Pulmonary arterial hypertension

[fairgo45]

I've being diagnosed with pulmonary arterial hypertension affecting the lungs.Early days yet but I wondered if anyone else has this

[Threecats]

Hi Fairgo,

I have this too!

Had a consultation to discuss the result of my follow-up echocardiogram last Thursday and, as well as being told I have some remodelling and scarring, I’ve also got mild pulmonary arterial hypertension, apparently. All a bit of a surprise really, as last years scan didn’t show any of that, just a little bit of dilation of the right atrium. I was told that, in my case it’s to do with the kyphoscoliosis I have that affects my chest cavity and also sleep apnoea, for which I’m now using a CPAP machine. Have you been screened for sleep apnoea?

[fairgo45 in reply to Threecats]

I haven't had a sleep apnea test as such but the fitness watch I use doesn't show it as a problem. I've actually had mild pulmonary hypertension for years but the last two echocardiograms have shown it to be severe so I'm having a right heart angiogram in a few weeks to see how bad it is.

I don't know how it's treated so I thought I'd pop on here to see if I have fellow sufferers

[Threecats in reply to fairgo45]

I’m sorry to hear that. I wish you well with the angiogram. As you say, there doesn’t seem to be a lot of information out there about it and it does seem quite rare. The cardiologist I saw basically said that they wait until the heart starts to fail and water retention becomes an issue and then they’ll introduce diuretics. Until then they don’t do anything.

I can’t say as I like the idea of not doing anything to help myself, just waiting until heart failure sets in! If I find out anything useful that might help, I’ll let you know.

All the best to you, TC

[fairgo45 in reply to Threecats]

Yes I like to be as proactive as possible there is nothing really on health unlocked that covers PAH so I'm going to search for a forum somewhere like America might be a good place to start

[Autumn_Leaves in reply to fairgo45]

Hope it goes well for you.

[CDreamer]

So sorry to hear that, hope you get some good advice.

[fairgo45 in reply to CDreamer]

Thanks I hope so too it's not that common I think

[Bryonny]

Hello, I was told a month ago I have pulmonary hypertension. All I was told was I would be prescribed diuretics. I sent an email to the specialist nurse to ask who and how my condition would be monitored as I understood the condition generally deteriorates over time? Would I be managed by lung specialist team or my cardiologist?

I was rather stunned by the new diagnosis, so wasn’t prepared with any questions to ask, now having gone online to find out more I feel surprised at the lack of information I have been given to date and trying not to worry myself with information that is online but may not be relevant to me?

I received a letter today advising I would have another echo and Holter monitor in a years time but I am very keen to find out more and be proactive in keeping myself as healthy as possible for as long as possible.

I would like to better understand role of exercise, diet and any other treatments that may be relevant? Is flying a contraindication (although not high on my list of priorities I’d like to know)? Do you have to inform DVLA here in the UK.

I hope you have been successful in finding out more information. All the best

[fairgo45]

I'm having a RHC to confirm the severity of PAH.

Here is s group I belong to that is very informative.

facebook.com/groups/1519433...