A Very Special Part of Me Went Back to My Hometown of Cleveland, Ohio to Live
It was exactly one week ago, January 29th, (my birthday) when the Surgeons and the Shipping Department at California Pacific Medical Center cooperatively packed my left kidney in a box and sent it to Cleveland, Ohio. I’m told it is doing well. I hope it is staying as warm as can be expected inside an entirely different body. I imagine the kidney having quite a bit of resentment: See, I grew up in Cleveland and it must have heard me say I would never go back there to live. What could it have possibly done to deserve such a fate?
I am at the computer in the music room, and Janette is asleep in the bedroom. One week ago her new kidney arrived in a cardboard box with a handle that was fashioned with packing tape. It was the most unceremonious package I could have imagined. I was sure that the package would glow, as if by magic, like the insides of the briefcase in “Pulp Fiction”.
Still this was it. This was the first time that we were absolutely certain that this operation was going to go through, and in less than one hour from seeing the box. I would go into one operating room and Janette (my girlfriend) would go into another, and we’d both come out with one working kidney each.
Janette and I weren’t a match. Despite the fact that OkCupid said we were, and despite the fact that we have been together for nearly two years and are now living together, our blood tests said that we were not a match. We were both A+ blood type but there were other numbers that would not allow me to donate my kidney directly to Janette. Sadly, her son was not a good match either. We did have a plan B though and we were ready to use it.
Plan B is called “Paired Donation”. The basics of Paired Donation are that I donate my kidney, but it doesn’t go directly to Janette. It goes to someone who is a match. That someone has a volunteer donor who, if not a match for Janette, is a match for another donor, and so on, and so on. 12 couples later, and Janette has a kidney donor who matches her. May the circle be un-broken.
To make a long story longer, but in an attempt to keep it from being too long, I will recount in as few paragraphs as possible, what brought us to this point. Janette and I met online, and from the very first date, we were a “natural”. While different in so many ways, those ways seemed to balance us collectively and it just worked. We were both physically active, although her much more than me. She did yoga every morning, kayaked like a pro, and ate so healthily, that even with my vegetarian diet, I was impressed. Our relationship was going great, even though we had some growing pains and there was a long commute at first, by the time her renal failure happened we were (are) most definitely in love. There were increasingly signs of her health crisis along the way, and me being kind of a dick, at first just made fun of her…not realizing. She itched constantly. “Cooties?” She would walk up a hill, and be out of breath. “You might want to mix in some cardio with all that yoga-fying!” Then one day we went less than a block on our bicycles, flat terrain, and she’s breathing really hard. “Okay, this is serious.” She called her doctor, was seen quickly, and before we had even a chance to say the word dialysis, she had this huge spigot below her right clavicle and she was in dialysis. I know she had had a kidney infection (nephritis) more than 20 years ago, but I, no we, both thought that it was never going to be an issue. Within a month, I moved into her house bringing my raggedy old cat and my bass gear along, and we rolled up our sleeves determined to get through this. She had to leave a job she loved, and her new job became being a kidney patient. She learned to cook kidney friendly recipes, learned to be ever mindful of her body changes, and learned enough about dialysis that she could spot a “newbie” clinician at the dialysis clinic almost instantly. She crumbled more on the inside than the outside, but her foundation remained amazingly strong. She was nothing short of heroic.
Me? I was just okay. I told myself I’d go to dialysis with her as often as possible, but that idea died quickly and I was the one who killed it. While I don’t feel good about this, I can tell you that if you’ve ever been to a dialysis clinic, they are anything but joyful places. To accompany her would involve me sitting in an uncomfortable chair, provided as an afterthought, as most dialysis patients are always alone. I could sit in the waiting room, but I abhor most television and find the noise extremely annoying. So, little by little, I accompanied her less and less, and soon, not at all. I did go to almost all of the many doctors’ appointments. I can’t tell you when I decided to be a donor. I don’t really remember that. What I can tell you is that there was never a doubt in my mind that I would, if they would let me. I’ve survived things in my lifetime that were much less survivable. I was in a position to donate, as I just had to sub out some gigs for a month or two, should the opportunity occur. Between myself and Janette’s son, I was the better first choice for two reasons. The first is that, should (knock wood) Janette’s first transplant not work out, or not last the rest of her life, her son would still be young enough to be a back-up. I was 57 at the time, and this window was closing fast. The second was, naturally, that any parent would not want to see their child undergo surgery, if avoidable. This avoided her son having surgery for the foreseeable future.
All right, there’s a third reason. I’m a bad-ass. I like to think I am, at least. I take the dare every time. I truly believe I can get through anything, if anyone can. So, there’s that. There was never a moment’s hesitation in my mind or heart about giving up my kidney, even when we struggled. Wow, did we ever struggle! This was NOT the relationship either of us started with. We had this third entity coming between us, this “renal failure thang”, and it was greedy for her attention and energy. We were living together, I think in a bit of an accelerated fashion and there were of course the natural “growing pains” of moving in together. Okay, there’s also the fact that I am just not easy! I’m unfocused, undisciplined and unmanageable, while Janette is a manager, in every sense of the word. The job she left was of being a showroom manager, and now here I was, her solitary “employee”. My dishwashing alone nearly killed us as a couple! I thought, “Holy fuck, if I could just take my kidney out myself and leave it in a jar till she was ready for it, I would! I tells ya, I would!” But.. I love her, AND I’m a man of my word, AND I’m a bad-ass, AND I’m gonna do this no matter what, AND AND AND….”
We were hoping, almost sure, that the surgery was going to happen even sooner than it did. Two times previously we were disappointed when the circle of donor/recipients had collapsed because someone didn’t pass some test. Some numbers didn’t match up. Maybe, someone just chickened out. That’s their prerogative. That was my prerogative as well. The transplant staff reminded me that more than a few times. Janette reminded me as well. “Hush.”
Seriously, though, why would I back out? The pain would pass. The scars would be like medals, and I’d wear them proudly. I could get away with it financially, though maybe not in luxury. It just seemed like such a small price to pay. At the end of it, was Janette and I, much closer to being what we were before this third entity interrupted our life in such rude fashion. That, in itself, was reason to endure the operation and much more, if necessary.
With each surgical postponement the mood around the house got darker, and our positive thinking started to fade, and then! At the beginning of January we got something we never had before. A date! January 29th..my birthday. We had to make it to January 29th. We lit candles every night, which is a curious practice for two atheists. The entire focus was to remain positive! We talked about our plans together in the warm gold light of the candle and her hand felt precious and small in mine. We cried a lot. I cried like a bad-ass, you know. But I cried.
Happy birthday, me! January 29th, 1 p.m.:
We are both hungry and anxious. We did not eat for almost 24 hours before showing up at the hospital and we are still sure something is going to go wrong, till we see her surgeon holding up her kidney box as if it just arrived from Amazon. (I rate that vendor with 5 stars!) Then, seriously the rest is a blur. I remember meeting my surgeon. He seemed confident and was certainly pleasant. He went to mark the left side of my torso from where they would take the kidney (No mistakes!) and when the nurse gave him the marker, he dropped it! “I want a new surgeon!” I said immediately and this cracked everyone, including the surgeon up! I love when I’m funny!
Janette went into surgery first. We kissed a lot, and I savored them. I can close my eyes and feel them now, because seriously, in my heart, I knew they wouldn’t be the last, but life never has any guarantees. Life under these circumstances has even fewer.
I went into surgery almost immediately afterwards. “Welcome to my birthday party!” I told the surgical team. “Do a good job, and you’re all invited to the next one as well. I’m sure it’ll be much more fun. “ They all wished me a happy birthday, and that was my last memory, pre-anesthesia. Roughly three hours later I was in a large hospital room, alone. I had IV’s connected to my arm, and I was alive. Janette was alive. I can’t remember who told me, but I remember I was told. Oh…and she was peeing great! Did you know that dialysis patients eventually stop peeing? Janette didn’t, but she peed a lot less. Not now, though. Now she was, as her son reported “making GREAT PEE!” Rejoice, world, rejoice! I got on Facebook, (the most efficient way) to tell as many loved ones as possible that we were not dead yet! Far from it. I also made plans to pay my bills the next day. I mean, really, why do it before the surgery? Then I slept. I slept a lot, I’m sure of it. The next day, it was time to walk. The pain meds were doing their job, and possibly maybe too well, as I thought it a good idea to walk the long hospital corridors to Janette’s room without a wheelchair back-up. My nurse, Brad, must have understood the code of bad-assedness and did not raise any real objection but more than enough concern to cover his ass. I shook off the wheel chair pitch and walked slowly and bent over as if I had an invisible aluminum walker in front of me.. and there’s Janette.
There’s Janette! She is all gold and honey and glowing to my eyes like the inside of the briefcase in “Pulp Fiction”. “We did it, baby! We did it!” We did more than it… we did something amazing! We held hands, and kissed each other’s. Then after a few minutes I walked back to my hospital room. (Bad idea!!) But I made it, and paid the price for it over the next few hours, till I relented and finally pressed the little black joy button of relief… and slept more. It would be the only time I pressed that button.
Janette’s surgeon visited me, and informed me that the woman Janette received her kidney from phoned her to inquire about Janette’s health. The woman donated her kidney that her daughter would receive one. When the woman found out her daughter was doing great, the next important thing for this woman was to find out she really “completed” her end of the bargain; that the kidney offered was in good working order. The woman, from the surgeons report, cried. “Like.. really cried.” I understand that kind of crying.
Within 72 hours of being poked, and having meds pumped and fed to us, and having blood pressures and temperatures taken and having instructions recited to us AND AND AND.. we were on our way home. Pillows over our abdomens, and seatbelts over the pillows, I was silently commanding, in my mind that her son not drive like her son, which is somewhat scary. He must have read my mind, or most likely just knew he had fragile cargo, and drove accordingly.
We hobbled about the house for a while. Janette’s son made meals for us for a day, and the next day Janette’s daughter and grandson arrived and she made even better meals for us. We walked more upright, and then we walked outside. Then I walked around the block..because bad-ass, that’s why! Okay, that’s not why, really. Because, it really wasn’t that hard! None of this was that hard, but the waiting. I’m sure we will remember the waiting more than the pain. I don’t really remember the pain even now. I remember not feeling more. I waited to, and at times it felt pretty bad, but never a serious challenge. There was nothing I know now, that would have prevented me from donating, had I known it before the operation. Nothing! Janette also proved a bad-ass, and we are both doing well on some non-narcotic pain reliever which we take very sparingly. Oh, and the laxatives and stool softeners, which were necessitated by the pain meds and anesthesia. I’m sure you don’t want to know about that, but I can now say with some certainty that I know where the expression “Holy shit!” comes from. It was near religious that first time after surgery. You really can’t force yourself when your abdomen is held together by Steri-strips. You just have to be very patient, but the distension is one of the most uncomfortable aspects of this whole thing.
Now, it’s been a week. I wanted to get this story out as soon as possible, and tell you we are doing so much better than I would have expected, and I expected a lot! We are up and about and our biggest challenge is following doctor’s orders to go slow. “There’s time.”
There is time. There is time now for us to do things we dreamed about when we first got started, Janette and I. There is time, and energy to pursue our dreams and our life together. There is time for me to sit and write this story and write the next one as well, though it may never be as relevant or important as this.
There is time for me to advocate! That’s my point, right now. If you can, GIVE! If you don’t want to do it while alive, for humanity’s sake, please give when you’re not. Check that little box at the DMV! If you can do it while alive and are at all apprehensive, please, please and PLEASE contact me. I can tell you how bad-ass it feels. Bad-ass!
Just. Plain. Bad-ass.