Pulmonary Hypertension Take 2

[puddy68]

I'm so sorry to bother you all again. I'm getting a bit antsy waiting for my respiratory appointment. I was discharged from hospital around the 13th September and was told I had moderate COPD and was given trimbow for this. [I already know I have mild Pulmonary Hypertension, and scarring from sarcoidosis, however, they did not address this in the hospital, as they had misplaced my results for the Pulmonary Hypertension].

I was due to see them again in 6 weeks, however I'm still waiting, and am very nervous that my Pulmonary Hypertension should be treated now. Would anyone mind awfully enlightening me on how Pulmonary Hypertension is treated? Inhalers? Tablets? Or do they automatically put you on oxygen. I cope with my day to day activities quite well - no symptoms at rest, shortness of breath on long walks/walking up hills. Does everyone always end up on oxygen? I'd just like to know what I'll be facing in the way of treatment. Thank you so much....Shelley.

[Alberta56]

Have you looked at the previous posts about pulmonary Hypertension? They seem quite optimistic. The diagnostic procedure sounds worrying but is painless; and people seem to be on a variety of pills to keep the condition stable. Many of the posts are 8 years old and I'm sure treatment has moved on since then. Try not to worry- I think they will have called you in if they had thought your case was urgent.xxx

[Patk1]

I'd ring booking desk at hospital to see when you'll b seen + if appointment not forthcoming,ring secretary x

[AngieB72]

Hi

I was diagnosed with PH nine years ago as a result of having pulmonary fibrosis (diagnosed in 2008). I am being treated with two types of tablets that I take every day. I have luckily been stable since they found the correct medication for me. Others are treated with a thing called a Hickman line (I don’t know much about this as it’s never been discussed for me). I have been on ambulatory oxygen for 8 years - the prescription has gradually increased but I still only need it on exertion.

To receive the medication for PH I was under the impression that you had to be treated at one of the eight centres of PH excellence around the country due to the costs of the medication. I am looked after by The Royal Brompton in London.

It does seem that like lots of other incurable conditions every PH person has a different journey. Chase those appointments and if you haven’t been referred to a centre of excellence demand to be. Good luck 💕🌸

[AngieB72 in reply to AngieB72]

Just seen you are in Australia so our UK centres of excellence won’t help you but I did find this for you.

phaaustralia.com/page/19/ph...

[emphesemalema in reply to AngieB72]

Which consultant do you see in royal Brompton? I have had a previous procedure with prof. Shah, though live in scotland.

[AngieB72 in reply to emphesemalema]

My main PH consultant is Mr Wort but I often see members of his team. No idea who actually carries out my right heart catheter when I have it done.

[Millyboo710]

I may have you confused with someone else, but I thought I’d already said I take Sildenafil tablets 3 times a day for PH. I am on oxygen 24/7 but that is for my interstitial lung disease.