I have been inspired to write about this difficult topic by Big D and Me’s blog post Dialysis or Transplant: The Big Decision. He shared his experience and really voiced our experience also.
In our early years of dialysis the nephrologist said that not everyone chooses a transplant. They had someone on dialysis for 20-years. We laughed. Who in their right mind would choose to be hooked up to a machine if they had a chance at their ‘real’ life that’s free of dialysis, restricted diet, routine hospital appointments, liquid restrictions (no more than 2L a day!), pills with their side effects, vacation restrictions and costs, etc. After a few more years we still remembered this conversation and turned bitter/conspiracy theorists. The doctor probably wanted the funding for his dialysis career and wanted to keep people dialysis. We were young….in our twenties, naive, ignorant, and bitter.
When Franklin got a kidney transplant from his wonderful brother Christian it was life as we remembered. Vacations. Spontaneous trips to the casino at midnight. Dinners. Having a social life again without worrying about what time we had to be home so he could do his 8-hrs of dialysis before going to work the next day. One thing I remember about the transplant was that during the video we had to watch about life post-transplant and talking to the nurse about all the anti-rejection medication, was I snapped at the nurse for saying the side effects of cancer, etc. was if you took the drugs for a long time. “He’s in his TWENTIES, he will be taking it for a long time!!” Perhaps that was foreshadowing of my apprehension to transplant as a solution to this nightmare of End Stage Renal Disease/Failure (ESRD)? There were 20+ pills A DAY! Many of them very expensive. Many of them with many side effects.
We had a respite of dialysis for less than 4-years. Hind sight is 20-20 as they say. I would have had the dream wedding. I would have traveled more. I would have taken more pictures and movies to capture the moment. When Franklin’s kidney transplant failed, it was like a death. A death to our freedom. A death to our care free life. A death to our happy-go-lucky vacations. It was a harsh failure physically too. He had to do emergency hemodialysis. There was blood transfusions due to low hemoglobin counts. I remember one day he’d been sleeping all weekend and when he went for dialysis his blood work showed that his hemoglobin was low but not too low. I was shocked! How freaking low does it have to be before he gets a transfusion. He’s been exhausted and feeling lousy all weekend. That doesn’t sound horrible to the average person, but when your loved one hasn’t been out of bed or talked in 60 hours, I was concerned. It’s not like the transfusion is some miracle either, because you have to sign a waiver that you could have other complications from the transfusion. It was the lessor evil at the time trying to manage saving his life. This was our first exposure to hemodialysis and the needles, blood, and crashing were hard. Please donate blood. It costs you nothing and more importantly it saves lives!
The massive headaches from trying to take off enough liquid/weight during dialysis over 4-hrs 3 X week were too much. He went back onto Peritoneal Dialysis. When that stopped working (so many stories here, but I’ll leave that for another blog post) we went back to HemoDialysis. Not our first choice, but thank God it was a choice. If it weren’t for HemoDialysis, there would be no choices…
Franklin has 99% anti-bodies as a result from the failed transplant. Without a live donor so we can try to do de-sensitization procedure to bring his anti-bodies down, he’ll be on dialysis for the rest of his life. De-sensitization is a process where they lower your anti-bodies, so they can transplant a kidney, then they pump you with meds to keep the anti-bodies down so hopefully your body won’t attack the new kidney. Without a live donor they will not do the procedure because your anti-bodies would go back up over time and the wait time for a cadaver kidney is YEARS. Still confused to what de-sensitization purpose is? I’d compare it to when you get the chicken pox. After, your body has the anti-bodies to attack any chicken pox virus that even thinks of trying to host in your body. Therefore you will never have chicken pox again.
The last 7-years on dialysis is starting to take it’s toll on my husband. There are days where he confesses he just doesn’t want to do it anymore. A live donor would give another choice. But, is the risk to his life worth it? With his Encapsulating Peritoneal Scoliosis (EPS), due to the multiple abdominal surgeries and years of peritoneal dialysis, be another factor of why transplant maybe more of a risk? The years of anti-rejections pills if we were successful in finding a live donor is something I am also afraid of.
As selfish as this is, I prefer him on dialysis. I don’t have to worry about another abdominal surgery. I don’t have to worry about possible rejection after surgery. I don’t have to worry about the side effects from all the anti-rejection pills. I don’t have to worry about losing him because of a procedure we chose. But, I am not the one who has to do dialysis 40-hrs a week. I am not the one who has to cannulate (needle your self with two big needles) 5-nights a week. I am not the one who sleeps all day until 8pm when he is exhausted after the dialysis takes its toll on his heart, body, and mind. I am afraid. And fear drives many skeptical opinions.
If someone is gracious enough to give the gift of life and my husband wants it. I will stand by his side as I have the last 20-years. 10-years of it dealing with Kidney Failure. A lifetime of having my best friend.