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