Friday I started a treatment that my current transplant team, also consulting with the other potential heart transplant teams in Los Angeles, believe that will lower the non-HLA antibodies returning. This will help any further rejection of this heart and put me in a better position to be a better candidate for a successful heart retransplantation. The treatment is called Extra Corporeal Photopheresis, (Photopheresis or ECP for short).
The procedure is done by pulling blood through a machine that separates out the blood. The white blood cells get treated with a drug, Methoxsalen, that make them more reactive to ultraviolet light. At this point, the blood runs through a very thin plate that exposes the blood to UV light. The blood is then returned into the body, where the treated blood actually has the power to party with non-treated cells to have the same effect over several hours.
Typically treatments are performed on back to back days, which constitutes one treatment. I have been prescribed weekly for a month and then monthly treatments. So far I have not had any side effects at all, although when I first heard about it, I was secretly hoping this would be my ticket to the making of a superhero story, but we still have time. In all seriousness, the side effects for this are pretty minimal. Possible fatigue, some lowered blood pressure during the procedure, dizziness, temporary low-grade fever and potential 2 to 3 hours of boredom.
If you are interested here is a video on how the whole process works.
In other news, there is a very good chance that upon completion of today’s ECP treatment that I will get a break and get to be released from the hospital while we wait to hear from other centers.
Your toughness is amazing! I wish I could say something to make this all go away, but even a non-stop talker like me is left speechless! I pray for you, your mom, your sisters and for Ashley. If anyone can win this, it’s you. Keep up the fight and continue the blog.
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