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Today is decision day for Cedars-Sinai’s selection committee, and I am still deciding how to feel about them deciding. My large part of my personality wants them to have the decision a week away, always. This transplant listing is the fourth time that I have gone through an evaluation and waited on a call with the decision. I can say, it’s just different every time, never really easier or more difficult overall.

The first time was within weeks of when I first found out I had a heart condition. I was in Utah and denial of the severity of the situation. In the days before I went into the Emergency Room, I was working on renovating my house, worked full days of work, went to meetings in the evening, with just a few symptoms making me feel “not great.” There was no way, in my mind, that I could be in end-stage heart failure. Immediately in the ER, they gave me diuretics, so I had gotten rid of gallons of retained fluid and felt like a new person for that reason alone. So there was this ability to distance the whole situation away from myself in my mind. There were points that I truly believed that I was days away from leaving and going home, despite being alive from inotropes and other IV medicine.

In Utah, they had me participate me in a study that added to the plausible deniability of my situation. They talked very favorably about the potential to recover my heart using an LVAD (Left Ventricular Assist Device) and a concoction of heart meds. It was a requirement to be listed for transplant, but I would go on as inactive, so there was no chance that I would get “the call.”  I “knew” my life would be different, and this was serious, but it didn’t hit home as it did in future listings.

The second time I have gone through this process was at Mayo Clinic in Jacksonville. After I had gotten the LVAD and gone through the recovery process in Utah, I needed to go somewhere, since I didn’t have family or support close in Salt Lake City. Montana doesn’t have a transplant center or an advanced heart failure center that could handle my case. So, I moved straight from SLC to St. Augustine to live with Ashley, at that time only months into our engagement. She had started the process to transfer my care to Mayo while I was in Utah. Since I was still part of the study, I would stay listed in Salt Lake and use Mayo as the primary center where I went for care. A few months after living in Florida and flying back to Utah for checks, it is evident that my heart was not recovering. The dreams of removing, or explanting, the LVAD and keeping my native heart was gone. That is when I had to go through the cantankerous process of getting listed at Mayo. The process took a long time, with only a couple of tests or appointments on any given day.

At that time, I was doing stellar on my LVAD, finding workarounds for the limitations, I felt great, so there was no urgency to do anything different. With only being in my early 30’s and working the average numbers of how long everything lasted … an LVAD lasts around 8-10 years, a heart around 12 years on average, maybe get a second transplant for another 12 years, so another 34 years. I could live close to an average life with those numbers. So I opted to stay on “Status 7” which was inactive at the time.

In the summer of 2016, I ended up sick. One day the whole story will be a whole separate post, but I ended up with sepsis and a pocket of fluid next to the heart pump. Doctors assumed that the LVAD was infected and it needed to be removed as soon as possible. My heart function was not strong enough to work on its own, so all of a sudden, I needed a heart. Because of the circumstances leading up to and during my sepsis ordeal, we needed to part ways with Mayo Clinic. One of the doctors that wanted better for me told me that Florida Hospital in Orlando was the best center in the area.

So, there we were in Orlando, getting evaluated for the third time. This time everything was very real. The doctors were telling me I needed to get this transplant and I didn’t have a safe place to get it. Florida Hospital’s evaluation process was a little more organized than Mayo’s but still took a very long time, due to a couple of tests that needed to be scheduled separately and the transfer of records. It became apparent that hospitals don’t trust each other’s test results since so many tests were required to be repeated. But after months after the initial call to start the process, I ended up getting listed. So many people ask how long I was on the list before I got the call and honestly, I don’t know the exact days. I can say that it was less than a week. With the LVAD, I had 30 days of time in which they bump you to the top of the list. I was listed for a couple of days on the lower status before they put in for me to use my time for the top of the list. I hadn’t even been notified that I had been put at 1A (the highest status at the time) and I got the call.

In the meantime, we have decided that we will contact other hospitals to review my case and get some different opinions. I started researching the best centers in the country for cardiology and transplant cardiology.  Last week I contacted Cleveland Clinic and the University of Washington about my case, specifically do they think there is any chance of recovering the heart I currently have. I am still waiting to hear anything back from Cleveland Clinic. The University of Washington has been very prompt and helpful about staying in touch, but it’s very early in the process. As of now, they are still collecting records. One of the resources I used is the Scientific Registry of Transplant Recipients, and according to those numbers, UW does a large number of transplants, which is recommended for high-risk transplants like mine and they have some of the best survival numbers among the high volume transplant centers. So, what I am getting at, is that Seattle is another possibility. First as another opinion to see if my heart is recoverable. Second, I can be dual listed so it would be another option if things got worse to be listed in more than one place. And finally, today it is providing me a backstop mentally that there are always more options while I wait for this call from Cedars-Sinai.