Saying No to a Kidney Transplant
Let’s talk about transplant. At my first appointment the nephrologist told me that a transplant was the gold standard of treatment for CKD, so I immediately made an appointment at the nearest transplant center.
I showed up on the appointed day in 2007, on time, and sat in the waiting room for hours. First there was a group meeting where someone talked about what you needed to do. They told me I had to have proof of $10,000 in cash to pay for the anti-rejection meds before listing. Back to the waiting room for several more hours. Finally, I went to an exam room. A series of medical professionals passed through, asking questions, and answering very few. After over 8 hours of waiting, exams, and meetings, I went to the lab. They drew about a gallon of blood. Having driven 3 hours to get there, eaten nothing all day, and now this, I passed out! Not one of my better memories.
In 2007, I was 55, still early in my CKD journey, and years away from dialysis. This started me thinking. I had already decided dialysis was not for me, and now it seemed that transplant was not an option either. Time for some soul searching. Life had been good. I decided to work on my bucket list for as long as I was able. I was reeling from the shock of learning I would need dialysis or a transplant, or I would die. Yet I was still feeling pretty healthy, all things considered.
So, I got to work planning for my future. I would not waste one day. I started with an extended trip to Ecuador. After a year there, I came home feeling even better. I made a point to live life to the fullest, and took more trips, especially ones with the grandkids.
I talked with my daughter about my options. We agreed that I would not do well hooked up to a machine to keep me alive. Transplant was even harder for me. Organs were scarce. The wait list was long. I felt guilty taking a place from someone younger, who had their entire life ahead of them.
My best friend offered me a kidney. That offer touched me. She had five children and was on her way to a full house of grandchildren. What If any of them ever needed a kidney in their future? Worse yet, what if I accepted a donor kidney and it failed? I knew I could not live with the guilt of taking a kidney from someone who may need it later. Worse, what if I rejected such an amazing gift?
Fast forward to 2014 when I crashed into dialysis at 62. I never planned to start dialysis; the plan was to call hospice, but life has a funny way of changing your plans. I had been taking care of my 95-year old mother with dementia, so I no longer had the luxury of dying. I opted for dialysis in the short term to buy time to arrange for her care. Then, I could call hospice. Only I did not, because I felt so much better! And the rest is history, and another blog post.
Now that I was on dialysis, at least once a year, if not more, the clinicians would ask me to consider a transplant. I always said no, not interested. They noted it in my chart like a big black mark. I was doing well on dialysis, on a minimal schedule of 3x a week at home. I had kept my residual function, so treatments were easy, which contributed to my well-being.
I met many other advocates who had transplants, and heard their stories. I learned that transplant is not a cure. It is another option for treatment, like dialysis. It comes with its own set of rules, limitations, and complications. Many people I met had spent months in and out of the hospital post-transplant. Adjusting the anti-rejection medications was brutal. The side effects from these drugs alone was enough to scare me. On dialysis, I take few if any medications, except for anemia management.
Some of the transplant medications even cause cancer. I lost a dear friend less than 2 years after a perfect transplant due to a virulent cancer. She had been the picture of health; her transplant a 100% match. She left the hospital in 4 days and was back to her swimming routine within months, and 2 years later she was gone. It was like Russian roulette. Take the anti-rejection drugs. Get cancer. Treat the cancer. Lose the kidney—or worse.
Another problem I had was thinking about rejection. During my 20 years with CKD, I wondered each day if that was the day I would lose my kidneys, and then I finally did and started dialysis (my nemesis). Imagine my surprise when I actually felt better than ever. Did I want to start all over with a transplant? Would I spend every day wondering if I was going to reject it? I know people who have had 2, 3, even 4 transplants during a lifetime, lasting from mere days to 20 years or more. Some were uneventful, others almost killed them. There is no crystal ball to tell you how your transplant will do. Even a 100% match can cause problems.
You also have no immune system because of the medications you take. This makes one vulnerable to viruses and infections. While the common cold is something I sneeze at, if I had a transplant, it could do me in. For the 7 years I have been on dialysis, I have only had one bout of the flu, few colds, no infections, no side effects.
For me, a transplant can take as much work as doing home dialysis. The medication schedule alone would do me in. I can hardly remember to take a vitamin. You still have labs and clinic visits. I have decided to stick with what I know is working, and after 7 years, I still feel the same. I decided to stick with what I know is working for me—home dialysis.
Do not misunderstand. I am ecstatic when someone I know who has a working transplant is doing well. That was the right choice for them. I support them 100% and anyone else who wants one. But there is an old saying, “Be careful what you wish for!” It would be a mistake to think that a transplant will make your life better. A kidney will not fix everything that is wrong in your life, and you may or may not return to good health. It is a gamble. A transplant is about the unknown. Be sure that you understand what the tradeoffs are, and prepare for the bad, as well as the good.
The sad fact is that there are more than 650,000 people on dialysis. Only 100,000+ make it to the transplant list. Fewer than 25,000 of those will actually get a transplant in any given year. I applaud the AAKH Executive Order of 2019, which promotes more transplants and home dialysis for up to 85% of all dialysis patients by 2025. But, even with new policies, there will always be a finite number of organs for transplant.
After 60 years of the status quo in renal replacement therapy, I want to see innovation. Kidney patients deserve more. We should not have to choose between the least destructive option to prolonging life. Educate yourself about your options. Choose wisely. Choose what works best for you at that moment in time. Know also that you can change your choice whenever you need or want to. Meanwhile, make each day your best day.