New Transplant Blog Posts

@glengelmd1, Thank you and God Bless for what you are doing. Your desire to donate to your son, is without a doubt the most beautiful expression of love. I am a liver/kidney recipient and I have a son near the age of your son, so I can feel a connection to what you are going thru.

If you have not done so, I encourage you to take a look at the transplant discussion that were shared in a post to you yesterday.

I am currently waiting to hear from a friend of mine whether he will qualify to for screening to be a living donor for someone he knows. I send my hopes and thoughts to you and to your son. Keep in touch.

Hello all - Tomorrow 5/23 will be 2 years post kidney transplant. I have been trying to find others that have gone through this. Is anyone out there having a hard time on the Immuno suppressant medicine? Is this normal. I realize everybody’s different. I’ve had to change my meds four or five different times now. Any suggestions would be helpful.

That’s wonderful. Does your sister have any complaints from the medication she has to take. My husband was my donor.

@missdi Welcome to Mayo Connect! We are a communty of patients/famiy members/caregivers who share common experiences in our health journeys. We are not medical drs, and will not diagnose.

That said, as you mentioned, each person is different. My husband was transplanted almost 5 years ago, from a deceased donor. His immuno supressant meds have changed a few times. He continues to have labwork pulled every three months. It is my understanding it is not unusual to modify doses from time to time.

What is your concern about changing medications or doses?
Ginger

@gingerw I wanted to know if others that had a transplant suffer from bad side effects from meds. I don’t know anyone that has gone through it.

Hi @missdi! I received my new heart 4 years ago and have had several changes to my meds. I was taken off of tacrolimus due to its negative effects on my kidney output. It also made my hair fall out! I hated that. I was placed on sirolimus which seems to be less toxic to my body with no real bad effects. I take prednisone every day and will do so probably for the rest of my life due to an underlying sarcoidosis illness that caused my heart failure. The prednisone has given me chipmunk cheeks that I can't get rid of and can make me edgy. I don't take many other drugs - I've been fortunate that way. I hope this helps. Take care.

Hi @estrada53 Thats wonderful. Nice to know the side effects are minimal with you now. I only took prednisone for a couple months after surgery. Don’t worry about the chipmunk cheeks.....I’d take that any day. Dr’s have changed my meds a few times already. I’ve had different side effects with each one. The first two medications I thought were really bad but I’ve traded them for feet swelling, body cramping, inflamed gums, severe magnesium deficiency (which about twice a month I go for magnesium infusions). I also get weekly labs. I have a video visit on Tuesday with my Dr. She just put me on Cyclosporine a month ago. So will see how it goes. Thank you for your comment. It does help.

@missdi Please return and let us know what your dr says. It is a good thing to keep notes of your side effects, so your team can see what is happening. When we have additional health issues, that can interfere at times with medication we take for something else.
Ginger

@gingerw I will inform tomorrow. The first year, on Prograf then on Mycophenolate gave me severe diarrhea. But on the Envarsus XR and cyclosporine I have other side effects. I know all meds have side effects, but these are bad ones. Hoping someone out there has minimal side effects. There was a bookkeeper I worked with years ago who had 2 kidney transplants since she was 14. The first one lasted 30 years and the second is still going strong. That was in 2015. She didn’t say anything about any problems. I didn’t think to ask.

@missdi, I want to add my Welcome to Mayo Connect. Happy belated transplant anniversary!
I am a liver and kidney recipient. I am still taking Tacrolimus and Mycophenolate after 12 years and have not had any side effects like you, and some other members, have had. However, I know that you are not alone, because other members have been sharing their uncomfortable side effects.
Here is where you can join in their conversations or just read what others are saying. If you add their @name, you can direct a question to a particular individual.
Transplant Discussion - Transplant anti-rejection medications. What's your advice?
https://connect.mayoclinic.org/discussion/your-anti-rejection-medications/

Transplant Discussion - Tremors post kidney transplant
https://connect.mayoclinic.org/discussion/tremors-post-kidney-transplant/

Transplant Newsfeed Blog: Immunosuppression: Watching For and Managing Side Effects
https://connect.mayoclinic.org/blog/transplant/newsfeed-post/immunosuppression-watching-for-and-managing-side-effects/

I do hope that you will find some comfort after you speak with your transplant team.

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