I am a 66 year old female, with CKD stage 5, EGFR is 13, not yet on dialysis and still feeling okay. I am on the Kidney Transplant list and there may be a possibility of a living donor transplant. I would really like to hear from people who have already had a transplant and what kind of experience they have after getting the transplant.
I am especially concerned about the anti-rejection meds and side effects associated with them? Any complications you had? Are things better or worse since the transplant? How long did problems last? Anyone wish there was something they knew before having a transplant? Anything that if you had known your decision may have been different?
My other concern is that I live alone with my cat. I have a couple of people that can help with taking me to appointments that first month, but after that I’m pretty much going to have to depend on myself.
Another thing, the Covid pandemic was very hard on me. I didn’t get Covid, but that is probably because I was totally afraid to leave my house and barely did for 3 years. I was very isolated and I fear this may be a problem for me again because of the immuno-suppressant drugs.
Please share your experiences so I can make a better decision for myself. I’m trying to decide if a transplant or hemodialysis would be better for me. Sorry for the long post. Thank you.
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I had a living donor transplant 6 years ago. I lead a very normal life. There are some side affects involved with the anti-rejection meds, but they far outweigh the alternative. There are individuals who don’t suffer from any side effects and then there are those who do. After the first month or so, I did not need any help with anything including driving myself to appointments. Best of luck to you!!
I have also travelled internationally after my transplant and wear masks on flights. I also tend to choose an aisle seat at the movies and not put myself in a position that I am right in the middle of a crowd.
I had my transplant two and a half years ago. In hindsight I should have gone to the dentist before transplant. I had to try about 6 dentists before I got one who would treat me. Also, when you go into hospital for your transplant make sure you bring lip salve with you.
The stories will be different from person to person. What I have discovered on this forum is that as you mentioned that the medication side effects are the greatest problem. Some medications are actually toxic and affect your nervous system, and others will affect your bones. Generally, many will affect your stomach due to large doses in the beginning. You may become a hypochondriac due to the constant blood work and ever constant evaluation of that testing in addition to your at home evaluation of blood pressure, temperature and etc. Then add to that the never-ending doctor appointments. Then add to that an emphasis on diet and water intake. And then the new illnesses you may experience due to the fact you are now immune suppressed. And making sure any new medication does not counteract with old medication. And lastly, the constant worry will the new kidney work and for how long? But it is a treatment, and as for any treatment, the worries start to lessen with time. But they do no entirely go away. Like you and others I had very little symptoms when I started dialysis. I choose pd instead of Hemo to start with while I waited for transplant. Yes when you attend those first meetings about transplant they draw a very rosy picture. Hemo. Takes a fistula and that takes time to develop and you are locked into regular visits for treatment. Pd requires more patient self caring for their treatment and more independence during the day. For me pd was less stressful on my body than Hemo. During my time waiting for a transplant I experienced both. I also live alone but I have family near for a support system. I also moved to a larger community to be closer to my transplant center and hospital. Part of that was due to growing older. With all of the bad side effects and I have had my share would I have stayed on pd? Honestly I do not know. What if questions can drive you crazy. The only thing I can say everyone needs to make their own decision based on their own gut feeling. However it is nice to have a choice. And in the future there will hopefully be many others. Whatever you decide it will be the right choice and never question it.
I think you have to prioritize what aligns best with your life goals. A transplant is likely to give you more flexibility to travel, be less dependent on a Hemo schedule, etc. How are the side effects of meds compared to hemo or late stage ckd? Like which could you live with? I was only 5yrs when I had my first transplant so I can’t really speak bc I don’t remember (38now) but I was told I became a different person (for the better). Ive lived a fairly normal life since. Recently I’ve had a rejection episode/it may be the end of this kidney after 33yrs. I developed osteopenia after long term prednisone. They switched up my meds to deal with this rejection and found out I’m allergic to sirolimus. You can work with your team to find the right combo that works to keep your kidney but lessens side effects.
I also feel you about Covid and being immunosuppressed. It’s a constant struggle. I don’t know what to say other than traveling and spending time with family/friends is important to me so I take precautions. Mask up traveling etc. I, and know others older than me with transplants that have gotten Covid and faired just fine. I take comfort from someone here who said once it’s not getting ill that damages your kidney, most of the time it’s non adherence to the medication/chronic rejection.
I got my living donor kidney almost 4 years ago, in the middle of Covid. I had a very easy time of it when compared to some other people. No rejection episodes or viral problems.
The thing that I wish someone told me was how much immuno suppressant drugs they would pump into me during the surgery and what that would do to me the next day. I don’t know everything they put into me, but they gave me 500mg of prednisone! The next day 250mg , then 5 mg the next day. That was a wild ride. The first day after surgery I laid in the bed burning up from the waist down (I thought I was laying on a heating pad). That was followed by uncontrollable shivering.
Because of the high doses of drugs you should not be around lots of people for the first 3 months. The after effect of all that prednisone is that you will feel great. Better than you have for years.
The threat of Covid is so much less today than when I got transplanted. I got Covid 2 years after my surgery. For me it was no worse than a flu and I got over it with out any lasting effects. It was after that, that I stopped wearing a mask in public. Now I only wear one when I’m on a plane.
Thanks LavenderRabbit. It sounds like you are doing really well. Do you think you had an easier time compared to some others because you had a living donor? Were you a really good match with your donor? Do you still have any side effects from the anti-rejection meds? If so, what are they? All the best to you.
I think I have done well because I am in pretty good health other than my kidneys. I don’t have any other major problems like heart disease or diabetes. As for my match, my doctor said “it is a good match “. He didn’t say it was “great” or tell me how many things matched.
My side effects from medication has gotten better since the start and some of it has been lowered, like the Mycophenolate. Instead of 1000 mg twice a day, I take 750 mg two times a day. It gives me diarrhea. Lowering my dose helped. Also eating a lot of fiber really helps. (Fiber One cereal) Prednisone has made me put on weight and made my teeth sensitive to cold. Which has gotten better with time. Also my voice is a little lower. I was a soprano now I’m an alto. I used to be cold natured, now I’m hot natured. I don’t know if it’s from the medication or just being well.
I'm doing ok. Anti rejection meds are hard on everyone but manageable. I do my best but I did catch Covid and I was in the hospital for >2 weeks. Since Covid I have had pneumonia twice with long stays in the hospital. I am very careful with seeing people and try to avoid crowds. It gets a little lonely but I do my best.
I am living the GOOD LIFE over 25 years since my kidney transplant 10/15/1999! I think everyone has some issues that first year. Doctors start by putting you on standard dose of the immunosuppressants. Always tell your transplant team how you are doing. Finding out your blood levels of the drugs in your system, can help the doctors adjust your dose of your meds. I had a lot of GI issues at first - diarrhea. I was taking the generic forms of Cyclosporine & Mycophenolate. Found that the generics were just a little different than name brand. All of my problems ended after starting to take Neoral & Myfortic - name brand of my immunosuppressants. My creatinine then and now remains stable at 0.8 - 1.0
I take every COVID & Flu vaccine. I go shopping & buy my own groceries. My choice, but I don't wear a mask and am not afraid to go any where. My husband and I travel a lot now that we are retired. We just got from a trip to Amsterdam & cruise on Viking to visit Christmas markets for 10 days from Amsterdam to Basel, Switzerland.
My best advice - you know your body better than anyone and can tell when something isn't quite right. Always, no matter how small the problem tell your nephrologist. He cannot help you if he doesn't know what is going on with you. Early on I felt like I was a hypochondriac, but everything is AOK now. Some on this site have been afraid to reach out to their doctor, feeling that he is sooooo busy! It is your life and everything is important! Never forget that!
A friend was going to be my living donor, but then I got the call regarding a deceased donor transplant. My donor was a 16 year old boy that was killed in a car accident. He was a 4 out of 6 match for me. He gave me a fantastic kidney. Never had rejection episode.
Best of luck to you! Feel free to ask me any questions.
Thanks WYOAnne. Congratulations on over 25 years with your transplant. It’s really great that your kidney is lasting such a long time. Is there a point where the side effects of the immuno-suppressant drugs will lessen? Did you gain weight because of the steroids? What does a 4 out of 6 match mean - is that considered good? Did you wear a mask or worry about going someplace early on after your transplant ? I would prefer not to wear a mask or worry about going out of the house. I live in a large city in the northeast and plenty of people walk around sick in the winter, so you can’t avoid them just about anywhere you would need to go.
After a year or 2 after my transplant the side effects of the immunosuppressants lessened. That first year they try to get you on the right dose of the meds for you. I think the way it was explained to me, they start with a common dose for all. And with blood levels drawn and my feedback to the transplant team my dose was reduced and side effects disappeared. It was also found out in my case, that a lot of my GI symptoms were due to generic form of my meds. When I was put on name brand Myfortic & Neoral, all was great in about 10 days after starting the name brand meds. 5 years out, I was developing osteoporosis and was able to stop taking Prednisone. Now, I take my meds with no side effects what so ever..
And yes, I did gain weight. I think it is really due to no restrictions on my diet and can eat anything I want to. I am not diabetic.
I was not told to, nor did I think I needed to wear a mask. When COVID came along, I did wear a mask when I went out. I have taken the COVID vaccine every time it is offered. I do not worry about it now.
I just got back from a 10 day trip and cruise from Amsterdam to Basel, Switzerland. I did not wear a mask for the plane, or cruise. Trip was Dec 3 - 10.
When put on transplant list they do all kinds of blood tests. One of them is to see your antigens (markers). When you are called for your transplant they try to match as many of these markers as possible with your donor. The way to have a perfect match is to have a sibling be your donor. You get 3 antigens from your Mom and 3 from your Dad. So if you got the same ones, it could be a perfect match and maybe would not need any immunosuppressants. My deceased donor was a 4 out of 6 match. I never have had a rejection episode.
When you have your transplant, always tell your transplant team of any issues you have, no matter how minor. They can't help you if they don't know what is going on. Because of problems I had they were able to reduce my dose of meds and could stop taking Prednisone.
Take care! Have a very Merry Christmas! Let me know when you have your transplant. I am always here to answer your questions, from my experiences.
I, like you, have no symptoms yet (Gfr 16) and am very concerned about the post transplant drugs. It's so scary to make the transplant jump when you aren't feeling poorly yet,but of course realize eventually things will change. I do remember one of my transplant centers frowned on having a cat (possible toxoplasmosis?) but were ok with dogs. I have no certain knowledge on this tho. Maybe it's ok as long as you don't personally change the liter box? Also, the center stressed that I would need a designated care giver. I wish you the best of luck and hope both our journeys end up successful!
Thank you for the well wishes. I agree with you, it is scary thinking about getting a transplant while you are still feeling well. I’m afraid the anti-rejection drugs will be so bad I’ll wish I didn’t go down that path. The what ifs are stressing me out. I don’t remember them saying anything about my cat, I will have to check. I hope it’s not an issue because there is no one else but me to do the litter box and I would never want to give up my cat. Good luck to you on this journey and best wishes that everything works out for the best for you.
Yes! I'm stressing myself to death with the what ifs. My constant fear is the drugs will be more troublesome than maybe just PD. Of course, easy for us to say cause we aren't sick yet and have never experienced PD. To be fair, I know 2 people personally who have transplants and did very well. I'm with ya on the cat, I loved my cat dearly. Can't imagine not having him. Ask ur center.
If you must, always use mask and gloves to change cat litter. Highly recommend you buy some kind of self-cleaning litterbox you only have to empty 2 times a week or so. If you can, hire a petsitter to come do the litter those times or ask a friend to take care of it for you. I also had my cat tested for toxoplasmosis for my own peace of mind, which was very expensive, but I still pay someone to do it. There are other diseases you can get from your cat too. If you get accidentally scratched you can get cat scratch fever. My cat was sweet and never hurt me on purpose, but she was sitting on my shoulder, a loud noise terrified her and she launched herself off my body, scratching me deeply. I ended up on three antibiotics. Also i am supposed to wash my hands every single time I pet her, which I do try to do. I pet her with my sleeve often not my had.
Thanks for letting me know. That will be a problem for me. The first month I will have help, but after that it will be me taking care of my cat’s litter box. I’ll have to wear a mask and gloves. My cat is very affectionate and is usually always next to me or on my lap. He doesn’t scratch me unless it’s an accident, which is rare.
Exactly. Like if they jump off suddenly and back claw scratches your leg. I highly recommend the PetSafe litter box. It’s on sale for only $99 on chewy right now. Usually it is $260. They claim you must buy their special litter but neither I nor my friend who told me about it use it. That way you’re only exposed to cat feces once a week.
My friend Heather (who gave her sister her kidney) knows a little girl who lost her kidney due to an infection traced back to her puppy. Her parents waited a year until her immune suppressants drugs were at a low level, and got it for her, but it cost her her transplant. Dogs are not safe either.
I had a live kidney transplant 4 years ago and had not started dialysis yet. There is of course all the paperwork and tests. When I woke up after surgery that kidney was already working. The meds are ok once they get them balanced out after transplant. I get labs done every 6 months. At first is weekly. I take my meds 8:00 am and 8:pm. I set my alarm on my phone. I also keep several full doses in my purse at all times. Yes, I was very nervous at first. The only thing is being on a steroid makes it hard keep weight off. I pray for the best for you. 🦋🙏
Thank you. It sounds like your transplant is going very well. I’m happy for you. How long did it take you for the meds to balance out? Do you experience any bad side effects now? I already struggle with weight problems, so I’m not thrilled about having to take the prednisone. Best wishes and many blessings to you.
Once anyone’s GFR drops below 20, they are eligible to get on the transplant list. They do not have to wait to be in dialysis.
Apply for transplant immediately. You can always change your mind and not get one. You won’t be taking anyone else’s “spot” in line because you can be listed and always say “no” to any kidney offer and not lose your place in line. I do know of someone who said “no” and it’s seven years later and she’s waiting for a match to come up again.
The minute you start dialysis, your lifespan is shortened. That all changes with a transplant.
It can take six months to get listed for transplant. It doesn’t happen quickly. You can also be rejected when you apply - it is not a done deal to get accepted. You may have to start all over at another center. Same with a donor - takes months to qualify. Only 1 in 5 is healthy enough who applies,
Sure you can do PD - but do you risk getting a painful infection, peritonitis. And have to deal with a catheter hanging out of your body. And tons of supplies at your house.
Hemodialysis is an amazing invention and I’m so grateful it allowed me to live. However, it was also miserable for me for so many reasons, for ME at least. Go to a hemodialysis center where almost everyone else seems nearly on their deathbed, carried in on stretchers. Have blood taken out of your body for hours, so you get cold. Watch other people vomit or even die during the process. Be exhausted on the days you have it. Horribly, horribly exhausted. The worst exhaustion I’ve ever felt.
Sure, some people don’t find hemodialysis so awful. I did.
If you’ve never really thought about it, your kidneys eventually stop making urine. Since you’re not urinating, fluid can only be removed during dialysis, and only so much can be removed. So you have a “fluid’ restriction. that’s not jsut water, it’s anything liquid at room temperature. - oatmeal, yogurt, ice cream, ice cubes. Imagine being thirsty but you can’t drink because you’ve hit your limit for the day. You will be constipated. Every single patient at my dialysis center was, and was taking laxatives, because 32 ounces of fluid a day is not enough to move stool through your body.
Dialysis machines can only remove some waste products, so now there will be those high potassium/high phosphorus foods you cannot eat (or only have in small quantities). LIke…potatoes, tomatoes. Red sauce is in many restaurant foods, recipies. Dairy has to be limited too, unless you want to itch all over from too much phosphorous.
Some people do adjust are OK with dialysis. I found hemodialysis to be miserable. I did not want to do PD which many say is easier on your body.
Transplant is HARD. You do not get a kidney and ride off into the sunset.
The medicines are very difficult. They increase your risk of certain cancers. That is a reason not to have a transplant, for some people. Most people are put on steroids and gain 15-20 pounds after the operation. Fully 20% of all transplant recipients end up becoming diabetic.
Transplant is not for everyone! I just suggest you get listed now so you have that option.
I have a rougher time post transplant than most patients. Before transplant, I was only ever hospitalized overnight if I had an operation, like I had a hysterectomy. I had never ever been inside an emergency room. After transplant, I’ve been hospitalized three times. Once was immediately (four days after the transplant operation ) with a life-threatening complication and almost lost my colon! I’ve been to the Emergency Department 7 times this year. The first anti-rejection drug was toxic for me and I got sicker and sicker and after 3 weeks they finally realized this was not going to improve and switched me to something else.
When they increased my prednisone I felt suicidal, it was horrible. My nurse said she’s seen “grown men cry” and patients throw their tray tables around the room. Predniose is truly awful - BUT it will help you keep that kidney.
Yes, at about post- op week 3 I greatly regretted getting a transplant and wished I had stayed on dialysis. By week 5, I had gotten better, changed my mind, and have never been sorry since then. Yes there are a few patients who do not respond well to transplant and end up sicker than before. It happens. But by and large, most patients do go on to live longer, healthier, happier lives than if they had remained on dialysis.
I’m incredibly grateful for the person who decided to be an organ donor and gave me their kindey. I’ve always been listed as a donor, and still am. If nothing else, they “recover” corneas, and skin for burn victims, etc.
How am I doing now? Mostly OK, My antirejection drugs make me anemic so like some patients my hemoglobin is in the 10’s. That is the worst part. It’s been a very very bitter truth I’ve had to accept that no “burst of energy” materialized for me after transplant like some say. I have little sense of taste since with chronic anemia you lose tastebuds on your tongue. That’s never getting better. Yes I can taste some, but not like I used to be able to.
I’ve also gone from 185 to 216 since then operation. I struggled with my weight my whole life, was once up to 220, and swore I’d never be above 200 pounds again, yet it came. I just started zepbound this week and hope it can help me lose weight. Otherwise my doctor recommends weight loss surgery which is something else I never wanted to have.
Thanks ShyLoverDoctor. Your experience with transplant and others with similar stories is what causes me to question whether I want to go the route of transplant versus hemodialysis. I would never want to do PD. Granted if I were to go on hemodialysis I might come to really hate it. The thing about having a transplant is that you can’t change your mind after the fact. You’re stuck with the immuno-suppressant drugs for life. I am listed on the transplant list and potentially have a living donor which is why I’m trying to decide what would be best for me. I’ve been reading this forum for about a year now and it seems to me that most of the people posting have had issues with their transplant or negative side effects from the drugs. I don’t have and don’t ever want diabetes mellitus, skin cancer, GI issues, hair loss from the tacrolimis, which my transplant center uses. I struggle with weight and currently weigh 217, so I absolutely don’t want to gain any more weight. I want to lose 50 pounds. I hate myself at this weight. I’ve been dealing with anemia for the past 2 years from CKD where my hemoglobin in usually in the 9’s and gets into the 10’s only after 5 rounds of iron infusions and EPO shots until I have to do it all over again. I wouldn’t want to keep dealing with that after a transplant. Now maybe there are people who don’t have many issues after a transplant or continuous side effects from the drugs and they just don’t post about their experience anywhere. I don’t know. What I do know is that I am full of anxiety thinking about the negative things that can happen with a transplant. If it was a deceased donor kidney, I would pass on it at this juncture and try hemodialysis first.
I'm a spouse to a diabetic and former dialysis patient (HD then PD) who received a deceased donor kidney at age 71 after a year of dialysis. We asked the same question you have - what's best - dialysis or transplant. His nephrologist simply answered the transplant is the preferred option - generally leading to a longer and better quality life. He often referred to dialysis as a "bridge" to transplant. You ask for experiences regarding transplant recovery. Those can range from easy to hard. One will find the easy recoveries are rarely represented in communities like this one since these individuals never needed "support" - they've essentially left the medical environment behind and resumed an active life. Case in point, a man recently left a FB community noting he was going back to work - his hospital stay was only 3 days, he felt wonderful, and wished everyone well. (It's good to remember that the transplant world continues to move forward, I think a recent patient was given a kidney while still awake, too.) However, most remain in the hospital for 4 to 5 days; sometimes longer. A person's underlying health, psychological needs (which I think is under evaluated), the match and quality of the new kidney, adherence or reactions to protocols, etc....we are all different. It's impossible to say my husband's experience will be yours. At one time, we were angry that we weren't told of these things advance (although possible complications were probably in the fine print on the paperwork he signed off on). Yes, he had a ureter leak, a drop foot, a-fib, and on and on. But should the entire list of "possibilities" be drummed into patients when those chances are only around 2% for most? At one time, we thought everyone needed to be sat down and lectured and warned in depth on these things. Today, in reflection, I don't think so since I see so many living full lives never facing them. (Indeed, I don't think anyone in this community experienced my husband's outcomes.) Of course, it's good to remind patients to report adverse effects promptly - medications, cardiac symptoms, abnormal discharges, and other physiological symptoms. But I sense deploying the fear flag is unnecessary. Today my husband is a fit (no weight gain) and active senior (now age 75) looking forward to a possible corneal transplant (due to a genetic issue) and living life well. Yes, we get out, we walk and exercise, we travel, we only mask up as needed, and we host dinners. Rejection is generally due to chronic allograft rejection, not an illness. My husband repeatedly mentions how grateful he is for this gift. Sadly, some withdraw from society, hold on to troublesome thoughts, afraid of the future. It truly robs one of living life fully. Whether one is facing dialysis (yes, that also makes one more vulnerable to illness) or transplant, it's good to be optimistic. I simply wish this country would do more to steer people to mental health professionals who can help make the world a brighter and less threatening place - especially for those confronting or making decisions re chronic conditions (in this community, a transplant or dialysis). Thankfully, my husband remains unwaveringly positive in his outcomes. I'm certain it's played a major role in his health and wellness today.
Thanks Darlenia. You put things in a different perspective for me. I agree completely about the psychological needs being under evaluated. I wish they would put more emphasis on that. I suffer from depression and have for my entire life since I was a teenager. I also experience anxiety sometimes. I’m sure hemodialysis is no picnic. I’ve never experienced dialysis, so I wouldn’t know how it would be for me. At my transplant evaluation they made it sound like everyone who has ESRD should try to get a transplant if they can because it’s the best choice. I feel the least they should do is tell you about all the adverse side effects you are likely to experience from the anti-rejection meds. They didn’t bother telling me about those. I found those things out from the research I’ve done and from reading the posts on this forum over this past year. A while back I read on the CMS (Medicare ) website “Today, (9/18/2020) the Centers for Medicare & Medicaid Services (CMS) announced it has finalized the End-Stage Renal Disease (ESRD) Treatment Choices (ETC) Model, to improve or maintain the quality of care and reduce Medicare expenditures for patients with chronic kidney disease. Announcing the Kidney Care Choices Model,which creates strong financial incentives for health care providers to manage beneficiaries with chronic kidney disease (CKD) to delay the onset of dialysis, and incentivize kidney transplantation.” That makes me suspicious as to whether a transplant doctor telling me a transplant is my best option is also in my best interest. I’m 66 and don’t have longevity in my genes. My parents died in their mid 70’s. No doubt it’s probably a great option for some people and certainly someone young and healthy. However, I do feel a little less anxiety after reading what you wrote to me. I wondered if people who had really good outcomes just didn’t post in these forums. I’ll have to try to find out more about the match and what all that means. That is great your husband didn’t gain weight. Does he take prednisone? I have RA and refused to take prednisone for that. I know I won’t have that option with a transplant. I’m in good health other than I am about 50 pounds overweight. I weigh 217 and certainly can’t afford to gain more. Just curious, did you or your husband ever think maybe he made a mistake getting a transplant or were you both always sure it was the best decision despite the difficulties he had to go through? I’m guessing it wasn’t always easy for you either as a caregiver.
Yes, my husband is on very low dose prednisone of 5 mg. I believe most start at 20 mg following a transplant and that it's then quickly lowered. Keep in mind that the goal is to stop your immune system from attacking that gift you've been given. If you've ever experienced a simple splinter in your thumb, you know how that goes. Your body definitely will not ignore a foreign item, no matter large or small. My husband isn't upset taking prednisone, other than it ramps up his diabetes. It really hasn't affected other matters. Again, his dosage is extremely low, as it is for most. Yes, some manage to go off prednisone completely, but keep in mind other drugs will be used to keep your kidney from rejection and those, too, come with side effects. As for weight gain, many transplant patients do gain weight. I suspect it has a lot to do with feeling better following transplant. The fluid and food restrictions are gone, so food is again back on the table and it tastes amazingly good. With regard to the comment made at your evaluation that everyone should try to qualify for a transplant - that's spot on. Please remember that dialysis cleaning effectiveness is only 10-15% whereas a transplanted kidney cleans your blood completely or very close to that. You mention Medicare's Kidney Choices Model, recommending transplantation over dialysis - ultimately saving costs. That model offers great direction. Dialysis involves dialysis buildings, staffing, machines, infusions, factories, warehouses and trucks - it's a very expensive and profitable treadmill while producing a far less quality of life for patients. While my husband was on dialysis, not one staff member approached my husband to urge him to seek a transplant. Why would they? Keeping patients on dialysis is money in their pocket, right? Meanwhile, my husband, with a transplant and now in far better health, sees very few expenses - he only sees a nephrologist every 3 months for a routine check. So I'm grateful Medicare is watching our for-profit healthcare system and trying to be good stewards of our money. Regarding choices, you mention simply doing nothing at all - no dialysis or transplant - essentially letting nature take its course. And, yes, that's something to consider too. Indeed dialysis, transplant, no interventions - are all viable choices. If a person has thought through it well, I will support their choice. Everyone lives their life in the way they feel best. Your body, your choice. If you're questioning the way to go, you may want to check out this website. It has a questionnaire that you can fill out which will give you the the ideal course of action for you. Sending encouragement that you're able to sort through everything and that you're at comfortable and at peace with your decisions. lifeoptions.org/living-with...
Just to clarify, I would never do nothing. It’s going to be a transplant or hemodialysis and I am leaning towards a transplant. I agree completely that it’s a great thing that Medicare is trying to be good stewards of our money. I guess I misconstrued the statement that the model creates strong financial incentives to recommend kidney transplants. Thanks and all the best to you and your husband.
I had a transplant on 1/31/24 and my life is so much better! I am back to work as a family medicine provider (Nurse Practitioner) and I haven't really been sick. I typically wear a surgical mask in the office and then if a patient has any concerning symptoms, I'll put on an N95 before I go in the exam room. I have a large family and young adult kids, so I'm exposed to people a lot. I was very careful during the first 6 months and since then I have travelled on airplanes a couple of times. I was cautious during the pandemic (pre-transplant) but I had to work in the clinic and I had teenagers, so we stayed pretty social throughout. Despite getting vaccinated every year, I got COVID in 2020, 2021, 2022, and 2023. I even got a mild case of long COVID in 2021 and my asthma has been pretty bad since then, but it's well controlled with inhalers.
Regarding recovery and side effects. I've had a lot of surgeries in my life (I think this was number 10) and the first 4 weeks were pretty rough. This was the hardest recovery I've had. I was glad to have friends who brought me food a few days a week during that time. I stayed with my partner and he didn't allow me to do housework. But, once I returned home, I was OK. I was back at work full time by month 4. However, I have a lot of fatigue and need more rest than before.
As for side effects, I had neurologic side effects from the tacrolimus--tremor, brain fog, insomnia. They switched to the long-acting form after 6 months and I'm feeling much better. My magnesium is always low so I eat as much magnesium containing foods as I can and take supplements. Nonetheless, I do get a lot of muscle soreness and cramping. The mycophenolate upsets my stomach but that's manageable with famotidine. Sometimes I have loose stools but that's no big thing.
So, overall, having a transplant was the best thing for me. I'm back at work in a very fast-paced job and get to travel and have fun with my kids.
Thank you for sharing Capella. You will be coming up on your one year anniversary soon -congratulations on that! I’m glad you are doing well. Sounds like your side effects are more manageable now. All the best to you!
It can feel scary to be in this stage of your kidney health and the unknowns can trigger imagination of the events that may seem worse than they are. Yes, both treatment types have their advantages and disadvantages. However doing nothing is certainly the premature end. Statistically speaking, dialysis is associated with has higher than 50% of mortality rate in five years. For that reason alone, if you can avoid it, I would (and I did).Side effects of any treatments may he unavoidable but they are often reversible and manageable. Our bodies are resilient and if it doesn't get along with one med, there are alternative meds the clinic can try you on. The key is not let the fear get to you before any side effects are actually happening. The chances are just as good that you won't get any that bothers you. Best of luck on your journey and a new beginning!
Thank you LisaSnow. I hear you about the fear. I am feeling a little better about it after hearing from people on this forum and speaking with the transplant nephrologist today. Maybe I will be lucky and the side effects will be minimal. Best wishes to you and happy holidays.
I received a living donor kidney 13 months ago (at GFR 13 pre-dialysis). I really have hot had significant issues with the meds (tacrolimus, mycophenalate and prednisone foe 1 month). I have been sick twice since then (including right now), but so have others in my house and I haven't had a much harder time than they have.
As I never did dialysis, I can't really talk about the difference, but I have watched my brother and mom on dialysis. At 55 and healthy otherwise, it was a great decision for me.
That’s great! I’m glad to hear things have gone so well for you. I’m just curious, and I know the meds will affect everyone differently, did the side effects from the meds go away after a while? I hope you feel better soon! Thanks for sharing.
My side effects weren't that bad and did trend with doses (I was only on prednisone for a few week's taper and my Tacrolimus dose dropped as time went on). They were minor enough for me that they are hardly worth mentioning.
I know my brother had some GI issues after his transplant (I think due to the Tacrolimus dose) and his doctors were able to adjust his meds and reduced the issue to acceptable levels.
I just got back from a 3 mile walk with my wife (although it is 20F). We walk this route frequently. Before the transplant, the pace was much slower and it was still difficult to catch my breath. Now - no issue. The transplant has been very good for me.
Side note to me: don't try typing on my phone. As I re-read the original reply, there were so many typos.
I have iGA nephrology. I had a transplant from a living donor prior to going on dialysis. It has honestly changed my life. I was 46 when I had my transplant (1 1/2 yrs ago). The first 6 months were tough but now I’m back to work full time (I am an educator in a k-8 school) and while I have issues with my white blood cell count I’d say I am as healthy now as I was before I got sick. Hope this helps.
Hi LRob0223, If you don’t mind telling me, In what way were the first six months tough? Do you have any side effects from the anti-rejection meds? Thanks and congratulations on your transplant.
The first 6 weeks were really tough in that your body needs to figure out the med levels needed and I was pretty sore and tired. T about 2 months I was pretty good but it took a lot longer to bounce back than I thought (guess I thought I was younger than I was). I napped a lot. Struggled a bit with weight gain and just having my body heal. I guess compared to pre-surgery I was a lot better I was just impatient with the healing speed. My body has issues regulating the med levels needed. My white blood cell count is really low so they are constantly worried about me getting sick but I work in a school so staying away from bugs is not possible and so far I’ve been pretty good at staying healthy.
I was lucky enough to avoid dialysis, but I've heard it is rough. I am 18 months post and although the meds are a little tough I am glad I received my kidney.
Hi zookeeper54, If you don’t mind telling me, In what way are the meds tough? What side effects are you experiencing? Are the side effects different now than they were in the beginning? If so, how? My biggest concern is taking the anti-rejection meds because of the side effects. Thank you and congratulations on your transplant.
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