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Pulmonary hypertension

Mumnessa profile image
4 Replies

I’m new on this page, am also on British heart foundation page and af association page. Just recently been diagnosed with pulmonary hypertension and am waiting an appointment at Hammersmith hospital

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Mumnessa profile image
Mumnessa
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4 Replies
Mumnessa profile image
Mumnessa

Thanks for the reply, I have been told that mine is primary pulmonary hypertension and referred to specialist for further tests ( even though had most of the ones on the list ) catheratisation I think it’s called and then maedication to help. Can I ask what TOE means or stands for? I have gone onto the PHA website and received a pack, most informative.

I’m glad finally have diagnosis just need to see specialist to advise further.

How are you now and what treatment are you receiving?

Mumnessa profile image
Mumnessa

Thanks x

Carnival567 profile image
Carnival567

I have secondary pulmonary hypertension caused by both lung disease and congenital heart disease. I also have bronchiectasis and bronchiolitis obliterans, which is an interstitial lung disease causing pulmonary fibrosis. I had a right and left heart catheterisation at Bristol Heart Institute in November, which is a partner with the Hammersmith Hospital. For me they are not doing anything except medical management because my lungs are not good and I also have permanent Atrial Fibrillation. They are trying to control the AF by fiddling about with my digoxin dose, which seems to be helping a bit. They don't want to do another ablation because of lung disease. I am on ambulatory oxygen currently but have been told I will need long term oxygen fairly soon. I am 74 and the doctors are all a bit surprised I am still alive, because I have exceeded the average life expectancy for my congenital heart disease by 15 years. I plan to keep going a bit longer yet! The RHC was all right, and as the cardiologist said, they had a good look round and found quite a few things to do with my heart, but I am pleased that my coronary arteries are fine. I do hope everything goes well for you and you have helpful advice. Good luck xx

Mumnessa profile image
Mumnessa

Thanks for reply, I have been told that mine is primary ph , all the best and take care of yourself.

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