Pulmonary hypertension

[Mumnessa]

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

[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]

Thanks x

[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]

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