Mental fatigue

[MTtransplanted]

I am 4 months post transplant, having had a preemptive living donor transplant. Physically I feel great and seem to have more energy than pre-transplant. However, after working a typical 8 hour day, I am completely mentally exhausted, which didn't ever seem to be a problem pre-transplant. Has anyone else experienced this? will it eventually resolve itself so I don't come home from work feeling like the walking dead? My body isn't tired, but my mind just wants to shut down after the work day is done. I feel like I'm not giving my family the attention they need.

[drlew]

As a transplant physician, I can't comment on direct experience and am interested to hear what others say about this. With a new transplant, however, patients become in may ways their own doctors and take on a heightened level of self care. Maybe it is the still relative newness of the transplant regimen, plus what are likely concerns that all is going well, that are causing the mental fatigue. Having a transplant is a lot to manage! Prograf in particular can cause some problems with memory, but that doesn't sound like the issue here. Can you give yourself a break at the end of the day? A nap or walk to rejuvenate?

[CA_Coast]

Hi. I’m sorry you are feeling so exhausted. Have you asked your drs about it? Could very well be one of your meds.

I have a question for you, though. I will also be having a preemptive transplant in the near future. Can I ask you how you determined the “time was right”?

I still feel mostly ok, but my nephrologist thought it was about time. My egfr is between 14 and 16.

Hope you get your energy back soon.

[danielleblock in reply to CA_Coast]

Hi ! So, I am getting a preemptive transplant on July 29th. My gfr is around 12-13. That is what my doctors determined to be "the right time" . From what I've heard, best to get it at this point so you are still *fairly* healthy, but it isn't too soon either.

[CA_Coast in reply to danielleblock]

Thanks for the feedback. Because I’ve lost about 20 pounds the dr thinks my egfr is reading artificially low because I’ve probably also lost muscle mass

[Stexx in reply to CA_Coast]

Hi I had my preemptive transplant last November, and to date every thing is going well and I have very stable blood results. My eGFR went down to 11, yet I still felt remarkably well; my creatinine level was circa 450 (many are far higher). Unfortunately at levels below circa 14 some people’s kidneys just suddenly ‘give up the fight’ and this can mean going down to around 6 or less quickly. It’s therefore your teams decision really when the time is right for both, and no doubt the theatre is available.

btw my step dad donated for me with a 3/6 match so really he was the main reason to go when we did as he was just over 70 years.

Hope that’s a little help & encouragement.

[CA_Coast in reply to Stexx]

Thanks for your reply. One reason for me to move forward now is that I am 66 and not getting any younger!

[Donaldson0007]

I ma now 4 yrs post following end stage failure. Mental fatigue was an issue for me for about 2 years. Additionally, I lost my memory of the time leading up to the transplant and well after and have still yet to gain those memories back, even if i see photos of the events. For me it simply took time to push through the fatigue and this got better. The entire process leading up to, getting approved, having life saving surgery takes a huge toll. Give yourself time. Talk to your Dr and as one of the responses recommended, if you are able, take a power nap if you can - be it at work on a break, immediately after coming home, whatever works. Best of luck to you.

[Transplant314]

I am four months out from my transplant. I have some short term memory issues and am more physically tired then mentally but I believe mental or physical exhaustion are connected. My doctors question that it is related to medication. I think it is a combination of recovering from major surgery and the medications. For me mild exercise and naps have been helpful.

[WYOAnne NKF Ambassador in reply to Transplant314]

In my opinion this is still your body getting used to the transplant. Don't forget the transplant surgery was a major operation. Now you are on steroids and immunosuppressants that takes your body awhile to get accomplished too. My dose was changed several times that first year. You need to give your body time. My transplant team told me that it takes 6-8 months to get back to normal just from the surgery and then there are the meds. Believe me, it does get better! I am now 19+ years post transplant and live a wonderful, "normal" life. I worked a very stressful & rewarding full-time job for over 14 years and am now retired.

Best of luck and keep us posted!

[Dustypye]

My mental/memory issue pre-transplant were awful. I would write notes to myself and then the next day I couldn't even remember what they meant. After my transplant it took about a week and then my brain kicked into high gear for the first time in years. It was like I had super powers or something. When I finally went back to work, I did have some mental fatigue issues as well. They get better over time (I'm a year and a half out from transplant) but I still have days where it's hard to focus and names don't come to mind a quickly. It takes time I guess. But, the brain's a muscle and the more you use it, the stronger it will get. Take care of yourself, take a mental health day if you can, and keep it up. You cheated death, so, you can do this.

[MTtransplanted]

Thanks everyone for the feedback. I will be seeing my dr. in a couple weeks and will discuss with her. I just had medication changed, twice now in the past 3 weeks, so possibly that is a factor. I am also dealing with antibody rejection, so I expect there is some anxiety at play, as well. I sure do appreciate the support and concern from everyone - what a wonderful gift this is, and the added bonus of folks to share and discuss with is so great! thank you!