My friend Max joined the BigD club about five years ago. I went along with him to his first session. I had a working transplant at that stage, and I must admit I was unreasonably grateful it wasn’t me. Like for all of us, Max’s first day was an emotional one, not just because it all became real, but because it was the start of a new, restricted life, that stretched out long past the foreseeable future.
We all feel pretty sorry for ourselves on dialysis Day 1. But that changes after a few weeks, when the benefits begin to show: you start to feel better, then quite well, and then ready to go back to your life and your work before the kidney failed. You can too, just not full-time. As my first Nephrologist, Dr John Dawborn used to say: “Think of dialysis as a second job.” Coming to terms with our “second job” as the price we pay for our good health is a big mental hurdle that we end up jumping more than once.
So in the early years, we hang out for a transplant: “A new kidney will give me my life back.” Well, maybe. I know the anticipation of a transplant “next year” kept me going during the odd sorry stretch. But it also made it harder to accept dialysis as an integral part of my life.
Which is why I mentioned Max. Prior to his kidney failure, he also had a cancer scare, which responded to treatment, but meant that he couldn’t have a transplant for at least five years. Why? Because the anti rejection drugs used to keep his transplant healthy would also crush his immunity to the smallest bug. So any remnant of the cancer, currently held at bay by Max’s immune system would break through, with devastating results.
So from Day 1 Max was resigned to staying on the BigD for at least 5 years and maybe longer. He had no expectation of a transplant to soothe the way. And within a few months, he had developed an amazing attitude to the BigD, which he still has today. He enjoys coming: it’s a social occasion, a health boost and a guaranteed respite from the busyness of the rest of his life. The BigD has become an integral, positive part of his life.
I don’t know which came first, knowing that he couldn’t have a transplant helped him to accept the BigD lifestyle, or accepting the BigD lifestyle minimised the distress of not being eligible for a transplant. Either way he is happier and more settled than many people I know who are hanging out for transplants.
And of course transplants are not risk free. I have experienced firsthand the two most common transplant demons: rejection and infection. Both can take you out of circulation for weeks, months or if bad enough, for good. There are still unknowns: the kidney is coming from someone else who may have (or have had) their own health problems. While they are part of the learning process for nephrologists, infections passed from donors to you or me are often terminal. The latest was only last week: NY man’s kidney transplant gave him woman’s cancer.
In addition, anti-rejection drugs are pretty hard on your body. One specialist I spoke to recently said he thought their constant use takes about 10 years off your life.
So, while a healthy transplant is a wonderful treatment that can give us more time and more freedom, it may not be for everyone. Dialysis can be a pretty good alternative. Both treatments are life changing. It’s up to us how we live our new life.