Energy after transplant

[Bolingo]

Hello everyone, I had my transplant in March 2021 (3 months ago) and my brother was my donor, and experienced great energy levels for the first two months, now am in my third month and don't feel just as great. Also, I feel dizziness, general body shakiness & tremors, gas/ulcer. I'm a little worried and my creatinine level has not dropped below 1.8 since transplant. What do you think? I need advises

[Ladybug_05]

Hi Bolingo!

I also experienced these symptoms around the 3 month mark post transplant; it is completely normal! What medication are you taking for immunosuppression? I currently take Tacrolimus/prograf, Azathioprine, and prednisone. Tac can cause tremors as a side effect, and typically they lessen or go away completely once you reach your maintenance dose at 6-8 months. This didn't happen for me of course(I'm on something for it), but it's the the typical timeline. Are you drinking 2 liters of fluids per day (80 oz, 40 of which is water)? If not that can contribute to elevated creatine, but definitely bring up your concerns to your team! I'm now 2.5 years post. Good luck!

[WYOAnne NKF Ambassador]

First, the tremors are pretty normal . Your body is getting used to your immunosuppressants. Are you taking BP medicine? They could also be to blame for the shakiness.The important thing is for you to be reporting this to your transplant team. My immunosuppressant meds, the dose was lowered twice for me. I also had bouts of diarrhea and the lowered dose also helped with that

It takes about 5-6 months for your body to adjust - at least it did for me. 8 months out I was doing much better.

Make sure you drink plenty of water also. If you are dehydrated it can affect your creatinine.

This October I will be 22 years post transplant. Best of luck!

[Eyak1971]

Before my transplant I attended several hospital sponsored workshops for pre transplant and transplant patients. During one workshop a post transplant success story was shared. He emphasized how poor he was feeling before the transplant and the high he felt after the transplant. His was also a living donor who also shared at the workshop. The living donor experienced the opposite because he was experiencing a major surgery but he was glad he could help someone. The long story short. It makes a difference how you start to determine how you react. I would have to agree with others medication is going to make your body a little abnormal for a while. Question your doctor as to side affects of medication as to what is normal. As others have emphasized hydrate yourself particularly in warm weather. Look for signs of dehydration - yellow urine and white tongue. I had to force myself to drink more water and less tea. Take care and enjoy your new journey.

[LavenderRabbit]

Same thing happened to me.

Here is what happened to me and I suspect happened to you.

During surgery I was pumped full of Immunosuppressants. I was told that I was given 500 mg of prednisone and equivalent high doses of prograf and bella.

That’s a lot of prednisone! That’s why I felt great for the first 2 months, after I got over the surgery. Then it wore off. All my stiffness and joint pain came back. Now I have to wait until my new kidney can get all the toxins out of my body. My Doctor said it could take up to a year.

By the way, I had my surgery in March as well.

[Gardner-NY]

What you describe mostly sounds like my spouse 2months post transplant (late nov 2018) and felt great the first 2 months and then did not starting the next month, month 3 post. he was on alot more prednisone the first 2 months . He is now 2 yrs 6 months post and has the tremors of this entire body all the time due to Tacrolimus drug and fatigue. He does all the drinking of water which for the first 6 mos his sleep was horrible, little or no "rim" sleep/deep sleep due to up all night all the time to urinate. Finally his doctors told him to drink less in the night, but before that statement they had him drinking alot of water 24/7.His Creatinine is always 1.8 to 2.1 now. Everyone is different. I have not met anyone yet to tell me they feel fatigue all the time post transplant after 2.5 yrs. My spouse also has a genetic tremor that his mom had anyways and the Tac med just made it worse and even his surgeon took note to this. I wish you all the best and it will take 'time' for your body to feel its own normal and stay in touch with your transplant doctors. They know you the best.