Hello from the United Kingdom

[JohnGUCH]

Greetings from Suffolk England. I am the director of the Grown up Congenital Heart Patients Association.

I think that this website is excellent.

Does anyone know how treatment for adults with congenital heart disease compares in the USA with Europe

Thanks

John

 

[Ross]

Hello John and welcome to VR

While I can't answer the question, I'm sure that when everyone else checks in, someone will have some information. We have a couple of members that are extremely knowledgeable and have done a lot of research. I'm sure someone can enlighten you a bit further.

Read around and enjoy your stay. Welcome to the VR family!

 

[Nancy]

Hi John-

Welcome to this terrific site, as you have found out. There is so much information here to read about. And on top of that we manage to have a little fun from time to time.

My husband is the patient here. But he's got "acquired" heart problems from having had rheumatic fever.

There are lots of folks here with congenital problems, and some from UK, so maybe here will be a good discussion on this issue.

Hope to see you here often. Sounds like you'll have lots of wisdom to impart.

Take care,

 

[martha]

Hi John, just wanted to welcome you to the group. Can't answer your question, hang on there are others that I'm sure can. In the mean time don't be a stranger let us here from you more. martha

 

[hensylee]

Hey, John - welcome to Valve Replacement. We don't have a lot of folks from UK, but we do have a few. It appears from all the posts that treatment is much the same, except for the waiting period for y'all. Same operations, tho and same options, more or less, except some valve units have been used there before approval by FDA here, causing problems. However, there will be some with more knowledge than me who will be along to make their statements. Jane? Scottie? Simon? Maybe you can add something for John.

 

[McCln]

Ongential heart defect

Ongential heart defect

It might help by me telling my own history of congential heart defect. Let me begin. I was diagnosed at three moths of age with a congential heart defect. They do not know what casues the defect, but I did some reserch because my mother had Rhuematoid Arthritis. With the defect, I had a heart murmur, a leak of the aortic valve.

Begining at a young age, I had a couple of catherizations to keep track of the heart murmur and the aortic valve. At age eight, they perfromed my first bypass, a repair and scraped part of the heart murmur out of the aortic valve. I still had the murmur.

Years later, had the aortic valve replaced almost 2 years ago. But for the most part, the usual treatment for congetial heart defects are to keep a close monitor system in place, keeping track of the disease and do any necessary surgery to repair, place or replace. I hope this helps in the US. Part. We go throught x-rays, ekgs, eeg, ehocardiogram and the T. There is a lot of advances going on everyday that makes the old ways obslete.


Caroline
09-13-01
Aortic valve replacement
St. Jude's Valve