So I'm pretty excited!

Merry Christmas

2007-12-25T19:00:00.000-08:00

On the morning of Christmas Eve, my husband and I were having a cup of coffee over conversation of the demise of the Spears sisters (Britney and Jaime Lynn) when I looked up to find my mother had dressed my five-year old daughter in a vaguely familiar ensemble. It was a dress my grandmother had made for me in the early 80s, I believe I wore it for my first grade class photo. At first I was surprised to see the dress since I hadn’t even thought of it for at least 20 years, but then I was shocked when I could see that it mostly fit my daughter’s skinny frame. Although I was about a year older when I wore it, my daughter is much taller than I was at age five, so the overall fit wasn’t too bad.

Issabel flew into the living room, gave a twirl and a laugh and exited nearly as quickly as she had arrived. I looked down as tears pooled in my eyes. My husband gave me a puzzled look and asked if I was upset over our conversation about Jaime Lynn Spears getting pregnant at 16. As upsetting as that thought is, that was not why I was getting emotional. The true reason was because I specifically remember wearing that exact dress while running down the halls of my grade school holding Anna’s hand. And it was then that I realized Issabel is now the age Anna and I were when we met and became lifelong friends.

Christmas is a time for being thankful and grateful for friends and family. Christmas is a time to slow down and appreciate what matters most – from honoring family to spirituality to charity. It wasn’t until that moment yesterday morning that I absorbed the spirit of Christmas this year. I’ve been moving so fast this season, feeling behind on my decorating, shopping and getting my Christmas cards finished (by the way, if you haven’t seen yours yet it is coming) that I nearly let the bigger picture slide past me.

I hope everyone had a lovely and healthy holiday this year, in addition I hope everyone has at least one dear friend, either a new friend or a lifelong friend, that they are thankful for this season. As Robert Louis Stevenson wrote, “No man is useless while he has a friend.”

Merry Christmas!

Issabel - 2007

Nicole - 1981

Tired but happy

2007-12-20T20:20:00.000-08:00

I went back to work today- which means Friday marks six weeks since our surgery. It was a long day, but a good day. It was so encouraging to see all my friends and co-workers again and I was quickly reminded how lucky I am that I get to work with really great people. I did pretty well the first half of the day, but after lunch I could feel myself crashing so I snuck off around 3:00 to take in a quick nap in one of our conference rooms (luckily it is furnished with two comfy couches). Unfortunately my mother (of all people) called me and woke me up, so my nap was only about 15 minutes, but it did enable me to actually make it to the end of the day.

On the Anna front I have VERY good news. She had some lab work done on Wednesday and her white blood cell count jumped up 1,000 points!!!!! Yipee and Merry Christmas! I am so happy I could cry. No kidney rejection here folks!

Update

2007-12-16T13:16:00.001-08:00

I attended a holiday party last night and was scolded by several of my friends. Apparently I haven’t been very diligent about updating the blog in recent weeks. I figured it would be boring for folks to hear that I’ve been lazy and doing very little, but that is at least an update and people are looking for any kind of information right now.

I continue to get back to a more normal routine with every passing day. I head back to work on Thursday and am looking forward to having social interaction with people beyond those that are pumping my gas and bagging my groceries. I have reduced my downtime during the day to a single nap around Oprah, I mean 4:00, I’ll miss my nap time the most when I return to the office this week.

Anna has reduced her appointments at the hospital to bi-weekly visits. She goes every Monday and Friday to have her blood and urine tested. Her doctor continues to be very pleased with her kidney function – everything is working well as it should be right now.

Last week we did get some uncertain results from the lab work. Anna’s white blood cell count was dangerously low, so low that her doctor was very concerned she was facing an infection somewhere in her body, potentially signaling the start of kidney rejection. Her orders were to go home over the weekend and not worry – yeah right. She returned on Monday and her white blood count did go up, but by very little. Again her doctor told her not to worry and that they would test again on Friday. This Friday the doctor decided that since her kidney was functioning so well and because Anna was showing no additional signs of infection (such as a fever) that they were going to tweak her medication levels and see if that would positively impact her cell count. Of course, when you are dealing with an organ transplant – you are never truly safe from the chance of rejection, but for now, things seem to be under control. We will just have to keep monitoring her white blood cells and pray for her count to continue to climb.

On a lighter note, I was reminded last night of a conversation I had with my kidney team two months before surgery. I was told that people never ask to see your nephrectomy scars post surgery as it is just a little bit too intrusive and personal for most folks. For the record, I want to say that my friends are indeed overly intrusive as I have been asked to show my kidney scars more times this week that I can count. The first person to ask to see my scars was my friend Dianne. I was at a holiday party on Thursday and it was the second thing she asked me after the obligatory “how are you feeling” question. I showed her my little laparoscopic scars, but told her she would have to wait on the big incision as it was below the beltline and I wasn’t about to drop my pants in the middle of the annual Maxwell PR party –that is, not without at least three more glasses of wine (kidding, ha ha). Then at my company’s holiday party last night, I was asked many, many times to show my scars. Talk about busy bodies huh? Just kidding, I don’t mind!

How much?

2007-12-05T09:58:00.000-08:00

Ever wonder how much it costs to have an organ removed? While I was trapped on the Oregon Coast this week by the storm of the year, I received my statement of hospital services bill for my half of the kidney transplant. I always find it so interesting to pour over medical/hospital invoices; it’s shocking to see how much medical procedures cost.

My pre surgery CT scan cost a little more than $1,000, the ‘nephrology consult’ the day before surgery was pretty cheap at just over $300. And then there were costs associated with the surgery itself. My hospital stay from Friday through Monday was nearly $5,000, my pharmacy bill and medical supply fees were nearly $1,500, my x-rays and anthesia came in just over $500. They even added a charge to my stay for spending time in the recovery room for just over $1,200. My actual kidney nephrectomy cost just under $7,500. When everything is said and done, my total charge comes to a whopping $19,344.00 Gulp – and remember that doesn’t include Anna’s costs. My procedure was a fairly simple kidney removal, she had other fees associated with her stay that I did not incur. She stayed in the hospital longer, had to have three days worth of anti-rejection medication administration onsite at the hospital and she still returns to the hospital every other day for lab work to ensure everything is functioning as it should.

I feel like one of those Mastercard commercials:
Gas from Portland to Seattle: $50
Pre-surgery hotel room: $200
Kidney nephrectomy: $19,344
Seeing your best friend healthy for the first time in years: priceless

Recovery

2007-11-29T10:45:00.000-08:00

I’ve been home now for six days. Tomorrow will be three weeks since our surgery. My, how time flies.

I've found it to be been much harder to recover at home with my nearly five year old crawling all over me. Children have an amazing ability to sap all energy from you.

Good news on the Anna front – she was able to have her neck catheter removed on Monday! (See picture of Anna in sidebar to see catheter). They didn’t have to put her under as we thought; instead her doctor just numbed her up and removed the tubing while she was awake. Apparently, it was still a little bit painful, but Anna is VERY happy to have it gone.

On a day to day basis, Anna is still living with a significant amount of pain from the surgery as well as a somewhat numb right thigh. Her doctor told her that these conditions are both related to how thin she is right now. Because she currently has very little body fat right, her new kidney is pressing on nerves that are making her leg numb. The only remedy is for her to gain some weight. Her high pain level is also related to her extremely thin frame.

I’m trying to get back into a normal routine, but it’s difficult when you need to stop to rest as much as I need to right now. It’s very frustrating for me as I’m always on the go. My day goes something like this (give or take on the times):

8:00 – take Issabel to school
8:30 – come home and take a little rest
9:00 – drink coffee, do some laundry, call Anna
10:00 – take a little rest
10:30 – do some other miscellaneous chores, check email
11:00 – take a little rest
11:30 – get out of the house,take a walk, get a little movement in my legs
1:00 – take a nap
2:30 – miscellaneous stuff, and more resting
4:30 – pick up Issabel from school
5:00 – dead to the world

I was very busy yesterday and didn’t take a single nap (unless you count the half hour that I fell asleep on the couch before I went to bed for the night). I’m paying for that today, I woke up with a horrible headache and my pain level was up higher than it has been since I came home. I probably should have taken some of my prescribed meds, but I popped two Tylenol instead and am feeling better now. I think my body is just trying to tell me that I am not recovered yet and to back off for a little while longer before trying to resume a more normal schedule.

Well – it’s time for me to take a little break. I’m taking it super easy today.

Photo Extravaganza

2007-11-23T21:16:00.000-08:00

I finally got a chance to upload my pictures from our hospital stay - so here is a little visual stimulation to go along with all my wordiness. Be forewarned, I'm including actual surgery pictures below - if you are squeamish, stop now.

Pre-op day at Virginia Mason Hospital -everything looks good!

3 Meals - Scott's food on top, Anna's food to the right and my "meal" of Jell-O and chicken broth. Mmmm tasty!

Prepping for surgery with the Citrate Magnesium drink, bleck!

One last hug before surgery

Homeless kidney

Another kidney shot

Anna's discolored eyes - a telltale sign of lupus

Swollen and sore, but going home!

Saying goodbye at the hospital, for a few days

Two and a half days worth of pills for Anna

My surgery reminders - four small incisions and one large one

Only one cut for Anna, but it's a BIG one!

Anna filling her 'tackle box' for the week - notice the two GALLON bags of drugs on the bed.

Recovery and a movie with Anna's mother Diane (our diligent nursemaid, chauffeur, cook, etc, etc)

Having fun on one of our brief excursions away from home

Remembrance bracelets from Bob & Diane to commemorate our big day

Saying goodbye and going home. Talk about a crazy two weeks!

Happy Thanksgiving

2007-11-22T12:41:00.001-08:00

Anna and I would like to wish all of our friends and family a very safe and happy Thanksgiving holiday this year. We are so grateful for all the support we have received from all of you and are so thankful that Anna is able to celebrate this holiday with her new kidney.

Quick update

2007-11-20T12:29:00.000-08:00

Yesterday, Anna had another doctor's appointment at the hospital so I decided to tag along to get out of the house for a bit. Her appointment went well and blood results confirmed her new kidney is doing great. Her phosphorus and potassium levels though are dangerously low, but she has a plan to get those levels up, so hopefully things will become more stable soon.

After we were finished at the hospital we went out for lunch and then did a little bit of holiday shopping. It was a big day for us and we pretty much crawled right into bed as soon as we got home -- and here at 12:30 the next day are still in bed, lol.

Today is the first day that Anna's mother Diane doesn't have to escort one of us to the hospital since we were released last week. We are considering catching a movie today, but we will have to see where we are energy-wise this afternoon. I'm mostly excited for the movie theatre popcorn.

Anna still has her neck catheter, we were hoping it would be removed yesterday but it sounds like she needs to be put under in order to remove it. Which makes sense, considering it was surgically implanted eight months ago. This will hopefully happen in the next week - which would be welcome for Anna as she cannot shower due to the catheter, but she cannot take a bath, due to the incisions. So the poor thing has to bathe in two to three inches of water - I can imagine that is not fun.

As for me, I'm recovering just fine. I got by in the past 24 hours with only one pain pill - I was hurting this morning, but am feeling good now. I'm just very tired.

One week ago today...

2007-11-16T16:52:00.000-08:00

It's hard to believe our kidney transplant was a week ago today. The past seven days have flown by.

Today is a better day than yesterday, Anna is feeling much better and we spent most of the day resting. I had to go back to the hospital for my post-op check up this afternoon and it went well.

Sherry Grindeland at the Seattle Times wrote an update in her column yesterday on us. You can see it here if you are interested: Events will be a love-in for words. And if you missed her first article on our kidney transplant, you can read it here: What's a Kidney Between Friends?

Rainy Thursday

2007-11-15T22:03:00.000-08:00

We had a bit of a rough start today. Anna had to get up super early in order to return to the hospital for her first round of anti-rejection medication. What we didn’t realize is that this is actually a long process and not a quick in and out procedure as one might assume. The easiest way to administer the anti-rejection meds post surgery is to use her existing neck catheter (that she used for her dialysis) to make the process faster and more efficient. The entire session is similar to that of chemotherapy – another process Anna unfortunately has experience with – it lasts four hours and the nurses affectionately refer to it as “flu in a bottle.” Anna left the house around 7:30 this morning and didn’t return home until after 4:00. She was tired, had the chills, nausea and had a soaring temperature. Thankfully she is doing better now. She was supposed to head back to the hospital and repeat this process tomorrow, but she was fortunate to learn that she can wait until Saturday for the second round. And hopefully they will remove her neck catheter at that time. She is very excited about this as she hasn’t been able to take a shower in 8-months because of the catheter – I’m guessing she will empty the hot water heater enjoying her first shower when it finally comes around!

I had a very different day today. Scott left this afternoon as our little girl is missing her parents fiercely right now. I have to stay here as I still have a post-op appointment to go to up here before I can go home. Scott said we could do whatever I wanted this morning, so of course I said “let’s go to IKEA!” So this morning I tried running through my typical morning routine starting with a shower followed by hair and makeup. I thought I was recovering quickly from this transplant, but attempting my normal routine proved to me I am not yet “back” to total health yet. I took a shower – then had to sit down for a rest and a little Good Morning America. Then I blew out my hair – followed by sitting down again for another rest. By the time my teeth were brushed I had come to the realization that make up was unnecessary for a trip to IKEA. What should have taken 30-40 minutes took me over an hour and I didn’t even finish all of my objectives for the morning.

While Scott and I were taking a pre-shopping break over a cup of coffee in the IKEA cafeteria, Anna called me to offer status on her appointment. When she found out I was at IKEA she demanded I ask for one of those little Rascals to ride around on at IKEA, she was worried it would be too much walking for me to handle. Scott agreed so I saddled up. Thank goodness we were there earlier in the day, because I could have easily taken out a few slower moving folks with that electronic go-cart thing. It was fun, but hard to maneuver.

After we returned home, Anna’s cousins Jackie and Kimmi and second-cousin Hannah came to visit from Astoria. Unfortunately, Anna was still in her treatment and wasn’t able to meet 8-month old Hannah. Even more unfortunately, I forgot to ask them to bring us a pizza from our favorite pizza joint – Fultano’s. That would have been wonderful.

I’m pretty saddened by the fact that Anna is still struggling right now. I wasn’t prepared for her health to be so impacted nearly a week post surgery. I never expected her to be 100%, but I did think we would be recovering on a similar schedule. Maybe it was unrealistic of me to expect her to be rejuvenated, but I was really hoping the darker days would be behind us at this point. We’re hoping she makes big strides over the weekend.

When Anna crawled out of bed this morning she placed her medication supply on the bed. We call it a tackle box because it is the biggest darn pill box either of us has ever seen. She opened up the 8:00 am slot to expose possibly 30 pills to take upon waking up. She started saying that she didn’t have the strength to take all those pills, but in true Anna form, quickly stopped herself and said “No, I’m not going to complain about taking all these pills. I’m lucky to be here today and be able to take these pills. I’m not going to complain.” That’s why I adore this woman so much, she lives every day in such pain and yet she still chooses to start off with a positive attitude. We could all learn something about living from Anna.

Anna's Home!

2007-11-14T20:02:00.000-08:00

Anna was able to come home a day earlier than we expected – yeah!

We’ve spent the afternoon comparing our hospital stay, our current aches and pains and overall experience. A few things we’ve learned since the surgery:

A good homemade pecan pie is just as good as two doses of Percocet
When your belly is full of air, you can feel your innards shifting when you roll over
It only takes a three inch incision to remove a kidney, but sometimes it takes a 10-inch incision to put it back inside
There is no need to wax before surgery as the medical tape is just as effective as a salon treatment for hair removal
Pushing the nurse call button multiple times does not bring them to your bedside any faster
After going through a major surgery, walking around the block is considered heavy cardio!
Day five is when the incision itchies start
Pain is temporary
Incisions hurt, puking with incisions is excruciating
As miraculous as modern medicine is, it takes on an almost mystical feel when your life is positively impacted by it

Now that we are both home from the hospital I’ve come to realize our biggest current challenge is to keep from laughing, because nothing hurts our wounds more than a big belly laugh – and that is nearly impossible to avoid when the two of us get together.

Some pictures Bob took on surgery day - first one with Anna and Rick post surgery, the second of the boys (Scott, Josh and Brian) wasting time during the surgery playing (what else?) poker.

Let the recovery begin!

2007-11-13T11:19:00.000-08:00

Right now I am sitting in Anna’s comfy bed catching up while she waits out a few more days at the hospital.

First I want to say thank you to Anna’s father Bob for updating the blog while I was in recovery mode on Friday. He could have popped on and said “girls are doing fine, more later” but instead he wrote such a lovely update for everyone. Thank you again Bob.

So where do I begin? Somehow, I never got to that nervous place that I expected to find before surgery. I kept waiting for it to hit, maybe when I woke up that morning, maybe when I checked in at the surgery desk, I was certain I’d be shaking with fear when I was waiting alone in the operating prep room. But I guess my anticipation for the worst kept the anxiety away. I spent at least an hour talking with the anesthesiologist, the surgeon, the nurse assistants after I left my family and before my surgery began. I was chilled in my lightweight gown and fuzzy hospital socks, but was well entertained. I had my IV started and my epidural administered. And I waited. When I was wheeled down to the surgical room and I remember it seemed very crowded, not with people but items.

Before I realized it, I was being woken up in the post-operative room by a friendly voice telling me it was all over. I was congratulated several times by different voices and had a couple of comments regarding one of my hidden tattoos, which I found confusing in that moment. I also immediately learned that Anna’s surgery was over as well and that she was doing well, but she would not be brought into the ICU post-op room with me. I waited there for many hours. I was told several times that I was “recovered” enough to go to a room, but unfortunately the hospital was full and I would have to spend a longer period in the recovery room while we waited for more permanent digs. I spent this time listening and waking up. I was in pain, that was certain – but it wasn’t the pain I was expecting to feel. I was more confused I think. A couple of hours into recovery I asked for my glasses so that I could at least see what was going on around me. Even though I had been previously told that Anna was not in this recovery room, I kept propping myself up on my elbows to take a peek for her.

After another comment on my love for shoes, I put the tattoo comments together. The site of the kidney removal incision was next to an existing pink stiletto shoe tattoo I have – few people have seen this tattoo before so it was bewildering to me to have strangers asking about it. Suddenly, everyone working on me, knew of my shoe addiction. There is little modesty when surgery is on your agenda.

A few hours later I was finally told I could go up to my temporary home. The gurney ride from the fifth surgical floor to the 17th story “penthouse” room was incredibly long and a little painful. Every bump, every turn could be felt inside my belly.

When I finally got upstairs I had to wait in the hall for another 15 minutes or so until they could finish prepping my room. I didn’t like that as I felt very exposed and wanted some privacy. By the time I got into my room and moved in my permanent bed, hooked up to new lines and wires and all of the post-surgical must dos, it was close to 3:00.

Anna was still in recovery at this time, but I was told that she didn’t need to be in ICU, she was just there so that she could have more privacy while she waited for a room – and hey, I got a single room so I was excited that I wouldn’t get a roommate for the night.

I got a gaggle of visitors around 4:00 and was somehow in pretty good spirits and my overall pain was pretty low considering what had just happened to my body. I thought that just maybe the hard part was over.

My night was one of those typical long hospital nights where you don’t get any real sleep because the staff is checking your vital signs on an hourly basis but somehow it passes incredibly quickly. I realized pretty early on that my blood pressure was going to be an issue for me this weekend. I had consistently low blood pressure results, so much that I often had to have multiple readings done, sometimes with the nurses stopping my IV in my right arm so that they could try a reading from that arm to see if they could get better results.

When morning arrived, we learned that Anna’s new kidney was working amazingly well –they were replacing her catheter contents hourly, which means it was functioning quite well. We also learned that she was just waiting for her room to become empty; she was going to be just down the hall from me!

I had more visitors on Saturday, but I missed even more – so I want to apologize to those of you that came to visit me and I slept through you calls and visits. I’ve always been this way when I am sick or injured, I sleep through recovery. I shut out the world and I sleep. I am sorry for those of you that came to visit and I didn’t even know you were there, if it is any consolation, I bet the people I did talk to on Saturday had the same feelings about their time with me.

My blood pressure remained high on Saturday but in addition, I started getting really nauseas. The medical team really wanted to get me up and moving and I was fine with that, but every time I started getting up and out of the horizontal position, I also became very green. They started me on anti-nausea meds at this time and it helped a little but I started to get very angry at this point with the staff because I did not want their gentle push to stand, not if it meant I was going to be sick all over myself. At least Anna had her own room by now, that was good news. The not so good news was that they were evaluating her to determine if an additional surgery would be necessary. She came through the transplant well, but he had some excessive bleeding and was considering a second surgery to insert a stint. We were just going to have to wait and see how her healing process progressed.

I remember thinking Saturday was harder than Friday, so I figured Sunday would be a better day overall. I was wrong. Sunday was my tough day. I’m glad my visitors all came on Friday and Saturday, as I would have likely turned them away on Sunday. My blood pressure continued to dive while my nausea rose. The nurses pressed me to get out of bed and my husband nicely asked me to call people. I wasn’t having any of it, I just felt bad.

The good news though was that we learned Anna would not need an additional surgery, so I figured my uneasiness was minor in comparison. Oh, and I should mention that through Sunday, I had still not eaten solid food. The heartiest thing I had eaten since Thursday morning was jello. Yum.

The nurses were starting to think I was a difficult patient because I was almost refusing to get out of bed. I finally told them’fine’ and I’d prove that I could walk, so I walked all the way down to see Anna and back. About halfway out of the room the nurse tried to get me to turnaround, but if I was up – I was going to see Anna, not stop halfway and go back to the room. Unfortunately, I felt so ill, that I didn’t stay more than 20 seconds in Anna’s room.

They changed my pain meds on Sunday and it did help somewhat, but I was just feeling so poorly that I wasn’t noticing the impact of the updated meds immediately.

I woke up on Monday morning around 5:00 a.m. that was my indicator that I was feeling better. I wasn’t sleeping as hard anymore. My entire medical team came by on Monday morning, lots of different doctors coming to look at my incisions, tap on my machines and ask me “on a level of 1-10, what is your pain level?” I knew that I’d most likely be heading home this afternoon, but they wanted me to try oral pain meds first to make sure I could keep them down.

Checking out of the hospital is a long process, they started unhooking me around 10:00am and we didn’t walk (or should I say roll) out the hospital until just about 5:00pm.

I did get to spend about 20 minutes in Anna’s room before we left, and that was nice as it was the most amount of time we had spent together since the surgery. I just wish she was coming home with me today. While I was visiting with Anna, Scott was talking to a woman in the elevator, when he told her what we were doing there she said “do people actually do that?” I wonder if she thought kidney donation was some kind of urban myth? Funny.

I found out at checkout that I don’t have any actual stitches, so that means nothing to remove and I can shower! That was the first thing I did when I got to Anna’s – removed that hospital stink. It was one of the best showers I’ve ever had. I’ve still got some tape residue here and there, but overall I’m feeling so much better.

I’ve already learned that getting out of Anna’s trendy & hip platform bed is the hardest part of my day. I have to call for Scott to hoist me up because it’s just too painful any other way right now. So far, the pain meds I was sent home with are treating me well and if everything stays on track Anna will be home on Thursday, which would be lovely.

It has been a great day!!!

2007-11-09T20:36:00.000-08:00

Hi everyone. This is not Nicole as she is a bit distracted tonight in the hospital recovering from a short kidney. This is Anna's dad, Bob. The day finally came and it turned out just as the fairytale that has played out over the past several months.

As Nicole lay out in last nights post the day started early for both she and Anna. The only time they saw each other today was entering the hospital, soon to be separated and prepped for the day, but though they were apart they were in constant thought of one another. This story gets more powerful as each day unfolds. These are friends that truly have nothing but the others interest first, I know you have heard that or picked up on that during the months. But as the father of the receiver this point brings me to tears nearly every time I consider it.

Nicole and Scott stayed at a downtown Seattle Hotel as Nicole prepared for the next morning (read yesterdays post for more detail) and she says she slept like a baby or log or one of those heavy sleep descriptions. What strength, as she mentioned she might be in denial but I think it more of determination. She said after surgery that she just knew this is what she was suppose to do, and you know how that is when you know you are doing that which you are called you are at peace.

Nicole was in the operating room around 8:40 this morning ready to "give it up", while we could not see her prior to the surgery we heard her laugh and positive and strong attitude permeate the "induction" room. Soon she was knocked out and quiet... finally. This woman is one bundle of energy, never leaving a moment of life untouched or useless.

At around 10:30 Scott was notified that she was out of surgery. The doctors reported to him that the removal went as well as is expected, minimal bleeding and all to plan. We could not have asked for more, though it was a couple hours before Scott could see her. Now true to character Nicole brought a camera and asked the surgery staff to get pictures of the kidney (a warning as they WILL be posted as soon as Nicole gets out).

Let me give a side note at this point. Scott, he is the unsung hero of this story. This man offered his kidney to Anna and even fought over this issue with Nicole, a brave soul he is for this point alone. And it wasn't until the DNA results came back that he even backed down. His quiet and loving support for Nicole, Anna and Rick has gone without much fanfare, but he is a huge part of this story. I know Rick has been encouraged by his friend Scott. As Anna's mom and dad we have always loved Scott, but maybe it's a little deeper and more meaningful than ever before. Thanks Scott for being there for all of us.

What is the first thing Nicole asks when she comes to? Not when do I get to eat, where's the chocolate, but "Is Anna okay?" Not am I okay, were there any complications, etc? "Where is Anna?" Her mind was immediately on Anna. In the immortal words of my hero Forrest "That's all I have to say about that".

So Anna comes next, she goes in around the same time as Nicole so they can prep and make the incisions to receive her new life which lies just across the hall. The surgery again went according to book. As the doctor told us, as soon as the surgery was completed, that it went perfect and her new kidney began to function immediately.

I think Diane and I have been so confident of the end result (we just knew with all the miracles that have occurred to this day that God would not fail to complete this miracle). At this moment I think something inside took us to a new realization of what we had experienced with Anna and Nicole. I think it started when we first heard that the removal of Nicole's kidney went flawlessly. We both choked up a bit as we imagined that gift being carried to Anna from Nicole's sacrificial love. I think we saw a deeper side to what had occurred. I thought of the words of Jesus when he said "No greater love has one for another than to lay his life down for his friend". In the mortal being this is as close as we get to the realization of the gift that was laid down for us.

Scott was notified at the same time that we heard of Anna's successful transplant that Nicole had awakened and he could go see her. He went with great anticipation with gifts in hand for his love. We wanted to go too but it was apparent he wanted to be alone with Nicole. So we waited.

Now by this time we pretty much took a big hold on the waiting room as cousins Josh and Brian came early from Oregon (they arrived before Diane and I) and Jared and Noel with our grand kids Braden and Emma came to see auntie and of course Nicky (who is due December 7 but was clearly instructed by Anna that she could not go into labor early and miss this day). At some point I think the staff thought a family was trying to use hospital facilities for a reunion...they came over and said something like "Are you all here waiting for someone?" We played with the kids and the guys played cards, we did puzzles and some even nodded off a few times. It was a wonderful time with family and friends that we will always remember, the love and support. We need to mention that Rick has been an unending support for Anna and as parents we could never ask for more for our children. We have been very fortunate to not only have the children we have but have been blessed with their choice of spouses. Both Rick and Noel are like our own children and we love them very much. Don't even get me started on our grand kids as there is not enough time or room in this blog.

We felt the presence of so many that have been there for Anna and Nicole through out the ordeal, in prayers, thoughts, calls, e-mails, letters and financial support. We realized the strength of all of you today.

Back to Anna and Nicole. When Anna awoke the first thing she asked was "Is Nicole okay?"… sounds familiar. They wouldn't say much just she is okay. That wasn't good enough for Anna, she asked (well maybe demand would be a better word) to know details, which by hospital standards was not kosher to give too much detail of the donor or recipient in the first day or so. But between Scott and Rick and then the rest of us they were both told more details. Anna and Nicole were not allowed to see each other and no matter how much they worked the system they could not usurp hospital policy and room together. But between the two of them this policy is not final…wait for more.

As soon as they both were fully awake, aware and pain managed they found out what rooms the other was in they began to call each other. Seems they had problems getting through...because they were both calling at the same time...they wanted to hear it from each other…"How are you?..."Are you in pain?"...and what ever else those two have found to talk about for 28 years.

Nicole was told she was to share a room with someone else (but not Anna) but when said and done she received a room alone at the top of the tower. Thank goodness, she deserved the penthouse. It took several hours to get her to a room from post-op due to the lack of rooms which gave opportunity for the private room.

Anna will remain in ICU tonight but only because they had no room elsewhere in the hospital for her. Tomorrow she should move to another room and they have hopes that they will be roomed next to each other (as Nicole told the staff, "you might as well room us together because we're going to be in each others room anyway") Tomorrow they should both be walking and nothing will hold them down or apart.

Both are in a lot of pain of course but it has been managed for the time, they both look very good, upbeat and thankful. In fact I think Nicole was ready for balloons and champagne tonight. (We'll see after the epidural wears off).They will have hard days ahead but they are both confident. Nicole could be released Sunday but more likely Monday and Anna a few days later, that alone is amazing. They will both recover in Renton for a few weeks at Rick and Anna's home with Diane nursing them for this period on the weekdays and Rick and Scott taking over on the weekends.

Sorry for the long post but this is only part of today's many stories and not the end of the story. We will always remember this story started with a prayer of a little 5 year old girl asking God for a friend and He gave her just that and much more, 28 years ago.

Please continue to keep Anna and Nicole in your prayers. Thanks to all who have followed and supported the story of these woman. We want to give thanks to our Lord and Savior Jesus for his faithfulness throughout. He has compacted a lot into the past 9 months since Anna's kidneys failed. He has seen us all through pain and despair to hope and tears of joy. We have all grown through this and we have a deeper understanding of family and friends and the faithfulness of a God that loves us with an every lasting love. We only hope we have learned to be there for others in their hour of need as you have been in ours.

God Bless,

Bob and Diane O'Bryant

Pre-op Day

2007-11-08T23:02:00.000-08:00

It is currently 10:00 pm the night before our surgery. Anna and her husband Rick just left our hotel room but we will see them in a few hours. I need to check into the hospital tomorrow morning at 6:30 am and even though Anna doesn’t need to be there until after 7:00, she is insisting that we walk into the hospital tomorrow together.

It’s nearly impossible to genuinely express how I am feeling right now. I’m not feeling anything that I expected. First off, I thought I’d be starving at this point. I was allowed to eat breakfast this morning, but have been on an extremely limited, liquid diet ever since. I was convinced that I’d be delirious with hunger pains by now, but currently, I’m not even hungry. I was lucky to have Anna wake up extra early this morning and make me a big, hearty breakfast to kick start my day. I did get a little hungry around 6:00 this evening, so I sent Anna and Scott off to eat dinner (where I couldn’t see them) and I hit the gym here at the hotel, exercise always makes me lose my appetite for a bit.

I was also expecting to feel a good amount of anxiousness by this time of the day. Maybe I’m in some sort of strange state of denial, but I’m not scared and I’m not apprehensive, I’m just focused. After our long day of pre-op appointments, Anna and I walked around downtown Seattle this evening. We were gone for several hours and we just walked and talked. We even got caught in a small rain shower, but we continued walking and talking. It was nice spending some time with her like this before the surgery.

I’m currently flushing out my system, literally. Today in pre-op I was given a bottle of Citrate Magnesium to drink this evening. For those that don’t know, this little cherry-tasting concoction cleans and empties your bowels. The surgeons need as much room as they can get to cleanly remove my kidney, so flattening everything out down there is necessary. As much as I’d love to go for a stroll right now, I’m stuck in my hotel room until I’m thoroughly empty. This is not the most fun process, but at least it keeps me distracted from other things. Oh and for the record, Anna is able to eat and drink until midnight and she does not have to ingest this foul drink. If she wasn’t certain that I had her best interests at heart, she is now.

On Friday, I expect to be prepped and ready for surgery by 8:20. They will take me in first but will not make any incisions until Anna has checked in and has been prepped for surgery. We met with many different people today and most folks gave us a different estimate for how long the surgery will last. Most of the guesses came in between two and four hours. Anna’s surgery will start approximately an hour after I begin. From what I learned today, we will be in adjacent surgery rooms and once my left kidney is removed, they will walk it across the hall and implant it into its new home. At that time, they will clamp off my insides and stitch me up. Anna will have a four inch incision cutting diagonally across her lower stomach on the left side. I will come away with four laparoscopic incisions on my stomach/side and one large four to six in incision below my bikini line.

It doesn’t sound like Anna and I will see much of each other tomorrow. She may have to spend the first night in the ICU until the medical team is certain she can be moved to a standard room. Anna gets a full and private suite, I might get to room alone, but I also might have a roommate. We won’t know until tomorrow.
I repeatedly asked if Anna and I could share a room, but they have a strict policy to keep the donors and recipients separate in case of kidney rejection. For me, this is just more motivation to get moving after surgery so that I can visit Anna in her room.

I am being told to expect to stay in the hospital over the weekend and possibility into Monday. Anna will likely stay in the hospital for an additional two-four days.

Tomorrow this journey will change for us. Up to this point, we wondered if this kidney donation would ever come to be. There were days when I thought the world (and our bodies) were working against us. In the beginning, there were days I was afraid Anna might not make it to this place. But tomorrow I get to save my best friend’s life. Tomorrow I will wonder about different things: I will wonder if her body will accept my kidney, I will wonder if my pain will go away, I will wonder if and how our friendship will be altered. But I will no longer wonder if this transplant will happen. I will know that we did everything in our power to make a difference. I have to have trust and faith that these efforts will be enough.

Oh and in case anyone was wondering, Anna and I both love flowers J and you can never go wrong with chocolate in my eyes (don’t even think about that with Anna though).

Somebody will update this spot for me tomorrow as I doubt I’ll be in any shape to blog, but I promise there will be some kind of update. And there was a nice article in the Seattle Times today on our kidney donation, you can read it here if you are interested: http://seattletimes.nwsource.com/html/eastsidenews/2004001309_grin08e.html

Getting Close Now

2007-11-06T22:29:00.001-08:00

My husband and I will leave for Seattle tomorrow evening in preparation for Friday’s surgery. It seems like we are all running around like crazy people trying to tie up loose ends before tomorrow arrives and I hope I have enough energy to make it through Wednesday.

This week hasn’t been ideal health wise as I am still trying to kick this cold I caught last week. I’m over the sinus portion of the cold, but I have a trace of a cough left and sound like a 30-year chain smoker. Hopefully I’ll be healthy by preop day on Thursday. I can’t mentally put myself around the idea that we might have to postpone things, and I just can’t go there right now.

Anna is having a tough week as well; she was awake and sick all night long. I was worried that she had come down with the flu but she assures me it was just “bad dialysis,” yet another lovely annoyance she has to live with during this process. I’m happy the next time I see her (tomorrow night) she will have finished her last round of dialysis. As miraculous as dialysis is, we are all so happy that this will be over for her soon.

I think we’ve checked off most of our to-dos, dog sitter, house sitter, kid sitter – check, check, check. Clean refrigerator, water plants, charge iPod – check, check, check. I still need to get everyone packed but its only 10:00 pm so I’ve got time. I’m jealous Anna only has to pack for the hospital stay. I’m trying to figure out what to pack for pre-surgery, what to pack for the hospital and what to pack for my post-surgery stay at Anna’s. I did learn last night though that Anna and Rick put on a new coat of paint in their recovery room (master bedroom) and bought all new linens, if I weren’t going to be focused on my missing organ and four-to-six inch incision, it would be like staying in a fancy hotel.

I promise to post an update before surgery this week. I will be stuck in my hotel room on Thursday night with plenty of time to ramble. And I hope to get either Scott or one of our friends to update the blog on Friday so that folks can know how amazingly well the surgery went for both of us. More to come.

And for fun - I'm posting this old picture of me and Anna from high school - get a look at that hair! And yes, that IS a Michael J. Fox poster in the background :-)

Breakfast, Blood Work & Fireballs

2007-11-01T19:28:00.000-07:00

This morning I was able to attend Donate Life Northwest’s annual Lifesavers Breakfast. The keynote speaker was the esteemed musical director of the Oregon Symphony, James DePreist. In addition to being a local celebrity here in Portland, Mr. DePriest is also a kidney recipient. He received a new chance at life courtesy of his friend, Susan Baumgardner in 2001.

Mr. DePriest is an absolutely wonderful public speaker. His speech made me laugh and made me cry. He told of his experiences going through dialysis in different countries from Norway to Spain and across the United States. I never put much thought around the idea that dialysis in different countries would have a different process and experience.

After the event I was lucky enough to meet his donor Susan and although it was a short introduction, it was great to have a talk with her. I hope to have some time to get to know her better in the future.

I was reflecting on this very idea while I was running this afternoon. I’ve met some amazing and wonderful people through this kidney donation process. From kidney donors and recipients to hospital staff that I seem to interact with on a daily basis, I’ve genuinely been grateful for the people I have come to know in the past few months. I’ve also learned more about some of my existing friends and their personal experiences with kidney disease, organ transplants and other related circumstances. Overall, this has been such an amazing journey for me to expand my little world. It’s certainly an advantage to organ donation that I didn’t expect to receive when I went into this process.

Unfortunately, this morning’s breakfast was the high point of my day as I seem to have come down with a nasty cold. Because I am eight days away from the surgery, I am supposed to stay away from all over the counter medications – which apparently include cold medicine. Since I can’t take any kind of decongestant, I have opted instead for a post-Halloween sinus draining treatment that centers on frequent ingestion of Fireballs and Altoids. It isn’t the most effective treatment I’ve ever had, but at least I’m not putting stuff in my body that has been deemed off limits by my medical team.

Anna had her final blood draw this morning in Seattle (for the final antigen match) and I went to a local hospital yesterday for mine. And yes, I went in full Halloween costume. It made the tedious task a little more interesting. I still rest on my earlier statement that the phlebotomists at Virginia Mason are the best around. I’ve got a nasty bruise from yesterday’s blood work. Just proof that Anna and I are in good hands.

The real kicker about yesterday’s blood work though was that the hospital staff wanted to send me away with my own blood sample and have me mail it to Virginia Mason myself. It took about half an hour but they finally figured out the process was for THEM to ship the blood work, not me. How bizarre would that have been for me to be walking around town with 10 vials of blood on Halloween? I suppose if I had dressed up as a vampire instead of a fortune teller it might have worked out nicely.

Black Coffee

2007-10-29T23:31:00.000-07:00

I received a special oversized envelope in the mail today, it was my pre-surgery information packet from Virginia Mason Hospital. It includes a schedule for me for my pre-op day next Thursday as well as some general information on how to prepare for the big day. I already knew I was allowed to eat breakfast next Thursday and then nothing until after my surgery on Friday. I knew liquids were allowed so I thought I'd be fine as long as I could drink coffee, my beloved beverage of choice all day long. Well it turns out I can drink coffee, but I can't have any cream in it - so I'm a little worried now. I'm not a black coffee type of gal. I also can't chew gum during this time, strange isn't it? But those are the rules and I've always been the type to follow the rules so I'll abide.

My pre-op day looks jammed packed. I first see the transplant nephrologist that I met with back in September, then I meet with my transplant social worker, then I meet with my transplant coordinator, then I meet with the transplant surgeon. This is a different surgeon than I met with in September, but I remember this is a surgeon that Anna met with earlier this summer and she had very good things to say about him. After all my morning meetings I go back to the lab for more testing. I'm starting to feel like a pin cushion. After my lab work, I get a short break for my "liquid lunch" -- that'll be fun, and then it is off to the Pre-op clinic for surgery registration and more information.

I need to give Anna a call tomorrow and find out what her schedule is like for pre-op day. I know she has her own meetings to attend and prepare for so we won't be able to do this side by side as we have done in the past. I know she also has to schedule her final dialysis session -- doesn't that sound great? FINAL DIALYSIS SESSION. I don't know if that will happen on Wednesday as is her regular schedule or if they will have her do it on Thursday. Regardless, with any luck she won't have to go back for a very very long time.

13 days

2007-10-27T08:28:00.000-07:00

Our surgery is getting close now; we are scheduled to change Anna’s life on November 9th, less than two weeks away.

I’m trying so hard to prepare and organize my life right now and for my type A personality, that means I have lists everywhere of projects I have to accomplish. I have a list at work, I have a list on my kitchen counter, I have a list on my Blackberry, and I even have a list in my gym bag. I think I need to organize a list for all my lists at this point. My main problem is that I’m trying to foresee and accomplish all my November and December projects - sans Christmas shopping - in advance and I’m becoming exhausted. I’m almost looking forward to the surgery as a good excuse to just lay around and heal and do nothing more.

This week I had a little taste of what’s to come as my mother was here in Portland for surgery herself. She has been living with constant and persistent back issues for a long time now and had a scheduled back surgery this past Tuesday. I’ve never been one to visit people in the hospital before as I’m pretty terrified of those places in general. I’ve gotten much better this year though as I’ve been visiting Anna in the dialysis clinic (which might as well be a hospital in my opinion) and through all the testing at Virginia Mason Hospital. This week, I figured I should come to support my mother and give myself an additional opportunity for hospital exposure before my surgery.

The problem with visiting my mother in the hospital just weeks before my surgery date is that I couldn’t resist comparing what she was going through with my idea of what I’ll be going through. I saw everything through new eyes. I tried very hard to not scare myself and I think I succeeded at that, but now I’ve also started an entire new list that I keep in my bedroom of all the necessary items I want to pack for my hospital stay.

As we draw closer and closer to getting Anna healthy, we both have some specific things we have to do in preparation for the surgery. Next week (on Halloween none-the-less) I have to go into a local hospital and have another blood draw taken. From what I understand this is the same test that Scott, Anna and I had in August, we are just doing it again one week prior to surgery to confirm our antigen matches so that we know which anti-rejection meds Anna will need post surgery. Since I’m having this test done here in Portland, my blood work will be sent up to Seattle on Wednesday and Anna will have her test done on Thursday.

Scott and I will be heading up to Seattle the following week on Wednesday so that we can be there for a fun-filled day of pre-op work on Thursday. I’ll fill you all in more about what that entails later – let’s just say that I’m expecting to be HUNGRY all day and stuck in a hotel room all night. I was really hoping I’d have a chance to get out and do some shopping downtown for a new pair of shoes to commemorate the donation. Maybe post surgery. I’m thinking I need a pair of cowboy boots to add to my collection.

Yipee Ki Yay!

2007-10-21T22:55:00.000-07:00

Hockey, football, karate, rodeo: These are some of the activities I am supposed to avoid after this kidney transplant. This is all ok with me as I’m not really into any of these sports right now. Don’t get me wrong, I love to see the Ducks progress up to the number five position but I’ve got little ambition to join them on the field.

For some reason last week, I was compelled to review this list that I’m supposed to avoid in the future. Although I’ve read these activities before, this time around “rodeo” struck a cord with me. Maybe it’s because I’m from a rural town where it isn’t uncommon for folks to drive big rigs and sport giant belt buckles, but somewhere deep inside of me I’ve always wanted to try my hand at riding a mechanical bull. I know bull riding in a cowboy bar isn’t quite on the same level as competing in a rodeo, but I thought I should give it a shot before this upcoming surgery in November.

So I called up my friend Christie, figuring she had to have done this mechanical bull riding thing before. It turns out my Montanan friend has never ridden a mechanical bull, but she has roped steer and also happens to know every word to Urban Cowboy and that was good enough for me.

So on Saturday night Christie and I put on our tightest 501s and drove ourselves all the way out to the east side of town to the only cowboy bar I could find that had a working bull – Duke’s. We had to sit back and take in the local crowd for a good hour before we could muster up the courage to take a ride. In the meantime we observed some fine line dancing (and by the way, Christie knew ALL the song lyrics). We stood for the national anthem straight up at 9:00 p.m. in the direction of the largest American flag I have ever seen hanging on a bar wall in my life. We could have left so many times, but I knew I wasn’t about to leave that place without giving it a try.

Finally when the cigarette smoke had become fully entrenched in our clothes, we decided it was time. We moseyed ourselves to the back corner where the bull was waiting. The bull operator made us each sign a waiver releasing them from any liabilities (what am I doing here?) and I walked onto the inflatable floor to mount up. The bull operator gave me a down and dirty bull riding 101 lesson and it was go time. He started me off nice and easy and to be honest I have no clue how long I was on the bull. I know I had a great view of the dose-do a few feet away and I know I had a great time on that bull – I completely understand that adrenaline rush that comes with this bar hobby, it was great fun. Christie and I had a pact going into this adventure that no matter what, when we started to slip off the bull, we would instantly let go. We refused to be that stupid girl on the bull hanging on even though it was obvious she was done for. I’d love to say I made a graceful landing, but I’m pretty sure that wasn’t the case. I did get one injury from my ride, my wedding ring cut up my pinkie finger pretty badly and I bled for a couple of hours that night. All in all, not so bad overall.

Christie was up next and I have to say she was made for rodeo. She made it look effortless and I was wishing she would have brought along her 10-gallon hat to go along with her swanky Italian leather cowboy boots. She looked good up there.

I’ve got to say this kidney donation is really making me evaluate what’s important in my life, and more importantly it’s helping me step out of my comfort zone. This is good. I’ve always wanted to ride a mechanical bull, but I never would have done it if I didn’t have this deadline in my head. Now I’m not saying I’m going to go off and skydive before November 9th or anything risky like that. I mean really, riding a mechanical bull in a country bar isn’t quite on the same danger level as most life ambitions. Still, I’m glad I did it. Next time I’m taking Anna with me. I think she would own that bull.

1. Check out that flag!
2. Getting my instructions from the bull master

3.Still hanging on

4. Christie signing her life away

I'll trade you my kidney for his kidney

2007-10-18T22:56:00.000-07:00

My friend Dave sent me an article from the Wall Street Journal this week about kidney donation. Instead of the typical donor/recipient story, this compelling tale told of three sets of donor/recipients and how a medical team matched kidneys between the six people. They are calling this complex procedure a kidney swap or paired kidney donation.

Paired kidney donations occur when someone wants to donate a kidney to a loved one but is not a medical match. The incompatible pair is matched with another pair facing the same situation and the kidneys are swapped.

Wow. As if it isn’t hard enough to find a person willing to give up an organ to a loved one, with this procedure folks are giving up organs to people they don’t know. Granted, they are doing this to ensure their loved one ends up with an organ simultaneously. But wow – this puts a whole different spin on things.

I remember reading in some of the literature from this summer that some folks opt to give an organ to the “next person” on the organ donation waiting list; and in turn this donation bumps their loved one up to the top of the list when a compatible organ becomes available. I guess this is a similar idea, it is just a little more connected and personal this way.

What I find the most interesting is that there seems to be a lot of debate going on in the medical community about this type of donation. There are concerns over donors backing out(or feeling obligated to continue) and how to best organize a universal matching system.

Personally, I just feel so amazingly lucky that Anna and I were found to be compatible matches. I am glad I don’t have to make that choice of joining into a paired kidney donation in order to offer Anna a new kidney. I’m a very black and white kind of gal – adding more donors/recipients to the mix certainly makes things more gray.

Regardless, this is a super interesting story and I encourage folks to take a read. Just the logistics of coordinating a cross-country organ transplant are remarkable.

AND – as a side note on Dave: If you are ever in need of a media or presentation trainer – talk to Dave. I’ve worked with many, many media trainers over the years and can say with absolute certainty that Dave is by far the very best. That includes those hacks we flew up from SF before the tech bust that cost three times as much $$. Dave also has a charming accent, which is nice too.

Black & White Poker Night!

2007-10-14T20:31:00.000-07:00

We held our primary transplant fundraiser on Saturday night and are very pleased with its overall success. Not only did we get to visit with many dear friends and family, but we were able to raise a good amount of money for our upcoming transplant as well.

Our top three poker winners included Josh Long (1st place), Adam Lopez (2nd place) and Andrew Evans (3rd place) – congrats to all. And thank you to everyone that came to play, we had an amazing turnout! There were several other winners Saturday evening as we had some fabulous silent auction prizes and dozens of folks went away with great items!

Andrew (3rd), Nicole, Josh (1st), Adam (2nd) & Anna

Anna and I would like to personally thank the following people for their help with Saturday’s event – it would not have happened without any of these folks and we are truly in debt to each and every one of you. Thank you, thank you, thank you.

Jennifer & staff at Bullwinkle’s for donating a truly first class venue

Gaelynn & Craig Holzgraff for the beer donation

Renee & Kevin Schlachter for the wine donation

Greg & Cheryl Long for helping with all the behind the scene details

Diane, Bob, Kathy & Noel O’Bryant and Catherine & Roble Anderson for food donations

Doug & Nicky Hagerty & Gabbi for everything Black Jack

Jason Henderson for the poker felts

Jamay, Kim & Noel for holding down the registration/donation center

Barbara Chappell for rugrat duty thus enabling us to attend our own event

My lovely husband Scott for running/organizing the poker tournament

And a special thank you to all our friends and family that donated items to the silent auction, we had several happy winners thanks to your contributions.

I am truly touched by the warm wishes, cards and heartfelt conversations I had on Saturday night with so many of you. I’m moving so fast these days trying to prepare for the kidney transplant and I realized this weekend that I’m not taking enough time to talk to the people that matter most in my life – all of you. I’m humbled by the kind words and honest gestures that I received on Saturday night. I feel so very supported and loved by everyone and I’m so very glad we had this fundraiser as an opportunity to visit with everyone before the surgery.

And don’t think I won’t take those of you up on your offers to bring me meals, take my kid to dance practice, and mop my kitchen floor among other things after our surgery. I’ve got a list going and I’ll be sure to take you all up on those offers, just no seafood or peanuts please :-)

Going....going...almost gone!

2007-10-09T20:06:00.000-07:00

We are only a few days away from our big Poker Night Fundraiser! In case anyone is wondering what items we have to raffle off come Saturday, here is a little teaser to help you better estimate how much cash to bring along ;-)

We have some one-of-a-kind auction items that you won’t find at other events including this custom-designed full length mirror. We will also be auctioning a sailing excursion for four – trip includes a gourmet dinner with appetizers, beverages and dessert.

We also have some sports equipment for those athletically inclined including a custom skateboard and wakeboard as well as a signed NBA jersey. If you prefer to throw your own Superbowl party, or are just looking for an excuse to drink beer, we will be auctioning off a Party Pak from Widmer Brewing.

If looking good is more appealing to you than getting sweaty, we have some lovely jewelry including a custom designed Carnelian Necklace and a silver bracelet from Helzberg Diamonds. We are also auctioning a beauty products gift basket and acupuncture gift certificates.

If you prefer a nice coastal getaway, we also have an inclusive weekend package for scenic Astoria Oregon with two-night hotel package, dinner at one of Astoria’s finer dining establishments, breakfast at one of Astoria’s most recognized eateries, two rounds of golf at a local course and a spa treatment.

There will be many, many more auction items at the event – everything from gift certificates for local restaurants and exclusive boutique hotel stays to original pieces of art to Starbucks and Tupperware gift baskets.

I’m also thrilled to add that we are going to have not one, but two blackjack tables at the event – for those that are not playing poker but want to gamble, and for those that..umm..retire early from the tables.

Looking forward to seeing everyone on Saturday!

Get purdy for Lupus

2007-10-07T23:30:00.001-07:00

I ran into the mall the other weekend to pick up some makeup from the Bare Escentuals store and upon checkout I noticed a familiar looking butterfly on a brochure at the checkout counter.

Bare Escentuals is offering its "Butterfly Eyeshadow" and 100% of the proceeds go to the Lupus Foundation of America. I love it when I can purchase something and support a great cause. The eyeshadow is only $13.00, go check it out yourself.

To help bring awareness to lupus, 100% of the profits from the sale of Butterfly Eyeshadow will go to the Lupus Foundation of America. Bare Escentuals established our corporate philanthropy program, BE Cares, to make the world a more beautiful place by giving back to the community.
The bareMinerals Butterfly Eyeshadow, in a soft butter yellow tone, provides opaque coverage for all-over lid color. Its golden tone provides enough coverage to conceal all the signs of lupus. And easy blendability means no pulling or tugging of the delicate eye area.

(The butterfly is the recognized Lupus symbol. Traditionally the butterfly represents freedom, transformation and recovery. Also, one of the more common symptoms of Lupus is called a butterfly rash. It is a red rash across the nose and cheeks that resembles a butterfly. That is why the butterfly has become the symbol of hope for Lupus patients. )

From Anna...

2007-10-04T23:38:00.000-07:00

I thought it was about time for me to share the ‘recipient’ perspective on this kidney thing. So this is me Anna writing instead of Nicole for once.

When I was five years old, I had a friend named Jenny. She lived next door to me and we rode the school bus together every day. Because her father was in the Coast Guard, the time came for him to be redeployed, this time to Topeka Kansas and that meant I was losing my dear friend. A couple of days before Jenny moved, I was crying to my mother over losing her. That night, my mom and I knelt beside my brass bed and prayed for God to send me a new best friend. The very next day I met Nicole. Looking back now, I know my life changed direction at that moment. But I never anticipated it would bring us to this place.

From that point on, Nicole and I were inseparable. We lip-synced to Kid’s Incorporated every afternoon after school (I was Gloria, my brother Jared was Mickey and Nicole was stuck being Renee), we rode our mother’s 10-speed bicycles to Battery Russell and back at least six times a week, it didn’t matter what we were doing as long as we were doing it together. Nicole and I were so much alike growing up that we even had matching dogs. Hers was a black furry mutt named Muffin and mine was a black and white look-a-like mutt named Shirley. We spent hours of our childhood dressing our dogs up in doll clothes. When our dogs wouldn’t cooperate in this game, we moved onto Nicole’s little sister, Jamay and dressed her up in my life-sized doll’s petticoat and bloomers.

And now decades later, things haven’t changed all that much between us. We no longer live down the street from one another, but we are still as close as ever. The biggest change from those youthful days is that my health is not as strong as it used to be. This past decade has taught me a lot about myself and more importantly, it has taught me the importance of true friends and selflessness support.

When you live everyday with continuous aches and pains (not knowing if today will be a good day or a “stay in bed” day) you quickly come to the realization that not everyone you meet in life can occupy your time. Because of my health, I need to be aware of the energy I put out there for my relationships. I’ve always known that Nicole was a true friend to me, but through these recent months I’ve come to appreciate her as a sister. This year in particular has been incredibly challenging, having Nicole in my life has proven to be a lifeline for me. And now that we are just over a month away from this transplant, that statement becomes a literal one – she really is my lifeline right now.

Additionally, I know I would not be here today if it were not for the support of my parents. They have genuinely been here for me daily during of this recent struggle. They were with me in the hospital every single day. They were here for my husband and son, every single day. They have cried for and with me. They have given me physical support, mental support and emotional support. I can’t express how grateful I am to my parents for helping my family continue functioning while I was hospitalized. They did anything and everything they possibly could during those most difficult months for me. And I am grateful.

I sit here knowing that my life will hopefully be drastically different in a month’s time. I am compelled to express my deepest gratitude to my friends and family that have shown their love and continued support throughout my life. In particular, I am blessed to have a loving husband and son. I am grateful to have support from my dear friend Nicky and I am thankful for my mother and father-in-law and all they have done for us.

This may likely be the only time I post to this blog, so I also want to let everyone know how much it means to me that you are following our story and supporting us through donations and prayers and good wishes. Your support means more to my health than you realize.

I find it amazing to realize that the prayer I made with my mother 28 years ago could bring me to this place in my life. It just goes to show that God has a way of working long before we realize we need his help. If I ever needed proof that there is good in this world, all I need to do is look upon Nicole. Our friendship is all the evidence I need.

Minus 37 days and counting

2007-10-03T16:46:00.000-07:00

I received an incredibly important phone call today from my kidney transplant coordinator. It was the call I have been expecting. It was the call I have been eager to receive, yet concerned for at the same time. I learned that all my test results came back with all the positives where we wanted positive results and negatives where we wanted negative results, all testing showed me to be healthy and approved for surgery. That is good and welcomed news.

The second point of the phone call was to make a decision on surgery dates. I've been told all along that as the donor, I have the final say and choice for selecting a surgery date. Of course being so close to Anna, we have been talking about surgery options since this process started getting serious earlier this summer. As such, we were already on the same page and hoping for a date somewhere near the end of October/early November. I was given a few options from my coordinator and after a very short conversation determined the best option for us would be Friday, November 9th. That puts my surgery at just over a month away. This date is not official just yet. It still has to go through all the proper levels of approval at the hospital, but I will know for sure by this time tomorrow.

I wish I could accurately describe how I am feeling right now, but for once in my life I am short of words. I'm feeling complete joy and hope for Anna. I'm feeling concern for my husband. I'm feeling angst for my co-workers. I'm feeling relief for Anna's family. I'm feeling anxious for my bank account. I'm feeling trepidation for my daughter. I'm feeling fear for my mother. Unfortunately, all I feel for myself right now is a strong desire for chocolate. Figures.

My fortune cookie yesterday offered me more direction than prophecy for once. It read "Do something unusual tomorrow." I must say, scheduling a completely elective surgery where I will be losing a fully functioning organ is without a doubt a most unusual act. I wonder if that place makes chocolate dipped egg rolls? That too would be unusual...but good.

What you need to know about poker night

2007-10-01T20:06:00.001-07:00

I've been getting some repeat questions about the Poker Fundraiser later this month, so I thought I'd post the most asked questions/answers for everyone. Hope to see everyone on the 13th! And remember to RSVP, especially if you plan on playing poker!

Q. Does 'Black & White' attire mean black tie?
A. No way! This event is at Bullwinkle's! I think black jeans and a white t-shirt would be more appropriate than tails. Just wear the color scheme, or not. Just come and have fun.

Q. Can I bring my kids?
A. Although the event is at Bullwinkle's, we are targeting our adult friends to attend. I suspect there will be plenty of adult-level trash talking going on that little ears might not want to be exposed to. However, if you plan on stopping by for a short while and happen to bring your child, I won't force them to wait outside the door. Just be forewarned there will be drinking, gambling and trash talk.

Q. What if I'm not a poker player?
You should still attend! We are going to have a silent auction with really great prizes ranging from hotel packages to fine jewelery to golf outings to good old fashioned beer. We've got a little something for everyone so please still come out and support our kidney donation.

Q. Can I send this invitation onto others that I know would like to play poker?

Please do - the more the merrier!

Q. What's the chip count for the night?

Each Chip equals $1.00
50 chips per player
Starting Blind $1.00/$2.00
Blinds go up every 20 Minutes

Q. Are buy-backs allowed?

A. One per player only

Any other questions? Email me at Andergard@hotmail.com

That's the chi baby

2007-09-27T22:07:00.000-07:00

Last night I had my second experience with acupuncture. I’m trying to be holistic in my approach to this kidney donation process. So far, I’ve been very pleased with acupuncture. I don’t remember too much about my first needling, except for the fact that I was terrified and wouldn’t even look at the needles. This time around, I was much more relaxed and I think I actually benefited from the session quite a bit. I’m lucky too in that my friend is the one needling me, so she has been amazing about helping me feel comfortable with the process. This time around all the needles went into my back and a couple into my heels. It was when my friend was putting the needles into my feet that I felt an incredibly foreign, almost tingling sensation. When I described it to my friend she simply replied with “That’s the chi baby, that’s the chi.”

This time instead of leaving the clinic with the ‘bone tea” granules as my husband calls it, I left with a brown paper bag full of different bulk herbs; ingredients to make my own herbal tea. I had no idea I was going to get so gourmet in this process. I made the tea tonight. It took about an hour and a half for the entire process and I just consumed my first cup. Honestly, this stuff is much tastier than the two teas I was sent home with before, probably due to the healthy helping of ginger.

I also finished the last of my medical tests today, so now I can just sit back and wait for the final results. We are hoping to have a surgery date scheduled in the next week or so if all proceeds on schedule.

Black & White Poker Night!

2007-09-23T19:42:00.000-07:00

Join us for our primary fundraising event on Saturday October 13th! We will be hosting a Texas Hold 'em Poker Tournament as well a silent auction. All proceeds will go to offset kidney transplant costs. Thank you to Bullwinkle's Family Fun Center in Wilsonville for providing a space for us to have our event. And an extra special thank you to Madeleine McCaffrey for designing our invitation.

Testing....one...two...three

2007-09-21T21:22:00.001-07:00

I just returned home from a quick trip up to Seattle for big day of testing at Virginia Mason Hospital. Now that I have been selected as the final donor candidate for Anna, they wanted to get me up there to evaluate my overall health as well as the health of both my kidneys.

The trip started with a long drive to Seattle on Wednesday afternoon. I took my four-year old daughter Issabel with me as Anna hasn’t seen her since January and her mother Diane volunteered to watch her while I was having tests done on Thursday.

We encountered a pretty bad accident just outside of Chehalis Washington that put us at a standstill for the better part of 45 minutes. The wait for excruciating for Issabel (as you can see by this picture) but for me it gave me a chance to reflect on the upcoming surgery and the important things in my life.

Unfortunately, the pause in traffic also got me wondering about my role as an organ donor – which lead me to thinking about what would happen if I got in a horrendous accident of my own the drive up to Seattle. What if I died and they saw on my license that I was an organ donor and they took my kidneys and gave them to other people besides Anna? Well I wasn’t about to let that scenario play out so I pulled off the highway and found the cheapest black eyeliner pencil I could at Wal-Mart and in the public bathroom mirror I scrawled a message across my stomach that would ensure in case of emergency that Anna would get my kidneys. Let me tell you – I got some funny looks from fellow bathroom patrons. Issabel was also very interested and kept begging me to let her draw a smiley face on my belly as well. With my new directions on my stomach, we jumped back in the car and continued our drive to Anna’s house.

Because of the car accident, we arrived after Anna was already in her Wednesday dialysis session. Issabel and I stopped in for a quick hello to Anna and her husband Rick and then we went to her house to get ready for bed as our day was to start very early the next morning.

On Thursday morning, Anna and I left for the hospital for a long day of testing and meetings. Again, we had bad luck with traffic as there was another accident on I-5 near Boeing. This made us tardy for testing and those that know me know that I HATE TO BE LATE. It is a major annoyance of mine and I was not pleased at the situation. Of course Anna was her usual calm self and did her best to lower my blood pressure while we sat in traffic. We arrived to the hospital about 30 minutes late and instead of checking in as we were instructed we flew upstairs to the lab where I had the quickest blood draw and pee test of my life. I have got to say that the phlebotomists at Virginia Mason are the best I have ever experienced. I have somewhat difficult veins and sometimes finding a good one is tough – but so far these ladies (only women so far) have been outstanding. One stick and I’m good. I hate to think, but I am actually starting to get used to this blood draw thing. Maybe it was because I was running late, but I didn’t have my usual pre-blood draw panic attack this time around. Of course I also had Anna standing by with her supporting smile helping me along.

Next we ran downstairs and got officially checked in – I know had about 3 minutes to get back upstairs to meet with one of the surgeons that could be performing my surgery. Luckily for me, he had to run down to the ER to check on a patient so he was running late as well. I have to say that both Anna and I really liked the surgeon. He was kind, he was informative and he had a very kind nature that I don’t expect to receive from a doctor that primarily cuts people open. I was already feeling much better about this process overall. Additionally, this surgeon didn’t blink at my crazy line of questions – which made me feel like he had probably been asked that sort of thing many times so he was nice and experienced. He even agreed to take pictures of the operation and my kidney if we supplied him with an easy point and shoot camera. I’m pretty excited.

The surgeon did a quick little exam of me and I had to instantly explain why I had remnets of writing on my belly. I had taken a shower that morning and done my best to scrub off the “in case of emergency” message, but it was still somewhat visible. I should have paid for the more expensive line of eyeliner. Luckily for me, the surgeon also had a good sense of humor.

Next up, we were to meet with one of the transplant nephrologists on staff. While we were waiting – a man looked at Anna and I sitting together on a tiny little love-seat like couch, whispering in one another’s ear – and he looked at us and said, “Now you two MUST be sisters, you look so much alike.” That just cracked us up, but we just said “yeah, well we kind of are.”

The transplant nephrologist was also very kind and very helpful. She examined me a little bit more than the surgeon including feeling my pulse from many different points on my body including my calves and feet. I started to wish I had shaved my legs this morning.

My next appointment of the day was with my transplant social worker. This time, Anna was not allowed to join me as it was an opportunity for me to discuss my feelings about the transplant in confidence. It’s ok though – it gave her an opportunity to check in on my daughter. For me, this was the best meeting of the day. I got to hear about kidney donation from an entirely different perspective and it really calmed me about the process and encouraged me overall.

Next up I met with my transplant coordinator. I’ve been chatting and emailing with this person since the very beginning and it was great spending some time with her face to face for once. Anna was included in this meeting once again and I’m very glad because we discussed the surgery process and what we could both expect from a procedural and recovery stand-point. Again, I asked all the crazy questions I could and we were never looked at strangely.

After this appointment, I was supposed to head to radiology for another test – but it was rescheduled due to some other issues for the following day. So Anna and I headed to the hospital cafeteria for a quick lunch break. Then we headed back to radiology for some more quick tests and then off to cardiology in another building for a really fun test and a great lab tech that really got a good chuckle out of my belly writing. He even let Anna take some pics of me while I was all hooked up to the machine – we laughed pretty hard at that test. I didn’t expect to have so much fun while spending an entire day at the hospital.

We returned on Friday to the radiology lab for one last test. This time we brought Issabel with us as it was just going to be one quick test and we wanted to let Diane get back home on Thursday. Now I have to tell you that Issabel has a case of the sniffles and she saw Anna wearing a medical mask (think Michael Jackson) in the dialysis center on Wednesday. At the entrances to the hospital they have the same medical masks for people to wear if they have contagious coughs. The kid’s size has cute little Mickey Mouse ears on them and Issabel insisted on wearing a mask the entire time we were at the hospital. She was so darn cute, but everyone thought she was a very sick little girl. Anna and I couldn’t correct everyone so we just exchanged glances back and forth. Again – we were having a blast in the hospital.

My test started with getting an IV. Ugh, I just hate the needle work. Again, the woman that stuck me was great. She got it in on the first stick and it barely hurt. She even apologized for the bruise I got the day before from my blood draw. I always bruise – no biggie. During this test, they injected me with some type of stuff that made me HOT all over and gave me the sensation of wetting my pants. I had been warned this was going to happen – but it still surprised the heck out of me. I was supposed to remain still but I know I let out a chuckle at some point. It was over fairly quickly and didn’t hurt one bit. I was free to leave.

I have a “make-up” test to do still but I can get that done here in Portland. Once all these test results come back – we get to schedule our surgery date. Right now we are looking at the end of October/beginning of November. It’s getting close!!

Oh - and I did learn that I don't need to write messages across my body anymore. Even if I were to have a horrible car accident - my next of kin would be called before any of my organs were donated anywhere. So Scott would be able to let the fine organ donor folks know at least one of my kidneys was spoken for. Good to know for future road trips :-)

Kidney Donation - It's like an after-school special

2007-09-15T22:14:00.000-07:00

I received a video in the mail today from my kidney transplant coordinator. It’s called “Living Kidney Donation: What You Need to Know” and it’s absolutely hysterical. I’m sure the American Society of Transplant Surgeons were not intending to make a funny 31 minute/35 second long program, but I couldn’t stop laughing at the “After School Special” feeling the video gave me. You know what I’m talking about – running home from school, getting in a quick hit of DoOL (Days of Our Lives) at 3:00 before the incredibly melodramatic 4:00 showing of Rob Lowe or Kirk Cameron in an encounter with a drunk/bully/pregnant teen – take your pick - they were life lessons folks for the teen scene.

Anyhow, this kidney video had that same quality of poor acting but good moral lesson at the end. I found it amusing how the video spent a majority of the time telling me how I need to weigh all the possible complications, painful recovery and knowledge that my kidney might not “take” in the donor – but at the end there was a sappy, feel good message about how kidney donation is a truly beautiful and beneficial deed for mankind.

Even though the video itself was kind in need of a Clinton and Stacey makeover (What Not to Wear) – there were some really great statistics and facts included that I thought I’d drop here for everyone to see, because some of this was news to me as well.

On average, 115 people are added to the nation's organ transplant waiting list each day--one every 13 minutes. In addition, approximately 17 patients die every day while waiting for an organ--one person every 85 minutes.

There are currently over 96,000 men, women, young adults and children on the list for transplants. The largest group waiting is from 18 - 49 years of age. Last year more than 8,000 people died due to the lack of organs.
Waiting List Candidates: 92,925 as of 9/17/06 2:50 pm
Transplants Done: From January - June 2006 14,697
Donors: From January - June 2006 7,461

The procedure of removing a single kidney is called a nephrectomy. Your kidneys are located under the ribcage near the middle of your back. Each kidney is about the size of your fist and weighs around 150 grams (5.29 ounces for the mathematically challenged like me).

The kidneys are a pair of reddish-brown organs located on either side of the spine just below the diaphragm, behind the liver and stomach. They are bean-shaped and about 4 and 1/2 inches long, 2 and 1/2 inches wide and one inch thick. The primary function of the kidneys is to remove waste from the body through the production of urine. They also help to regulate blood pressure, blood volume and the chemical (electrolyte) composition of the blood. If you only have one kidney, it works harder and provides up to 75% of normal kidney function rather than the expected 50%.

After the surgery – I won’t be able to participate in kickboxing, football or karate (what a shame!) My single kidney is more at risk for injury because it will be larger and heavier than a normal kidney.

Risks that I need to be aware of during the surgery include everything from punctured & infected lungs, nerve damage, blood clots and potential bowel perforations. Yipee, sounds like a fun challenge!

Living donor transplants result in higher success rates:

98% of living donor transplants are functioning after one year compared to 94% from deceased donor transplants.
90% of living donor transplants are functioning after five years compared to 80% functioning from a deceased donor transplant.

Even with all this data and information the after-school special message still resides in my heart. I don’t care to focus on the risks or possible complications. Instead, I care about the health of my best friend and I care about setting a good example for my daughter. I care for my second set of parents, Bob and Diane, to see their only daughter live a more complete life, and I care about my needs – to have a friend for the duration of my life. Anna has been there for me every time I needed her. She was there when I had to bear the humiliation of wearing glasses in the 4th grade (and that was a horror for me), she was there when I cried over getting a darn “C” in college Spanish; she was there when my husband proposed marriage and she was there when my daughter was born. I admit it. I’m selfish – I need her in my life and if I have to remove my kidney to keep her healthy, well that is a tiny sacrifice I am willing to make.

Match!

2007-09-09T17:17:00.000-07:00

The DHL/genetic tissue/blood typing test that Scott, Anna and I did in August was to tell us if Anna's body would accept or reject an organ from either of us. We already knew that Scott and I both had O+ blood while Anna was B+. Although our blood types are not a direct match, Anna can receive blood/organs from O+ donors.

The first part of the test revealed that Scott and I would both serve as excellent donors for Anna. This was great news. Our blood work revealed that the blood test resulted in a negative (which is good) match to Anna's - we could both proceed in the donation process. The second part of the blood test was to identify what(if any) antigen match we would find between the blood samples.

We were told to expect a zero match with Anna on the antigen test because neither of us are blood relatives. Even with a zero match, this test would not exclude either of us from serving as an organ donor for Anna. This test is performed to let the medical staff know what anti-rejection meds to put Anna on once the kidney transplant is completed.

To our surprise, the test results revealed that Scott had a one out of six antigen match to Anna. This is pretty impressive considering they are not blood related. Remember, we were expecting a zero match.

The real surprise though came from my test results. Somehow my blood work revealed a four out of six antigen match to Anna. I'll repeat that FOUR OUT OF SIX! From what I've been told, this is highly unusual. Most siblings don't test this high, mothers and daughters don't test this high, sometimes twins test this high. I'm still beside myself over these results.

This is very very positive for Anna's overall health and recovery moving forward. Because we test so closely on an antigen level, she will not have to take as many anti-rejection meds for the duration of her life. She also has a much greater chance of accepting the kidney at the time of donation (even with a perfect match, her body could reject a kidney) and hopefully in the long-run, her body will keep the kidney for a longer period of time before needing a new one (if at all).

When Anna and I were younger, we pretended we were sisters. Our birthdays are only five short days apart and we used this information to tell each other stories that we must have been separated at birth. We also have matching butterfly-esque-shaped birthmarks. We were convinced of our sisterhood and this was the all proof we needed. Now we fast-forward to today and a genetic counselor is telling us that we are as genetically matched as twins would test. I think it surprised everyone -- except for me and Anna.

Scott and I had many conversations about who should proceed with the donation process and we concluded with the truly remarkable antigen test results that I would be the one to be Anna's organ donor. I know he wanted to be the one to do it, but this is just further proof that I'm supposed to do this for my best friend.

I go into the hospital in mid-September for an exciting day of testing. There will be more blood work, urine analysis, EKGs, MRIs, blah, blah, blahs. I don't even know - but it's going to be exhausting. As soon as the results come back (and everything looks good), we will get our surgery date scheduled. At this point, we are looking at October for the transplant. I'm thinking I might not need a Halloween costume, I'll just show off my scars :-)

Two Girls, a Guy & a Kidney

2007-08-14T13:17:00.000-07:00

A week ago tomorrow, I opened a new chapter in my journey to become an organ donor for Anna. I went to visit my friend Jenny at the Pettygrove Classical Chinese Medicinary. I was excited to investigate a non-surgical side of the organ donation process and see exactly what it was like to have my tongue read. Yep – that is correct, for those of you that have never had acupuncture before, they read your tongue and your pulse. Before anyone reviewed my tongue though I had the most complete verbal evaluation of my life. I have never ever been asked so many questions about the frequency and color of my stool before. I am pretty shocked how interested these folks were in all that was happening in my body. I have to admit, I didn't even have all the answers. The doctor actually looked perplexed when I admitted that I sometimes get headaches, but couldn't tell him exactly where in my head the headaches reside. I'm trying to be more in tune with my body now though and am taking notes on my aches and pains so that I can present them with a more complete picture of my physical health when I go in for a needling at the end of the month. At the end of the day, they sent me home with some herbal tea stuff (My hubby, Scott thinks it smells like crushed bone) and they made an initial recommendation for me to consider releasing my left kidney in the donation process. Works for me.

Additionally, I got a very important phone call from the Seattle hospital where the procedure is going to happen. Scott and I learned late last week that we are the sole two remaining candidates for Anna's organ donation. We needed to get ourselves up to Seattle in short order for one final and very expensive blood test. It just so happened that I was already planning a birthday getaway up North this weekend, so Scott decided to join me last minute and Issabel got to go stay with my parents (and be in the Astoria Regatta Parade) for a long weekend.

I met up with Anna on Friday night after she completed her third round of dialysis for the week, said quick hellos to Rick and Drew (who is officially taller than I am now by the way), loaded up Anna and we headed North to Everett to stay with the O'Bryants for the weekend. The boys stayed in Renton and fished. They also fished on Saturday and they fished on Sunday, they fished in a car, they fished very far. ….Oh and I think they went skateboarding…good clean fun was had by all.

Our birthday celebration consisted of a lot of food and a lot of celebrity trash talk. I'm sworn to secrecy on most items but I can tell you that Anna has an embarrassing attraction to Jeremy Pivens – Hug it out girl!

Overall, we had a most excellent time and I'm already craving the annual birthday celebration next year. I love this single girls' weekend – of course we were missing half our posse this year, but I think our numbers will be up again in 2008.

When the weekend ended so did the fun. It was time to focus once again on the business of getting Anna a new, healthy kidney. The three of us (Scott, Anna, me) had to all go into the hospital for one group blood test. It is a genetic DHL matching test where they are looking for antigen matches with Anna's blood. In short, this is the test where we learn if her body would reject an organ from either of us. Apparently this is a very expensive test and they only do it once, so the donor pool is now closed. We also all had to give blood at the same time. Now I need to interject that I am TERRIFIED of needles and hospitals in general.

We were comparing notes over cheese omelets later that day and I learned that my man only had to give up five vials of blood where Anna had to give up eight vials. Me??? Yes, I had to give nine vials of blood. No rhyme or reason – someone is obviously messing with the freaked girl. Scott took pictures of the lab work, but they are on my new camera and I haven't figured out how to get them off just yet so stay tuned.

We should have the blood results back in about a week. From there things are going to go quickly – Anna could have a new kidney by Halloween and with any luck, it will be mine. I'll be sure to keep everyone updated.

I also learned that 33 (yes, I am 33 now) is a very lucky year in the Chinese culture - so here is to a little luck for the coming year

Anna's Story

2007-08-01T16:09:00.000-07:00

About Anna (from Nicole's perspective because Anna doesn't like to do this stuff)

Anna “Kats” was born in the quaint little town of Astoria, Oregon (only because the hick suburb of Warrenton isn't big enough to have its own hospital). Her hip parents, Diane and Robert O'Bryant were overcome with happiness at the birth of their first child. Anna quickly became the delight and desire of her parents and extended family. A local tale in Astoria is that Anna’s mother didn’t even know if Anna could walk on her first birthday because Diane never put Anna down long enough to see if she could walk or even crawl!

Anna grew up in Warrenton living the life of a typical child participating in school sports (excelling in basketball because she was so darn tall for her age), riding around town on her banana-seated bicycle, and participating in social groups like Camp Fire and 4-H because my mother and grandmother were the local leaders. Then junior high school hit and Anna moved away from the coastal town to the “big” Seattle suburb of Renton. During this time Anna grew from an adorable and likable young lady into an incredibly mature and centered woman. No 18-year-old should have the level of stability and calmness that Anna possessed at such a young age. And while I was fretting away money and studying fraternity anatomy in college, Anna was becoming a mother to perhaps the most dynamic and comical child in the country. Drew was the first newborn baby I ever held. That goes to show how trustworthy of a person Anna is – nobody else would ever consider letting me hold a newborn.

Not long after Anna met and married her soul mate in LAS VEGAS BABY, she also became aware of a condition that had likely been haunting her for years before the diagnosis formally presented itself. Anna lived graciously with Lupus for nearly a decade - taking pauses for chemotherapy and other treatment over the years. In February 2007 Anna's life changed direction. I can't (and don't want to) remember all the details, but I know we faced weeks of chaos. Anna’s blood tests revealed concern from her MD and he immediately ordered her a kidney biopsy. Anna has had several biopsies in the past, but this time was very very different. She didn't heal well from the procedure and she had a difficult time recovering from what should have been a very simple "in and out" procedure. In the next few months, Anna was literally in and out of the hospital in varying states of health. The biopsy results revealed her kidney function had dropped to a mere 2% of functioning power. Anna's kidneys were shutting down. Her life was changing.

I had the ability to visit Anna during these critical months and to be honest; I wonder if she knew I was there. It was so devastating to see my best friend in such a fragile state. This was the woman that single-handedly got me through ...well…my entire life. To see Anna’s face, so sunken broke my heart. And to look into her drawn eyes was debilitating. On one visit I stayed through the weekend in order to watch the yearly Oscar Awards with Anna and her lovely mother Diane. We usually spent the Oscars on the phone to one another because of the distance between our homes. This year, we were sitting inches apart yet I felt that Anna was farther away than ever. Honestly, I don't know if Anna remembers a single award presented, or any of the fashion blunders on the red carpet that night. She probably doesn't remember that Diane and I made our own little celebration in hopes of getting Anna engaged. Diane bought us all "Oscar jammies" and we had our own dollar store jewelry that rivaled the celeb's Harry Winston jewels and Oscar worthy snacks and drinks. We had an entire evening of Oscar-filled distractions and my dear friend sat on the couch in a near coma.

I remember being worried about her because she wasn't able to eat. She was taking these awful pills that we called "liquid chemo" and they literally burned her throat. I remember how excited Diane and I became when she said she would eat a taco. A bland taco with no seasoning or hot sauce (which if you know Anna you know that just doesn't fly with her hot tamale taste buds). I think she might have only eaten four tacos (and literally nothing else) all weekend and that made Diane and me so incredibly happy. I had to leave first thing Monday morning to go back to Portland as I had some deadline that seemed to vital at the time. Anna was paler than before and she was shockingly becoming even more lethargic as the morning passed. I left only to find out she was readmitted to the hospital before I even made it to Tacoma. If I recall, this hospital stay resulted in a longer and more complicated stay than the times before and even involved a blood transfusion.

I won't go into each day or even each week’s details because they were day by day - and some days they were difficult and some days they were virtually uneventful. On one visit I was so proud of Anna. She had started dialysis because it was obvious her body could not survive without outside assistance. I think I arrived on the third day of her long-term dialysis treatment. I really wanted to know what it was like for her to go through treatment.

I picked her up on Friday afternoon and we drove 25 minutes or so to the dialysis center. I think we passed two or three other dialysis clinics on our way that are actually closer to her house. Did you know that there are so many patients on dialysis right now that some clinics have waiting lists? Amazing. We actually missed the exit to her dialysis clinic because we were talking so much. It really was wonderful to have Anna talking again. The last time I visited, she was so lethargic and non-communicative. It was great to hear her voice again. Eventually we made it to the clinic.

After only a week, she had a system for treatment. She brought a pillow; she brought slipper socks because cleaning her blood made her feet cold. She brought a blanket and she brought the current issue of People and InStyle. She also brought a foldable camp chair for me to sit in because the plastic chairs were similar to the ones we sat in at Warrenton Grade School. Meaning they were very hard, very rigid chairs. Don’t forget she sits in dialysis three days a week for four hours each time. First Anna washes her hands. Then she weighs herself. Then she takes her temperature. Then she walks past the same exact people she walks past every day and nods hello and smiles at the medical staff. She sits in the same exact chair three times every week, 12 hours a week. Anna has a catheter right above her chest and right at the edge of her neck. It’s 3 or 4 inches wide and it has many needles and tubes coming out of it. It is taped to her chest and this is how she receives her dialysis treatment. This catheter connects directly into her heart. If just one of the needles or tubes were to be pulled from her heart, she would die. On many occasions, her catheter tubes have become clogged. This is one of the many reasons she needs a new kidney. She cannot continue long term with this catheter. At some point she must either receive a new kidney or she must have a permanent catheter placed in her arm or thigh. It will be a surgical procedure and it will take months to heal. Anna doesn’t want to get to that place. The entire dialysis session was sterile.

I could tell that I was a new face for the dialysis center residents. I am a people watcher and I could see the patients pass by Anna’s station and take note that I was new. It’s not surprising since these people see each other many times every week. They may not know each other’s name. But they know the situation. They know what it’s like to have kidney failure. They know the exhaustion. They know the diagnosis. They know their own reflection, even if they aren’t looking in the mirror. Months have passed since Anna started dialysis and she has become stronger and healthier with every passing day. She has lost some weight (and I’m a little jealous) but she is strong and she is back to being Anna again. Anna is hopeful and shows the same kind, compassionate and embracing nature we all know and love. We are patiently waiting for the kidney donor selection process to move along. We are all anxious for Anna to move past this challenge in her life and welcome any and all support you can offer to her right now.

Every Journey Starts with a Single Step

2007-07-17T09:22:00.000-07:00

I was at the Portland Scandinavian Midsummer Festival in June with my daughter and my parents. They were all dressed in their Scandi attire - my parents in their Swedish costumes representing Varmland and my daughter in her Norwegian bunad. I was hot in my denim Capri's and t-shirt.

As the sweet smell of Krumkake wafted across the celebration my father leaned over to me and asked when I was planning to write the story of my relationship with my best friend Anna. I don't know if it was the sentimental feeling of celebrating my ancestral heritage or if it was the fact that Anna and I are hoping to change the foundation of our friendship, but something about my father's suggestion spurred me to writing this blog.

Anna is my best friend. We are linked by decades of friendship and hopefully soon will be linked by an organ donation as well. Anna was diagnosed with Lupus nephritis about eight years ago, although we are certain she suffered from this disease well before diagnosis.

This past February her kidneys shut down. For months our entire goal was to get Anna healthy enough to leave the hospital. She is now on dialysis three days a week and she is surviving. Personally, I wouldn't say she is living life right now - she is surviving life. And I am going to do everything I can to help her live again. Hopefully the first step to getting her healthy again is to donate one of my kidneys.