Fatigue

[peregrin]

Five years post-transplant with good numbers, yet always fatigued. Anyone else? Any insights?

[Blue-Quilter]

I'm in the same boat. Two of my brothers had transplants before I did, so I looked to them for what to expect. Both had so much more energy afterward, but I'm still waiting for the burst to come! Even tho we're siblings with the same kidney disease, we each had different medical issues preceding our transplants, as well as vastly different recovery processes. And obviously, they're males and I'm a female.I've asked my transplant team and my regular nephrologist why, and their explanations were plausible but not satisfying. Basically they said everyone is different and it's not beneficial to compare my journey to anyone else, which I already knew on some level.

My one suggestion would be to look at your labs and see if anything is wonky. I have three numbers that are never normal and a couple of others that frequently get flagged as out of the normal range. We've tweaked my meds, switched to others, and played with my fluid intake. None of it seems to matter beyond the next blood draw. It's frustrating, but I'm alive and not on dialysis. I call that a win, even if it is an ugly win!

[ShyeLoverDoctor]

Same here. However I am on cyclosproine which suppresses my production of red blood cells, so I am anemic, My hemoglobin is at 10 and they refuse to give me Epogen, even though it would raise the red cells in my body to provide my cells much needed oxygen. Pre-transplant, they would give me that medicine anytime I dropped below 11. But apparently “We don’t do it for transplant patients.” Apparently plenty of transplant patients are in the 10’s. So my numbers are NOT good sadly.

However, I attend a weekly online transplant support group and we almost all complain of fatigue. One guy does not, good for him. He even stayed at a normal weight and didn’t have the common prednisone weight gain. At my transplant evaluation, the transplant surgeon told me, “I want you to lose weight now because I put my patients on steroids and they gain 15-20 pounds.” I went home and cried. I’ve struggled with my weight my whole life.

I have come to realize I will never feel as good as I did before I got to stage 3, which is when the anemia became a problem.

Remember, we are on some serious, heavy duty drugs to keep our kidneys. That has to take a toll on your body.

Yes, I’m really sad that “huge energy” never came as I believed it would.

Any day of transplant beats being on dialysis. At least I’m not tied to a chair for four hours, I can eat what I want, and can have 58 ounces of fluid. More than that I end up with low sodium. Fluid restriction is hell.

No one who has not done dialysis, been on fluid restriction, and walked around with useless organs in their body (possibly waiting for that day to come when they get a transplant) can ever begin to understand what that feels like.( Do I even mention the fact that not one single member of my family would get tested makes me still hate them just a tiny bit? I try to let it go but still can’t forget no one would help me).

[Winner76]

Yes I feel fatigued all the time . I spent 8 years on dialysis , I use to get iron infusions and injections for low hemoglobin. Now I’m just as tired but my hemoglobin is never low. Maybe it’s the medication we have to take. I have steroid induced diabetes but perfect weight and I also got ulcerative colitis . The doctors never have any good explanations for my tiredness. But on the flip side I don’t do dialysis anymore and not all days are bad .

Good luck on your journey

[redpanda67]

Hi Peregrin,

Apologies for my long post, a consequence of working from home and a lifetime of experience with kidney disease.

Fatigue can be a complex and often frustrating part of life after a transplant, and I’ve lived on both sides of it. I've had a transplant for 20 years. I started dialysis at 21 and received my transplant at 30, which initially felt like getting a brand-new battery. But over time, my energy levels have shifted a lot, influenced by different factors, including medication changes like switching from Tac to Rapa and adjusting other meds.

In those early years, I was kept on blood pressure medication even though my blood pressure was already really low, which led to cycles of fatigue and oversleeping that ultimately worsened my health. My energy also depends heavily on my sleep quality, which has thankfully improved since I left a stressful job and grad school. My GFR and creatinine hover around 30 and 1.8, putting me in late-stage CKD, which doesn’t help with the fatigue. It can be tough seeing others seem to live a “normal” life after their transplant when I’m still struggling. My first couple of years post-transplant were rough—marked by odd hepatitis infections, unstable PTH levels, and a sensitivity to tacrolimus.

I know it may sound repetitive, but I can’t stress enough how important exercise is. It affects the body’s chemistry in profound ways, boosting hormones that are good for the brain, lowering those that promote fat storage, and helping muscles use energy more efficiently. Exercise also benefits the kidneys, heart, and vascular system by improving reactivity and lowering blood pressure and heart rate.

I loathe exercise, but I know if I don’t do it, I’ll feel tired, sluggish, and have a hard time getting off the couch or sleeping well. Exercise doesn’t have to be complicated—yoga, stretching, walking, or biking all count. I hate cardio and yoga; did i mention I hate exercise, I find it boring and hard to focus on. So, I stick to weight training with bits of cardio just to get my heart rate up. Some days, I manage only 10 minutes at a time—doing a few squats, walking in place, or wall push-ups. It helps with muscle and bone loss, which comes with many immunosuppressants, including steroids, CNIs, and mTOR inhibitors.

I hope this helps. You are not alone. It can be incredibly frustrating and sometimes even depressing because transplants are often portrayed as a magical, life-changing event where you’ll suddenly be able to do everything you couldn’t before. Unfortunately, that's not the reality, most of us fluctuate between good days, and exceptionally bad days with normal somewhere in between.

Redpanda67

[peregrin in reply to redpanda67]

Thank you. I do exercise and get a reasonable amount of sleep. What gets to me is that none of my doctors, nephrologists and others, have a solution to propose.