Hi I am 38 I live in south wales and I am reading up on Eisenmenger Syndrome

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Hi I am 38 I live in south wales and I am reading up on this but I dont know anyone at my age with this illness .Am I the only one that has got to 38 plus ??

Please get in touch with me .

thanks

Lesley

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0 likes, 13 replies

13 Replies

  • Posted

    Hi I'm a forty year old that has eisenmenger's syndrome. and that lesley is not alone.I have met afew people that has this illness and we r all at differant stages of the illness. I live in Edinburgh and I've had my ups and downs with this condition. so we r out there it's just finding us.

    Lesley.

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  • Posted

    Hi - I live in Nottinghamshire and am 39 with Eisenmengers- I've contacted one other person who has Eisenmenger's Syndrome but that was a couple of years ago so I'm not sure how they are getting on now. I've found the internet a valuable source of information about the condition and its nice to know I'm not alone!

    Anita smile

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  • Posted

    Hi Anita, I live on the outskirts of Nottingham and have a family member with Eisnemenger's syndrome. It is nice to know there are other people with this condition. Do you know if there are any chat lines available to talk and make friends? Hope to hear from you soon.

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  • Posted

    Hi My name is Pauline , I have eisenmengers and I am 57 years old so dont worry yet. Take care
  • Posted

    My husband is 40 and was diagnosed with ES just over four years ago. It was a shock to know he was born with a large hole in his heart and has developed ES. He is not receiving any treatment for it, however he has just started to cough up blood these last few days. We are seeing his cardiologist tomorrow.

    Anyone had similar experiences ?

    • Posted

      Yes i was coughing up blood last few days ago and it was really hard for us who has ES.. I was born with a hole in the heart and yes it has developed ES.. cheesygrin_^
  • Posted

    I am 61yr old male. I still work and play, we have 2 daughters (20&22).When I get tired and run down my throat bleeds. It is horrible and disconcerting. it gets worse if I try to keep going.I have found I need to go to bed, usually with antibiotics, and REST for up to two weeks. After it has healed, and I AM RESTED, I am usually back to normal. I didn`t realise the bleeding was linked to my ES until a fewyears ago. I find thee are not many of us ES`sabout so many Dr.s have never met it except in text books.Ask your Dr. how many other ES`s he treats as this can concentrate thrir minds! only found this site recently and it`s great to speak to others. Best Wishes.
  • Posted

    Hi Lesley I am 56 and have eisenmengers. I live in worcestershire. Dont worry there is a few of us out here.
  • Posted

    Hi Iam hosein I m 32 years old I have aisenmeger and larg vsd and candid of transplantation I take sildenaphill and cardevillol I m student master of science in Iran I with help God can marrigge and have 1 son that have 7 years old we can share our experience if you want
  • Posted

    Hello everyone

    Just discovered this website today. I am 53 yrs old female and have Eisenmengers with Patent ductus arteriosis (PDA). I live in Brisbane, Australia and attend a specialty cardiac hospital here every 3 months. Am on Bosentan and sildenafil therapy which seems to be keeping me well. Also on oxygen (mostly overnight).

    Nice to know there are EI people in their 50's, and someone is over 60.

    Good luck to you all.

    Romy

  • Posted

    hi i am 23 yrs old female with es i am taking sildenaphill 100mg so i just want to know marriage is suggestible to patients with es
    • Posted

      Hi i am 27 years old female with ES since i was a kid i am taking sildenafil 20mg and i am on oxygen everydAy.. Does anyone here who is waiting for a heart-lung transplant?? Hows life treating you with this ES?

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