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Terri Needs a Heart Transplant and Your Help

Terri is a 28 year old woman who is striving to live a normal life. Her journey started when she was 12 years old going to many doctors and going through several tests trying to reach a diagnosis. The doctors at that time decided she had Mini-Core disease. However, with advances in medical technology, we were told this year that she has Titin’s disease and that she will need a heart transplant.

Updates (6)

March 17, 2016

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!!

January 29, 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.


December 2, 2015

Stay strong and stay on your path you are a true warrior

Alvin Ryan

October 27, 2015

Terri I wish I could give more! I am so sorry you are having to go through this. I know it's been years since we've seen each other but I have always considered you a dear and wonderful friend!!

Jamie Williams