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Preparing for a heart transplant: Would love to chat with others
Transplants | Last Active: May 28, 2022 | Replies (47)Comment receiving replies
@danab, Dana, You have perfect timing! Thank you for bringing this discussion about Preparing for a heart transplant to the forefront of transplant discussions!
Recently I had short conversation with a woman whose relative needed a heart transplant. She was confused and worried, and did not know many details about what might lie ahead. She began to question me about my pre transplant experience. I told her about my experience as a liver/kidney recipient, but wished that I had more to offer from the perspective of a heart transplant experience. She also had questions about a "little box and battery thing" that the relative had.
I probably won't see this person again, but I began to think that there are many others like her (and me) who don't know what is is like to be a heart transplant patient.
I would like to invite, past, present, and new members to share your experiences as recipients and also caregivers in this discussion about "Preparing for a heart transplant" as a way to support and to help others along their own heart transplant journey.
Here some questions to consider: What was your first indication that something might be wrong?
Did your condition come on suddenly, or was it gradual over time? What symptoms did you experience? Were there any optional treatments prior to transplant?
What would have helped you to be better prepared for your own transplant?
@azdan99, @estrada53, @cburch, @scottij, @jackiez - What would you like to add?
Replies to "@danab, Dana, You have perfect timing! Thank you for bringing this discussion about Preparing for a..."
Rosemary @rosemarya kindly suggested I re-post this question here to reach more heart transplant recipients. (I initially posted in the general "Transplant" thread)...
I'm approaching my 4yr heart transplant anniversary at the end of July. I've had chronic antibody-mediated rejection (AMR) most of that time, necessitating extra treatments. I'm incredibly grateful and so pleased to still be here, yet it's been a struggle as well, especially because I'm very sensitive to meds and experience a lot of side effects.
I'd like to connect with others who have had or currently have AMR. I'm just beginning to accept that this will most likely be something that stays with me over time.
Also, my doctor is going to switch my meds from the calcineurin inhibitor, Cyclosporine (which seems to be causing significant neuropathy and neuro issues) to Belatacept, a monoclonal antibody monthly infusion.
Apparently, it's been used for years in kidney recipients and more recently in heart. Would love to hear anyone's experience if they have taken belatacept.
Thank you for anything you care to share!
~Nancy
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Hi - I had a heart/double lung transplant in April after a very short time of being on the transplant list. However, I had restrictive cardiomyopathy, chronic Afib and pulmonary hypertension for many, many years. This had been managed at Mayo via the Congenital Heart Group with meds, a pacemaker and eventually an ICD as well as living a healthy lifestyle (very active, eat right, sleep, etc). The year or so before my transplant I had a virus (not Covid) that about killed me and my ICD fired 6 times one evening. I went to Mayo and was admitted and so began my journey towards transplant. I had very little time to prepare for transplant as I was fortunate to get organs pretty quickly. This was probably a good thing because I did not have time to dwell on it and over think/analyze. Yet it was enough time to procure a short term apartment rental in Rochester for my family as well as set up online automatic bill pays, share passwords with my husband, etc. I would be happy to answer any specific questions.