Please note: this begins a series of posts that I will be writing to keep a history of my transplant “journey” (if you know, you know 😉). These posts will be raw, they will be real and at times, it may be hard to read.
The Physical Therapist walked out of the room and Dr. S, my cardiomypathy/transplant doctor, slid the heavy ICU door and said, “good, now I can speak freely”. I knew this conversation was going to be different. I could tell by the tone in her voice. My eyes welled up with tears.
She continued on..she was pissed. She had gotten word from the ICU doc that I had spent the weekend and the morning arguing with her colleague that my symptoms were in fact cardiac. I was nauseous and having chest pain even on the balloon pump. Her new to being an attending colleague had never seen a case like mine. Dr. S on the other hand had seen it before. She had anticipated me continuing to have symptoms even on the balloon pump and expected her colleagues to treat those symptoms over the weekend, which they hadn’t done. She assured me she had already spoken to the ICU doctor about addressing my pain and nausea and would be dealing with her colleagues. And then she said the words that I won’t ever get out of my head.
…”Kristin, I can not send you home. If I remove that balloon pump and send you home, something catastrophic will happen and it probably wont just be another heart attack. You would likely go into cardiac arrest and probably not survive. Your heart is very sick. You know that these are your cardiac symptoms. Stop letting them doubt you. Transplant is the only option”. She answered my questions and after quite some time and a lot of tears on my part, we officially decided to list.
She saved my life.
Due to covid, the pathology/research they would normally do on my explanted heart was cut back. But I begged them (& consented) to please study it, garner as much information as they could from it and respectfully dispose of it. And they did…and it was bad…
We knew there was disease in the heart. We didnt know there was severe disease throughout the whole entire heart. It was so severe, even into the microvascular or smaller vessels.
We knew there was issues with the grafts. We didnt know the bypass grafts were damaged and they were severely narrowed where they had been connected to the vessel to create the ‘bypass’.
We knew I had a lot of caths and that they had likely affected the vessels. We didn’t know there was polymer (particles) from the catheters throughout my vessels.
We knew there was mild muscular damage from the MIs. We didn’t know was that there was multiple areas of damage due to ischemia (lack of blood flow) throughout all of my vasculature. My cardiologist explained that damage was from all the times I was symptomatic at home and likely had MIs that weren’t treated.
We could have adjusted risk factors until the cows came home. The damage was done. My heart was failing and I was very sick. I got so used to feeling bad, it became my normal. Even I didn’t know how bad it was.
Two weeks after my transplant, they put it all into words again: “it was the worst heart we have ever seen. It was actually impressive how bad it was. You had at max 1-3 months to live before that heart gave out.”
Had we done either of the other procedures (CTO Cath/Re-do Bypass), we would have likely had the same outcome. A very sick heart or a catastrophic ending. All those roadblocks we kept encountering? Those procedures wouldn’t have saved or even likely pro-longed my life.
Had I not been admitted that Friday in early September, I wouldn’t have been quickly worked up for a heart. It would have taken 2-3 months doing a bunch of outpatient testing. The same time frame they estimated I had left on my old heart.
Had I not had such fluid issues, my general cardiologist would have never pushed to bring in the cardiomypathy team to manage my case. And transplant wouldn’t have even been on the table as an option yet.
I’ve looked death in eye multiple times and by Gods grace and smart doctors, my life has been saved over the last 5 years. But to be that close and to hear how sick I really was, that was like a punch to the gut that took the wind out of you.
What does that do to you? In one breath, you question God and why it had to play out this way and in the next breath see the providence in His timing. I spent a lot of 2020 begging God to show up and being really angry about the constant suffering.
While I rejoice and am grateful for this transplant, it does not wash away all the pain and trauma of the last 5 years. I still picture myself sitting with Jesus on a bench with a cup of coffee asking him “what the hell?”. And I’ll wrestle with that for the time to come.
Transplant tests your will, endurance, strength and stamina. While we have been blessed during this recovery so far (and hopefully in the months to come!) it is hard work. I literally spend 90% of my day, either dealing with 4x/day meds, calling about appts, reporting in to the transplant team, fighting with insurance companies, getting my steps in, etc. It’s a gift, but transplant comes with its own set of challenges. Fellow recipients will warn you of that, but until you live it, you don’t fully get it. Transplant is not a cure, it’s a treatment option.
One thing my cardiologist of the past 3 years always instilled was Hope even in the hardest moments. I didn’t always trust God or the doctors, but I had hope that in the end, God would work healing in my life. He just did it a little differently than I expected…
#hopewins
#becauseofjesusandadonor
Victory of the heart 