The decision to donate my left kidney came in a matter of 12 seconds. I asked a friend how her father, Cruz, was. He had been on dialysis for many years and he’d been on the kidney waiting list for just as long. The honesty in her face and hearing about his struggle with infections and the dialysis schedule was all I needed to hear. I spoke with my husband about volunteering my kidney and within a couple of days I started what would become a 10-month-long process.
Before I go straight into technical details about the donation process, let me explain a few simple things. Cruz is a father, husband, grandfather, brother, uncle and a person who is loved and cherished by other people. As most people who work in healthcare know, renal failure is not easy, it is not pretty and its effects are far reaching beyond dialysis. I had met him once briefly, but even if I hadn’t, I still would have volunteered my kidney.
The Long and Winding Process
The process to donate is daunting and tedious—and for good reason. I started by filling out an online questionnaire to get a baseline of my mental and physical health. It’s slightly invasive and very thorough. I was asked whether I wanted to be a direct donor, an altruistic donor or if I was interested in being part of a chain of donations. I was told that after passing this phase, I’d be contacted by a donor coordinator to start the testing process. I waited about 10 days until I started calling the clinic at least once a week. It took nearly two and half months of me leaving lengthy messages to even receive a call back. Once I was assigned a coordinator I received the initial testing kit which consists of a 24-hour urine collection jug and orders for multiple blood vials. These samples run the full testing gamut and are also used to match your blood with your recipients. My donation was being coordinated out of Utah, but almost all of my testing would be done through St. Luke’s in Boise. Once I was deemed healthy enough, I moved onto the education portion where I had to take a class on the risks and long term effects of donations. I learned about renal failure, kidney function, and the actual removal. After deciding to move forward, I was assigned to an advocate/social worker who put me through a psycho-social evaluation to make sure I was mentally healthy and prepared for donating a part of my body. I was reminded over and over that I could back out at any time. And if you decide to, they will simply tell your recipient you were not a match. The recipient is never notified of this process, nor are they updated with any of the stages of testing. As far as they know they are still on dialysis waiting for a kidney. But my mind was set from the beginning.
Testing 1, 2, 3
Next, I drove to Salt Lake for my in-person clinic visit. This visit consists of more urine samples, more blood samples, a CT scan, a chest X-ray, a 12-lead, dietician meetings and meetings with your coordinator, advocate and surgeon. It’s at this meeting you decide which kidney to donate. Luckily, I had two very healthy kidneys. I was told my left kidney had a longer ureter and artery which makes the donation a little easier. The right kidney, which is located next to your liver, is more work for the surgeon and a little higher risk to extract. When I left this appointment I was told my case would go before the transplant board the following day and they would decide if my recipient and I qualified for surgery. Once I got the green light, my recipient was notified and we picked a surgery date! I had one more round of testing done about five days before surgery to ensure nothing changed and that my recipient’s body would still likely accept my kidney. The final stage was waking up early one morning and walking into a surgery suite to gown up, be asked one more time if you still want to donate, and then venture off into a peaceful Versed-induced sleep.
The Nitty Gritty
The real world version of all of that testing is simple. It is many hours of waiting, calling, driving to give blood and diving headfirst into the rabbit hole of research. I tried to keep Cruz informed throughout the process and was in constant contact with his daughter with any news or testing I participated in. My first call to the transplant center was in September of 2015. I took my education class in December and had my clinic visit in April of 2016. Early on, it becomes fairly all-consuming. I had a 5 hour drive back to Boise by myself after the initial clinic visit in Salt Lake. I had done everything I could up to that point to ensure I had a healthy kidney, and now it was in a team of strangers’ hands to decide if we moved forward.
I made a few personal dietary and lifestyle health changes when I decided to donate, none of which were asked of me, but all of them made me feel like I was doing the best I could to ensure the healthiest kidney for Cruz. I gave up meat and dairy, which believe it or not, was received by others with less enthusiasm than my choice to donate a kidney. I researched renal diets and best possible ways for my body to recover post surgery.
I don’t remember the surgery itself. I know it was July 5th, exactly ten months to the day I volunteered to donate. I remember waking up extremely nauseated while my husband and dearest friend stayed with me listening to me moan for hours. I knew Cruz had made it out of recovery as well. The pain was minimal as long as I stayed on top of my medication for the first 24 hours. I imagine it’s like any surgery except I had the privilege of sharing a wall with the person who got my kidney. I got to pass his room on my walks and vice versa. His visitors came to my room to check on me and for the two days I was in the hospital I came to completely understand the gravity of my choice. When I left the hospital, I had to have two people contracted to be my care takers and be willing to put up with me while I spiraled out of control from narcotics and wanting to shower. They were asked to sign a contract by the transplant center ensuring I stay in Salt Lake for six days post surgery (because I lived more than 3 hours away). They also had to drive me to appointments and take care of my post-surgery needs.
I am only 3 months out of surgery so I still have a few side effects. Ultimately I was out of work (at Ada County Paramedics) for 16 days, part time for 5 weeks and have been back full time since then. I have some femoral nerve issues in my right leg, which is from the positioning on the bean bag during surgery (yes, they performed the surgery on a bean bag chair—to ensure there was minimal pressure.) I suffer from some pretty impressive fatigue that I think I’ve imagined until I remember that my right kidney is still growing to compensate for being a lone soldier. I will know my normal blood levels on July 5, 2017 as it takes about one full year from donation to be at your new normal for everything. I will have follow up blood tests at 6 months, 1 year and 2 years. The hardest part has been learning to be my own advocate. The surgery is totally covered by the recipients insurance; this does not mean that all of the testing or billing will be correct on the first time around. There are days I come home scratching my 4″ incision, so tired I have tears in my eyes for no reason. On those days I look at a box of letters, I was given from various people in Cruz’s life who wanted to thank me or express their gratitude for my donation. I had asked that I remain somewhat anonymous as I didn’t and still don’t want personal attention or to be regarded as a hero. But, in all honesty, getting to read how my kidney donation has effected these other people’s lives made everything worthwhile. I will cherish that gift more than I can ever express. My incision is my reminder that while Cruz will have to take anti-rejection medication for the rest of his life, he can now be with his family for many more years to come. He can go on a vacation or camping without a single thought of having to be hooked up to a machine. He can enjoy his family with more energy and freedom than he had before. It makes my potentially-one-year of being tired and numb more than worth it.
It Doesn’t Grow on Trees
It’s important to know that while every test and anything involved in the surgery and after- care is financially covered, it still costs money. There are grants available to people who need help with housing, food and travel. Most recipients’ insurance will also pay a portion of the travel or lodging. It is vital to understand that while donating is a very nice thing to do, it is not free. This is a deterrent for many people. I could write, in length, thoughts on why I don’t think people should be paid for donation, but that is for another long-worded diatribe. It’s a choice that shouldn’t be made lightly, but has endless moments of wonder. No one should donate any organ unless they are sure it is a choice they can live with. It is also extremely important to have a support network that enables you to heal and be whoever you need to be during recovery.
My only wish would be that there were more people to talk to about the process before and after the procedure. There are questions no medical professional can answer as they only perform the surgeries. I had an amazing team, but they could not relate to what I was feeling or needing to know. When I was asked about writing this I was not sure if I wanted to or what I would say. But it is so important to have real information available about donation. To have something to relate it to, or to know someone who has been through it. I think knowing the process is comforting, and understanding that at some point it becomes just another event in life, which makes it not so weighty at the moment of surgery. I wish I could write about the process for Cruz as well. He had a much longer stay in Salt Lake, just as he had a much longer road to receiving my kidney. But that is his story to tell. I also would have liked to express more the real feel of the whole experience, but no one has the time to read my thoughts, nor is it a story necessarily for public consumption.
To wrap it all up I will answer the three questions I was most asked:
1) Do you know your recipient?
Yes, but even if I had had no connection to him, I still would have volunteered. We will now know each other in a very deeply personal way. He is a part of me forever and I am part of him.
2) Would you do it again?
Yes, I would do it a million times over if I could generate more kidneys to donate.
3) Why did you donate your kidney?
BECAUSE I COULD!
Interested in Donating?
If you or someone you know is interested in donating an organ, the process is long and complicated. But the following links can provide some direction and/or support.
1) The National Living Donor Assistance Center offers grants to help with travel, food and lodging.
2) The National Kidney Foundation helps find a hospital and people on the waiting list if someone wants to be an altruistic donor, also it’s a great starting point for research.
3) The University of Utah Kidney Donation is where my surgery was done.
I also found a closed group on Facebook called “Living Kidney Donors” that was very helpful. There is also a book called “Lost in Transplantation” by Eldonna Edwards that I found helpful. Ms. Edwards was my only resource for a human connection to the donation process.