Hi all,

I had an appointment with Dr. Bellam on Friday, July 25. He is an AdventHealth doctor who specializes in Advanced Heart Failure and Transplants.   Based on a cardio test that I did in his office and my other recent test results, he believes that I will be an open-heart surgical candidate rather than a transplant candidate. While I am really releaved by his opinion, I am still waiting to see if the surgeons will agree to do the surgery, given the complicated nature of it. Dr. Bellam will meet sometime this week with the other surgeons and my cardiologist and offer his recommendations.

He will also speak with the Electrophysiologist to see if we can possibly hold off on implanting the ICD (defibrillator) until after surgery and see if my heart improves. This would be great news since the first attempt was a failure.  I will know more on this after my August 4th telehealth appointment with Dr. Accola (Cardiovascular Surgeon).

My head has been spinning from all the schedule changes but I’m grateful that Orlando has such fantastic medical care. I’ve needed to cancel several MRA’s that were recommended by the Genetics team, because my Nephrologist said it would be too hard on my kidneys to have so many in a short period of time. I had an MRA of the heart on Friday, and will have the head and neck done this Sunday. The other ones can wait awhile!  These are to check for other aneurisms and vascular problems from the Loeys-Dietz.  

At the appointment with Dr. Bellam, David asked him, “what are the good, the bad and the ugly of all this, starting with the ugly?” Dr. Bellam responded that the ugly is the Loeys-Dietz Syndrome, the bad is that I still need complicated open-heart surgery, and the good is my general health, heart compensation and that I am stronger than I look. This gives me some hope!

Thank you all so much for checking in and all of your wonderful messages. It truly means so much to me, and it makes this battle easier to fight knowing I have all of your support.

Love, Sharon