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JoDee, thank you for the information I'm very new to the transplant community my heart transplant was 04/04/2021. I didn't know what was going on I was agitated, couldn't stand the loud noise, My prograf was just reduced but my Transplant Team, they're requesting a repeat lab this week due to my prograf levels. My magnesium has been up and down, hand cramps on some days out of control. So with each blood draw they are also checking my magnesium levels to be adjustments. The transplant has been a success, all of my echo's has been good and my prednisone has just been reduced. Many side effects from the prednisone; my biopsies has been all good as well, my problems came from the side effects from the medications a lot of nausea and vomiting. I appreciate any advice you may have!
Replies to "JoDee, thank you for the information I'm very new to the transplant community my heart transplant..."
@karenjs Hi and Welcome to connect and Congratulations on the New Heart. Yes unfortunately in the Beginning the meds are the worst part beside general healing. Let's see it's been about 2 months now and you symptoms sound like prednisone but it can be the Immunosuppressed drugs also. The Antiviral is the one I had issues with my stomach and I found to make sure to have something in my stomach before taking. The Prednisone gave me the most issues tho with bad tasting food, my hand shakes I couldn't write the first few months without shaking and my wife really disliked my mood swings. But the good news is they do taper off to lower levels as the biopsies show no rejection. For the Valcite it too will be eliminated around 6 months or so. I had to go back on it tho when I developed CMV which is pretty common and when I went back on it they gave me an anti nausea pill to help with that issue. So hang in there and keep your team informed.to the side effects and options are available. Life will get better so hang in their. We are all hear to help so please keep in touch. Just as a pick me up im.3.5 year's post and most of the issues your having are a distant memory. I had to actually look up some.of the drug names I've been off them.so long. So by 6 months or so you'll probably forget how much of an issue you had in the early stages. I hope that helps and please ask any question you have.
If you feel comfortable can you share a bit more of why you needed a transplant? My background was due to Arrhythmias that drugs and a pacemaker could not control. any more.
Have a Blessed Day
Dana
@karenjs, I found this article that I want to share with you to let you know that you are not alone with side effects. Maybe this will give you some additional information to discuss with your doctor. Blogs>Transplant>Immunosuppression: Watching For and Managing Side Effects
https://connect.mayoclinic.org/blog/transplant/newsfeed-post/immunosuppression-watching-for-and-managing-side-effects/
I know, your last post was only 6 days ago, but I'm wondering if you are feeling any better? Give your body time to adjust, you have recently had a major surgery and are still adjusting to the new organ and your new life.
What are some things that you are looking forward to doing that you couldn't do before your heart transplant?
Connect
@karenjs, Welcome to Mayo Connect and Congratulations on your recent heart transplant. I am sorry to read that you are experiencing some difficult side effects with your meds. I am a liver and kidney recipient, and it my understanding that our bodies can sometimes take a while to adjust to these powerful drugs. (My internet is not working and I don’t know when the local outage will be repaired. Please forgive me for the hasty reply on my iPhone.)
I want to invite @danab and @estrada53 who are both heart recipients to meet you and to share their experience with you.