Diane, It is so good to know that we have people like you to fight for whats right. I have been going through so much that I have been uncertain of.My first referal didn't seem to have time for me. The second one said my case was rare and he would like the chalange and experiance. The third said I would probably have to have a valve replacement but I should buy myself some time by letting him do a valvo. No one would give me straight answers for my concerns. I am with the fourth now.He said the valvo would probably last a month and I need replacement right away(I am sceduled Sept 30) I voiced my concern again about my sleep apnea and COPD and they finally agreed they should send me to measure my lung functions last week.Today I get a call that they are sceduling an appointment with a lung doctor because "to their suprise" my lung functions were not good and I may need to be cleared for surgery. I have been a total wreck but you, Diane have given me the courage to go on with this and get it right. Thank You..Pat
I could have been reading my own story, it is frustrating and wearying to be constantly rebuffed and misdirected by so called experts. In my journal I couldn't name my first cardiologist because of the libel laws here in UK. I was so fortunate that a friend's husband (a cardiac thoracic anaethetist) was transferred to Papworth Hospital in Cambridge where he was able to show my echo to the most senior surgeon and I was able to travel down and get my valve repaired by one of the finest valve repair surgeons in the world. I hope that more people read our stories and find the strength required to fight the system to get their rightful treatment.