Best treatment and hospitals for Tetr... - British Heart Fou...

British Heart Foundation

49,965 members31,546 posts

Best treatment and hospitals for Tetralogy of Fallot examinations and surgery? Born with it and so far 3 open heart surgeries.

ocarina404 profile image
6 Replies

Tetralogy Of Fallot

Congenital heart disease

Written by
ocarina404 profile image
ocarina404
To view profiles and participate in discussions please or .
Read more about...
6 Replies
MichaelJH profile image
MichaelJHHeart Star

Hello and welcome to the forum! If I assume you are a UK resident your inital surgeries were probably carried out at Great Ormond Street Hospital. My next assumption is that you are in your thirties. Because you started with a very complex condition u would suggest you get a referral to Cambridge Papworth Hospital. Wishing you all the best, MichaelJH

ocarina404 profile image
ocarina404 in reply to MichaelJH

Thank you so much. I am actually just getting to know the page, so I might be a little lost as to which group specialize in what and where. I am Ecuadorian, but thanks to my family I do have European citizenship. My Tetralogy is not completely fixed and my insurance doesn't cover my ToF, so my goal is to find affordable (or free) treatment anywhere around the globe.

Milkfairy profile image
MilkfairyHeart Star

Adult congential heart disease services are a specialised service.

The Sommerville Foundtion provides this information which you may find helpful.

thesf.org.uk/our-community/...

Royal Papworth is not on the list.

MichaelJH profile image
MichaelJHHeart Star in reply to Milkfairy

Did a bit more delving and it appears that although Papworth have an ACHD (Adult Congenial Heart Disease) Unit complex surgeries are referred to Guys and St Thomas:

royalpapworth.nhs.uk/our-se...

Milkfairy profile image
MilkfairyHeart Star in reply to MichaelJH

The Sommerville Foundation is a charity established by healthcare professionals and patients.

It is a really useful source of information, research and only lists recommended Adult congential heart disease services.

ocarina404 profile image
ocarina404 in reply to Milkfairy

Thank you so much for the response, I will still look into it to see if I can find more information on this.

You may also like...

Open heart surgery recovery

(apart from my heart valve issue!) and have just had valve replacement by open heart surgery. Keen...

Recovery after open heart surgery

recovery from open heart surgery - slow

I had open heart surgery in February but am still feeling tired, nauseous and generally out of sorts

Hospital bag/items for home recovery (Open Heart surgery)

am getting closer to getting a date for my Open Heart surgery to replace my aortic valve.... so,...

post open heart surgery

I had my third open heart surgery two weeks ago. I have noticed positive change to my health already