In my evaluation for my second heart transplant I was made aware of a research opportunity taking place at Cedars Sinai. It’s through the NIH and it’s called “All of Us.”
https://allofus.nih.gov/
From their website:
The All of Us Research Program is inviting one million people across the U.S. to help build one of the most diverse health databases in history. We welcome participants from all backgrounds. Researchers will use the data to learn how our biology, lifestyle, and environment affect health. This may one day help them find ways to treat and prevent disease.
It’s a really neat and important opportunity that you should consider participating in. These kinds of research efforts are being made possible by the incredible computer technology we have with databases and computer modeling. Some of the same technology is used to model black hole behavior, or possible outcomes based on climate data. The research might not bear fruit this year or next year, or even in 10 years, but it will lay an important foundation for examining societal and environmental factors and developing innovative treatments.
So I was happy to join. All it took was a simple blood and urine test.
One of the things they offer is DNA analysis. They will look at your DNA for disease markers, but also for ancestry, and things like your ability to detect bitter taste, your likelihood of enjoying cilantro or not, and even if you might be prone to lactose intolerance.
I just got my results back and checked in on my ancestry. Are you ready to hear about my ancestry? Drumroll please………..
I’m white.
Shocking I know. My ancestry is as follows:
57%
Northern and Central Europe
Such as Ireland, the United Kingdom, Germany, France, Scandinavia, and parts of eastern Europe
30%
Eastern Europe
Such as Poland, Ukraine, and Russia
13%
Southern Europe and the Mediterranean
Such as the Balkans, Italy, and Greece
I also agreed to participate in another research project that is dedicated to understanding cardiac allograft vasculopathy, or CAV. That’s the disease I have now that is affecting my transplanted heart.
In plain English it means heart transplant disease affecting blood vessels.
As I understand it, it’s the culmination of several factors, but mostly it’s the effect of the immune system attacking the heart over many years.
When you have a heart transplant, you know you have to stop your immune system from attacking the organ, which is called rejection. There’s a very real risk early on of ‘acute rejection’ so the immune is very suppressed for the first year or so. After that, medications are lowered and you are looking to strike a balance.
Suppress the immune system too much and you leave the patient wide open to disease, and cancer, and well as other organ failure. Fail to suppress it enough, the immune system attacks the organ and you lose it.
It’s a delicate balance, but the science has been very successful at finding that perfect balance. I’m a great example. Most patients have signs of CAV by year 10. I didn’t have any until year 18, and I’m now nearly 24 years out.
A great success by all measurements. Well, not all. I'm not ready to throw in the towel.
So research continues to find exactly what factors are increasing the risk of developing CAV, and new medications that do a better job of preventing it, while also not being so harsh on other organs, such as the liver or kidneys.
So how am I participating in a research study about CAV?
They asked if I would be willing to donate my current transplanted heart once I received a new heart. My first thought was, “hey man, I’m only borrowing it anyway.”
I will do anything I can to help further the science and discovery of treatments for folks like me. I may not reap the benefits of it, but if someone else down the line does, I’m all for it.
Here’s that link again to the All of Us research study. Please consider participating and helping future generations.
https://allofus.nih.gov/