I will attain 76 years in August, 2024. I have been on hemodialysis since early May 2024. At one point I was eligible for only a living kidney. Now it looks like the transplant center will approve my placement on an urgent protocol so I can wait 3 years for a deceased kidney. I could live 10years on dialysis while living perhaps 20 years with a deceased kidney. However, I would have to have immunosuppressant medication all my life. In the first few months, I would be limited in my activities and would have to find a system of others to help me with activities and duties. I would not be able to drive during that period and need to find someone to drive my car 2 or so times a week. I have work out food delivery beyond what my continuing care senior community provides, such as grocery shopping. I would have to avoid the various entertainment and lecture events here at least live. How do I work out seeing certain medical professionals, such as dentists and audiologist, that I need to see every 3 months?
Would I live until my 90s if I did not have my kidney disease? I already have outlived everyone in my immediate family. I would like to have a response from older people who considered these issues. Has anyone in their 70s had a transplant and what was their experience like?
Thank you. I feel alone in struggling with this decision.
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Lee75glom
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Average length of time for a deceased donor kidney to function is 10 years. Living donation is 15 to 20. You can read all about this, but I have done many many many hours of research on this topic, I have never read any different. I know someone on his 11th year of dialysis right now.
You will need someone to drive you to appointments typically three times a week the first month, twice a week the second month. Blood draws are always early in the morning. That’s because you have to take meds 12 hours apart and they need labs drawn right before your next dose.
A transplant center will not put you on the list unless you can prove you have someone or a team of people to care for you. They will have to get you to your appointments, help take your vital signs twice a day, track weight, urine output, and help you manage the 10 drugs you will likely be on. You won’t be able to go by the label on the pill bottle because every time you see the doctor, they may adjust your dose. They don’t even recommend using pill boxes at first, the doses change so often.
You cannot drive for six weeks. You cannot lift anything over 10 pounds either.
Yes you are at permanent higher risk for lymphoma and melanoma. Infections that might be not a big deal for other people, are a big deal for you. No cleaning cat litter. You cannot have birds or reptiles as pets. Just having a pet raises your risk of infection, some centers may even urge you to give them up.
On average, people live longer, healthier lives with a transplant. Transplant is not easy, but it’s worth it not to be tied to a machine, have fluid restrictions, and unable to eat a lot of foods, getting sicker and sicker. It’s not all sunshine and roses. It may be a full year until all the kinks have been worked out with your transplant medications.
20% of all transplant patients end up with diabetes.
It is common for people who have transplants to be re-hospitalized for a complication the first few months.
In other words - transplant is hard. It’s a lot of work. But the reward is a better life.
You will not wake up transformed and full of energy like you read about. It takes time.
I’m not as old as you are but I am 68 I am on two list cause one take you off the list the day after you turn 71. I know transplant isn’t an easy thing but to me it worth it if I can get 10 year . I don’t drive now but I had to change to hemodialysis from old dialysis I was doing at home now I go to center I had to find transportation I was blessed my sister step up for every Tuesday my friend on third and my son on Saturday but when they can’t do it my church family a lot of them said they will do it when other can’t .plus I ask my social worker to put a list together of transportation option .when you go on the list you will get a social worker she can help you with all the things you are talking about . Good luck to you hope you get on the list soon
Well, Lee, no one can tell you what to do. Dialysis and transplants are treatments, not cures. But a transplant offers much more freedom after you get through the first year. I am 70. I know what I want and it is a transplant. I do home hemo and it takes up a lot of my time. It can be terrifying when the machine goes off. Although I am getting better with it, I swear my machine is possessed. We can have perfect treatments, and then a series of major catastrophes. And then I lose my confidence.
There are people on this site who will tell you about what happened to them. Read through some of them. One member ended up with a long process of issues only to end up with leukemia. Cancer is a big risk with transplant. Then there are others who have had their new kidney for 30 years or more.
Your life after transplant can include groups. You just have to be careful. To me, dialysis is not the way to live. You will never get better. Just the opposite. And there are a lot of complications with dialysis.
I am a 74 year old that had a kidney transplant from a deceased donor 25 years ago this October, 2024. I have never regretted my transplant. Yes, I have been on immunosuppressants for all of these 25 years. I was able to see my daughters marry and the birth of my 2 grandsons. I travel with my husband. This December we are going on a Rhine River cruise Amsterdam to Basil, Switzerland. Without a transplant I wouldn't be doing this. There have been some "bumps in the road", but would gladly take every one of those bumps for Life! I have been able to give back by being an active volunteer with my local Donor Alliance and telling my story, and encouraging others to become an Organ Donor.
I think everyone has to make their decision whether a transplant is for them. I hated dialysis and my AV Graft was giving me and my nephrologist problems. Best of luck to you whatever your decision! For me - I LOVE MY LIFE!!
My hubby, a diabetic, received a deceased donor kidney transplant at age 71. I asked my hubby what he would do if he were you. His exact words are "If the doctors agrees with it, go for it. It's fine." He believes it's best to trust the professionals and the process. My hubby was on dialysis for exactly one year when he received his gift. His kidney came from an older man with some issues, including a fungal matter, but my hubby was put on meds for it to clear it up. He knew that a kidney from a living dnor would be best; he also realized that seniors are often given "cleaned up" kidneys that were previously discarded. But he also knew that he had already lived many decades - my husband was simply interested in a better quality of life for the years ahead, no matter how many he would be given, without having to rely on dialysis. My husband's recovery from the transplant was difficult - a ureter leak, a-fib, and a foot drop. His diabetes returned following the transplant, which is common for anyone with a proclivity to that disease. Also, the foot drop eventually made him trip so he had brain surgery to correct that which, amazingly, also fixed the foot drop. There were many times when we rued our decision. But, here he is - three years post and his situation is very stable and life is exceptionally good. He is back under the care of our original nephrologist who steered him to a transplant. I just asked him if he regrets going for the transplant, and he, amused, said, "No, of course not. Why would I regret it? Look at us."
Before the transplant center released him, my husband asked a nephrologist for her prediction of the future, keeping in mind that the kidney wasn't in great shape at the outset, it also was an average, not perfect, match, etc. She was very positive and said signs pointed to the kidney functioning for a very long time. She added that my husband was tightly monitoring his sugars, managing his weight nicely, caring for himself very well. His local neph simply smiled and said he should pay attention strokes and and heart attacks, not simply kidney rejection - his situation was stable there. We all know life is finite. And many things can usher us into the next world. So, in summary, trust the process. The professionals may give you the green light, they may give you the red light. If you proceed to a kidney, realize your recovery may be a bit longer than for the younger folks - but you'll come out well on the other end. The centers are tightly monitored, they don't want to see deaths on their record. And then, above all, lead an exemplary life afterwards - treat your body well. (A good number let themselves go post-transplant, essentially returning to harmful habits.) In a nutshell, go with the process, follow medical advice closely, continue to take care of your precious body, things will fall into place...and you'll find yourself on the path you need to be on.
Thanks for this important, valuable information. I still have to confirm setting up a team to do all this work. Again, I will be 76 in August. How long will I live in any case?
I also had my transplant at age 76, following a period of time on dialysis. Transplant turned out great. We don't ever know how long we will live, but the qualitiy of life post-transplant has been far better than being on dialysis. Keep in mind that dialysis only takes care of one kidney function - waste removal. All of the other things that the kidney does - mostly in terms of regulating body functions are unaffected by dialysis. Those systems are basically off-line if your kidneys are not working. Now - all systems are GO. Good fortune to you whatever path you take.
I'm very proud of all of you. I'm 66 with 2nd transplant in 2007. More fatigue this past year so I've asked my docs what's due to aging vs meds (38 yrs). So when I read about the issue you're facing at 76 was amazed in a very good way. Truly wish you the best.
Like all that responded it is your decision. I had my transplant at 70 after 5 years of dialysis. At times pd and Hemo because my catheter doctor was inexperienced. Like all diseases or surgeries doctors make the difference. Going towards my 5 year mark after transplant. And yes as others have shared there are side effects of the medication particularly noticeable in older patients. I have had skin cancer removed and hip replacement due to steroids. But these are surgeries I may have had anyway. One never knows. However my life style is far better. Taking pills instead of hooking yourself to a machine is by far less restrictive. Trying to compare living timelines is to me a waste of time and only makes you anxious and enjoy life less. From the story you have shared and the research you have done, I think you had a good idea what you wanted to do but was just looking for confirmation. We have all been there. We know we want a transplant but compared to dialysis it seems a transplant seems more complicated and unknown. Transplant patients may complain about the medication and after care but most are happy they were granted the option. As time progresses, medical advancements will make that choice seem evident.
First of all, I’m 72 years old. I am 15 months post kidney transplant from a living donor (a close friend of mine). I am very grateful for her selfless act of kindness.
Now if I were you, I would go ahead and have the transplant. Yes there are some struggles but now I have no regrets. I did not want to be tied to a machine 3 times a week (and fortunately got my new kidney before dialysis). I am back to doing about anything I want. However I am very cautious. I attend events but always have a mask with me where ever I go. I also have hand sanitizer close by too. If I go out to eat, I got at 4pm or 4:30pm where restaurants are not crowded or I try to find places to eat outside. If I go into a restaurant and it is too crowded, I go elsewhere or get take out.
I would hope that there are services that can help you with transportation and food. I would also check in to some local churches for help. If there is a nursing school close by, see if a student nurse could come and help you. It gives that person some experience and you a lot of assistance.
I believe through some Medicare policies you can get rides to medical appointments. Check that out with you Medicare provider. Also here’s another case where someone from a church might help you.
As far as medications…..yes there’s a lot. I don’t mind taking mine because it’s keeping me going forward. It saves my life and I can enjoy life. My wife and I travel, I sing in 2 choruses, play golf, swim (in chlorinated pools), walk and go out on our boat. If I was tied to a dialysis machine then I most likely would not be able to do any of that.
So I would say “go for it.” It was worth it for me to try and live life to the fullest. I am ever so grateful.
Thanks for your thoughtful reply. I wish I could get a live kidney and have been engaging in many ways to promote that cause. I do not belong to a religious organization however. Fortunately, I can arrange for assistance with various needs after surgery via my senior community. I likely would not eat in our dining room, although it may be less crowded earlier. I may have to arrange for food delivery through our cafeteria. If I travel, it will have to be alone or with a group. If I visit my only relatives, I might have to request they do not take me to a restaurant as they have in the past.
thanks, my wife is a retired nurse practitioner so I am in good hands. We just have to make sure, when we go out, that we are observant especially for people, coughing or that may be ill. As I said, I always carry a mask with me no matter where I go. If something gets crowded, the mask goes on. You just have to be more careful than before. I wouldn’t deny myself the opportunity to go out with family, but have them cooperate with you to go at appropriate times where restaurants are not crowded and no one is ill.
Lee75glom. I have not read all the responses above and I’m a bit younger. I would say get on the list…2-3 years from now you can make that decision. You can turn a kidney down if you decide dialysis is best for you.
I’m the one who was diagnosed with leukemia post transplant. It’s T-LGL leukemia. Fortunately this form of leukemia progresses very slowly. My hematology oncologist has said that this isn’t a form of leukemia that kills people. Rather it places them at high risk of developing pnemonia which is difficult to treat due to their dangerously low white blood cell count.
However, it’s important to note that T-LGL is extremely rare and virtually never occurs in solid organ transplant recipients. My T-LGL is not related to my kidney transplant or the anti-rejection meds. It has just caused havoc with transplant recovery for me and when it flares up causes quite a lot of bone and joint pain. It also typically co-occurs with various autoimmune diseases like rheumatoid arthritis. RA runs on my mom’s side of the family. It turns out that I have both RA and Sjogren’s Syndrome, another autoimmune disease. The RA in particular has further complicated my post-transplant recovery.
I share all this to highlight two things:
1. As a 69-year-old transplant recipient, I had not yet been diagnosed with either RA or Sjogren’s. Plus my hematology oncologist has said that T-LGL leukemia does not typically surface until mid to late 60s. Neither I nor the transplant center had any idea I had these autoimmune diseases nor that I would develop T-LGL leukemia. In spite of all of this, my deceased donor kidney is doing extremely well. My creatinine typically comes in between .96-1.01. This gives me an eGGR ranging from 60-65. Pre transplant my eGFR was 10-12.
2. It’s critical to have a team of specialists! Post transplant they will need to monitor 5 general areas of function for you: renal, cardiac, intestinal, cancer (lymphomas and skin cancers), and diabetes. So you’ll need a team of specislists AND they will need to work closely together to monitor your overall health. However, with a good team and compliance on your part, older transplant recipients often have good outcomes. Yes, I say that in spite of what I’ve experienced.
Logistically I wasn’t driving before my transplant so that was no change and in many ways the easiest thing to address post transplant. I’m also the last person living in my family so had to create a recovery team to help me. People do step up to help; frankly, they are glad to do so.
I have no idea what lies ahead for me. However, if I’ve learned anything about myself through all of this, I’ve learned that I’m a fighter and I’m resilient. Who knew??? I’ve also finally learned to stop worrying! (My parents would have been glad to see this!)
I agree that you should get tested and listed if you qualify. They’ll monitor your health regularly to assure that you remain healthy enough for a transplant. Assuming you do, you can, as others have said, turn the kidney down when it comes if you have changed your mind.
Lee—I think you can tell from the variety of responses that people can have different experiences after a transplant, you should not decide from any of them what is best for you. From this board and other sources, I know that people can have difficulties after a transplant, but for me—it was a miracle. I had my transplant at age 72, nearly 4 years ago. Before that, I was on peritoneal dialysis for about 18 months. Dialysis kept me alive and I was grateful for it, but it required strict food monitoring, a lot of different meds, and constant tracking. I traveled with it but that required sending boxes of fluids ahead and shipping your machine and equipment. My transplanted kidney is from a diseased donor and it was a near-perfect match, in itself a miracle. Yes, the surgery, weeks of monitoring and clinic visits, etc., were a pain but I knew they were temporary. Now, my kidney is functioning perfectly. I can eat whatever healthy foods I want. I am not constantly tired. Problems: I probably take 25+ pills a day because I have a very high PRA, but that is really not a big deal and I took just as many before the transplant. I had 2 melanomas before the surgery, so I get regular skin checks and am very careful about sun exposure. The most annoying problem is that I get near-constant UTIs, but I have a infectious disease doctor with whom I communicate regularly. As I age, I am experiencing other health issues but they are not related to the transplant. So it is not a perfect life, but far better than if I had continued being tied to a machine every night. I think it is wonderful that you are eligible for a transplant at age 76! Wish you the best.
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The whole finding a living donor process is a JOKE!!!
angry about kidney transplant?
Second transplant 
kidney transplant recipient.
