Regrets

[Bk-Tony]

I received my transplant on 11/30/2021. I've had so many issues with it since. Between constantly feeling like crazy and not having any energy my care team doesn't give me individualized care. It's like they are working off a check list.

I'm ready to have them take this kidney out and go back to dialysis.

Did your center prepare you for this type of outcome because mine didn't. I was told on multiple times that the only issue would be having a dialysis treatment or two until the kidney kicked in.

Let me know your negative experience so I know I'm not alone please

[PKDpostTRANSPLANT]

I had my transplant one month ago and it has not been easy. Thankfully the kidney is working great but the side effects from the medications are hard...I would definitely tell your doctor because if it is the medicine they can try other medications. Some of them do cause mood swings. But perhaps due to your specific circumstances they may want you to continue with what you are on, but only they would be able to tell you what is best based on what side effects you are experiencing and how your transplant is doing.

I have heard various experiences from people. Some feel better right away, some take a few months and some even take up to a year. One of my transplant nephrologists did tell me at one point to expect to feel bad for 6 months to a year, but to hang in there and afterward you will feel great and quality of life will be so much better. So my advice would be to give it 6 months to a year. I know it seems like a long time when you don't feel well but it will be worth it in the long run. Try to find things you enjoy that take your mind off of everything.

Oh one more thing, I think they should eventually reduce your medications if they haven't already. And at one point my Dr said that it can take a little while for the side effects to calm after reducing the doseages. Once your medications are at their lowest lifelong dose and cleared your system a bit you may start to feel better. Drink a lot of water, eat healthy foods, exercise and get plenty of rest to help your body recover.

[Frenchie05]

Hi Tony, Firstly congratulations on receiving your new kidney! I received my transplant 8/11/21 in uk and I am feeling much like yourself! I felt fantastic for the first few weeks post transplant but it has been an uphill battle ever since. I have had a few hiccups with fluctuating creatinine levels, scans and med adjustments and still attend the clinic every 2 weeks. I just feel so fatigued and drained of energy but my transplant consultant did inform me that it is a very big adjustment for my body to cope with and is confident that everything will settle down once my body learns to cope with my new kidney and meds. I know the medication can be really tough to deal with what with mood swings, upsets tummy etc but am hoping I’m getting over the worst of if? Just the fatigue to deal with because there is no way I could go back to work feeling how I do at the moment. The only information I received was to take care of my skin and keep out of the sun and drink plenty of water oh and no grapefruit.Please don’t give up, just give your body time to heal and adjust to your precious gift.

[blackkat2]

Hi, Bk-Tony--I had my transplant a little over 4 years ago. It hasn't been easy but I'm glad not to be on dialysis anymore. At first I felt like I was living in a strangers body. I do feel there's a lot I wasn't told that I should have been--like the fact that the meds would make me diabetic; but who knows, maybe I wouldn't have done it if I'd known. In the long term, that's been the worst part, dealing with the new diabetes and all it's related issues. In general, my team has been great. I asked to get off prednisone early on. After 4 years I can definitely say things have gotten a lot better and I'm glad I had the transplant. Give it at least a year.

[redpanda67]

BK-Tony,

First off, you are not crazy, the meds are making you crazy. Despite these being called "immunosuppressants" the fact is these drugs influence every cell in your body. Prednisone, tacrolimus, cyclosporin, mycophenolate, and even some of the blood pressure meds and others in combination with all your other drugs can have a severe impact on your mental health. Prednisone can cause anxiety and induce high levels of cortisol which is a stress hormone that can trick your brain into constantly being in a fight or flight mode. The calcineurin inhibitors cyclosporin and tacrolimus can cause neurological problems linked to memory loss, and overall anxiety, more so with tacrolimus. Mycophenolate has been shown to increase the risk of depression.

Beyond the mental health issues of the meds, there are the physical as well. As blackkat2 mentioned, some meds, like tacrolimus and prednisone can induce new diabetes. It's not uncommon for transplant patients to be on insulin for the first 6 weeks after transplant. Prednisone can also cause you to gain weight, by increasing your hunger hormones to the point where you are always hungry and always want carbs. I had a serious issue with this at the beginning where I would wake up in the middle of the night and eat an entire loaf of bread.

I agree with everyone else here. For the most part transplant doctors and to some extent patients always discuss how wonderful and life-changing it is to get a transplant. Not many talk about the long road of dealing with the life-altering drugs, constant anxiety about losing a transplant, or in some cases the guilt people feel about getting a transplant. Not to mention the extreme loss of control you feel every time you get labs done or go to an appointment, which only increases your anxiety.

Unfortunately, transplants are a treatment, not a cure. I think a lot of us knew this in our heads going in, but the reality soon kicks in when we realize treatment really means an entirely new way of life. It takes time to adjust. Some will adjust quickly for others it will take more time. I think on average most people tend to adjust within 12-18 months.

As far as your transplant team is concerned, if you feel you need help or just someone to talk to I would contact your nurse manager and ask them for a referral or put you in contact with either their social worker or some other mental health professional. Be blunt, despite what most people think, subtle hints about your mental health state are not obvious to others and you may only suffer more thinking that people don't care, when in fact they were just unaware. I would say the same thing about ALL of your medical concerns, subtlety is not your best approach.

I know you are feeling crazy and you have no desire to do anything. Know that you are not alone, and I would almost guarantee that everyone on this board has gone through this during the first year of our transplant. You will hit a point where your meds become balanced, you are in tune with your body again, the anxiety is lifted, and you don't think about having a transplant 24/7. In the meantime, you may try to reduce your anxiety. I had a lot of luck reducing my anxiety by focusing on a single goal for the day, whether it was doing laundry, going for a walk, or organizing my meds. Completing a single task, one which you have control over, can really help to reorganize your thinking and reduce your stress level.

Sorry, my posts are always long-winded, I've been dealing with dialysis and transplant for 27 years. You should see how much I talk in person.

Good luck.

[WYOAnne NKF Ambassador]

The first year is "rough!" Your body is slow to recover from the transplant surgery due to the steroids. Then your body is trying to get used to the immunosuppressants you are taking. It takes a lot of time for your body to cope with everything. I had my dose of these meds adjusted several times that first year. First my blood level of one of the drugs was too high, then it was the side effects. Finally I was on the right dose and started to feel so much better. We actually met friends in Glacier National Park, MT and did some hiking at the 10 month mark.

What meds are you on? Are you taking Prednisone? The steroids can do horrible things to your psyche. I was emotional, had anxiety, etc. I was eventually able to stop taking it.

What can I say...I would NEVER want to go back on dialysis - NOT EVER!!

If something isn't quite right you need to be your own advocate. You need to stand up for yourself and report issues and problems to your nephrologist or transplant team. You know your body better than anyone and need to tell the doctor the problems. They can't fix the problem unless you tell them. Tell them over and over... This is your body, your life!

You need to start slowly, but I found that taking a walk everyday really does help. At first just go around the block. With time you will be able to walk farther. I find that it clears my head and do feel so much better. I found that after awhile I had more energy too. It's time to get up and move.

I am 22+ years post transplant. I went back to work about 18 months after my transplant. I had a full career until I retired a couple of years ago. I am an Ambassador on this site for the NKF, a Peer Mentor, a public speaker and volunteer for my local WY Donor Alliance. I find giving back is very rewarding.

[Hidden]

I had mine in 1982 and did well at first. There were some Prednisone mood and anxiety issues that weren't ever dealt with. I had a good run until age 38 when I started having worse back pain and Nephrology ignored it and my pcp put me on vioxx and then Ultram and finally stuck with Tramadol. I was misdiagnosed with gout and put on allopurinol that mixed with Azathioprine causing multiple issues. I was hospitalized for 6 days and had 7 packs of red cells and was pissed. CVS turned off their interaction checker. It was bonus time and I printed out all their conversations about how many meds they filled per hour and per day, against the rules of the Board of Pharmacy in this state. They also wrote about faster fills with the checker off. I filed with the BOA and won. CVS went after the doctor and hospital system and had him demoted. The pharmacist took a hit to her license and CVS a hit to their store number. My red cells were dropping fast despite all the pricey specialists called in and I was put on cellcept in place of Azathioprine. My red cell were dropping fast and I knew I didn't have much longer. On my own I lowered the cellcept from 1000 milligrams to 500 then 300 before my labs improved. Today I have an unstable spine, spine fracture that won't heal, pain in my back and leg. I was sent to pain management were things got worse. I passed out in a parking lot while on morphine and busted up my right knee. Pain Management continued to fork out worse crap and finally before they were going to try one that had to be shipped in from another country, I left. Sorry for spelling and lack of specifics. I am in the car.

[Gardner-NY]

HI Bk-Tony, My spouse of many years and I feel strongly the doctors did not tell us everything that could go wrong after transplant. My spouse had his transplant due to PKD in Nov 2018 and all of 2019 was filled with low grade rejection which resolved in hospital , then low red blood count for 9 mos then before that was remedied with shots I gave him often, his white blood count plummeted and he had CMV. It took 14 months to get his first good blood lab. The biggest issue we both are frustrated about is the many medications he is on despite already going from 21 to 14 now. He was diabetic prior to transplant and handled with diet and one insulin shot at bed time. Now he's on 2 insulins and takes 4 shots a day . THe biggest issue after 3.5 yrs that is still not resolved is his not feeling like he's on chemo everyday, he feels lousy and the fatigue never went away. He can function and do the bare things inlife, but 90% of the fun stuff he had done in the past, he can't do because of the side effects of the meds and other factors happening with metabolism and how the body functions with all these drugs. His doctors all know this. We are still waiting for him to feel good for a day. Now with covid19 our isolating lifestyle we both live is ongoing. We saw his kidney transplant dr last week and he agrees we are doing everything we need to do since my husband cannot make antibodies. He was also told not to take Paxlovid 'if' he ever got covid19. If I got covid I could not come home, I'd check into a motel. i won't go on and on here, but our lives have been upside down for 3.5 yrs without a let-up. He had cancer 32 yrs ago and is in remission long ago and tells me , how he feels daily is alot like being back on chemo. The side effects of the meds he takes is the biggest issue. I wish the transplant team was more open about the negative. All we heard preached over and over was 'rejection' at any time in life. I appreciate your speaking your truth and I wish you were feeling much better, but I see you got your kidney 6 months ago and I would hope that by Nov 2022 you will be feeling alot better. Everyone's journey is not a rainbow in the sky we are learning, but the people who get that rainbow, I am happy for them.

[Bk-Tony]

I'm happy for the v ones who kick right in and start working. I'm in and out of the hospital every other week, fatigue is killing me, missing family events is hard on me. My biggest issue is that I had time before I was active on the list to start preparing with my therapist for this. I really have no coping skills for being in the hospital this much and then to top it off all the covid restrictions. I hate being isolated.