Kidney Failure and the Value of Acceptance
Looking back, there are no words to describe my complete ignorance of how much kidney failure would affect my life. I was a Pollyanna. A true believer that somehow, I’d dodge the bullet…even though my family history would say otherwise. And even if I didn’t dodge the bullet, I’d just get a transplant and everything would be fine. I could not have been more wrong.
In the fall of 2010, my mother passed away from complications of dialysis, and 2 months later I had my fistula created. It was a difficult time for me. Not only was I grieving the loss of my mother, but also facing the inevitability of my own kidney failure. I remember thinking at the time, the fistula was just a “backup” in case I didn’t get the transplant I “knew” I would get. Again, I couldn’t have been more wrong.
The scope of what we need to know about End Stage Renal Disease is so broad and so deep even nephrologists don’t know it all. Of those things they don’t know, why some of us have very high PRA’s (antibodies) is one of them. Imagine my shock, dismay and fear when I learned I would probably never find a donor kidney that would match! I told myself this isn’t possible. This isn’t the plan. This isn’t the way it’s supposed to be. In all the years since my diagnosis with Polycystic Kidney Disease, it never crossed my mind that I wouldn’t be able to get a transplant. No one had ever spoken to me about the process, the labs which needed to be done, the issues a person wanting a transplant could face let alone how antibodies played such an important role.
I remember telling my husband I wanted to join a site which could help me find a donor. He was outraged that I should even THINK for one minute I would need to do that….as far as he was concerned, someone in my family or one of my friends would match and that’s all there would be to it. Dealing with the reality of it was a long and painful process. Needless to say, I joined the site and had 10 or so people, perfect strangers, test for me. My blood attacked every one of them. The rejection became so taxing I eventually quit checking the site. Quit reaching out to people. Quit expecting anything to change
As the years marched on, I continued with dialysis, always working with my nephrologist to tailor my prescription so I could stay as healthy as possible…. every day waiting for “the” call. Eventually I transitioned to extended dialysis, spending 6 hours, 5 days a week, on my machine. And in March of 2015 IT happened! Mayo called me with a match! I couldn’t believe it! The ensuing hours were a whirlwind. My family and I flew to Rochester, MN from Atlanta with all these ideas of how life was going to change for all of us. We were making plans for a family trip abroad. I was thinking about how I’d get to go back to work and what life would be without dialysis. No more needles, no more restrictions, no more time sucking dialysis.
As I sat comfortably in the hospital bed on the transplant floor, I daydreamed of a better life. And then, the unthinkable happened. The doctors came in and said the kidneys were bad. I couldn’t have one. No one could. Crushing would be an extreme understatement. I didn’t cry. They left, I got dressed and we left. I came home, set up my machine and dialyzed. End of story.
Two years later, I haven’t received another call. I’ve also transitioned to nocturnal and spend 9 hours every other night on dialysis. I am working on embracing the reality of my life and trying to make the best of it. Some days I fail. Other days I feel almost normal. August 25th will be 6 years of dialysis. I never imagined this milestone would be a part of my life.
I haven’t given up hope, but I live my life with acceptance of my reality. It’s hard. It’s lonely. It also has taught me how strong I am. If I could offer one piece of advice to anyone facing my reality, it’s that acceptance with hope allows you to be free. Free of the waiting. Free of the excuses. Free of the “if only’s” and “what if’s”. It allows you to live each day for what it is and to appreciate each day. All we have is today, nothing else is guaranteed. Live it.