I have an overall healthy 36 year old son, married with 3 young children, ages 2, 7 and 8.
My son was diagnosed with IHSS Cardiomyopathy 20 years ago. He has been seen by a cardiologist over these years and recently he changed doctors. He had been taking "Cardizan" a beta calcium blocker, but his current cardiologist changed him to a beta blocker. He had an electrocardiogram 3 weeks ago and the muscle in the left ventricle has enlarged dramatically and the blood is leaking into the mitral valve and also backing into the ventricle rather than flowing. He was told that he would need surgery to remove the enlarged muscle in his left ventricle.
I have been doing quite a bit of research on behalf of my son and I have found that the Cleveland Clinic is the best hospital in the nation for heart conditions and for this type of procedure that my son has. If you could recommend what his next step should be, I would greatly appreciate knowing, as well as my son knowing where to start. He was told to start at the Brigham & Womens' Hospital in Boston. He was given a list of names of cardiologists. We will be interviewing doctors and I felt that takes an awfully long time, but his current doctor in New Hampshire did not know anyone who specializes in IHSS. We definitely need guidance as to what we should do. As you can imagine, we are all very upset, concerned and confused and not sure where to turn. My son also was told that he could no longer work or lift anything over 10 pounds. He currently left his job, actually just last week, and is now the at-home dad.
I currently live in the Boston, Massachusetts area and my son is in New Hampshire. If you feel it possible, we would travel to your facility for a specialist.
I would greatly appreciate hearing from you regarding this grave concern of ours.
Thank you for taking the time to read this.
Sincerely, An extremely concerned mother.