Preparing for a heart transplant: Would love to chat with others

I was on a bi-VAD device in the hospital for 6 months waiting for a transplant. In 2002 it was not a "small box with a battery", but a washing machine size pneumatic pump plugged into the wall with 8 foot tubes attached to me. There was always a technician in the hospital to provide support to make sure the device was functioning correctly. Not a great experience, but it kept me alive. Daily visits my lab personnel to test my blood "thinness" and pharmacists to adjust my meds.
Multiple visits a day by transplant teams to monitor my status and inspect my incisions.

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.

Hi Azdan good to see you again, How are things going down there in Tucson I seem to remember you saying you lived.
Hope all is great and I didn't realize your beginning was definitely more interesting than mine. The B I vad machine sounds basically like the by pass machine they use during Transplant. So how are things holding up? I myself just passed 4 years post and doing great. Enjoying my time volunteering at Church, Watching my Grandkids grow and getting in some golf. I actually have my youngest Son in his 2nd year of college there in Tucson at U of A. He's doing great and enjoys coming up to Florence to see the rest of my Kids.

Hi Jackie Welcome Congratulations on your upcoming 1st year Anniversary. I have to say your journey reminds me a bit of mine. When I saw you say the virus and multiple firing of my icd and leaving for Mayo to not leave until I had a New Heart has elements in my Journey, except my journey with Heart problems started with a virus that almost killed me in 2008 and that's when I needed the pacemaker/defibulator 9 years later after many firings of the ICD and multiple Ablations led me to going to Mayo in Dec of 2017 and leaving after Jan 5 with a new Heart.
But you even had double Lungs wow that's a lot at one time. What's it like to getting used to 3 new organs? But just like you from 2008 until about 2017 I kept my self pretty active and thought I was doing things right but ultimately the heart got worse so starting about Oct 2017 my EP doctor was running out of ideas and told me about transplant "after a not so successful 6th or 7th Ablation" and that he wanted to get me evaluated for a transplant just in case. Well on Thanksgiving adter that last ablation I was transferred to Mayo for the first time for an evaluation. They did attempt to send me home the 2nd week of Dec after starting the evaluation but I wasn't home 1 night and my heart was at it again.
So I called Mayo as I had been instructed and was told to go to the ER and one of the doctors will get me checked out. I never left it was one arrhythmia after another. I was getting shocked so much they saw the stress it was having on me and shut off the pacemaker IVD and if it was needed would do it manually under sedation. That was a rough Christmas. But some how with the Lord's help I survived and on Dec 28th was officially on the Transplant list at a 2. I had a toxic event on the 31st where the Amiodroine that was keeping me alive became toxic, I went into what appeared to be a stroke but later found out it was the IV. So that bumped me up on the list to 1b. Night of Jan 4th the doctor comes in and I'll tell that days story another time but with the news of a Heart becoming available.
So when it comes to having time to prepare I know what you mean. My wife tho was a trooper and as a retired LPN was a God sent to help with the process.
Luckily we live about 70 miles from Phoenix Mayo and my wife got real used to sleeping in the chair in the room with breaks to go home once-in a while. We did rent a long term type Hotel suite with stove and frig for my release dat of the 17th of Jan to be able to be up at Mayo the first few weeks and as you know for all the biopsy, blood work, exams etc so thank for sharing your journey we are in a pretty special club now.
Blessings

@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?

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