6+ months post transplant, and all is well

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 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

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

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

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)

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!

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

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!!!!