As Bob said in the previous post, Emily was diagnosed in 2007 with a unique form of HCM. For the first year we thought she might be stable, but in the last 6 months the clinical data show she is in a form of heart failure.
Because of the decline in her condition we were referred from Tufts (New England Medical Center) in Boston to Children's Hospital Boston (CHB). After a lengthy evaluation procedure, we were fairly shocked at the recommendation that she be listed for a transplant. However, since her clinical data are so poor, and the likely progression of her disease is unknown, transplant really is the only option. As we were told in October, it is not a case it if she needs a transplant it is more when.
We finalized the testing and paperwork for the transplant on December 2, 2008. She was listed on December 8, 2008. It is likely the wait will be 6-9 months, although is it possible that it could be any day, or more than a year. The list for kids is very dynamic because it does not only depend on blood type and condition of the patient, but also age, and size. Kids can be listed after her, and be ahead of her on the list if their condition is worse. There are a lot of variables, so it is impossible to know how soon it could happen.
If we are still living at home when the hospital is notified that there is a heart available for her, we will be called and need to be in Boston asap. She will have surgery immediatley, and then be in ICU for 2 weeks, in hospital for 2 more weeks, and then we will need to live in Boston area for a month or maybe two, right after she is released to receive post-op care.
We are told that transplants have come a long way, and people can lead fairly normal lives post-transplant.