First off, welcome! I have been contemplating for weeks on whether or not to chronicle my journey to live kidney donation through a blog. I was torn on sharing something so personal with the rest of the world, even though I will be keeping my posts as anonymous as possible. I really made my decision a couple of days ago to do so. I have come to realize that while most of the attention through this process is focused on the intended recipient (as it should be. They are the ones in dire need, after all!), the donors are making a HUGE sacrifice (which is recognized, in my case). But I have also realized that I have yet to see any anecdotes written from either perspective. I would like to change that, so that others can see the process unfold candidly. As silly as it is, the urge to write this blog has become all-consuming. Thank you for reading, and hopefully as this process unfolds, there will be something important to take away from it. Now, on with the show! :)
This journey started a few years back, when a close friend of my husband (we'll call him J) let us know that his kidney function was declining. He has Polycystic Kidney Disease, a chronic condition that causes the kidneys to form huge cysts and kidney stones. There is no cure, except for a transplant. Those few years back, we all naively thought he still had a ton of time before a transplant was even in the horizon. His condition could be managed with medication, somewhat. They could treat the stones by blasting them; he had this done a couple of times, "the exact opposite of fun" is what I believe he said. Because of the kidney disease, he has some secondary health issues, all manageable with medications. The guy is a walking pharmacy! I remember feeling horrible for him, as he is relatively young and on more meds than a 65 year old. After a particularly nasty bout with either a cyst or stone (I don't remember which now), we were all talking about what his doctors were thinking as far as treatment. The answer was the same: meds and acute treatment as needed, but a transplant was 3-5 years down the road.
*Now before I proceed, here is a link to The Polycystic Kidney Disease resource website: www.pdkcure.org There is tons of info on ADPDK, the form of kidney disease affecting J. Back to our regularly scheduled programming.
3-5 years down the road.... mmm, yes. That's where I chimed in and said "J, you can have one of my kidneys!" No, I did not know if we shared the same blood type. No, I did not think that I was going to happen anytime soon (naive, much?), and NO, I did not think in a million years that he would ever accept a kidney from his best friend's (at the time) girlfriend. He laughed and said "I still have a ton of time left before we have to think about that. Yep, we'll see about that, buddy.
Fast forward roughly 3 years later: here we are. J's kidneys are failing. They are basically kaput. By all rights, he should be on dialysis, but his nephrologist (kidney doctor) assures him that since he is still producing urine it's not a necessity. I'm still scratching my head on that one. Anywhooooo, back to how we got here (and bear with me. Details are a tad fuzzy now because we've moved so dang fast). A week or two before Thanksgiving of this year, J has an appointment with his nephrologist. His latest labs are looking terrible. His kidneys are failing at an alarming rate (to me, anyway), and that he needs to make an appointment with the transplant clinic at the University Hospital. However, the good doctor states that J still could potentially have months to a year before he needs a transplant. *If I'm going to be candid, I should probably say that hearing this infuriates me. I used to work in a medical profession, before my child was born. I am very familiar with lab values, and I had been sporadically doing research to become knowledgeable in J's condition. His lab values scared the sh!t out of me! I was holding my breath to hear the dreaded "dialysis" word. I almost passed out.
Now to the really fun part. Are you ready, 'cause here goes! J calls the transplant clinic and explains his situation to the coordinator. Gets an appointment for the week after Thanksgiving. Transplant clinic mails out a packet the size of "War and Peace", which includes his appointment time, date, and a note saying that it is preferable for someone from his support system as well as "intended donors" (me) to be there. This appointment started at 7:45 am and went until 2:30. We met with the surgeon, cardiologist, nutritionist, social worker, transplant Nurse Practitioner, financial counselor, and had lab drawn (these people sure do like taking bodily fluids!). They drew blood from me to confirm my blood type and to do what is called a cross-match: they mix a sample of my blood with J's blood and make sure that J's blood doesn't produce antibodies and attack my cells. This would be a very bad thing. The antibodies his blood produces would attack my newly-transplanted kidney and cause rejection. I spent my whole life growing this kidney! I don't want to see it die before its time!!!
*Yes, I know that rejection is a real possibility. I also now know it's a shade less likely because J's blood isn't going to go all "Rambo" on my bean.
In meeting with the surgeon, I learned a little about my portion of the surgical process: I learned that my kidney will be removed through a *tiny* 5 centimeter incision near my belly button. That's 2 inches, folks. The average kidney is 4-5 inches long, 2-3 inches wide, and an inch thick, according to my research and first-hand experience in the cadaver lab. I don't know how they make it work, and quite frankly I'm not sure that I do want to know. I learned that I will be in the hospital 2-3 days to make sure that my remaining kidney, now left to do the job for 2, is appropriately compensating. I assume this will mean peeing into funny shaped bowls and having my urine measured and tested, as well as more involuntary blood donation. Then, after I'm discharged from the hospital, I get to hang out at home with my husband, rambunctious toddler, and whatever family and friends come a calling for two whole weeks. Bum deal, huh? But, prior to having holes cut into my body so I can help my friend live, I have to pee in a bottle to 24 continuous hours to make sure MY kidneys are doing their job correctly (pop quiz time!), have more blood drawn to check my glucose tolerance (I'm not diabetic, I swear) and check about a bajillion other things. Then I get to spend another glorious day at the transplant clinic meeting with the transplant team, again. Only this time, the focus is on my part in the process. Yay!
Ladies and gentlemen, if you've made it this far, I thank you. I hope that you'll continue reading and will be making another installment very soon. Good Night!
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