Kidney Failure and the Value of Acceptance

This blog post was made by Tami Ramsey, RN on July 27th, 2017.
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.

Comments

  • Hemanth

    Aug 2, 4:21 AM

    Thank you very much for this article. Not all nephrologists share the complete know-how but there are genuine Kidney care centers where consultation is provided by explaining the symptoms and how to prevent them instead of allowing it build up in your body.

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  • Leong Seng Chen

    Jul 29, 3:21 AM

    I had been hemodialysis treatment for only 33 months. Our local standard is 4 hours session 3 times weekly. I live in Singapore of South East Asia but I was born in Malaysia. I have yet to learn to write my own story about how I had to face/accept/manage with my HD treatment journey since 2014 October. We in Asian culture & value are a little bit conservative by the way. That's all for today! Thank you!

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  • Frank Dykman

    Jul 28, 10:41 PM

    I had a transplant around 20 years ago from my brother, a living donor. Neither one of us knew he had Hepatitis C and results from a test done during work-up were never looked at. It took about 2 years and I was back in kidney failure and back on dialysis. I tried to take the Interfuron to rid myself of the Hepatitis but I couldn't endure the side effects of the drug. It's been a couple years since then and a new drug called Zepetier came out. I took it for 12 weeks and no longer have Hepatitis, so I went to do the work-up again so I could be listed. I just got a call the other day, I was rejected due to comorbidities. I scheduled an appointment with the head doctor and now I'm waiting for an explanation. I haven't gone to another hospital yet but I plan to do so.

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  • Sharon

    Jul 28, 5:08 PM

    Good read. I am slowly working home hemo into my daily life. It is a difficult struggle for me as well as my husband. After almost 3 1/2 years on the waiting list, I finally got the call. Got a kidney, just to have it clot. After the kidney failed, it was removed. I was not sufficiently prepared for the surgery or the recovery. I had 2 major surgeries all with in a week of each other. The recovery was one of the hardest things I've had to go through. Prior to the transplant, I was doing PD which had been working great. I was able to easily travel, do treatment at night, and it did not take much of my time. Unfortunately, I was not able to return to PD after the transplant surgeries. Now I'm on home hemo and it takes way more time then I could have imagined. I'm still trying to find ways to modify my schedule to accommodate treatments 5-days a week, to work 8 hours a day, 5-days a week and still have some sort of life outside of work and dialysis. It's a difficult road to travel but I'm not ready to give up yet. It has taken me several months to regain my strength but I'm getting there. I have fight left and I plan to fight for what I want.

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    • sharon

      Aug 5, 10:13 PM

      Thanks for sharing, stay strong, lol. You should get a wonder woman t shirt lol I have superman lol

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  • Erich Ditschman

    Jul 28, 4:26 PM

    Dialysis is my gift of life. I've been doing home hemo nocturnal since 2008. I've tried all types of dialysis for the six years prior. Acceptance is hard thing to come by, but after two failed transplants, I realized that my children and my wife needed me in a big way. Check out my Facebook page at PaddlingonDialysisforKidneyHealth. And, #DialyzeforthePrize, it sure the heck is better than the alternative.

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  • Tina

    Jul 28, 9:21 AM

    Davita has an excellent kidney education class. It talks about the stages of kidney disease and transplant and treatment options

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  • Pat Ligon

    Jul 27, 8:58 PM

    Thank you so much for this article. I am on PD dialysis, but I have also had Rheumatoid Arthritis for many years. My Rheumatologist told me one day that I really had to "accept" my disease. At the time, I became angry. How dare she say that to me. I would never "accept" the disease. I have mellowed with age. I finally realized that the doctor was right. By "acceptance" she meant to know the truth of the disease's existence in my body. Coexist with it rather than fighting to maintain my previously healthy life. That lesson was so helpful in accepting the kidney failure when it came. Of course I was depressed with the diagnosis but gradually I adapted. That old life is history. How can I make the most of this life with kidney disease? You are right about staying in the present. I find something to enjoy every single day. Living in the past causes depression. Living in the future causes anxiety. The present is where I have the most fun and where I can make a positive contribution by my words and my actions.

    Acceptance is good advice. I am a happy person, enjoying my life. R.A. and ESRD do not change that. I had a friend with terminal cancer. Along with other terminal patients, she attended an end of life seminar taught by a psychiatrist. 12 days later the psychiatrist was killed in an accident. Each of the patients was still alive.

    This is a topic we each have to wrestle with. That's why I am glad you wrote the article. <3

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  • Debra Null

    Jul 27, 5:37 PM

    Excellent read, Tami. I have PKD also. My parents both died when I was young and I was separated from my biological family, so I had no idea.

    What I really wanted to say, though, is that transplant education needs to begin when someone is diagnosed in the earlier stages of kidney failure - at least for those of us who know before we are Stage V. Through all the years and different nephrologists I saw, not one talked to me about transplant and what had to happen for me to qualify. I accept some responsibility also, for not researching, maybe asking more questions or something. But it's hard when you don't really know what questions to ask. And I'm a nurse also. I can't imagine how overwhelmed those not in the medical field feel.

    Maybe the numbers of people eligible for transplant would go up if only we knew more about what to expect when the time came. In some cases, it wouldn't make a difference, but at least we would be prepared and not have false hopes.

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