Friday afternoon I received the call from Cedars-Sinai Hospital. As the title of this blog states, they did reject me, but it’s for a big reason that is better than I was hoping. The team has reasons to believe at this point that my heart is still recovering. So as of now, they are working with my transplant team here, in Florida, on further testing. Right now they are ordering a cardiac MRI. This will show how much fibrosis, or scarring, is present on the heart. Hopefully, the rejection has not left too much scar tissue, we will pursue recovery of the heart I currently have. If there is too much scar tissue, we will move forward with being listed for transplant.
This news was all but unexpected and extremely welcome. My team in Orlando had told me that to their knowledge my heart was no longer recoverable. Even though Cedars-Sinai had said that they reject patients because they feel they are not sick enough for a transplant, I felt that if I entertained that thought as a possibility, I would be distraught when I was listed. This heart still may not be recoverable, but I can’t put a price on even a few more days of hope.
No matter the decision of the team at Cedars-Sinai, the timing was great, since my friend I had not seen in years arrived Friday afternoon. If the decision from the selection committee was good news, I could enjoy the weekend with Corey knowing that things were on the right path. If they had called with bad news, I could distract my mind over the weekend, when I couldn’t change anything anyway.
He was initially supposed to fly in on Thursday, but a historic blizzard last week bumped his flight one d
ay. With his stay shortened to 40 hours, we squeezed as much as possible into the weekend. On the way back, we stopped at “The Worlds Most Famous Beach” Daytona Beach and drove up A1A Scenic and Historic Coastal Byway. We met up with Ashley and went for a walk downtown. Saturday, we toured the Castillo de San Marcos, the St. Augustine Lighthouse, enjoyed some improv, capped off the evening with dinner downtown and shared as many stories to catch up as possible throughout.
Words are never enough to describe how much it means to me to have friends take the time, money, and traveling troubles to make the trip to visit. Close to the top of the list of really crappy things about our situation is travel limitations. By this far post-transplant, travel limitations were supposed to be minimal. When Ashley and I were looking at relocating, we thought we would have more resources in every way to travel more and therefore see our friends and family more. Since I got sick and all of the complications, we have been limited to where, when and how often we can travel. With moving across the country, most of our family and longtime friends are hundreds or thousands of miles away and with the stress of these trying times, it’s lonely.
Also in exciting news, Israeli scientists have unveiled a breakthrough in 3-D printed hearts this week. There have been 3-D printed hearts in the past, but these hearts are by far the most advanced to date. Though they are not useable, especially in a human, it is a significant advancement in heart failure treatments. The heart produced at Tel Aviv University is about the size of a rabbit’s and has actual cells and blood vessels. It is produced by taking a tissue biopsy from a patient, using collagen, glycoproteins and various other molecules a hydrogel printing “ink” is created. This ink is mixed with stem cells to print a new heart, or even a patch for a damaged heart.
This is a game changer on two signficant fronts; the transplant waiting list and a patient’s immune response. As of the time of writing this 113,701 are waiting for a transplant of any type (3,408 of those are waiting for a heart). There have been 9,502 transplants performed this year from 4,561 donors, and according to the U.S. Department of Health and Human Services, 18 people die everyday waiting for a transplant. These statistics are for transplants of every type, but figuring out how to do an organ as complex as a heart, helps out other transplants as well. Not only can we print tissue and organs when they are needed, versus waiting for a potential donor to die, but the quality of life is much improved and the need for retransplants due to rejection, in cases like mine, are diminished.
The biggest battle in a transplant patient’s body is the immune system. Since the organ is something foreign in your body, a healthy immune system attacks it, like it’s a sliver festering. For this reason, a patient must always take immunosuppressive drugs. The “desired” outcome is for the immune system to be lowered enough that it doesn’t realize someone else’s organ is in your body. Side effects? Numerous! Kidney failure, migraines, cancer risk significantly increased, infection risk is greatly increased, decreased healing, diabetes, reduced bone density, the list could go on and on. There is a balancing act with how severe the side effects of being over immune suppressed and not suppressed enough, so regular blood draws are prescribed to determine the levels of certain drugs in your blood. Even with all of that, you could follow all of the drug protocol that seems to work for most patients, as happened in my case, and still, end up with rejection.
The breakthrough with the Israeli heart is that using information from a patient’s own tissue, the new replacement tissue appears to the immune system as native tissue. So as not to trigger an immune response and eliminating the need for immune suppression. As you may have figured out, this dramatically improves the quality of life for a transplant patient, but also extends the life of most transplant patients as well.
There are still limitations on the tiny heart. The best way it seems to be described is a resolution issue. While there are cells, improvements need to be made to print all of the smaller cells. Interestingly, the cells can contract, but cannot adequately pump. Also, they note the challenge of obtaining a high number of stem cells to produce a large, functioning organ. However, the researchers do hope that “in 10 years, there will be organ printers in the finest hospitals around the world, and these procedures will be conducted routinely”.
