Transplant Lethargy

[ksoccer45]

Hi everyone! This is my first question and I'm so excited I found this forum of other kidney transplant recipients like myself. I was hoping you could help me: I am post transplant 19 years. My biggest issue is energy. Some days are good, some days are okay, and some other days like today, I am very lethargic, moody and just want to sleep. This is especially problematic when I have a 3 yr old to help watch and a full time job. Does anyone else experience this extreme lethargy on certain days? If so, what do you do or take to help with it? Even caffeine doesn't help me wake up or feel better. Any advice would be greatly appreciated. Thank you

-Kyle

[SN23]

Hello ksoccer45,First up, congratulations for 19 years post transplant👏🤞My son is completing one year tomorrow. So so much to learn from people like you on this forum🙏

As for lethargy others more knowlegible people can answer better but from my own limited experience I would say have you checked your vitamin d and b 12 level. At our request the transplant doctor recently checked that and found it be really low for my son and adding vitamin d and b 12 has definitely been helpful for him🤞

[ksoccer45 in reply to SN23]

Hi thank you very much. Yes I take vitamin D everyday and my number is regular. I am using vitamin b12 spray now for the past couple of weeks as well but not much difference. Thank you for the advice though. And feel free to ask me any questions you may have. I've had this transplant for quite some time haha.

[WYOAnne NKF Ambassador]

Hope you have told your nephrologist regarding this. I am 22+ years post transplant and do not suffer from lethargy. I do know, for me at least, if I sit around a lot for a couple of days it's real easy to keep doing the same. For me , I try to walk daily for 20-30 minutes. I find this helps me.In your case tell your doctor ASAP.

[ksoccer45 in reply to WYOAnne]

Thank you and congrats on your long transplant. Yes I've told my Dr plenty of times. I've also told my endocrinologist since I'm on testersterone replacement therapy. Since my blood levels are still stable and abnormal readings staying the same they basically chalk it up to be my anemia, pre diabetes, or my testosterone fluctuation. Snd of xoirse my kidney ( I have a 35% GFR, been stable at around that for years, sometimes 40%) I try and go to the gym at least a few nights a week to lift weights. I always feel best in the evening and after my workout. Mornings are the worst.

[Highgfr in reply to WYOAnne]

WOW. 22 years....that is amazing. Congratulations. Do you mind if I ask how you do with taking all the meds to keep your kidney from rejection. Are you able to tolerate them and was it hard to find the right dosages and tolerance in the beginning? Thank you SO very much for your help. 😃

[WYOAnne NKF Ambassador in reply to Highgfr]

In the beginning it was a little rough. I was in a "double blind" drug study with what is now Myfortic. I had horrible diarrhea and my transplant team was willing to work with me to reduce my med dose and hopefully help with the diarrhea. We also found out that my body does not like generics. Guess there is something a little different comparing it with name brand. This all took a couple of years to get on the right dose and discover the problem with generics. So my doctor had to send my mail order pharmacy a letter that I could only take name brand immunosuppressants. So, I take Neoral (cyclosporine) 3- 25mg tabs twice a day, and Myfortic (cellcept) 360mg twice daily.

I have no problems now taking the meds and don't have any side-effects

[Highgfr]

Wow. Bless your heart. So glad they were able to get it figured out. You are a trooper. So sorry you had to go through all that while they worked it all out. After all these years have you had any of the things they tell you about show up like cancer or infections all the time....And do you find it easy to remember to take each dose of meds every day? And what happens if you miss a dose? Thank you so much.