Highest Rated Comments


Lutibell3 karma

I hope you have a great support person helping you. Did you have to travel very far to get to a hospital that did your transplant? What restrictions are the doctors recommending for going home during a pandemic?? It used to be no restaurant buffets, trips to the zoo...

Lutibell2 karma

I learned about this genetic disorder in 1983. There were several doctors using experimental medications. My friends mother always used loose fitting cotton clothes and participated in several drug studies. Have you found any supplements or medications that have helped? I know there is a lot of interest in CRISPR trying to correct rare genetic disorders. Have you heard of any studies involving CRISP and EMB?

Lutibell1 karma

I hope you have a great support person helping you. Did you have to travel very far to get to a hospital that did your transplant? What restrictions are the doctors recommending for going home during a pandemic?? It used to be no restaurant buffets, trips to the zoo...

Lutibell1 karma

I worked in a pre op heart transplant unit. So many people have a very long wait. Have you every watched the movie "7 pounds"?....I bawl every.single.time...