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Eisenmenger syndrome

Posted , 4 users are following.

Pauline_Rose
Pauline_Rose

Hi My name is Pauline and I have Eisenmenger syndrome. I am 57 this year. Am I the oldest ever?

I would like to meet other people with eisenmengers In cheshire

0 likes, 3 replies

3 Replies

  • rosy
    rosy

    Posted

    Hello Pauline, you and I are the same age, my b'day is May. I live in Worcestershire . I have had to give up full time work as I was getting too slow and tired but I do other things now and wished I had given up earlier as life is much better now. I would love to hear from you and swap experiences as we are the same generation smile Rosy
  • Pauline_Rose
    Pauline_Rose

    Posted

    Hi Rosy

    Sorry not been on here for a while, thought I would be contacted if I had a reply.

    My bday is also in May, I am sure we have a lot in common.

    I am a member of GUCH association, grown ups with congenital hearts. I am on the helpline Wed 10-12.30 and Fri 1-4. If you go onto the guch website you can get the number for the helpline and give me a ring between the hours of my shift. www.guch.org.uk.

    I would love to hear from you. smile

  • usman
    usman

    Posted

    Hi,

    My name is Usman and I live in Coventry.

    My sister who is back in my home country Pakistan diagnosed with Eisenmenger's Syndrome with severe Pulmonary hypertension. she's 24 year old. she's also split blood during coughing. Blood when coughing is coming from 4 years but back then doctor's said she's having T.B. But now when they examined the heart they are sure its Eisenmenger's Syndrome. Her blood pressure in lungs is 120 and doctor's told us it should be between 20 to 25. So it's very high.

    Is there any private treatment available here in U.K.??? AND what treatment is available apart from lungs transplant.

    Plz. reply if any body have any information....

    thanks..

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