I have received wonderful news from the transplant team. After my test results last week, they have determined that I am too well to be listed on the Heart Transplant list for now. I will be referred back to the CHF clinic at Vanderbilt to be monitored. The weight loss has definitely helped. I'm going to keep on losing so that I can postpone being added as long as I can. Thanks everyone!!
Jan 28, 2016
I went for my check up with the Heart Transplant Clinic and Neurology Clinic today. The heart transplant group is going to continue to follow me. As of right now, they have not made the official decision to add me to the list. There are still factors that they are trying to determine. Hopefully the visit with the neurologist will give the heart doctors insight into my congenital myopathy. The neurologist does not see a reason that my titin congenital myopathy would hinder me with receiving a new heart. The heart transplant will meet and discuss my case in the next 2 weeks. The cardiologist still feels that as long as my health status remains stable then I should be able to postpone the urgency for the transplant. That is definitely a plus. Another plus for me is I have lost 28 lbs. I definitely feel better lately since watching my salt intake more closely.
Nov 23, 2015
I had my follow up with the Transplant Clinic at Vanderbilt today. It went well. The Transplant Clinic doctors still want to find more information regarding my Titin myopathy and figuring out how...