Saying No to a Kidney Transplant

This blog post was made by Nieltje Gedney on December 3, 2020.
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.

Comments

  • Sofia

    Sep 10, 2021 12:11 AM

    Thank you for sharing your story. It has been 4 years now since I had my kidney transplant.

    But it is true that when I was told about transplantation, I was not given too much choice.

    It was either the transplant or I was continuing peritoneal dialysis treatment. But I was told that if I continued on dialysis my life expectancy would be lower.

    It really scared me and that's why I chose transplantation. So far everything is going well, I feel better and I was able to start new projects. I even opened a small online medical alert jewelry store called Sofiancy. Thank you again for sharing your story and I hope you are doing well.
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  • Rino

    Jan 15, 2021 4:50 PM

    I am on my 9th year on dialysis and the muscle loss have started. From 68kg I rapidly went down to 60kg in a few months. Any of you suffering from the same rapid weight loss? Is it normal for dialysis patient?
    I still not opting for transplant as what I have learned, the negative impact is far greater than the benefits.
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  • Yvonne Coleman

    Jan 10, 2021 2:33 AM

    Thanks for sharing your courageous journey.
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  • Jeff Stumpe

    Dec 12, 2020 7:46 PM

    Thank you Nieltje for your courage and resolve to share a perspective that can hardly be considered popular in the world of kidney transplantation.
    I have shared your perspective on kidney transplantation for the latter part of the past 8 years that I have been an HHD patient.
    I was diagnosed with PKD in July 2002 as part of an annual physical with renal panel results showing a 1.7 elevated creatinine level. A cat scan confirmed cysts on both kidneys and my liver. I had no family history of PKD and was thus in the 10% of PKD sufferers that developed the disease through spontaneous genetic mutation. I was referred to a nephrologist who has followed my disease progression to the present.
    During the ten years between diagnosis and the start of HHD, my PKD was managed only through blood pressure management. Oddly, the high blood pressure diagnosed in 1993 at 39 years of age also had no family history and no explanation at the time as I was well within a 25 BMI and fit. The very low dose blood pressure medication started in 1993 was preventative in slowing the progression of what was not diagnosed until 2002 as PKD - the cause of the high blood pressure. By the time I stared HHD in 2012 I was on 3 BP meds and my BP was still not in control. After 1 to 2 months on HHD I was able to stop two of the BP meds and dropped the final med in mid-2015 after having normal or low BP's since mid-2014.
    I was listed for transplant in January 2011 and had an AVF constructed in my right forearm (left handed) in October 2011. I was listed with a second transplant program in November 2012. Transplant wait times when I first listed were respectively 3 to 5 years and 3 years respectively for the two programs. I did not consider disability and continued to work full time through HHD training and home treatments through October 2017 when I left work on STD and then LTD at 63-1/2 years of age. The demands of 4 and 5 times HHD using both nocturnal and short daily treatments, PKD disease progression, age and the demands of full time work for 5-1/2 years finally caught up with me through sleep deprivation and chronic fatigue and I had to join the ranks of the disabled where I reside today and until such time that I am successfully transplanted before February 2022.
    I did not "crash" into dialysis in 2012 at 58 years of age, I had 10 years to think and plan for eventualities of ESRD. My nephrologist at that time of 10 years helped guide my decision to begin HHD training (with spouse as care partner) about 3 months prior to actually requiring dialysis when I had a GFR around 9 and creatinine in 7's but no physical or mental symptoms of Stage V (ESRD) Kidney Disease. Upon the start of HHD training and hemodialysis in July 2012 I felt no different and continue not to feel any different than I did pre-dialysis. This was and is owed to initial residual kidney function and subsequently increased hemodialysis and increased fluid removal as my residual function diminished with disease progression and age over the past 8 years.
    Had I been offered a kidney (cadaver only) during my 5-1/2 years of full time employment while on HHD, I would likely have accepted. All of that changed when I left the work force at the end of 2017. My perspective on transplantation changed radically in response to feeling so much better after stopping work, e.g. no more chronic fatigue or sleep deprivation.
    I received and rejected a total of two offers of kidneys one in late May 2018 and the other early June 2018 after 5-1/2 years with one transplant program. In August 2018 I was convinced to change my listing status to "inactive" with the program that I had listed with in November 2012 and had received the two offers of kidneys. In July 2019 I was convinced to change my listing status to "inactive" with the program that I had listed with in January 2011, for which I had not received an offer of a kidney over the prior 8-1/2 years.
    I felt that I owed my health care providers an explanation that supported my decision to change my transplant status to "inactive". I crafted a 3 page, 1713 word "White Paper" that I entitled, "Circumstances Supporting Decision to Reject Transplantation of Cadaver Kidney". In that paper, I comprehensively provided pertinent background information, much of which I've shared in this Comment along with 6 highly detailed points/paragraphs addressing Reasons for Rejection of Offers of Cadaver Kidneys including the 6th point supported by 7 sub points.
    Without sharing the entire contents I can summarize the 6 points as: 1. Vastly improved HHD Quality of Life since stopping full time work, 2. Managing very successfully on HHD, 3. Recognition that I will have a single opportunity for transplant between ages 66 & 68 given potential age related comorbidities and the need for the kidney life span to match my own, 4. Recognizing that another ESRD transplant's quality of life would likely be improved far more significantly than mine with transplant, 5. Unknown risks of transplantation surgery, and the potential injurious effects of a transplanted kidney's lifetime of immunosuppressants compared to the known risks of HHD, and 6. Economic impact of transplantation and the loss of significant disability benefits during an age range (64-68) where re-employment would be highly unlikely owed to escalating age discrimination in USA businesses.
    Not one of my health care providers has since questioned a single point or sub point in my carefully thought out "White Paper" the least of which being the kidney transplant program coordinators, social workers, dieticians and surgeons.
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    • Nieltje Gedney

      Jan 07, 2021 7:54 PM

      Thank you Jeff for your well thought out views on transplant. You even added some I had not considered. Perhaps you could expand your white paper into a blog for Kidney Views? This is a very hot topic!
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  • Richard Thompson

    Dec 11, 2020 12:28 AM

    Thank you for your story, I love to hear of people who are successfully fighting back against ESRD. I have been on PD Home Dialysis for nearly two years. I use the Fresenius cycler and do treatments 7 days a week. I have adjusted to everything dealing with dialysis and have just incorporate it into my daily chores. I still run my businesses. Even after undergoing (this year pericardial effusion/tamponade and a lobectomy (lung cancer), I feel good. I had the same questions on transplant. Turned down my daughter's kind offer of her kidney but couldn't do that. Went through the transplant process then was booted from the program due to the cancer. Now at 68 I think I will stay with home dialysis. Good luck to all and I hope will all have a Happy and Healthy 2021
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  • Nancy Turley

    Dec 05, 2020 6:50 PM

    Nieltje....I completely agree with your feelings about transplant... I qualified for one and turned it down, as I, too, was petrified about the anti-rejection drugs...
    Because of doctors ignorance, my kidneys slowly when down and I am now at a 4.2 creatine level, but still maintaining my blood levels due to micromanaging my diet.
    I will choose PD home manual dialysis....no machine for me....and hope for the the best.

    Hugs and Love to all those with the same decision....Happy Holidays
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  • Rosemary Bourne-Webb

    Dec 05, 2020 2:50 AM

    Thank you for this article, it’s a decision I’m trying to make at the moment, after watching my brother struggle with his health for many years after transplant it’s a difficult decision
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  • James Lerberg

    Dec 05, 2020 2:47 AM

    I was transplanted April 27 2020 at Mayo in Rochester MN
    I was on the approved list for 18 months or so. My name came to the top of the list because several folks declined the kidney due to Covid concerns of the folks in front of me on the list.
    It was not a smooth process for the first 5 months several infections and 2 extra surgeries. Our thoughts at the time were is this worth the trouble. We stayed in Rochester about 3 1/2 months and were able to stay at the Gift of Life Transplant House near Mayo clinic. Low daily rates with full common kitchen, laundry, and dining room. We prepared our food or used take out. It was a long haul staying there for as long as we did but the room was satisfactory and the place was quiet and clean. We met several people who had been there a lot longer than we had, so feeling sorry for yourself was not a good option.
    My drug regime is fairly significant. I take about 12 medications per day with some for anti rejection and some for my other health issues. I take them twice a day at special times that keep the drug levels in my system constant. I use an alarm on my i-phone to remind me when to take them. I follow up with weekly blood tests taken near my home with results sent to Mayo. I will have a one year follow-up with Mayo in person and regular check in after that.
    Yes the blood work and follow-ups are a pain but going to clinic for dialysis 3 times a week was a pain also. I am grateful for great insurance coverage. My gross billings from Mayo totaled around $1,000,000. That is list price but not the amount the insurance or medicare pays.
    Yes some days early in the process made going to dialysis seem to be a preferable option, but so far the transplant has performed well with no indications of problems yet.
    I give lots of credit to the doctors and nurses and attendants at Mayo. They are world class.
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  • Anne Swann

    Dec 05, 2020 12:09 AM

    Thank you so much for this perspective! My husband is not a candidate for transplant, but has always maintained he wouldn’t choose it if he could. We seldom see this point of view and can sometimes feel reluctant to express it. Everyone is different, not only physically, but mentally and emotionally - and sometimes spiritually. Any modality choosen should be respected, not dismissed because it is not what we would have chosen. Thanks for the blog!
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  • Mike Snyder

    Dec 04, 2020 11:34 PM

    Yes, I'm doing well on PD. Time consuming and a pain, but manageable. But after 20 yrs on a whole food, plant based diet, to keep up my immune system, hard to see killing my immune system with anti rejection meds. That's what kills cancer cells.
    What we need is much more research, into using our own stem cells to grow kidneys, which we need no immunosuppressant meds, and no shortages. We've seen what huge efforts and funding can do with vaccines.
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  • Carol

    Dec 04, 2020 11:27 PM

    I enjoyed reading this article. I also agree.
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  • Eric Weinhandl

    Dec 04, 2020 3:22 PM

    What an interesting perspective. We researchers spend a lot of time comparing outcomes with kidney replacement therapy X with kidney replacement therapy Y—whether comparing transplant and dialysis, or hemodialysis and peritoneal dialysis. The comparison is potentially useful, but lost in it is that life is much more complicated for an individual.

    What which a comparison leans reflects person, place, and time! The preferred modality for you is not the same as for me, and my preferred modality might not be my preferred modality in 5 years! (In fact, I know that it would not be.)

    Individuals are not the same as populations!
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  • Lisa M Hall

    Dec 03, 2020 8:45 PM

    Thank you for this article Nieltje!
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