Various people wonder what people do when they are waiting for a heart or any organ. The crazy thing about heart transplants is donors have to die in order for you to get the organ. I was not necessarily waiting for a heart transplant, because I had the LVAD (Left Ventricular Assist Device) and the surgeon told us it would take 2 years since I was doing good with it.
Before I was on the heart transplant list
I was not put on the heart transplant list until almost a year after the LVAD because I suffered a stroke beforehand. The doctors want you to be in tip-top shape so that you can handle the recovery after heart transplant surgery. For me, cardiac rehab had to be completed in order for me to be considered for the heart transplant list.
As a part of the heart transplant checklist we also had to speak to the surgeon that would be doing the transplant. The surgeon spoke with us and told us about the procedure and everything that it entailed. He said that he knows they cannot give a real timeframe on when I would get a heart, but could he give us an estimate?
That’s when he told us that it would probably take 2 to 3 years for me to get a heart. I was not too concerned because I had settled into having the LVAD and honestly a heart was not on my mind. The reason behind this is because I had 2 friends with the LVAD and it had been 5 years for both of them, and they were still waiting for a heart at the time.
Waiting for a heart after accepting my advanced heart failure diagnosis
Having the LVAD is definitely an adjustment and it took me a long time to finally accept that I was in advanced heart failure. I had just decided to live my life with a heart, or with the LVAD, and just be happy that I was still alive. For many of us heart disease patients, it is not an easy thing to do. It's much easier said than done. I kept telling myself that I would be waiting a long time for a heart and to just get used to being on the LVAD for the time being. This is where I learned to live in the moments and realized that no matter what was going on to remember to live each day to the fullest.
We planned my first international trip to Toronto, Canada, and I was excited to go there. We had to call the hospital in Toronto to make sure they had a hospital that could service my LVAD in case of emergency. This part of the trip was very important because if something went wrong with my LVAD the hospital had to have an LVAD clinic in order to be able to tell what was wrong. The type of LVAD matters too, they have different generations of the heart mate and the heart ware. I had the heart mate 3 which had not been around a long time, so it was imperative that we found the right hospital. After we found a hospital we had to tell the team here where we lived.
When the time came for our trip I could not find my passport so we ended up not going after all. Which, was a major blow for my mom and me. That was in November of 2019, and by December I was put on a heart transplant list. I was living for the moments, even forgetting that I was on a list for a heart.
My wait was over
On February 1, 2020, they called me and said they had a heart for me. A total shock because they told me it would probably take 2-3 years. I realize that this is just my journey and I was fortunate to get a heart quickly, but that it does not happen to everyone. For me, it was more of a period of rediscovering life and myself because I was lost after suffering a 2nd stroke and being diagnosed with advanced heart failure. I had to get my life back on track in order to live independently again. That also does not mean it was any easier to wait, I had ups and downs, but there were good days that outweighed the bad.
My suggestions for others
For those of you who are waiting for heart, find something that you enjoy that takes your mind off the fact that you are waiting. For me, that was doing and completing 1000-piece puzzles. I was even a part of the puzzle club where they would send me 2 puzzles of my choice. Puzzles are not everyone's cup of tea but find something that you enjoy.
I know that I have said this in previous posts, but thinking positively and having a great outlook never hurt anyone. And last but not least, you can start writing a journal so when you do get your heart, you can look back and smile at how far you have come.
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