Recovery from transplant

[Tankjsl]

I am 4 1/2 months post transplant. For those of you that have had a transplant for a while at what point did you feel like you have fully recovered from the surgery? I feel very good but am fatigued most days. I don’t quite have the energy back that I once had. Just curious what has been the experience of others in their recovery.

[josie120]

I had to take post transplant recovery one day at a time to keep from getting frustrated that I wasn’t feeling good yet. Setbacks felt huge and demoralizing at the time (bad reaction to antibiotic, gi side effects of meds, mild rejection scare, etc). I felt it wasn’t accepted to say that I was struggling post transplant so my standard answer to being asked how I was doing was “ a little better every day” which was mostly true.

One day I realized that I felt 2000x better. That happened around 2 years post transplant.

You will get there too!

[Winner76]

Hi,

Congratulations on your transplant. All the new meds could have you fatigued so give it a couple more months and don’t be afraid to mention it to your team , your meds might need a little adjustment. Give yourself time , don’t push yourself too much it’s still early days. But you will feel better and then enjoy it. Remember a transplant is a treatment not a cure .

Best wishes

Tina

[Seanthesheep]

Hi Tankjsl. Hope you are well. I am 72 years old and 3 years post transplant. For me things improved quickly and I am still well with good bloods. The tiredness comes with the medication for many of us. I still feel tired but I motivate myself to get active and it quickly wears off. Good luck . Sean

[DexterLab]

I am 69 and 4 years post transplant. I have settled into a groove on my meds and exercise and am doing pretty ok. It took until 6 months or so to get down to my long term dosages on meds, as they start us at a higher level right after transplant and work down if all is going well. Plus it is a major operation and full recovery from that can take time. Congratulations on your new kidney.

[LavenderRabbit]

Recovery from the surgery takes about six weeks, but recovery from kidney disease is something else. It takes a long time to get all those toxins out of your body. My doctor told me it would take about 18 months to get it out. It happens so slowly that one day you just realize, “I feel pretty normal”.

Now, when I said, “recover from kidney disease”, I meant from the effects of it. We still have kidney disease.

Congratulations and good luck, you will get there.

[Camppy3]

I was feeling more like doing things and having the energy when I was at 1yr. past. Also my fogginess has pretty much went away. I still occasionally get a day I am tired, but not like before. You'll get there.

[Jamok]

Hi, I am just ahead of you at 5 and 1/2 months post transplant. It is definitely a slow process. Sure, you hear the one off when someone says at six weeks out they felt amazing and could climb five flights of stairs, but I think for the majority, it takes time. I’m learning to go at my own pace. The last few weeks I’m feeling noticeably stronger and more energetic every day, and there are hints of my old pre-kidney failure self shining through. And, like others have said, I think it does take time for our bodies to heal from the actual lack of kidney function, including anemia, and getting rid of toxins. Glad to hear everything else is going well and congratulations on your transplant!

[sugabear]

did you receive a live or deceased donor kidney? That can impact recovery, too.

[Tankjsl in reply to sugabear]

I received a living kidney….. my donor was a close personal friend

[LeslieK]

I’m almost 4 months post op. Great question and some good responses I enjoyed reading.

I feel what you’re saying.

[Cabrilla]

I'm still pre-transplant. I was supposed to go active again this week but for some reason they haven't put me back on the list. I was inactive for most of this year because I had to get a hysterectomy to make room in my pelvis, then sepsis from my PD catheter in March, followed by a ruptured cranial aneurysm in April, and a blood clot in May. In the last 10 years I also had brain surgery for clipping cranial aneurysms and a major vehicle accident that caused a major concussion. What can I tell you about recovery?

It's hard and so gradual that you can't tell from one day to the next that you are getting better. For most major surgeries or injuries, you are mostly "healed" at 6 weeks but scars and swelling from surgery don't totally go away for 3-6 months. And "feeling yourself again" really can take 12-24 months. When you have a surgery or injury you lose muscle mass and endurance and it can be a long slow recovery to get your conditioning back, so you are back in a place where exercise is tiring but you have to do it to get back to your pre-surgery self.

In a recent conversation with my hematologist I shared that I felt really happy to be alive after the cranial aneurysm rupture but at 2 months after I was seriously depressed. She said that she sees this a lot in her oncology patients, you feel a big boost when you get through a major procedure but a couple months after you have to go through some grieving and then you might feel pretty low for a while. When I realized how depressed I was, I also noticed that I had stopped doing my coping mechanisms: talking to friends, going outside for exercise, focusing on my kids. So, I started to schedule some hanging out time and I won't say I feel totally better, but I keep having weeks where I think "I wasn't as tired as I expected to be." I'm going to try to start training to run a 3k this month!

I also want to say thanks to those who shared, I'm having a lot of anxiety about what will recovery from transplant be like and your kind answers give me hope!

[Seanthesheep in reply to Cabrilla]

Hi Cabrilla. What a journey you have been on. Your story is an inspiration. Good luck with that transplant. Best wishes. Sean

[JackN]

I had my transplant at age 50 and my dialysis experience was luckily uneventful so I felt fairly recovered in a few weeks. But after that I realized that I still had to stop and rest walking in a mall after about four stores or so but that gradually improved. It's different for everyone; I probably recovered faster because I was relatively young and with no comorbidities (I had PKD and fortunately no brain aneurysms).

I did a lot walking at gradually increasing distances soon after my surgery -- sometimes exercise can improve fatigue.

[Darlenia]

Hubby had a transplant at the same age you are now. He's a little over two years beyond that now. Hubby says things didn't really normalize until 6 months out. The frequent visits, the blood tests, the "not knowing", and so on really wore on him. At the 6 month point, things began to stabilize in all areas. He noted that he had some complications (a-fib, ureter leak) following his transplant, as many seniors often do, and those things slow older folks down too. As his spouse, I've noticed that he didn't really get back to the days when he worked at his desk around the clock and walked two miles daily with me. I agree with Winner76 (see above) who said it well - a transplant is a treatment. Having our own well-functioning organs is always best. But my hubby is definitely a lot better now than he was on dialysis - we're about to celebrate his 74th birthday this month! So give yourself grace and space to recuperate - you're still very early in the process. Remember, too, that your transplant team is more than willing to listen to you - don't let "gratefulness" keep you quiet. Bring it up to them, they want the best for you! I suspect you'll find yourself in a much better place after a year has gone by.

[Jayhawker]

Thanks so very much for this post! The responses have been exactly what I needed to hear right now!

I’m 9 1/2 months post transplant. 70 year old woman. Preemptive transplant (transplant before dialysis). Deceased donor kidney

So how has it been and how am I doing?

The surgery couldn't have gone better. Cindy, the name I’ve given my new kidney in honor of my friend who talked me into being evaluated for a transplant, began working immediately. She has worked very well consistently. Today my creatinine ranges from .88 to .94 giving me eGFR of 68-70. Incredible! My electrolytes are in normal range. The pre transplant anemia is essentially gone with hemoglobin ranging from 11.8 (slightly low) to 12.2 (normal).

So I should be feeling pretty good. Unfortunately that’s not yet the case.

I developed dangerously low white blood cell count (1.43) in early February. We’ve been battling this ever since. I’ve had numerous Neupogen injects to elevate my WBC count. Unfortunately I have some pretty severe muscle-skeletal pain when I get these injections. But I was still hanging on with a fairly upbeat mindset through April in-spite of these injections.

I was a CMV- recipient who received a CMV+ donor kidney placing me in the highest risk group for CMV as well as CMV recurrence following the initial round of CMV. That paired with my extremely low WBC count made me the perfect host organism for CMV. When I was pulled off Valcyte, CMV began replicating in my body.

I had my first bout with CMV in late June. They put me back on Valcyte at a very high dose (1800mg daily) to pull the CMV down. My body does not do well on Valcyte even at lower doses. So I was miserable. And I’m dealing with this living alone… 😑

Four weeks after they got the first bout with CMV in check (viral load <35), it was back again. That was 2 1/2 weeks ago. I’m back on high dose Valcyte again, thus I’m up all night unable to sleep which is one of the side effects I’m experiencing with Valcyte. I won’t go into the lengthy list…

My WBC count came in at 3.95 3 weeks ago. Normal at the lab is 4.0 to 11.0. I was thrilled. The next eeek it came in at 4.58. I was euphoric. (Notice any mood swings?) Then it dropped back down to 3.65 the week the CMV was back.

Labs this past Thursday reported WBC count of 5.67! This is without Neupogen injections. My last injection was July 29, 2023. This is also with CMV which lowers WBC and Valcyte which lowers WBC. I was expecting to see even lower WVC count this week. Consequently, I was gearing up to endure more self-administrations of Neupogen. Clearly that won’t be happening as I’d expected. So, I’m guardedly optimistic that my body may finally have figured out how to generate WBCs on its own. The nephrologist said that this would happen; that my body had to figure out how to work around the anti-rejection meds…

Of course I’m still on Valcyte and will be on it at least a week after my CMV data is where they want it. The CMV lab data isn’t back yet.

I do expect that I will feel much better when off Valcyte as was the case after my first bout with CMV. However, I’m exhausted. I’m beyond tired of the weekly labs and doctor appointments . I’m still working full time. I’ll retire in July 2024. And emotionally I’m not even close to my normal self. Some of that is a side effect of Valcyte, but certainly not all. Physically it has been one step forward and two steps back since last May. I’m looking forward to turning the corner on all of this. I hope my body now recognizes CMV. With sufficient WBCs it should be able to keep the CMV in check; at least that’s my hope.

Through all of this Cindy has worked like a trooper. So if my WBCs stay up in the low normal range where they want them and they get a plan in place to keep this CMV in check, I should feel much better. That will likely not be reality until I’m 12 months or more out. I realize that will be anywhere from 2 to 8 months from now.

Jayhawker

[Jayhawker in reply to Jayhawker]

My WBC data posted earlier today. It came in at <35, the target my nephrologist has set for it. I’m not sure how long she’ll keep me on Valcyte at this point. It may be slightly longer than she did with my first CMV bout. I’m hoping not. But it’s a holiday weekend so I won’t hear from them until Tuesday. Nevertheless, I’m glad to know that it’s down. I also know that this data has been different than that from my first round with CMV. My WBC never elevated during that round as it did this time without Neupogen. Plus my WBC count data hasn’t been in the normal range since late last January.

Maybe, just maybe, this means I’m nearing the later stages of dealing with all of this. 🙏

Jayhawker

[6V53]

I am 11 months post transplant. I think I am fully recovered from the surgery except for rebuilding strength in the abdominal wall around the surgery site. I still feel it a little bit when I do sit-ups. I have some stuff crop up over the last year, like a CMV infection. I chalk these up to life as a transplant recipient and not really post op issues. The first 4 or 5 months I definitely knew I was not fully recovered from surgery. Between then and now, I have improved, had set backs, etc but I haven’t really noticed issues that I thought I could reasonably tie to surgery. I can’t tell you exactly when the change happened, but it was gradual between months 5 and 11.

[BabyTee]

I'm a 51-year-old female & just over 15 months post-kidney-pancreas transplant. I also have not been hospitalized or had infections post-transplant.

For me I'd say about 11 months, but that is also when they lowered the tacrolimus level range. Like 6V53, it was gradual between 5 and 11 months. Docs told me that since I had had kidney disease and Type 1 diabetes for so long, 18 years and 40 years, respectively, it would take a minimum of 2 years to feel normal. I was also quite sick for about 10 years pre-transplant. Dialysis made me really sick. I didn't realize how sick I had been until about a week after my transplant.

I think it depends on how long you've been sick, how sick you were, as well as age, your unique body, the health of your donor organ(s), and how healthy your current lifestyle/diet is.

Keep your head up and try to be patient with your progress.

I found a YouTube channel (Petra Genco) I like for when the weather isn't nice enough to walk. They are walking in place workouts for 3-20 minutes. (depending on the video), if you are interested. If I can't get out to walk, she lifts my spirits. Sometimes I do it twice per day.

[LibraEmpath]

Personally, I’ve had two separate kidney transplants. It took me about 6 months post transplant to feel “normal”. I wasn’t classified “stable” until 4 years post transplant. That’s my personal experience.

[Parkerbarker]

Well the first year sucks no lie.Alot of one step forward 2 backs which they really dont explain.I'm 13 months post and finally after 3 setbacks with diseases and med adjustments and changes,finally feel energectic again.Like i havent felt in years!