Nephro-Notes, a Kidney Donor's Diary

6+ months post transplant, and all is well

2009-08-30T18:02:00.000-07:00

The long hiatus in this blog, although shameful, is not much more than a reflection of the fact that everything is completely fine, and my life has gone back to its usual full and busy pace. All is well.

In fact, it's amazing that one can be down an organ and feel perfectly normal, but that's how it's been for many months now. (Although, as I've had more than one person point out, it depends on which organ.) I not only don't feel any differently than I did prior to donating, I even go long stretches completely forgetting about the whole experience. Strange but true. It's not usually at the top of my mind. It was, you know, just this thing I did.

Although of course I'm very grateful that everything seem to be going well for Mark, and his numbers continue to look good. I'm proud of my little (ex) kidney for doing what it's supposed to be doing, and am glad Mark doesn't have to be tied to a machine 8 hours at at stretch, and that he and Jenna can travel and live a more normal life now. As I've said before, they're such good people. They deserve only the best.

The womens gym to which I had belonged for nearly a decade closed while I was recovering from surgery (they filed for bankruptcy), but I still do weight/cardio training sessions at work and jog once in a while. We also have a new puppy (adopted 3 weeks ago), and trying to wear him out with walks and runs keeps the whole family active. The scars from the surgery are for the most part faded, and I think in a few more years, they'll be hard to find at all.

I am so amazed that the medical technology and the skill of the surgeons and other medical staff at UCSF. It seems like a miracle that the whole procedure is possible, and it's certainly something that couldn't have happened as it did a generation ago.

I still consider writing the story of this donation in more detail, especially as (like any story) there's more to it than the straight-forward narrative. I'm willing to bet that with any living donation, there are larger pieces that make up the picture: the many layers of motivations, the somewhat mixed reactions of family and friends. In my case too, the joy of the successful donation was colored by my father's death nine days after the surgery. And since then, the year has also seen the passing of my biological maternal grandmother, my father's mother, and four dogs owned by immediate family members. It's been a memorable year for better and for worse.

I'm still not sure what to do with the gratitude that Mark and Jenna, and their family and friends, have expressed. I'm trying to accept it with some level of graciousness. But I've never been good at attention or fuss (having run away crying, literally, from nearly every childhood birthday party my mother ever threw for me). Really, graciousness is easier said than done, when it would be simpler to fall into either feeling full of secret of holier-than-thou virtue, or conversely, feeling mortally embarrassed and overwhelmed by the gratitude. For now, I acknowledge their response while knowing that, as I may have said before, I've gained at least as much from this donation as anyone else has. If not more.

T (Transplant) Minus 21

2009-03-03T10:13:00.000-08:00

Three weeks after the transplant, and I'm ready to update this blog again. Not with the details of the surgery or recovery or a review of how I feel physically, although those are things I've noted in a notebook and will transcribe, eventually, for the sake of a fuller record.

But I did want to write a little about where I am emotionally and mentally right now.

I just came to the conclusion (obvious in hindsight) that this thing I did, which I've always considered just a practical, sensible because-he-needs-it-and-because-I-can kind of thing - this act of giving has ended up, for me, being all about learning to receive.

I really can't even name all of the many gifts I've received in the last few weeks. For one thing, it's an embarrassment of riches. And for another, I don't even have time for such a list. And finally, so much of it is intangible as well. I'm overwhelmed by the cards, letters, emails, notes, Facebook and Blog comments, presents (so many presents!), well-wishes, donated hours at work, and prayers. It's not just my friends and family - even more so, it's Mark's many friends and family members, and friends of family members. Mark is clearly very loved and treasured by those who know him, and now I feel I've been invited into this giant circle of caring and gratitude.

Who knows how our paths are laid out or forged in life? It's a mystery. But sometimes, we have the opportunity to look back at the little section of road we just traveled, and marvel at where it's brought us. That's how I feel right now. I feel like this experience has changed me at least as much as it might have changed Mark. And I am completely sure that I've received far, far more than I gave.

I keep joking that "it takes a village to donate a kidney." But it's true. Everyone who made a meal or said a prayer, every nurse who took my blood pressure, the doctors, the donor coordinators, the social workers, the gift-givers and especially Lisa, the magnificent orchestrator and organizer of meals and gifts - they all had a hand and hearts in this. I hope they (this means you, gentle reader) all know and understand that.

I showed up and provided a piece. But everyone else turned the jigsaw into a beautiful picture.

Home

2009-02-14T18:16:00.001-08:00

I came home from UCSF Thursday night. Jenna's blog has been much more up-to-date than this one, and I'm grateful to her for keeping everyone posted.

The surgery was a success, and I am recovering slowly but surely. Yesterday, my first full day home, I had a pattern of being awake for about 45 minutes then sleeping for 3 hours. Today, I've only had one nap and have switched to just the occasional Tylenol for pain. My family is taking excellent care of me.

Mark is home too, and is going through the process of getting used to life off of dialysis and on the necessary medications and regimen.

I have notes from the hospital about the whole experience--before, during and after the surgery--and I'll get it posted here when I have more stamina.

But for now, I have to say how incredibly overwhelmed I've been by the kindness and generosity of everyone else. We've been blessed beyond belief by the meals and gifts that our extraordinary friend Lisa has coordinated. As Dan said, we'll have to invent a new word, because "Thanks" just doesn't come close to expressing our gratitude for the support and love we've felt. I didn't shed a tear because of the pain from the surgery (of course, the Vicodin might have helped there), but I have been moved to tears several times by the cards and gifts from people I don't even know, like Mark's college roommate, or Mark's mother's co-workers.

Thank you, everyone. Thank you so much.

Transplant Eve

2009-02-09T19:58:00.000-08:00

It's about 12 hours before we're to report to the hospital for the transplant. I've not eaten since just after noon, but I'm also not hungry at all. It think this is because of the bottle of Magnesium Citrate I'd been instructed to drink hours ago. The label for the drink is full of mixed messages. It says "Pasteurized" (which I associate with milk) and "Sparkling" which does sound pleasant when followed by the words "mineral water" or "wine"--except in this case, the next phrase on the label is "Saline Laxative." Not so appetizing. I'd been warned that the drink was bad tasting, but it really wasn't much different than downing a bottle of thick warm (sparkling) ocean water. With a lemon twist. And it was filling. It also hasn't kicked in. This is typical, with me. The other potentially ironic part of the bottle label is the first warning it lists: "Ask a doctor before use if you have kidney disease." Funny, that.

Mark and I just spoke on the phone. He asked (as everyone has been asking) how I feel. I feel fine. Really. Honestly. I have a few more things to do to pack, and I'll be all set. I hope to go to bed early, because I'm sure I won't be able to sleep too soundly even though I'm not (consciously) nervous or anxious.

I did have a few minutes of nerves this morning, but it was just a little case of jitters that went away quickly. It helps so much to write, and it helps that I've had such enormous support and waves of well-wishes from everyone. Work gave me a fantastic care box complete with everything one might want at the hospital (lotion, lip balm, a book of Sodoku puzzles, etc.) plus candy and treats and a plush teddy bear, which I learned matches one that they gave Mark. And I've had other gifts from other friends: orchids, soft slippers for the hospital and bath goodies for when I'm recovering. This is the weirdest thing. I was acting like a pregnant mom "nesting" over the weekend, and yet I also feel like I did when Dan and I got married and we were blown away by the love and generosity of the people in our lives.

I'm going to review my checklist now and then try to relax and then sleep. I don't know that I'll have time to post anything in the morning before we leave for the hospital (we're carpooling), but I know that Jenna will post updates. See the link to her site on the upper right corner of this page. Thanks again to everyone for your amazing love and support. I feel like this is not just something I'm doing or something Mark's doing. It's a collective effort on the part of Mark's friends and family, my friends and family, coworkers, the hospital staff, the surgeons, and all those congregations I keep hearing about who have added us to prayer requests.

To Do (From 2/5/09)

2009-02-07T14:38:00.000-08:00

It's Thursday night. My friend (and Mark and Jenna's friend) Jen is over with her daughters. Our four girls are having a playdate but really it's also an excuse for us to catch up. Jen asks how I'm doing. She notices that I'm distracted and tired from being up too late last night (finishing financial aid applications for our daughter's High Schools of choice). Yet I'm still making plans for how to fill the next few days before surgery. Hmm. And it's not that the enormity of the surgery is actually hitting me - because, honestly, I still don't feel that it's enormous at all - but it's true that I find myself staying busy and working hard to keep all different aspects in my life under tight control. And that, I suspect, may be a symptom that at some level, I am feeling a lack of control about the outcome of all this, and that I have a need to be just too danged preoccupied to dwell on the unknowns.

But I also think the free-floating anxiety can be addressed if I make a to-do list. Jen agrees. So after she and her girls leave, instead of opening mail, checking for financial aid deadlines, doing laundry, binging on cereal with sugar, sleeping, reading, or cleaning out the birdcage…instead of all these things, I am writing. Because my practical, wise friend Jen said I should.

So I make a list of what I feel I need to do before surgery, which is now 5 days away. The plan is to look at those things on my list, and narrow it down to the ones I think I really need to do. And then to call Jen and she can hear the list and point out the things that maybe I don’t really need to do after all.

Here are only most of the things that were on the list, in the random order in which I wrote them, and in full shameless confessional neurotic detail. There were others, but really, this should be enough to give you an idea. [Please note: I don't believe that neurosis contaminates one's kidneys, so Mark should be safe.]

To Do
buy a bathrobe (I don't have one that's warm enough for hospital air conditioning)

...insert interruption of children here. I managed to write for all of 45 seconds before one of them needed me...

Pack for the hospital: robe, socks, toothbrush, toothpaste, underwear, deodorant, glasses in glass case, lip balm, book, ipod
clean sock slippers
get toothpaste?
load Book on CD onto iPod shuffle - will it hold enough?
read the other books in the series to catch up to the one on CDs
write thank you notes for Nutcracker help (2 to go and I might as well finish the job)
respond to Mrs. D.about being on Board of Directors
talk to Dan about where passwords, will, etc. are
figure out who is going to Windsor Saturday (for a student ambassador meeting for R.)
get directions to meeting in Windsor
send financial aid information to Summerfield
send financial aid information to Sonoma Academy
write in nephronotes (CHECK!)
write 25 random things on Facebook page
email message to friends and family soliciting prayers
go to church Sunday
buy stuff to drink on Monday (the system cleanser the hospital prescribed...)
go through personal work email – save it to flash drive?
photocopy financial aid forms
notarize durable power of attorney
make copies of durable power of attorney
write letter to Dan
write letter to girls
clean office
put post-it notes on borrowed books to say whose they are
finish reading Steve Martin book & return it to its owner
show Dan where checks are located
go through jewelry
go through bathroom cabinet
write poems
organize poems
organize paperwork in the office
vacuum
clean out bird cage
grocery store – lunch stuff
fill out required forms for girls' current school
catch up on sleep
go to gym Fri, Sat, Sun
talk to Dan about moving the clock radio to his side of the bed
notebook to write in at hospital?
download pics from camera
burn pics to DVD or CD
confirm burn
clean off camera card
clean out lingerie drawer
wash lingerie, throw out old stuff
call Dan’s Dad to check in
call Jen about Tuesday
call Lyn about Tuesday
email Linda about Tuesday
read & respond to Jennifer’s carpool email
send out carpool email
whiten teeth
get rid of mustache (go ahead, laugh)
lower picture in bedroom
give Dan access to Google calendar
reserve rental house for April
reserve car for April
reserve ferry tickets
return library books
pick up 7 habits CD from library
relax
rest
take it easy
take care
write poetry
stare out the window
think
pray
meditate
write
write

Nevermind that some of these things are ludicrous and others are contradictory - as in, reorganize the entire house and also go to the gym and also rest and relax. This is only meant to demonstrate the mice-on-a-running-wheel state of my brain at the moment. Having written the list, I promptly fall asleep on the couch.

Having written the post about the list, I feel that much better. Sometimes voicing our fears (or our illogical to-do lists) is the first step toward conquering them.

Green Light!

2009-02-03T22:16:00.001-08:00

Yesterday Mark and Jenna and Dan and I went to UCSF for a "prepare appointment" and a last round of tests to make sure everything still looks good. We had to laugh because the letters we were sent break things down like this:

STEP ONE: PREPARE
followed by the schedule for the day's appointments and tests. In general, these are:
1. History and Physical
2. Lab screening
3. Consultations

STEP TWO: TRANSPLANT SURGERY
(well, okay!)

We met with anesthesiologists, had our vitals taken (I really am 5'6"), had blood drawn-15 vials for me, and probably at least that many for Mark-and urine tests done. We then met with our kidney donor, a financial consultant, Mark's surgeon (who explained his procedure and mine), and a Nephrologist. Everyone went over what to expect on the day of the surgery, and they were remarkably consistent with what they had to say. The only noticeable discrepancy is whether I'll have a button to push for pain medication or not. I'll get back to you about that one.

And today the lab results were in, and we got official word that everything still looks compatible. Apparently I haven't developed dengue fever or changed blood type in the last few weeks, so we're all set to go in a week from today and do this little organ shuffle thing. Hooray!! This time next week, God willing, both Mark and I will be dozing in hospital beds on the road to recovery, and my biggest worry will be whether I want lime or strawberry jello for my next meal.

Notes from January 24

2009-02-03T22:04:00.000-08:00

Something I'd meant to post last week:

So the other day, Mark sends out an email out to work to share about the upcoming donation to anyone who doesn’t already know. We’re a small company where typically news travels fast, to I’m surprised that there are still a few people who aren't aware of what was going on. I receive some very kind and congratulatory emails in reply—of course much appreciated. Apparently more than one person got weepy or choked up by the news, which emphasizes something Jenna once told me about how this is such an emotion-laden issue for people for all sorts of reasons. It draws out big reactions. It hits people deeply, even if they’re not directly involved with it.

And coming home from work that day, I have an epiphany that I know I must put in writing. I’m not saying I don’t mind the flattering things that people say about me or to me as a donor, but none of the compliments have ever sat quite right with me, and I know that’s not just because of some sense of modesty. The fact is, I’m quite vain and proud. I mean, if I was truly uber-humble with low self-esteem, I would probably not feel that my kidney was worthy or capable of helping someone else. It takes a certain amount of pride and vanity to believe that I qualify to do this, actually. But the epiphany I had was about something else—and now I can finally articulate it.

The reason the compliments feel off-the-mark to me, I realized, is that I don’t consider this to be something I’m doing because I’m special. I feel this is something special that I get to do. I mean, I honestly feel lucky, really lucky, to be doing this. Why? There are so many blessings that contribute to this feeling, but here are the main ones:

1. How lucky I am that my body is healthy. For this, I thank genetics, my upbringing, the childbirth experiences that enabled me to see myself as physically strong and led to me training for and participating in longer races, and most importantly, the trainers at work J. & S. – who were hired by the company owner a few years ago specifically to improve the quality of life for employees. How many other small companies have a gym in house with personal weight and cross-fitness training for employees twice a week as part of their workday? The work that those trainers have done with me, especially J., whom I see most, has brought me to a place where I am healthier and more fit than I would have ever imagined myself being. I truly doubt I would even consider donating a kidney if it weren't been for that personal training. Thanks, S. & J.!!

2. How lucky I am that my husband is so supportive. Not just emotionally but also practically, physically, psychically. I mean, over the last 25 years he’s said on multiple occasions that he didn’t think he could function without me (crazy romantic that he is). And one nod from him to indicate, “No, please don’t do this. I don’t want you to,” would have stopped me long ago in this process. And yet, he’s stood by me at every step. And he’ll be taking on all the extra work of running the household and caring for the girls for the days that I’m in the hospital and the week or so after I first come home. I think the stress of the upcoming surgery, which he’d denied feeling, is starting to creep up on him and has shown up as a few migraines over the last week. But in spite of the worry that he’s now feeling, D. has been nothing but positive and loving about me checking myself into a hospital (not his favorite place) to be cut open by a stranger. Warning: black humor ahead, skip the ending of this paragraph if you’re easily offended. When explaining his amazing support to other people, D. doesn’t take credit for being as huge-hearted as he is. Instead, he tends to say things like, “It’s her body. It’s her decision” which I say makes it sound like an abortion (something I would never do), and he points out, “Well, you are having something removed.”

3. I’m blessed because I have a job that allows me to take time off to do this. In this economic crisis, not everyone has a job – let alone one where the managers and owners are so supportive. I don’t have to worry that they’ll fire me for taking a few weeks off. And my co-workers are wonderful for taking up the slack I leave behind.

4.How fortunate that my children are so mature and loving and supportive. They tease me by saying that they’ll make fun of me when I’m doped up on pain killers. But they also are ready to step up and help with meals and take care of themselves when I’m not able to do so. If they were younger or less responsible and generous, I wouldn’t feel half as comfortable doing this.

5. I’m so lucky to have the friends I have. Whether they're offering chicken soup, carpool help or moral support, they mean so much to me, and they're partially responsible for this donation too. And I’m even supported by total strangers. Mark’s mom shared this wonderful story with him last week and he and Jenna passed it on to me. Mark's mom works at a school. A couple of weeks ago, she was told to wear green to work the next day. So she showed up wearing green – and everyone on the staff (teachers, principal, secretaries, lunch workers, custodian) was also wearing green to send good wishes to Mark and me and to and celebrate organ donation. They organized the day and kept it secret. (Green being the color for organ donation.) How amazing is that? I’m so grateful to them and the other friends and churches and groups who are holding us in their thoughts. I can feel the positive energy, folks – thank you!!!!

Yet Another Good Article

2009-01-30T12:00:00.000-08:00

The San Francisco Chronicle posted this story yesterday about the long-term effects of donating a kidney.

The good news is that in this study of 3700 donors, which spanned 4 decades, researchers found that donation did not shorted the donors' lifespans. Nor did it increase their likelihood to have renal failure later. Between this article and the last one I posted, Mark says he and Jenna expect me to live to be at least 88. Sounds good to me!

A couple other interesting statistics from the article:

More than 78,000 people are on the national waiting list to receive a kidney from a deceased donor.

Mark would have another four years on a waiting list if he didn't have this transplant. Four more years of dialysis. Eight hours a night. Every night. Sorry, that's just not acceptable.

In 2007, more than a third of the 16,629 kidneys transplanted in the U.S. came from living donors, according to the United Network for Organ Sharing.

See? I'm not the only one who's had this idea. It's practically a fad, for goodness' sake.

A kidney donation story from the Seattle Times

2009-01-29T05:30:00.000-08:00

Forty-two years after the one of the first living kidney donors gave her kidney to her son, she's passed away at age 88.

Juanita Smallwood Osborne donated her kidney the year I was born.

She leaves behind two sons (one of whom is the kidney recipient), six grandchildren and six great-grandchildren.

But she also leaves the legacy of having helped pioneer the field of living donation.

Here's the full article. It's short, but still newsworthy.

Thanks to Mark for forwarding it to me, and to his folks for forwarding it to him!

Autologous Blood Donation

2009-01-17T12:30:00.000-08:00

Written January 17, 2009 noonish

I'm back in town after making an autologous blood donation at UCSF a few hours ago. “Auto” meaning self, of course, and “-logous” surprisingly arriving by way of a twisted etymological route from the the Greek “logos”--the same “Word” that is so significant for biblical scholars, although in this case it relates more to “proportion” or “ratio,” making this something like a “self-sameness” donation, you could say. (Another benefit to being a kidney donor is an increase in vocabulary. And I love words.)

The idea behind the blood donation is that in the rare event I require a blood transfusion during or after surgery, I’ll have a unit (pint) of my own blood available. Unfortunately, in spite of what I’d first heard from my donor coordinator, I understand now that if I don’t use the blood, it will be discarded rather than given to another patient.

It’s a twist on the blood giving I’m used to experiencing. I’ve donated blood for several years on a somewhat regular basis with the local blood bank because my A- blood type is one of the less common and therefore often in more demand, and because (like a simplified version of this kidney donation) it’s an easy thing to do that helps others. And it’s not that I’ve speculated in the past who is going to receive my blood—my writer’s imagination just doesn’t kick in about that, for some reason.

But this time, instead of not knowing who will get my blood (but knowing that someone definitely will), I know who will get the blood but not whether a transfusion will actually be necessary.

When I get to the UCSF blood bank, there's a bit of a delay because they can't find any paperwork from my donation coordinator, and when they look me up in their medical records system, I don't have a physician assigned to me, nor do I have the name of a surgeon. (I don’t yet know who will be operating on me.) But I make a quick call to Mark and get his surgeon’s name and that suffices.

One phlebotomist checks my iron, pulse and temperature while we resolve the paperwork mystery, and then another checks my blood pressure once I'm in the pale peach Naugahyde donation recliner. The cuff gives its expected low reading—in this case, 103 over 52, and the phlebotomist is not too enthusiastic about the numbers. But I think stressful thoughts for a few minutes (bills due, mother-in-law health issues, house needing cleaning) and have her check again, and the number has gone up to 60 for the diastolic number, and she is appeased. Who says biofeedback doesn’t work?

One more check on my list of pre-donation to-do's. Give blood for self just in case: check!

February 2nd we’ll be going in for a pre-surgery appointment, and then the surgery itself is scheduled for February 10th. I’ve had a moment or two of butterflies but overall, I’m just looking forward to the next steps in the journey. I mean, yes, I'll be in pain at the hospital - but I'll have time to sleep! and daydream! and free meals that I won't have to prepare or clean up after! And ("Lord willing and the creeks don't rise!") Mark will be well on his way to life without dialysis.

We have a date!

2008-12-25T18:44:00.000-08:00

On Friday the 12th--nearly 2 weeks ago now--my coordinator called to tell me that they'd reviewed our case and that the next step was scheduling surgery. Hooray!!

As soon as she gave me the news, she reminded me of two things: one, that there's no guarantee that this donation will improve Mark's health. No guarantee it will work, in other words. I told her I understand - and I do. There's no certainty. But there's hope. And odds are in our favor. Two: because I'm smaller than Mark, my kidneys are smaller than Mark's, and the one I donate may not do the job for him as long as one of his own would. It may not last as many years. My first reaction to this warning was to take it less seriously than the first caveat, only because I don't think I'm really that much smaller than Mark. I think we're actually about the same size. But then again, I remember my second daughter being born two weeks late, and being induced because the placenta was no longer doing its job as well as it could. Thing do, eventually, run down. And I suppose that they're looking at angiogram measurements and not just height and weight when they assess size and potential functionality. So I assured her that I heard her and she'd done her job duly warning me.

The first potential date we were looking at was January 15th, which seemed do-able to both of us - why wait, after all? But it did feel like it was coming up fast - not a ton of time for me to get a Costco run in, schedule carpool replacements, get all my affairs in order to allow for some down time. It turned out that that date was taken before we could confirm it, however, and the new date is in the second week of February. Soon, but not too soon.

This is getting more and more exciting. The only thing currently tempering the excitement is that I'm just now working my way through a cold and cough - brought on, no doubt, by me bragging last week at work that I hardly EVER get sick (!) but I expect to be just fine by February. Plus, I haven't had even a sip of alcohol since mid-November and don't expect to have any over the holidays or for New Years, so at least it will be a very alcohol-free kidney. And I'll do what I can to be as caffeine-free as is possible for me, too. I gave up regular coffee both times I was pregnant, and periodically since then. So I can do it for this too - it'll be for a shorter period of time than 9 months, after all. (Interesting how often I bring up pregnancy in this blog - but I think that's because this is like a birth, in a sense, and because it's my only other extended experience with the medical world.)

I am sorry not to have posted this important development in the donation journey before now, but the rest of my life - work, kids' school activities, being in charge of the backstage supervision for the local Nutcracker, Christmas shopping - has all put recording this news on a back burner. This is the first chance I've really had to sit down and update.

I also have notes on the stress test, nearly composed to be added as an entry. But this is the latest news, for now. Thanks to everyone - especially Mark's family & friends! - for the incredible support and well-wishes. They mean a lot.

Mark's latest appointment

2008-12-11T16:13:00.000-08:00

For anyone following this blog who is not also following Mark's blog, check out the entry he made about his visit to UCSF this week.

I haven't yet typed up my hand-written notes from my stress test visit last week, mostly because I've been in the throes of the all-consuming Nutcracker production put on by my younger daughter's ballet school. But in the middle of all that, I'm aware that about 50 miles south of the theater, tomorrow a team of professionals will be making a determination regarding whether we can move forward to the next step: scheduling surgery.

Mark said they told him there were only two open surgery dates in January - and I don't even know when they are. So I don't know what that will end up meaning. But this time next week, I'll know more.

Everything is reaching a deeper stage of real - the way a pregnancy does when you first hear the baby's heartbeat, or first feel the baby move. Things moving forward toward something you want to happen but something that is big and exciting and a little scary at the same time. People keep saying that this takes courage. I guess it does. But I think optimism and faith can cancel out fear just as well as courage might, and those are the muscles I've spent longer building anyway.

A Long Day, ending in Inspiration

2008-12-01T23:00:00.001-08:00

This morning I had the stress test, about which I will have to write tomorrow - or the day after, knowing how full tomorrow's schedule will be. The appointment took five hours because they had a staff member call in sick, which resulted in only one tech for the two imaging machines. This meant in turn that I didn't make it to work, but proceeded straight from UCSF to my carpool/mom-taxi duties. After a quick dinner with friends, which was after bringing dinner to the ballerina at the studio, I headed north to see the Pulitzer-prize winning poet Mary Oliver read.

These lines are from her poem "The Summer Day"

Tell me, what is it you plan to do
with your one wild and precious life?

I have a lot of fuzzy unformed plans, but the clearest idea right now is that of donating a kidney, recovering, celebrating in Mark's recovery, and going on to live a long, rich, full life.

Oh, yeah. And I also have to do my Christmas shopping.

Gratitude

2008-11-28T22:22:00.001-08:00

It's been an interesting week of contrasts.

Without going into detail, I'll just say that now that the donation is looking more probable, my sister is really struggling with my decision, and has communicated her concerns more loudly and clearly than ever before. On the downside, it's stressful and challenging to have her feel the way she does, and we may have reached an impasse because we experience and react to the world in such different ways.

If I look at it more positively, though, her response is a significant part of this story that can't be entirely ignored. And even as I document her fears, and my reactions to them (for present processing and future reference), I recognize that it's something that probably any living donor must face. Not everyone will think this is the right decision. That's challenging, but it doesn't change how I feel and what I believe and it doesn't change the facts: Mark needs a kidney. I can give a kidney. The procedure is fairly straight-forward, and the UCSF team is top-notch.

I also hope that the conversation that my sister and I are having will eventually strengthen our relationship. Um. Eventually.

And in contrast to this bump in the Road of Unconditional Support, just yesterday, when Mark and Jenna were on the way to visit Mark's family for Thanksgiving, Mark left me a voicemail message saying that they were thinking of me and were thankful for me. It was such a sweet message, it brought tears to my eyes. (You guys made me cry!)

And it may sound weird, but as thankful as they might be, I'm also thankful. I'm thankful that I have the opportunity to do something that might really make a difference in the lives of such truly good people. And I'm thankful that all the testing has gone as well as it has so far. And that I have the love and support of my husband and my friends. I'm thankful that I have a job that will allow me to take the time off to do this.

And I'm thankful (in advance) for the positive things that will come out of this experience for all of us. In the middle of winter, with the days so short and the weather turning colder and the skies more cloudy, it still feels like a time of hope.

Echo cardiogram Nov. 6th

2008-11-28T19:28:00.000-08:00

So. A little catching up.

The afternooon after my appointment with the transplant team's psychiatrist - way back at the beginning of the month - I'd had my appointment to get an echo cardiogram. Another "-gram," this one conjuring images of a special delivery on a silver tray: a Tarot card with a figure shouting into a canyon. (And as I write this, my oh-so-practical liberal arts education rears its quirky head and I wonder if there's a corresponding Narcissusiogram, involving a mirror...)

The "echo," as my coordinator called it, was back at the Parnassus location, which is already starting to feel like home the way a college campus feels like territory to which you have a valid claim once you've been there a few times.

I had so much time to kill between appointments, I'd tried to have my echo moved up a couple of hours - just hoping for a last-minute cancellation that would mean someone else wouldn't have to shuttle my kids around to activities after school. The last time I'd visited that same 3rd floor office, when I'd had the EKG, the place had been nearly empty. This time, though, the waiting room did look crowded, and the woman behind the desk flatly said no to my request. I didn't push. I have no intention of being the kind of demanding patient that makes everyone's life hard. As before, I was aware that the people waiting in the room were probably for the most part ill. Waiting might even be physically uncomfortable to them. It was not to me.

When I did go back for my appointment in the afternoon, my wait was not long at all before I heard my name called into the room. I looked up and at first mistook the man who'd spoken for a patient. He was short and slight, dressed in jeans and a casual lightweight jacket. He didn't have a lab coat on, and didn't have the air of someone who worked there. But he definitely knew my name and wanted me to follow him, and he seemed to know where we were going. And I suspect in retrospect he must have worn a name tag identifying him as legit.

At any rate, once we started the echo procedure, I had no doubts about his experience and authority.

There's a pretty straight-forward description of what happens during an echo cardiogram at heartsite.com.

The echo cardiogram is also called a cardiac ultrasound. Basically, it's a sonogram similar to the ones done on pregnant mothers, only in this case, the clear goopy gel is put on strategic spots on your chest. There's a transducer, like a medical microphone, that is used to read and record views of your heart.

The walls of the room were full of photos of beautiful landscapes, no doubt meant to sooth or distract anxious patients. But I was too interested in the process to need diversion. The tech had me lie down on my back and then, later, on my side, while he moved the transducer from spot to spot. He had me hold my breath a few times to make sure he could get a clearer image.

I heard the amplified lub-DUB heartbeat sound that I'd last heard when I was pregnant with my second child, and it took me right back to that experience. And in the meantime, on a monitor next to the bed, there was a sonogram display of my heart's chambers emptying and filling and valves flapping open and shut for all they were worth. There was even color; blue and red, which no doubt had significance such as oxygen-poor and oxygen-rich blood, had I remembered my 10th grade physiology class better.

Seeing your heart do its thing real-time on a monitor is an amazing, humbling experience. I mean, that muscle really works. Watching it contract, watching the valves open and close that many beats per minute - so fast, even at rest - I was so grateful that I actually found myself thinking something not too far from, "I love you, darling heart! I'm so proud of you! Keep up the good work!"

It's the kind of thing we know without really appreciating it until something goes wrong - or until we get to see it in action. What an amazing design, what endurance. The heart beats about 2.5 billion times in the average life, and about 100,000 times per day. It doesn't get a break, even if you're sound asleep or on vacation drinking Mai Tais on Bora Bora. The kidneys may filter the blood, but it's the heart that pumps the blood through the body. 24/7.

I chatted with the tech about his work and my work. To offset all the times I said, "wow!" like a sideshow customer while looking at the monitor, I tried to be philosophical and sympathize with the quiet, unimpressed, almost automatic way he was working. So I said casually, "You've probably seen - what? - hundreds? thousands? of hearts since you started doing this." And he agreed with a wry smile. So I asked how long he'd had his job and he said he started in 1982. 1982! Either he's older than he looks or he was something like 12 when he performed his first echo cardiogram. I can't imagine all the stories he could tell.

The readings he took were saved as digital movies to be sent to the transplant team for review. If he saw any anamoly, he didn't say anything about it.

And when I checked in with my coordinator a week later, she also said everything was fine (still).

So one more check mark on the To Do Before Donating list.

Echocardiogram: Check!

Meeting with the Psychiatrist

2008-11-16T16:07:00.000-08:00

Excerpted from notes I took on the 6th after the appointment.

***

I visited with the psychologist this morning. I’d been anxious about seeing her – and it turns out one of the many questions she’d asked is whether I tended to be anxious or worry a lot. Um, yeah. But I worry like a cow chews cud. Out of habit more than neurosis. I think. And as I pointed out to her, as I’ve gotten older, I’ve abandoned one by one some of the more useless worries that I’ve tended to gnaw on over the years. And it’s wonderful how much more energy I have when I’m not frittering it away fretting about things over which I have no control, or things which matter little in the whole scheme of things.

The appointment was at a third UCSF campus; this one is Mt. Zion. (A change from the Greek theology and Parnassus to the Judio-Christian world.)

I had instructions to go to the 2nd floor and at the designated room, key in a 4-digit code into a key pad in order to open the door. I found myself in a tiny waiting room – perhaps six feet square, with a few chairs and collections of magazines and a variety of prints on the walls. The letter I carried from my donor coordinator said I was to wait in the room without knocking on doors; it said someone would come get me. It also said that if I was more than 15 minutes late, they might cancel my appointment & not see me at all. I was supposed to arrive at 9:00, ten minutes before my official appointment, in order to fill out paperwork. I arrived at 9:06 and fretted (of course) that because I was late, I was in trouble.

I whiled away a few minutes assuming there was a hidden camera in the room, and speculating that someone might be watching to perform a preliminary evaluation based on whether I noticed the prints on the walls, which ones I was drawn to, which magazines, if any, I picked out, etc. I looked at each print, ignored the magazines, and read a little from a book I'd brought. I wondered if I was paranoid, thinking that I was under observation. I tried not to look paranoid for anyone who was watching.

When the doctor did show up, she explained that the “10 minutes early” note in the letter was actually a ruse to get people there on time. In my case, it had worked.

The doctor looked to be about my age. She had a relaxed, natural look to her; little to no make-up, loose slacks, a simple top, a practical haircut. She led me to a room where there were two relaxed leather chairs. She took the one that reclined the most. I settled in, trying to look comfortable.

She asked me the questions you might expect her to ask: about my motivation for giving a kidney (which I’ve pretty much already set forth here), about my personality, my history, my experience with other therapists (once when I was twenty I saw a great counselor for two sessions, and a few years ago I saw another fantastic therapist for a few sessions), anything that might raise a red flag with her. She’d started the appointment by saying that it would be best if I was honest. I was. She took copious notes. (Left-handed) I basically told her my story, wondering if it sounded outrageous or tame to her compared to what she’d heard from other people, worrying that something I was saying was making her think I was a poor candidate as a donor.

I left thanking her for her time and I fished for some reassurance. I said, “You know, at the end of all of these appointments, it’s never clear what is being recommended.” (hint hint)

She was frustratingly professional and discreet, saying that she’d give her report to the donor coordinator, and the coordinator and physicians would review it all and discuss it at their meeting and decide there. In other words, she didn’t outright say, “Oh don’t worry! I’ll tell them you’re an excellent candidate and to go right ahead with the process. You're the sanest person I've ever met.” But she also didn't say, "You're cracked, lady. You're so batty even your kidneys need therapy, and you shouldn't even think of giving one to someone else; just go home before I get a white jacket with long sleeves for you."

Like I said, she was very professional.

But she did suggest I check in with my coordinator to get a more realistic sense of how long I might need to recover. She said I should expect at least 6 weeks, and that I should remember that I won’t be able to lift things for three months (I had conveniently forgotten it was that long…)

She also said she'd find out about the writing I was doing around this process; she felt there was probably no problem with it, though.

The next thing that happened that day was the electrocardiogram; that'll be the next blog entry!

Rheumatology Update

2008-11-16T15:40:00.000-08:00

My appointment with the Rheumatologist was on the 4th - twelve days ago.

The appointment was at a Kaiser office less than 10 miles from work, but I ended up stuck in traffic, and therefore late, and therefore a little nervous that they wouldn't see me. But the Doctor made time for me, and in fact seemed to really slow down and assess things carefully rather than breeze through what could be considered fairly routine.

Apart from testing blood pressure and listening to my breathing (for what? I wondered at the time - does Lupus coat the lungs?), he checked the flexibility of my hands and arms and my balance.

For the balance test, first he had me stand in the middle of the room and close my eyes. Then without warning, he pushed me with one hand- first my right shoulder and then my left, from in front and from behind, apparently to see how well I stayed standing. It was such a weird thing - like here was this stranger, but otherwise a nice professional with a stethescope around his neck, pushing me the way a belligerent boy might push a more passive child to dare him or invoke a fight. "Hey you--" push "--yeah, I'm talking to you. You gonna make something of it? Huh? Huh?"--push--"what're ya gonna do, fight me?" Like I say, startling but understandable if I think about it objectively.

Apart from him pushgin me around, we talked about the reason I was there - the request of the Nephrologist to have a specialist determine my chances for developing SLE or another auto-immune type illness that might leave me vulnerable to kidney issues later. But as the Dr. pointed out, these things are not easily quantifiable. My birth mother has arthritis, her mother has arthritis, and her aunt has rheumatoid arthritis - so there's definiately a genetic component at work. And since taking certain pain medication like Ibuprofin will be RIGHT OUT should I donate a kidney, they want to be aware of how I would or wouldn't be treated if I were to develope a related issue.

But the doctor also said that Lupus is actually pretty rare, and that overall, the best we can do is be advised and watch for symptoms. He said my negative ANA test result was a good sign, but in the meantime, to really show we'd "dotted our i's and crossed our t's," he said I should retake the C4 Compound test, since that one had been down a little below "normal." He suggested that the time and distance between where the blood was drawn and the Kaiser lab that ran the tests could account for the lower number. So he set up a requisition for me to go directly to the lab where the test could be re-done.

I did retake the test (on Tuesday), and on Friday, I had the results: 9.4 (where the other had been 9.5). There was a little feeling of deju vu then. As with the fasting blood sugar test, the re-test could be considered "worse" than the original test that prompted the re-test to begin with. Drat.

But the rheumatologist also asked about the blood tests that UCSF had taken, and I made arrangements inform him of those results. I'll have a telephone appointment with him Monday evening, and unless something new he's seen changes his mind, I think he'll still give his professional "go for it" to the UCSF team. (fingers crossed)

You should know

2008-10-31T07:18:00.001-07:00

I feel like I've put the cart before the horse a little bit in this blog, and I'd like to correct that.

This blog is about a lot of things, of course. It's about the process of being screened to donate a kidney. I hope it will also be about the process of donating and recovery too. It's about me and my thoughts and feelings as I go through this process. Maybe too much about me, and I apologize for that, but there it is. It's hard to write a blog about a personal journey without it being so, well, personal.

But the reason behind all the reasons is the kidney recipient himself, Mark. I'd wanted to be a little discreet about Mark and his wife in the interest of their privacy, but they've both been generous and open about me sharing information about them.

For those of you who don't know Mark or Jenna, I have their permission to link to their blog: http://markandjenna.blogspot.com

Check it out. I've read most of the entries now, and I'm blown away by the life of love, kindness and thoughtful self-examination revealed by Jenna and Mark's words.

But the thing is, I shouldn't be surprised. I've known Mark for a while, having worked with him for about eight years, and he's without a doubt one of the the kindest, most thoughtful people I've ever met. He's a GOOD person, you know? A true human being; a mensch in the best sense of the word. The type of person that the world needs more of, and someone who needs to stick around for a good long time, who deserves to be happy and healthy (or at least as healthy as possible!) for years and years to come. This was true before he met Jenna, but it's even more true now.

Jenna is another amazing human being, full of light and sparkle (ask anyone who knows her), and after having had her share of trials and tribulations in life, she and Mark had barely embarked on their happy life together before his kidney failure.

When Mark was first diagnosed, I really felt an impulse to help him, even if that meant giving a kidney. As other things didn't work out with other donor candidates for one reason or another, I only felt the impulse more strongly. And as I said to Mark and Jenna in a recent email, my thinking is basically that Mark needs a kidney, he and Jenna deserve a long happy life together, and I can do this (at least according to the tests so far).

This doesn't make me a hero. Really. In fact, I sometimes suspect I'm being selfishly opportunistic. I'm taking advantage of a situation where I can actually do something of worth and value in this life, and for an awesome human being who is married to another awesome human being.

Donating for a stranger? Or for someone less cool than Mark? Now, that would be a sacrifice. That would be heroic.

New appointments

2008-10-29T07:58:00.000-07:00

Next week, I'll see the rheumatologist. It took a little wrangling and exchanges of messages with my primary care doctor to make this happen. I'm sure my primary care doctor is very kind and competent. But somehow, she always manages to make me feel like she thinks I'm a hypochondriac or an idiot. Or both.

At first I'd left a concise message with the staff, short & sweet to avoid confusion: the transplant nephrologist wants me to see a rheumatologist prior to kidney donation due to family history.

My doctor's first voicemail to me was, "I need to know more about this before I can refer you. Why do they want you to see someone? What's the issue in your family history?"

Fair enough. I called back and left very specific details: my birth mom has Lupus. I have Raynaud's. The nephrologist want to know what the chances are that I might develop Lupus or a related disease later, because he want to make sure I won't be at a disadvantage should that happen. If thejavascript:void(0) risk is considered too high, I won't be allowed to donate my kidney.

My primary doctor's next voicemail to me went something like this (as if speaking to a dim-witted child), "I can refer you to a rheumatologist, but I don't understand what the concern is. It sounds strange to me. I've never heard of Lupus being caused by having your kidney removed." [insert me growling in frustration here]

The rheumatologist's office, on the other hand, understood what I was saying. The person who called me back to make the appointment said, "But you know why you need to see us, right?" and when I said, "Yes!" she said, "That's all that matters, then." I all but proposed marriage to her on the spot.

The other three appointments that have been lined up are
Psychiatrist (1.5 hrs!)
Electro-cardiogram
Pharmacological stress test (I don't know how the "pharmacological" fits in yet. It makes it sound like I'm checking out how many over-the-counter medications I can take at once, or something.)

Renal Angiogram CT Scan, Part 2

2008-10-25T11:46:00.001-07:00

One thing that I haven't mentioned yet is that with every check-in at every lab, before each blood draw or test, including at the front desk of the Imagery office, I'm asked to state not only my name but also my birthday. If I were one of those women who lies about the year she was born (do people really still do that?), I'd be cured of my ways by now. I have that date memorized, man. If they're trying to trick me by asking me every half hour, I've out-smarted them. So - Ha! Maybe the next time they ask, I'll add, "Mark it on your calendar, now. I expect a card." (But only if the person asking displays signs of having a sense of humor.)

A minute after I finish chugging my bottle of water at the CT appointments, I follow a white-coated man from the reception desk to a back waiting room. I'm wearing a white patient bracelet put on my by the chic blond receptionist, but it turns out that things aren't going to get too elaborate beyond that. The white-coated man explains that he's going to have me wait next to the changing rooms (small curtained off booths in a row along one wall), but I won't need to change into a gown for the procedure. I'm relieved to hear this in part because of modesty, and in part because for the whole afternoon, I've been calculating the time that I'm likely to finish my appointments and arrive at home. The ballet school where my younger child is in the Petite Company is having a benefit golf tournament followed by a dinner and small performance, and I'll need to be home to prep and deliver the dancer. She also performed earlier in the day at a ballet production of Beatrix Potter stories, and was taken back to school by Mark and Jenna. They'd asked how they can support me while I was going through testing, and although I don't feel the need for company at my appointments yet, I had been wondering how to work out the child transportation quandary. (Thanks again guys.)

I spend only long enough in the secondary waiting room to read a page or two, and then I'm led to the CT room, a large space with two or three hospital beds and a door that was cracked open but which had a sign like this on it:

A few random thoughts zip through my head. My neighbor worked for UCSF managing the repair of medical equipment for years before he retired, and he has a wealth of stories he's accumulated from everywhere over the years, about things that had been sucked across a room and through walls, etc. into MRI machines. Things like the entire contents of a construction worker's tool belt flying through the air like props in a bad horror movie. I do a quick mental inventory: am I carrying a hammer or screwdriver I'd forgotten about? No. I don't even have any clunky metal jewelry on, so I'm probably pretty safe.

It turns out that hospital bed is just a prep station for the IV. The woman who is helping me (let's call her "Marianna") asks me for my name and birthday and puts a needle in my arm. Somewhere in the middle of the process, another woman comes through the door looking for someone, and she's apparently a friend or coworker who hasn't been around for a while, because there are happy shouted "Long time no see! How are you?!" greetings exchanged across the room. I didn't know whether to be concerned that this is distracting Marianna, someone who after all had a needle next to my flesh, or to assume that a happy technician is a high-performing technician. But it goes well, and Marianna hands me off to a second tech, who introduces himself as though he's my waiter or flight attendant for the day (let's call him Joe). Joe leads me to yet another room, which is divided into a viewing area with monitors on workbench in front of a large glass window, and the CT room, with another bed and a doughnut scanner like this one: He introduces me to another tech (let's call her Cindy), a very cheerful woman who makes me feel like I'm a lucky little kid at the doctor's, and I'd probably get a sticker or grab-bag toy for my trouble.

Joe takes me to the scanner, put a blanket on me and has me pull my pants down to mid-thigh (under the blanket, modesty maintainted). He has me prop my legs up on a large triangular foam cushion so that they're slightly bent. He then puts a small test quantity of the contrast into the IV connection, and he reiterates the warnings that Jenna has already given me that I might have a sense of warmth or the feeling that I've wet my pants. He also says I might taste something metalic. I experience all of those sensations, with the added feeling of something hot high up in the back of my mouth, like a warm iron soup is draining from my sinuses. Joe instructs me to close my eyes while they run a short test. The test takes no time, and then Joe puts more dye in (I don't notice much of an increase in the previous sensations), and says Ill hear instructions to breathe out, breathe in, and hold my breath, and that I shouldn't make the breath too shallow or too deep, just mid-level.

I keep my eyes shut, although Cindy later says I didn't have to, asks "Did Joe forget to tell you when you could open your eyes?" and clicks her tongue in mock exasperation with her colleague's lapse when I shake my head.

The full scan itself is so fast, it couldn't have been more than seven or eight minutes. And with my eyes closed, I can't tell whether what's happening is the bed moving forward and back under the scanner, or the scanner moving above me while the bed moves up and down - but it all feels like a ride at the fair, either way. A sort of rocking and slight jerking back and forth, mixed in with the breathing instructions.

I think I'd expected the angiogram to be more difficult or involved or longer. But then again, I'm not complaining. I recognize that I have a completely different perspective than most people who are having this procedure done might have. For most people, they're getting a CT scan because something in their body is not working properly. Something big or small, something they already know about or are trying to figure out. They don't just have slight anxiety about the process itself and some fretfulness about getting home in time for dinner; they carry with them all the fear or anger or worry about whatever illness or pain or both they're experiencing. They bear the weight of wondering what this procedure will tell them or not tell them about their bodies, about whether something in the complex system that keeps them going has been damaged or diseased, has betrayed them by not working as well or as long as expected.

Cindy instructs me to drink at least four glasses of water as soon as I can to flush out the contrast, and not to drink coffee or alcohol for the day. "And it's Friday night, too!" she sympathizes about this last restriction. But I hadn't planned to drink anyway, so that's not a problem.

I stop at a sandwich shop and get two bottles of water and a pastry, and have emptied the bottles before I reach Van Ness. I make quick work of the pastry too, and continue that night to drink water like there's no tomorrow. I have no side affects of the scan, nor do I expect to, and it's taken me longer to write about the experience than it did to live it!

Quick update

2008-10-24T04:30:00.000-07:00

Yesterday I left a message for my donor coordinator & she left me a message in return.

She said "informally" all the test results are back and fine. They're all within normal range with one "deviation" of .5 which she said is not a problem. After the serious concern on the face of the junior transplant neprhologist about the Raynaud's, my coordinator sounded so business-as-usual. Which was a relief. She said the one doctor does recommend I see a rheumatologist at Kaiser, but that was to weigh out the "risks and advantages" given my "family history." Also, they hadn't yet scheduled the electrocardiogram (another special delivery! this one with lightning bolts on the package, I would guess. Or maybe an eel...) or the stress test. But they would do that as a next step. Sometimes, my life is a stress test. But it'll be good to have someone confirm that my heart's not skipping every thirteenth beat when I'm running, or something.

I left a message for my Kaiser doctor requesting a referral to a rheumatologist. Should hear back today, although I've stupidly left my cell phone at home for the first time in months and will have to wait until this afternoon to get the message.

Will also have to wait to finish the record of the angiogram CT. Hurry up and wait.

Renal Angiogram CT Scan, Part 1

2008-10-22T17:18:00.000-07:00

Still no news from my donor coordinator, but I hadn't written about the angiogram experience and wanted to do so.

But before I do that, I did want to acknowledge something. I realize that my various neuroses are peaking through in this blog. In at least one case, my quirky asides and personal revelations may have been cause for worry. As in, Who is this nut-job who wants to give Mark her kidney? What if her clearly less-than-balanced state creeps its way into Mark's circulatory system? What then? Please try not to worry. I don't think I'm as crazy as I might sound, so kindly insert a wry smile and witty tone where needed in my entries - even if neither is obvious.

On the other hand, there's even been a "bring it on" suggestion from the Anne Lamont ["at-least-I'm-not-as-ill-as-she-is"] fans among my small readership. Well, okay, you guys. As long as you can stand to hear about my innermost thoughts and sometimes bizarre or irreverent takes this adventure, I'm happy to oblige with more personal observations.

About the angiogram.

I have mixed feelings about even the word "angiogram."

Honestly, it sounds like a special delivery that someone brings to your doorstep as a surprise. Like a telegram or a teddy-gram. You answer the doorbell, and there's the uniformed messenger with a nicely wrapped brick-red box shaped like a heart or kidney. "Excuse me miss. I have an angiogram for you." "Really!? For me? This must be my lucky day!"

But the word actually comes from the Greek for vessel and for something written or drawn. (The late Sister Richard Rhodes, who tutored me one-on-one all those years at Dominican in Ancient Greek would be so sorry to know that I had to go to Dictionary.com to confirm this.) It's a drawing. You know, of your kidneys and related pieces. On a screen. Just lay me down and etch-a-sketch my insides.

The other association that "angiogram" conjures up for me, however, is the memory of my mother's angiogram prior to her quadruple bi-pass surgery. Although the bi-pass gave her another seven very special years with us, in the months before her death, she'd more than once blamed her increasing kidney failure on the testing procedure that had involved injecting contrast "dye" into her veins to view her system via x-ray. And I remember her talking about that - even though I truly believe that it was almost certainly the greatly reduced functionality of her heart (never more than about 33% after the surgery) that led to most of her various organ failures, including the general shut-down that she suffered when she died.

On the paperwork I got for this lab workup, there was mention of the fact that the x-ray contrast I'd be given was not sufficient to cause any harm and that it was rare for anyone to show any allergic reaction. Good to know.

I arrived at the China Basin location, right near the SF ball park, about 20 minutes late. I was late because even though I had a niggling memory from previous races that Fell and Oak were near each other, I was so busy reading the clear driving directions from Parnassus to China Basin, I missed my turn, overshot it by four blocks, and had to circle around another 3 blocks out of my way to get back to the point where I'd deviated from the directions. This is how I've seen most of San Francisco over the years. Lost while on my way somewhere. And it's not even that big a city.

Then there was the parking garage, a subterranean sardine-packed torture chamber for drivers with a poor concept of all things spacial (like me), where they tease you into thinking there may be a valet who could help you. If only you could find him. After a 20-point turn during which the minutes ticked by and my empty stomach growled and I noticed the hundreds of nicks and dents in the concrete columns mere inches from all the crowded cars, I squeezed my way out of the Prius and raced to the elevator and up to a swanky open courtyard for the Imagery Center.

I was supposed to go to Entry 7 according to my directions. Glass doors were labeled with an obvious Entry 4 and Entry 5, and there even an Entry 6. But where one might expect an Entry 7 there was just a boarded up area under construction. This calmed me down no end. Lost, late, lost again.

Fortunately, however, the doors for Entry 6 led me around a corner to the reception area and waiting from for CT Scans. The urbane-looking blond receptionist on duty was on the phone with someone else when I walked in, and was so apologetic about not being to help me right away, I felt absolved for arriving late. She had me fill out a form and drink a bottle of water. I finished the water so fast, I thought she was going to accuse me of pouring it into a plant when she wasn't looking.

... to be continued...

(must give family dinner, must take child to Nutcracker rehearsal)

No News, Good News

2008-10-21T05:33:00.000-07:00

I didn't hear from my transplant coordinator yesterday, and I also didn't send her the results of the labwork. If I don't hear from her later today, I'll probably call in and make sure she has access to the lab results. In a way, I want to let sleeping dogs lie. I mean, what if she'd already spoken to the doctors and someone high up in the chain said, "You can't have a person with Raynaud's donate a kidney!" and she just doesn't want to break the news to me?

Except that everyone has seemed otherwise pleased with my otherwise good health.
I should hope so. I could list all the vices I don't have - I don't smoke, have never done drugs (really! honest! you can't lie about that kind of thing when you're doing something like this...), and I have a fairly healthy diet. Maybe a bit heavy on the coffee, but it's not like I'm injecting it into my veins. I haven't has a fast-food meal in six or seven years. And I work out several times a week. That's got to help, right?

Mark's wife Jenna forwarded me this cool news story that Mark's uncle sent him. It seems strange to me that someone would donate to a complete stranger, but then again, it seems strange to other people I know that I would donate to someone who is not an immediate family member. Go figure.

Before the Next Round of Tests

2008-10-19T17:19:00.000-07:00

I've spent a while today posting back entries transcribed from my laptop and notebook.

The only other update to add for now is that the additional blood tests I'd run through the local HMO gleaned quick results.

The tests were for DS-DNA; C3; C4; CH50

Everything was within normal range, with the exception of the C4, which was 9.5 mg/dL when a "standard range" is 10.0-40.0 mg/dL. I was hoping low numbers were good, but in fact, low numbers for this protein test are sometimes tied to SLE. Damn.

I'll forward the results to my donor coordinator and she'll pass them along to the doctor.

She's also scheduling another Electrocardiogram to get a second look at something one doctor saw in my EKG. I find this interesting because three different people had all told me the scan I'd had looked normal, and because out of all this testing, I'd secretly hoped to have an EKG stress test because I've worried off and on for years about some tightness in my chest - which is probably muscular or poor bra design, for all I know. But still. My donor said she could order a stress test too. No problem. So I can take that concern off my list.

The bottom line is that there will be more testing, even though I'd assured my boss that I should be done needing to leave for appointments for now. I'm so lucky that all the managers at work has been very supportive and understanding.

I hope to write up something about the angiogram experience too - although it was less painful and quicker than getting across town and parking in the crowded underground garage at China Basin had been!

Third Trip to the Medical Center

2008-10-17T13:50:00.000-07:00

101708

I’m back in the city for what may be the last round of tests prior to final approval of donor status. I park on the top level of the parking garage, as I did last time I was here. It was the first available floor I came to, but besides that, I always prefer to put my car on the top level with the rather unfounded and morbid thought that if there’s a major earthquake, my little Prius will survive while the cars in levels underneath it stand a good chance of being crushed. This is the way some Californians think. Or maybe it’s just me.

When you’re parked on the open-air top floor of the parking structure like this, you’d think that the direction to go in the garage elevator is down from H to a lower letter to get to the street. But if you notice how thumb-stained and worn down the “I” button is, even if you miss the signs indicating that “I” will get you to Parnassus, you’ll realize that to find the street, you have to go up.

I still think the view from this campus must be the best view of San Francisco there is. You really could be on the peak of the gods, overlooking your hilly domain.

I still have about half an hour before my appointment so I go again to the library to write. It’s a little busier here this morning than it has been, which is to say there are 7 people using the internet computers when you first walk in, instead of the 1 or 2 I saw last time.

I have a full physical at 9am which should take an hour, and an evaluation with a “living donor social worker” which should take an hour, and a Renal CT Angiogram (CTA) at 2:25pm on the other side of the city. I’m not to eat for four hours prior the CTA, which means not after 11am. So I am hoping that the social working meeting won’t take the full hour so I can have a snack before the fasting period. The plain non-fat yogurt and sliced strawberries I had for breakfast is not likely to last me until 3:30, when I expect the CTA will complete.

On the way to the city this morning, I asked the carpool driver for the girls’ ride home to take them to our house instead of the usual drop-off point at the library. She had no problem with this, especially after I explained to her what’s going on with me. I joked that if they ask me again (as I’m sure they will) why I would like to be a kidney donor, I’ll just say that I’m doing it to cull carpool favors.

It really is remarkable how most people respond to learning what I’m trying to do. With very few exceptions, they act like it’s some heroic feat and that I’m some kind of saint. I do not feel this way, and it’s truly not what has motivated me to do this. But I can see that it could become addicting, this ego-feeding praise and awe. I wonder if I should read up on how unintentional heroes—you know, the people who save a child from a burning car and then say, “Anyone would have done the same thing”—how these people keep it real and build up an ability to prevent the responses from swelling their head while still acknowledging the compliments. I spent the first half of my life with self-esteem that was so low as to be practically non-existent, so having it buoyed so much by external forces is a new challenge that I feel ill-equipped to face.

Off to my appointment, now…

11:35
My evaluation with the social worker has ended too late for me to grab a snack before the four-hour countdown begins, and I’m hungrier now than I’d been either of the days that I’d fasted for the glucose tests.

As I mentioned, the view from the campus is great in general. But the view from the Kidney Transplant Clinic waiting room is especially breath-taking. I checked in and read the entertaining click-lit novel I’d brought (The Undomestic Goddess by Sophie Kinsell) and looked at some of the brochures they have available for patients. One brochure (there were 3 issues of it) was a glossy 3 or 4 page booklet that had articles on patient’s rights, kidney donation staff and their roles, etc. – including 2 tear-away recipe cards per issue. I joked with the woman at the front desk: “If you donate a kidney, you get free recipes!” and fortunately, she humored me by laughing. Finally, I was called by young woman who may have been a nurse or intern who started off by having me step on a scale. She waived aside my suggestion that maybe I could take off my big clunky black shoes first, but I still came in at what turned out to be an acceptable 24.8% on the BMI chart. After so long using the “medical scale” at the gym and the workout room at work, I could only compare the digital scale with its large pad for my feet to the scale I’d seen a week ago at the vet’s office when we’d taken R’s rat in to have a tumor checked.

In an exam room, she checked my temperature and put the answer in a measurement that must have been in Celsius, but if it’s anything like my usual reading, it was below normal. Then she took my blood pressure. I think my right arm was something like 102 over 54, and left was 99 over the same number. (Was it 54? Or 64? or 48?). I tried to think calming thoughts while wearing the cuffs. (Ironically, when I go to donate blood I often have to think about stressful things or people that it would not be kind for me to mention here; otherwise, the pressure is too low for me to be allowed to donate.)

After that nurse saw me, one of the transplant nephrologists brought me into another exam room. She introduced herself, went over the facts of my chart and listened to my breathing and heart. She checked my abdomen and, seeing the baggy and stretch-mark covered flesh that has always been there, she asked me if I had lost weight. (I said I had, and in fact, I am. But really, I think the flabby stomach is still from pregnancy 9 years ago – in spite of a million crunches between then and now.) She also took my pulse. Apparently no problem there.

Next we reviewed my medical history, When I mentioned that my birth mother had Lupus and that I have symptoms of Raynaud’s, it really stopped her short. She was more than a little concerned about this, because as I already had learned, Raynaud’s can be an early precursor to something more damaging and kidney-threatening: not just SLE, but also scleroderma. Now I have to check with my birth mom and see whether she was diagnosed with that, but the combination of her Lupus, stroke, arthritis and something-else-I-couldn’t-remember seemed damning enough to this doctor. She said she’d see what the other doctor said, but she for one was really concerned about this.

She brought the other doctor in; the chief transplant nephrologists, a man just as amiable and kind as everyone else here has been. While I sat there, the first doctor reported my case to the senior doctor. They apologized in advance for talking about me as though I wasn’t there, and when I agreed on one of the points the junior doctor made, the senior doctor teased, “This is how I find out whether she’s telling the truth.”

The bottom line was that I was, apparently, “perfectly normal” but my mother’s history of tissue connectivity disease coupled with my Raynaud’s symptoms was cause for concern. Another part of what the junior doctor assessed was the condition of the skin of my hands, and fingers, interestingly enough. She said that my skin seemed thick and dry. I’m not gentle on my hands and I don’t baby them with lotion very often, so between detergents and soap and the weather, I’m not sure that this is cause for alarm. But she suggested it might be. Hmmm. The senior doctor, who also briefly felt my hands, explained that they have to be aware of whether I’d be a risk for something like SLE or scleroderma, because depending on the assessment of that risk, they might only advise me to make an informed decision, or they might not allow me to donate.

It was hard not to have my spirits fall at this possible roadblock. I understand that they’re looking out for my interests – quite apart from Mark’s needs—and I appreciate that they’re so careful and thorough. And I wouldn’t want to end up with a disease like it that could lead to renal failure and find myself needing a kidney. But still, I’m hoping this will be seen to be a minor risk. I brought up my birth mother’s smoking habit both before and after her stroke, but they didn’t seem to think it was a factor. In fact, the junior doctor had said very matter-of-factly that the stroke was because of the Lupus. I wondered how she was so sure; no one had suggested the link to me before, although of course my birth mom has probably been told more than once about it.

The consensus was that I should see a rheumatologist who could diagnose me and suggest the likelihood of me developing a problem in ten or twenty years from now. So much for this being a last round of appointments. But I’m glad to get checked out, because I do have the Raynaud’s happening, and I do sometimes have stiffness in my knuckles in cold weather. Of course, this latter symptom was reported by the junior doctor as a more serious and exaggerated “She has pain in her joints.” Maybe she’s conservative by nature, which is not a bad trait, especially when you’re assessing the health of a potential donor. Or maybe she’s compensating for a less conservative approach from the chief nephrologists? But he certainly didn’t seem casual or careless at all. In fact, I mentioned to them that I felt that the whole staff of the program is great, and I’ve been very impressed by how professional and thorough they are. They seemed to really appreciate the complement. Maybe they don’t get many of them.

I asked about recovery. Apparently, it’s rare that one does not recover after 4 weeks, and one could even start resuming life as it had been at around 2 weeks. But it’s more a question of stamina, and it may be that working half days for a week when back in the office will be the way to go.

I also asked what if all went well, we decided the risk was too minimal to impede surgery, and in spite of that, something happened in ten or twenty years from now that meant I had renal problems and required a transplant. I was told by the senior doctor something that neither the junior doctor nor I knew. Not only would I be able to receive a kidney, but I would be put at the top of the waiting list for my blood type. Nice perk! Although one I hope to never need.

After I left the nephrologists on the 3rd floor, I went back down to the Plaza level to the Transplant Services office to meet with the social worker. I was running late, but fortunately, she was running late too. We met in another small exam room and went over my medical and personal history a little bit. She was just as kind as everyone else I’ve met here so far. I’m fascinated by people who do social work, in part because my maternal grandmother, with whom I’d been close, had worked in that field for a while, and in part because I think being a social worker requires that one be not only a “people person” but that one also have a concern for mankind in general and society in particular. And either seems admirable to me but also completely daunting. I can do one thing for one person at a time at best. This kidney donation is probably the biggest example I’ll have to show for that. But that’s about it. Otherwise, it’s all too huge and hard and overwhelming, and makes me long to watch ant colonies instead. Ant colonies are controlled by a structured hierarchy and a multitude of social dynamics that are mysterious only because I’m not an ant – as opposed to the human social dynamics that are equally beyond my grasp even though its my species.

No. Let me correct that in the interest of honesty. To say that social dynamics are beyond my grasp is a self-depreciating lie. I do get social dynamics. (I’d better, as a writer.) And I can see them play out and, to a certain extent, even predict them or explain them to other people who don’t understand them as well, like my 14-year-old daughter. But I just feel overwhelmed by what I perceive as my own multiple roles within society. Another thing I could blame on my father, if I were inclined to use a dysfunctional upbringing as an excuse for any of my shortcomings or neuroses. Which I’m not.

But okay, back to the social worker evaluation at Transplant Services. It went as well as could be expected, with the exception of another slight hiccup in this process. Because as a twenty-year-old I’d had brief suicidal thoughts once or twice while going through a breakup with my then-boyfriend (who is, coincidently, my now-husband), it is necessary that I see a staff psychiatrist to be cleared by him or her. Apparently, they’re required to do this whenever anyone has mentioned thoughts of suicide anywhere in their past. Even though this was more than half my lifetime ago, when I was an entirely different person, I can appreciate that they need to investigate it as carefully as they investigated my glucose tolerance. Especially since the difficult time had been directly related to stress and, in theory, it might be considered stressful to recover from donating a kidney. (She said wryly.). Here’s the thing, though: the underlying attitude I’d had at that young age – and I was very young, and very insecure at the time – is just not part of who I am now. I mean, honestly. What could be more life affirming than donating a kidney? And I damn well want to stick around afterwards to high-five Mark and live out the rest of what I hope will be a long, happy, productive life. But okay. Another free doctor’s appointment – wheee!

One of the interesting things that came up at both appointments is that there isn’t really a rush for this. Even though Mark is on dialysis every night, it’s ambulatory dialysis and his condition is stable. The social worker pointed out that something could come up with my family that would mean the timing is bad, and we could defray the surgery until later. I agree, but I would like to have the surgery and heal in time for our family vacation on Vancouver Island in April. We shall see.

The CT scan is next, in a little over an hour. I hope to be able to write about it tonight, but we’ll see. Tonight is also a dinner after a benefit golf tournament for my daughter’s ballet company, and she’s performing a dance. And I may well be cleaning up afterward. So it may not be until tomorrow morning that I can post the next installment of this journal.

Musings. Also, Telling My Sister The News

2008-10-16T12:00:00.000-07:00

In a way, it feels like things are happening fast. The medical center lines up the necessary appointments quickly and competently, and I respond to them as soon as possible on every question. I don’t know what my hurry is, because obviously this is the sort of decision one should not make rashly or rush. But I also think about Mark, having been without functional kidneys for just over two years, and I wonder that he’s willing to wait until January for the surgery when we’ve been given the option of potentially having it done as early as early December.

And I also know that this is something I’ve wanted to do and have consciously chosen to do. It’s something that started with what could be considered an impulse or a gut reaction from the beginning of his diagnosis, but which my husband and I have discussed multiple times. I’ve weighed out what I know of the risks and benefits of doing this, and yes, there are plenty of unknowns and factors that can’t be calculated in advance. But since one can never be completely certain of the outcome of anything, including driving to the grocery store, one could go insane—or worse, live a life limited and immobilized by fear—if one never stepped forward bravely into the Unknown.

I think about how I don’t like roller coaster rides. I don’t like fast cars or the idea of zipping along on a motorcycle. But give me a challenge of endurance and will, and I just might bite it off. Maybe that’s the determination and stubbornness that allows for 25-year relationships. (You’d have to ask my husband.) It’s what allowed me to give birth without pain killers and run half-marathons. Combine all that with optimism, good health, and a loving and supportive network of family, friends and friends-of-friends, and kidney donation doesn’t seem at all unreasonable.

Besides, the Voice of What-Could-Go-Wrong belongs to my sister. I’d been afraid to tell her at all about this whole thing. I’d wondered how long I could wait before telling her – after all the tests? After surgery had been scheduled? During recovery? I’d been sure that she was one of the few people most likely to try to talk me out of this, and that she’d be quick to tell me why this was quite possibly a horrible mistake. I’d told D. not to tell her yet, and had also asked our older daughter not to tell her (in case she felt tempted to do so). But when my sister called for a chat and asked, “And how are you?” as though she knew something was up, I assumed that she’d either gotten wind of it somehow, or she just sensed something was wrong – a talent that a few members of my family seem to possess. So I’d spilled the beans. I told her about the process and where I was in it. And her reply was so close to what I’d expected, I might have scripted it for her. A mixture of concern, doomsday prophesies, horror stories, spiraling predictions of how hard my death would be on my husband and children, how of course she’d sell her house and move her business north if that happened to take care of my grief-stricken family, etc. – but also in her passionate response (almost everything she does is passionate), there was a kind of respectful if resigned recognition of the loving, giving quality of this act (which ironically makes me most uncomfortable). She said she doubted she’d give a kidney to even her dearest friend, let alone a co-worker. And what if one of the girls needed a kidney down the road? I told her what D. had told me when we’d gone over the same question: “What am I, chopped liver?” I asked her if she’d donate for one of her nieces, and when she said “Of course,” I said, “So there you go. We’re covered.”

It’s funny. My sister would do just about anything for anyone, and is one of the most generous people I know. In contrast, I’m practically a misanthrope. I forget to ask people about how they’re doing. I am happier alone than at a party. I’m horrible about even buying birthday cards for people (let alone presents). But this relinquishing of one of my organs to another person in the hopes of improving his quality and longevity of life? This I can do.

The Wheels are in Motion

2008-10-15T20:04:00.000-07:00

The title of this blog is somewhat optimistic. It assumes that I will be donating a kidney even though there remain a few more tests to be sure that my health is sound enough, and that all the other extensive UCSF Medical Center procedures are followed to ensure the best possible results for both myself and the recipient.

However, I wanted to create a place other than my little black notebook, scraps of papers, and the back of random deposit slips, to record this experience as it happens. I wanted to write about this, because writing is how I think and how I process feelings. It's one of the means by which I experience life.

And besides, although I haven't traveled very far on the road to donation, even I can see that it's a fascinating journey on many levels. Medically, emotionally, physically, even spirtually - it's a story I want to share.

So this site will grow with more entries, background information, and links to related blogs and web sites.

Thanks for the read.

Second Test Results

2008-10-10T14:30:00.000-07:00

My donor coordinator calls me on my way to pick up kids from a carpool and tells me that the glocuse tolerance test results came in at 97. Considering they'd wanted to see something under 140, I'm really excited about this.

When I'd gone back to the lab for the second draw, they'd also had me get my blood drawn for one of the morning tests that had been canceled by accident (it was one more than was supposed to be canceled, so they had to re-do it). It's a good thing I'm not at all bothered by needles, or by having both arms used in a single day. Those results are apparently fine, too.

The next step is a full check up by the transplant nephrologists, an evaluation with a social worker, and a renal angiogram. The coordinator had initially make a date for November 12th, but then she calls to tell me that another date has opened up: October 17th, and would I like that? Yes, I would.

Second Trip to the Medical Center, more tests

2008-10-08T10:30:00.000-07:00

I’ve just drunk a cup of the lemon lime glucose drink they give you to for a 2-hour blood sugar test. The nurse at the desk watched me do it. It didn’t taste anywhere near as bad as I was afraid it would, and there was far less of it than I thought there would be. It was like having a Sprite. And it was either less than I was required to take when pregnant, or it just seems like nothing since my bladder is not being squeezed by a baby.

I’d arrived a little later this morning than I did last week, but I was still having my blood drawn by 8am. It was only just after the draw, when I was checking my time, that I saw that I had a message from my donor coordinator. She said she hadn’t heard whether my HMO would pay for the double strand DNA test, and as a result she wasn’t going to have me take it – in case the ANA test alone was sufficient. I went to her office one floor below the Ambulatory Care Clinic where my blood had been drawn, and she called down to have the lab order changed. She also had someone validate my parking at the same time.

I took a nap in my car then went to check the lab results. To my dismay (I think I even said “Oh no!”), they told me that my fasting blood sugar level was 103 - two points higher than last week's number. I’d fasted a couple of hours longer than I’d had to last night, hoping that would help. But obviously, it didn't. asked whether I would still be allowed to take the next test, and I was assured by the lab receptionist (who I suspected may not know why I was concerned) that numbers under 125 were okay.

Now I’m to report back five minutes before my 2-hour draw time of 11:18, and they’ll check to see whether the numbers are 140 or lower. In the meantime, I’m not to eat anything, smoke, or exercise vigorously. This last confirms the thought I’d had that by going for a brisk walk after the glucose drink, I could bring my numbers down. As much as I want to donate, and want this go forward for Mark’s sake and, selfishly, my own, I’m only the tiniest bit tempted to try to manipulate the numbers. I know that it won’t do me much good if I’m pre-diabetic and as a result, end up really needing both kidneys in twenty or thirty years from now. I also don’t know how it would affect the kidney in Mark, for that matter. But I realize that I’d had my heart and mind set on donating, so I hope all is well. Mark is philosophical, or at least, puts on a really good show of not having his hopes up. When I expressed concern about the last higher-than-they-wanted-to-see test results, he reminded me that if nothing else, this gives me a full medical workup for my own reference. He also said he’s not worried.

I try to step out of my own head for a minute and look at it as other people will. It would not mean I’m a bad person, or that I have failed in some disgraceful way, if it turns out I just don’t qualify to donate. No one, not even Mark or his wife, will hold it against me. Mark has said from the beginning that he really appreciates me even getting tested, and I guess – again, trying to look at it objectively, and without the filter of the high standards I hold myself too – he’s right, it’s a significant thing, even if it ends up being just a gesture and not the full deal.

But here I am in this time that I knew would be tricky, holding my breath and shaking my foot a little while I write, just to burn off that much more (potentially), trying to visualize low numbers and how happy we’ll be to get the news that we’re still on.

I have an hour to go. It’s so rare that I have this much time to myself. It’s what I usually long for, so I can write poetry or finish my novel. It’s hard to do right now because I’m distracted, and the slightest bit queasy too, as if the glucose on an empty stomach was starting to get to me. Never mind that I haven’t had caffeine for two days, having read that it might affect insulin production. So that I have a headache as well. And, true to my nature, I worry that the general malaise will keep everything from working just swimmingly.

Better to work on the novel. There will always be plenty of excuses and reasons not to. If I don’t start ignoring them now, how will I ever become a writer?

First Test Results

2008-10-06T16:30:00.000-07:00

[Actually, the very first test results had been from the 12 vials of blood drawn weeks ago--but those crucial ones had shown the tissue matching that allowed for the steps that have followed since.]

My transplant coordinator calls within a few days after the tests taken at the medical center. The results are mostly good.There are just two small issues: one was that the urine test I took while there was "contaminated" (I swear, I didn't spit in it or anything, but who knows what happened to it once I put it behind the metal door in the restroom and on the little pass-through shelf?)

The other problem of sorts is that my fasting blood sugar number is a little higher than they like to see - 101, when they prefer something within the range of 70-99. However, this doesn't necessarily mean I'm pre-diabetic. It only means that they'd like to perform a glucose tolerance test to see what that shows. Although there's no diabetes in my family that I know of, of course now I worry that all those "sugar-sandwiches" I had as a child are coming back to haunt me. Don't ask. You don't want to know.

So I'm to go back in after another fast and do another round of tests. In addition to the re-take of the urine and fasting tests, they'd also like to draw blood to further look into any red flags associated with the Raynaud's symptoms I have.

I'd gone to see my Kaiser doctor in February about the Raynaud's problem I'd just noticed, and they'd done an ANA test, which was negative, as well as a C-Reactive protein test that had a value of 0 mg/dL (where <0.5 mg/dL is normal). Since my birth mother has Lupus (aka SLE), and Raynaud's can be an early symptom of SLE - and since SLE can wreak havoc on one's kidneys, this is something that the transplant folks want to investigate further. So I'll be going in Thursday for all that.

First Trip to the Medical Center

2008-09-29T12:00:00.000-07:00

I'm sitting at the lab waiting area, waiting for my number to display. I’d been told that the lab opens at 7:30. I check in at 7:17, after find the school and the correct parking lot (they’ll only validate your ticket for one lot in particular) without incident.

When the lab receptionist asks for my requisition, I have a moment of panic: I hadn’t come here straight from a doctor’s appointment—I didn’t have a little lab slip. But I did have all that paperwork from my donor coordinator, I remember in the next instant. I hand the whole lot over to her. Apparently satisfied, she hands the paperwork back to me, along with a ticket with a number on it. There are seven people ahead of me. I’m glad I arrived so early.

Not surprisingly, the people waiting here seem under the weather, older or frail or worn down. Maybe I’d been expecting a cheery little waiting room full of happy potential donors? With glossy magazines and overstuffed chairs, like a Starbucks?

I sit down and start to write. It occurs to me that the only other time I write so much, especially in public, is when I’m traveling. That seems appropriate. I’m certainly on a journey now.

So here I am, with a Baltic blue UCSF folder full of my day’s schedule and page after page of somewhat cryptic and intimidating lab forms. At my feet, I’ve set the paper grocery bag that holds a brown plastic jug full of 24 hours’ worth of urine. I’m also carrying the two stool samples they’d requested (no need to go into details there, but suffice it to say that the samples are only tiny smears on special little cardboard tabs). It’s strange to walk around carrying that bag. You can’t help but think things like, “Who could guess what’s in this bag?” or “I’d love to see the face of any purse-snatcher who grabs this thinking it’s something of value!”

Another woman just walked past with a blue folder matching mine. Another donor? The center has performs more than 200 transplants per year, and I’ve read that up to two thirds of living donors candidates are rejected, so it stands to reason that I’m not the only person going through this particular set of tests today.

* * *

The blood work goes fine. I learn that in addition to the 24 hours worth of urine they’ve got coming from me, they’d like another sample. I take a few swigs from the stainless steel water bottle I’d brought to facilitate that step. On the way out of the small restroom (everything is ever so slightly worn, folded or yellow, chipped or cracked), the lab tech flags me down for one more blood sample. I go back to his tiny workstation and proffer the other arm, which, he tells me, has a “textbook” vein. Funny how something like that, over which one has absolutely no control, can buoy one’s ego. (I think, Am I that insecure? Am I actually only donating a kidney to gather the complements involved? How sick is that? But I still think it, because I'm in the habit of self-analysis and because I want to be honest, especially with myself -- as well as with the readers of this blog -- regarding my motivation in all this.)

After the lab work, I get an EKG and a chest X-Ray at two different locations on the campus. The chest X-Ray is on the 3rd floor of the Ambulatory Care Center building, and the EKG is down the road a bit. I’m allowed to eat and I do so. Then there’s one more stop to hand in paperwork and have my parking ticket validated. I meet my transplant coordinator, with whom I’ve spoken on the phone several times, and we go over what happens next. She says she could know as early as Monday whether I’m eligible to donate. It feels like things are potentially happening fast, but at the same time, a week feels like a long time to wait and see whether I’m in fact carrying some hideous disease or other horrible red flag that will preclude me from being a donor.

From Could to Should to Would

2008-09-28T10:00:00.000-07:00

At a gathering of friends when someone in-the-know share the news that I’m starting this process, another woman tells me about her friend, who donated (also to a male coworker), and how the donor was effectively “crippled” for two years after the surgery because of “phantom pain” that no one can seem to diagnose. (Fun!) However, the donor says in spite the negative results, she’d do it all again in a heartbeat. Apparently, the recipient had seemed “transformed” with better health almost immediately after the surgery. I can only hope that Mark experiences this as well.

Interestingly, this friend of a friend had felt certain from the beginning of her coworker’s diagnosis that she would be his donor, and had told him as much. My situation was similar in that I’d felt from the get-go that I could and should donate, and I think I’d said so to Mark. But it had seemed a little trigger-happy for me to jump into the fray when there were candidates with more obvious motives than just knowing Mark is a great guy and having a gut response to be his donor. It was only once his wife and family members had gone through testing that I’d been more certain that this was something I had to do.

Multiple conversations with my husband followed. We've been together for 25 years, and I think it's safe to say I'm a fairly easy person (as long as my micromanagement needs are met - mwah-ha-ha!). I'm not high maintenance, I don't think. And I'm certainly not driven by whims. But D. recognizes that this was one of those firm decisions that once made, I don't let go of easily. He's obviously concerned about my safety, but he also knows how awesome Mark is. He'd also had the same initial response: Hey, I'd give this guy a kidney, so he understands how I feel. And the bottom line is, as he put it, it's my body so it's my decision. He says he'll support me regardless. And I've already seen a ton of evidence to show that's true. I think if I didn't have such a generous partner in life, I'd never consider doing this.

Vanity

2008-09-21T10:00:00.000-07:00

I have these random thoughts. Things that I wonder. For example, will I need to wear a medical bracelet after surgery, indicating that I have only one kidney? I want to ask my donor coordinator, but I feel like she’d think “Honey, if you’re worried about that, you’re missing the big picture.” Maybe it’s a defensive measure: focusing on the small things to distract oneself from the big things? I mean, it sure beats dwelling on the worst risks associated with abdominal surgery and having an organ removed.

Not in English, anyway

2008-09-17T10:00:00.000-07:00

Today, my good friend J. (whose best friend is Mark’s wife), called to congratulate me.
There isn’t a word or phrase that exists in this language to express “Congratulations on this altruistic but potentially dangerous thing you might be doing.” Maybe another language has a phrase for it. Something like “good hunting,” perhaps.