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[Dee67]

hi I have eisenmenger syndrome +pulmonary hypertension , only known about just under a yr and trying 2 find help in coping with it all , not luck so far with bhf, would nice just 2 chat with other people who dealing with more less the same thing

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Welcome Dee,

It sounds like there should be a dedicated group for eisenmenger syndrome, are you finding you are short of breath? Many here can relate to that.

Best wishes BC

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Welcome too our community my friend has pulmonary hypertension she has joined this group phassociation.org/ sympathies with the breathing that much I can understand.

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Never heard of that what does it do.

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I too have ph due to a congenital heart defect-asd. I was diagnosed a year ago but had been displaying symptoms for 1 to 2 years before then. The info most up to date and accurate can be found at pha association. I became a member when first diagnosed and like you I felt it hard to get my head around. The members welcome pack from pha was brilliant, any thing you would want or need to know was included in the pack.

isolation and anxiety can be so over whelming and to talk to others who have ph can be such a relief, hope this helps. Lynda7 x