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The Friday before last I had my evaluation performed at Cedars-Sinai in Los Angeles. As of right now, we don’t have an answer or plan. Their selection committee meets on Fridays, and there was an international transplant conference in Orlando, this past Friday. So my case moved up a week, and they will decide this coming Friday. My exposure to their program is obviously limited. However, my experience at the hospital indicated that they are organized, thorough and knowledgeable.

One unexpected thing that was mentioned by the doctor was that there is a small chance that I will be able to wait some of the time on the waiting list here in Florida. From here there are 21  direct flights from within easy driving distance to Los Angeles daily. This will help a lot with costs associated with paying for rent and two separate households and would mean less time apart from Ashley and our animals.

According to their team, re-transplant has become slightly less risky than in the past and is close to the same risk and success rate as a first transplant, but each case provides its own risks. The key to success in mine is mostly connected to how the antibodies believed to have caused my rejection respond to treatments. Most importantly they have been able to identify an antibody that is the likely culprit, whereas in some patients they never figure this out. They believe that with how the AT1R antibody has responded to various treatments in the past, that my chances are good and that there are other treatments still available should the current and past treatments fail to control it. However, it take weeks to get results back from each test that is performed to look for this antibody. Another one of the problems and most significant factors of the evaluation was from the surgeon’s concern about past surgeries.  Scar tissue from the LVAD being placed, the transplant, the ECMO and the Balloon pump placement,  could be a limiting factor when it comes to where they put the by-pass pump for the surgery.

There are various factors that go into organ transplantation’s waiting lists. I have a mixed bag of factors that affect my wait. My blood type is a good blood type that gets several suitable hearts. However, my height is a limiting factor and past transplant are limimting factors. If I were a little bit shorter or if my first transplant had been successful I would have an easier time and shorter wait getting a heart. They are currently anticipating months on the waiting list.

The next time that I will likely hear from the transplant team at Cedars-Sinai will be Friday since they try to call the same day of their decision. If they call with approval, they will provide more information as to what status I will be listed (I would most likely be a status 4, but possibly 3 on the new system based on statuses 1 to 6) and other plans, such as when to come out and other transfer issues. If they reject me to be listed, they will tell exactly why they decided not to list me. It can range from not being sick enough to be listed, to being too ill to be able to survive another surgery.

I really appreciated that my mother was able to join me for the evaluation. Especially since they required someone to join me, but also to explore the LA area on Saturday. It proved to be an essential time for me to form some good associations with the city since I will likely have to live there for some amount of time. On Saturday, we toured Paramount Pictures, walked up to the Hollywood Walk of Fame, ate at Mel’s Diner, went to the Upright Citizens Brigade and to cap off the night, I took a selfie with the Scientology Celebrity Center. I have to admit that when I went out there, my perception was based on what I have heard from so many people that have visited or lived there. I was prepared for gridlock everywhere and rude people. Once again, it was proven to me that people are people and there are good people everywhere along with a few bad apples. Traffic didn’t seem any different than almost every other city I have traveled in. There are always problem areas and accidents that cause issues in random places. So overall, I left Los Angeles on Sunday with a lot better feelings than I went there with.

My flight landed in Jacksonville about 8:30 P.M., which gave me 11 hours to get to my scheduled heart biopsy and left heart catheterization in Orlando. It was great to be able to sleep at home and play with the critters for an evening. We were back up at 4:30 in the morning and on the road to Orlando. The heart cath went as expected. The preliminary biopsy showed no rejection at this time, and my pressures were ok. However, we received some unsettling news from the followup call to the biopsy. When my doctor met with me while receiving photopheresis a few weeks ago, he had told me that my antibodies were continuing to decrease, but he didn’t have the numbers. On the followup call to the biopsy, we asked if they had the exact numbers from the non-HLA blood work they had sent in, and it turns out they have actually been increasing, to a level that is considered to be back in the rejection level for the AT1R antibody. So we are working on clarification and the results from the non-HLA labs drawn at Cedars-Sinai.

Ashley surprised me with a plan she had come up with since we had to go to Orlando anyway. After the biopsy in Orlando, we continued on to Sarasota, where The Ringling is located. It is a museum for The Ringling Brothers Circus and artwork that John and Mable Ringling collected. Since we had learned about this museum, we have been discussing times to visit. One of the highlights to this museum was a massive train model that showed how the circus was moved from town to town, along with a scale display of the circus being set up and performed.