Hello- I'm new to the transplant list and New to posting in this community. I met with the transplant team on 3/3. This would be for a preemptive kidney transplant. I'm stuck between ignorance is bliss and information is power. Lol. Anyways, I was approved that day and put on transplant list. I feel good my egfr is 20. I'm on several medications for my kidneys and blood pressure. I'm not proactively seeking out a living kidney donor. A couple family members and friends have put out "feelers". I still feel kind of stunned that were "here". I'm 46 and have an 8 year old son, that I'm tremendously concerned about. I want him to continue to have a mother than is very involved in his life. If anyone has any advice/info/anecdotes that you'd like to share with me it is all appreciated. Right now I don't know what all that I need to know. Thank you
New to transplant list: Hello- I'm new to... - Kidney Transplant
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One of the things they don't go into detail about are the immunosuppressant drugs with their side effects you will have to take for as long as you have your transplanted kidney. There are many side effects. Everyone's experience will be different. I had a preemptive living donor kidney transplant two months ago. The transplant team said this is the best you can hope for. They last longer and usually start working right away. That certainly has not been the case for me. My GFR was 11 before the transplant. My current GFR is 19 with the new kidney. It has been very slow to wake up. At my last transplant clinic appointment I told my nephrologist I'm getting depressed because I felt way better before I got this transplant. I was not sick at all. My labs were good. I was able to do anything I wanted to do. I live alone in my own house, so I have to do everything myself. I've been back in the hospital since the transplant because of issues with it. I wasn't sure I wanted to do the transplant because it was a 0/6 match but between the transplant team and family and friends, I was talked into doing it. That and I worried the transplant program might hold it against me for turning it down. If I could do it over, I would wait. My quality of life is terrible now. I can barely stand for a few minutes and cannot walk very far without getting exhausted. I literally don't have the energy to do anything but sit or lay down. I am older than you, 66. They make it sound like transplant is the be all end all, but there are pros and cons. I know other people have had experiences like mine, but I would consider us outliers. I never expected I would be one of them. I could live with the crappy side effects of the meds if I had the energy to do things. Most people who had transplants will tell you despite the challenges it is worth it. People don't want to hear about the negative experiences. You can see that pattern if you read through a bunch of posts. I have never been on dialysis, but I'm sure that is no picnic either. All I'm saying is be as informed as you can ahead of time. Best of luck to you.
Thank you for your reply. I've never been on dialysis and hope to never be. I was made aware of taking the immunosuppressant meds for life, but no, not a word was said about the side effects. Physically- I feel about 80%, so I wouldn't want to go through a transplant at this point. I follow dadvice on YouTube. He is knowledgeable about renal issues and brings world renowned guests on, that field of study is Nephrology. I would not want to accept a kidney right now, if not a practically perfect match. My mom, family and friends that I say that to, have the same advice, "You better take any kidney!" I know that they want me healed but they're not understanding what life after transplant could be. I'm sorry that you're doing it at home alone. I do have my husband, whom I can't imagine will be that helpful post transplant. So much to navigate.
Hello Sapphire: Sorry to hear about the downside to your kidney transplant. I came on here today to ask about other's experience with their kidney transplant and any tips they may have for the evaluation and ran into your story. I agree a transplant is not the cure all it could be. I really hope your condition improves. I understand being pushed, too. Two years ago, my eGFR declined to 20 and my Nephrologist is all happy that now I can get eligible for dialysis or transplant, but I wasn't interested in doing it while I was feeling fine. Why push fate and take a chance on something worse while my kidney is still working. Fast forward to now two years later. My eGFR is now 10.9 and stable for over a year. My Nephrologist is again pushing me to do dialysis and/or transplant. My one kidney is still working and I still fine. I am not rushing into dialysis as he wants me to do, but I am set to get evaluated to get on transplant waiting lists at different centers. My appointments begin next month. I'm one of those that know that physicians are not Gods and they don't know everything. And putting a patient on dialysis and/or transplant is when they make the big bucks not from office visits so they push us into it. I also know about the lifelong meds that a transplant patient has to take to keep the transplant safe and their are lots of them and it isn't cheap and as you said and I concur, it is not a cure. People don't want to hear negative experiences, especially our specialists who are trying to talk us into doing something we really don't want to do. I feel I'm as informed as I can be and still I wonder what else is there that I'm missing. Thanks for sharing your experience and I'm so sorry to hear that it wasn't a positive one. I really do hope your condition improves.
I disagree that doctors "push" patients to get dialysis or transplant because they "make the big bucks". Simply put, when renal functions decline to a level that patterns actually become eligible for the wait list, your other organs are also declining and suffering the damages because of your "sick" kidneys. They try to preserve those cardiometabolic functions for you when they recommend these treatments.Regardless, the choice of receiving treatment is patients' to make alone. We always can say no. Just know that at the end of the story, without treatment, ESRD death is inevitable.
Yes!! Completely agree. Doctors don't "push" patients to get on dialysis or transplant. They're often dealing with patients in denial - my husband was one of those. He was always "fine!" And he constantly said, "No! I don't need that yet!" And then his body started disintegrating almost overnight and he was thrown into emergency dialysis. For those worried about cost, emergency dialysis isn't cheap at all. It requires instant hospitalization over several days, it requires around-the-clock monitoring, it requires surgery and then it requires yet more surgery afterwards to move to a permanent fix. Often, the heart is exceptionally stressed so heart attacks are imminent. Digestion and mental functions are off because of electrolyte imbalances. And more. The blows weaken the body further. If one is wise, one prepares for things in advance. And that will save one's health and pocketbook. I know. I've watch trouble unfold in real time. When I told his nephrologist my husband (and I) could have skipped over a lot of issues and saved us a lot of heartache by being proactive, such as considering a pre-emptive transplant, he smiled sadly and simply said, "Some patients aren't ready for do anything." Medical specialists should not viewed as adversaries but as professional guides - the vast majority have your interests in mind. So look carefully and logically at all aspects; purely emotional decisions do not benefit you or your loved ones.
This certainly gave me another way of looking at a preemptive transplant. Thank you
I just wanted to tell you what my nephrologist told me. I was at 10% when she said it was time to get ready for dialysis. She said that if you wait too long and your kidney crashes that it is much harder to recover from that. I did have the peritoneal catheter put in and three weeks later I got the call for my new kidney. I have a deceased donors kidney. It started working right away and I was just so grateful. One of my other doctors said that it could take a year before you are totally recovered. 6 months after my transplant I built a new flower bed and hauled 35 bags of soil to dump on my new flower bed. I felt great. I’ve had my kidney for 5+ years. ☺️🙂😇
You're wise to get on the transplant list. My husband, although urged to do so, refused to consider it and wound up on hemodialysis, later peritoneal dialysis, and then, almost 4 years ago, received his precious gift. Nothing is better than having your native kidneys. Do everything you can to keep them functioning as well as possible. But if when that door closes, then it's a choice of dialysis, transplant, or mother nature doing her thing. In my husband's experience, dialysis gave my husband a much poorer quality of life. He didn't feel well, he couldn't sleep, etc. He wound up with restless legs and a very itchy rash - common dialysis issues. Dialysis also required binders which affected his appetite, EPO infusions for anemia that gave him chills, and more. So he is exceptionally grateful for his transplant - he's not tied to a dialysis machine, and all the issues and side effects he had while on dialysis disappeared the moment he received his transplant. Now, at age 75, my husband still works and travels and loves life. It's generally recognized that a transplant not only provides most individuals a better quality of life (constant removal of all toxins, etc.) but also more years of life. Yes, immunosuppressants do produce side effects, but with open communication with the transplant team, most side effects can be minimized. Bottom line, it's important to remember that both dialysis and transplant are medical treatments. They both come with issues. But, in comparing dialysis and transplant, my husband is very humbled and grateful for his deceased donor kidney. He accepted a kidney with issues (one that would have been discarded in prior years) and it's not a perfect match. But it has worked exceptionally well for him - predictions are that it will outlast him. We trust you'll be pleased with your decision and outcome too.
I self diagnosed myself +35 years ago (I have OCD) when Nephrologist were very rare at that time. When I moved to Singapore 21 years ago, I found a very good young nephrologist willing to answer my incessant questioning. And true enough I am at stage 3a, . Together, we mapped my journey - diet, exercise, meds management (HBP, gout, vertigo, tachycardia, etc.). And planned all possibilities and next steps/options. I had 4 living donors, (all volunteer relatives) that have been matched 1 year before the proposed transplant date. My daughter was 4 out of 5 and the closest and best option for optimum success. We were preparing everything before - learning all pros and cons, ethics committee , finances, etc (OCD druven).
I had the transplant in 2021 when my EGFR was 8 (that was the plan). I never went to dialysis nor did I consider it. I wanted to continue an active life and to travel. I am 70 now and retired for 3 years and back in the Philippines. I still run/jog 8-10K every other day. I used to run the marathon until I was 60.
I've had the usual side effects (and more) of immuno-suppressant meds. But I have researched enough to understand the cons and have accepted them. I live with them so much that now, I am not bothered by the inconvenience - the effect of knowing.helps a lot. The positive side effects of the transplant: no more gout, HBP is controlled, diet is fantastically and drastically different etc. And my hair somehow grew a little thicker.
I can eat anything, exercise, travel, etc. - but with moderation, I am able to reduce the dosage I am taking. It also help that I purposely lost 15 kg. I still see my Nephrologist quarterly and he is very good in managing my meds.
At EGFR of 20, you most likely have 3-5 years - with proper diet, exercise, etc. and a very good kidney management team (per my experience) And that's enough time to research, learn, prepare, know options, etc.
God gave me OCD for a reason. And I hope and.pray He provides you with the same blessings to help you be guided.
Good luck, God bless and take care.
Hi, firstly with your GPR level you have a bit of time, and if you’re feeling well I wouldn’t rush into it. My oldest daughter was 8 when I found out I had kidney desease and I was well until I had my second daughter , she was born at 25 weeks because of my kidneys and I went straight into kidney failure. I was on dialysis for the first 8 years of her life , then I got a kidney in 2020 . I truly believe having the kids kept me going , distraction is great. I do worry about how long il be around for them but I think that’s very natural. It’s true side effects of the meds are sometimes awful. I got steroid induced diabetes and ulcerative colitis. But I just do my best as a Mam and a wife and try keep on smiling. Good luck on your journey
I had a 5 percent kidney function when i got my transplant and was on dialysis for 3 years.I felt good on dialysis and even before until the last 3 months then it got really bad as in super tired.But when I got my new kisney I did't realize how bad the immune suppression drugs would make me feel and all the 1 step forward three steps back there woyld be for three years with some very serious hospital stays and virus cmv battle.You think going in that as soon as you get your kidney you wipes ypur hands and skip off into the sunset but you don't and the transplant centers should really let you know this is not the case because also you spend the first couple of months then year going crazy thinking you are gonna lose the kidney.If you feel relatively well going into it then it is worse because it knocks you on your ass and you start thinking was it worth it,i felt better before! That being said,once you get through this,i am 3 years this july,it was and I didn't realize how tired I really was all the time before,even when I thought I felt good because now I feel so much more energetic and have meds adjysted to the right amounts and combinations.
I just got reactivated and was given a list of the meds. I plan on taking it to my pharmacy and making sure they stock them and what the side affects might be. You can also go online with the name and look up side affects but be warned you may not have many and the list can be long and scary.
Hi. My wife age 79 had her transplant 3 years ago. Her eGFR was around 12 at the time. Her deceased donor was 79 at the time. All went well apart from the EBV virus which they new the new kidney had but my wife didn't have; most people have it early in life. It did cause a serious ulcer which promptly disappeared when a sample was taken. She now has an eGFR around 60 and it's been a miracle cure. My wife convinced the transplant team to finally take her off the steroids which most people are given as it was adding to her hand shake and weight gain. This has not caused any problems despite only being on a single anti-rejection drug Advagraf (generic Tacrolimus). So, really the only real downside of the transplant for her is the need to take the Advagraf 1 hour before breakfast and the EBV virus. She still has some hand shake from the Tacrolimus but it was worse.
I am 3 years post transplant. I have PKD. My experience has been great. I had my transplant with a GFR of roughly 12, and a 0/6 match with my brother. I am 64 and lived pretty much like yourself. My baseline creatinine has actually gone down significantly in 3 years. I have no significant issues, and my drugs have been reduced over time. I am very active and nothing really holds me back. Now it's not gravy to get here, but well worth it. Maybe I will encounter struggles, and I know many have, but just telling you my story. Good luck!
Each of our journeys is so individual . Our response to drugs surgery or emotionally.
From my perspective …. I’m 5 years in to transplant I’m 62, more active than I w ever been, and to a great extent healthier than I rcever been. I’m grateful on a daily basis for the smallest things and big things have perspective . I’ve yet to have a problem , I take minimal drugs eat well and enjoy life.
You have the best years of your life ahead of you. Stay open and balanced. Read up but don’t scare yourself , get as fit as you can pre transplant. My EGFR was 5 on the day I got my lovely kidney which is going its utmost to keep me going and I do my utmost to care for my body .
Best of luck
First I will say if I was able to find a donor than anyone can. The process is overwhelming and scary. You are not only juggling your kidney disease but juggling your family and every day life. First off reach out to the National Kidney Foundation Peer Mentoring Program. They should be able to pair you with a mentor who can answer questions and help you through the process.
Spreading the word through social media will increase your odds of finding a donor. If you want to discuss in further detail send me a message through the chat function and I would be happy to talk with you. I just had my sixth transplant anniversary.
That's awesome! Thank you @Transplant324
I feel so much better than I did at egfr of 20. I had stepped down from a good paying job because I couldn't stay awake or focus. My kids had lost on having me present even when I was in the same room for so many years. I am glad to have my life and vitality back now 50s when I still have time to enjoy it. I was also a preemptive transplant. I hovered around 20-30 up and down for about 15 years before I finally hit the metric to be listed. Then 9 months later, a kidney came available and 3 of the 4 people infront of me dropped out for one reason or another and there were 2 kidneys.
I am now 2 1/2 years post transplant. I have had multiple bouts with CMV and the meds have given me diabetes. I get sick frequently, but it is so much different to deal with illness when you not already so washed out that you feel like you are constantly wading through a swamp.
I knew there were risks, but we can never know for sure what the future holds. I took a chance on feeling better and I am so glad that I did.
Thank you 6V53! I love hearing your stories.
Hi, not sure where to start as you seem to have received quite a few responses, but my take away is your last statement about being involved in your son's life. Good for you as there can be a great life after transplant if you are willing to work for it. There will be some down days as well as a tremendous amount of great days. Listen to your medical team, do what they ask to the best of your abilities, if you have questions about drugs ask those questions - but meds work or there would not be as many of us here. If you think you have side affects discuss them. Get vaccinated, they work. I have had covid twice and was not "sick" for more than 36-48 hours because the vaccines did their job and kicked ass with the virus. Once you have the transplant hydration is as important as prescribed meds, as is eating well. No one is perfect with diet, I know as I loved pizza during kidney failure as well as now 43 years post transplant. I also try to get as much good stuff as possible that includes salad and fresh fruits on a daily basis.
Now to the point. My two kids were born after my transplant, sort of..the week of my transplant we discover my wife was pregnant with our daughter, my son came along 5 years later. I was able to become involved in my daughter's life I as a certified brownie (Girl Scouts) leader when my wife asked for my help as I was self-employed and had a more flexible schedule to be at the meetings. My son was of course with baseball and soccer as I was asked to be one of the coaches after his first year of play. That lasted up through the JV level of high school for both of those sports. Don't be afraid to ask for help with your medical team about appointments when they might conflict with your family life, when necessary. I required non-evasive chemo treatments during little league and soccer for a couple of years. The chemo nurse at the VA hospital was also a coach in his town and would schedule my appts first thing in the morning so I would be back for practice in the evening.
My two are adults now and I have a 14-yr old grandson that I had a few days of the week till he started first grade. We still bike on off-road trails and have recently started fishing local rivers together. Sorry for the winded response but I wanted to let you know that yes you will worry, as I have so often, but that's the life of a parent, regardless. But there is no limit to how involved you can be in your son's life after a transplant! And yes its been 43+ years since my transplant.
Your story is similar to mine except I am 70, 68 when i got the transplant. I won't say it was easy but, after some time and dealing with usual setbacks that comes with it, I believe it was the right thing to do. I'm in a different stage of life than you but I still think I made the right choice.
Nice to meet you and thanks for comment.
In addition to many advices you already received, I wanted to emphasize the importance keeping up with physical activities and routine exercises, not just now, but also before and after the transplant. Keeping your baseline health as fit as possible buys you long mileages. Statistically speaking, your ESRD treatment long-term outcome is best with a preemptive transplant and a living donor. The probability of survival after five years on dialysis is unfortunately less than 50%, so definitely plan for a cooperative relationship with your care center to ensure you are on the list as to not lose out on time.
Thank you, much appreciated.
Thank you for your comment to everyone. I see we opened a can of worms with our comments. Good. Much appreciated. Sorry to disagree with you, but I know a great many people who were "pushed by their doctors to something they didn't want/need to do, yet. And because it didn't happen to you doesn't mean it didn't happen to someone else. It happens everywhere everyday. Yes, there are some doctors that care about their patients, but they're in the minority. The bottom line is money talks. I've been on the physician merry-go-round on and off since 1986 while I was in the military when I first became ill. I had to fight for everything because physicians don't want patients to know everything. My physicians would tell you that I know more than the average patient. I do my own research. I actively seek answers. I'm highly educated. I know the system very well inside and out. I'm a strong advocate for myself and others because of this. Frankly, I don't trust physicians. I know how they only know 1% of what is going on. And a good physician isn't afraid to tell you that. I remember a story my Nephrologist told me two years ago, when my eGFR dropped to 20, thanks to a bad cocktail of meds my GP put me on for a painful UTI, but that is another story. He pushed me to begin dialysis back then but I didn't do it. In the end, he agreed with me because I was fine and my labs were fine with no clinical symptoms to deem beginning me on dialysis. But he wanted me to. Anyway, one of his patients had a eGFR of 2 and wasn't ill or showing any clinical signs. She was doing great and could have been for awhile. Our docs just don't know everything. Anyway, my doctor was scared for her and pushed her onto dialysis and now she is ill and so on. She is a great deal worse than she had been. She isn't the first person I've known and/or met that says the same thing. Fact is on dialysis, you don't get better. Your body deteriorates. Trust your body, trust your gut. No one knows it better than you do. If you're not ready, you're not ready. Transplant and dialysis is not a cure. It is a treatment that sustains life. And from doing so, our physicians make "big bucks". That is all. Of course, it is better than the alternative. Thanks again. Stay safe.
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