pulmonary hypertension info anyone

[NLGA]

I have AF and a mildly dilatec left atrium

I was told my pulmonary hypertension score/grade was upper limits of normal

Anyone have this or in pulmonary hypertension and how are you treating it

[NLGA]

anyone know about this at all

Looking for ways to improve mine as they said mine was 32 at the hospital which is high normal 34/35 I was told was the cut off but I didn’t really ask enough questions at the time

[Buffafly in reply to NLGA]

I looked it up on the NHS website and really it’s up to your doctors to treat. It will limit your ability to exercise. You could visit phauk.org/ for help and more information.

[NLGA in reply to Buffafly]

Thank you for your time and help

My issue seems to be I am just on the higher side of normal before mild pulmonary hypertension very much borderline

It seems that to I go up to the next notch I can’t he treated but I kind of don’t want to get to that next stage and at that point the help stops from the cardiologist

So today I have booked privately £210 for half hour to see someone in early Feb in order to get there view on the pulmonary and if it’s a reason behind my AF or breathing issues and seek there advice

[Buffafly in reply to NLGA]

From what I’ve read it’s the previous AF causing the PH. I hope your appointment is helpful, do keep us updated.

[Threecats]

Hi NLGA

Sorry, I’m not on the forum so much these days, so have only just seen your post.

I had an echocardiogram two years ago which picked up raised pulmonary pressure, mine was also 32. I was naturally concerned and saw someone privately who said that nothing further would be done at this stage as it was very borderline and could well be due to how the scan was interpreted by the operator carrying it out. Since then I’ve gone into persistent AF. (I was still having very infrequent AF episodes at the time). I also have a complex form of sleep disordered breathing that has only recently been diagnosed and I’m now on a ventilator at night for that but breathing, particularly when exercising, is still an issue for me. I’m seeing an NHS respiratory consultant at the beginning of March -it’s been a long wait! I’m going to raise the pulmonary hypertension issue with him and see what he says, too.

The PH charity Buffafly linked above is good. They also have a very helpful FB forum - there’s a link to it on their website . I don’t know where you’re based but I’m in the UK and here there are, I think, seven specialist centres that deal with PH but referral is only made to one of them via a consultant and I get the impression things have to be pretty bad before that happens! PH is officially diagnosed by means of a right heart catheterisation, where they thread a pressure sensor into the pulmonary artery to get a true reading. Can’t say as it’s something I relish the prospect of, so I’ve not been overly proactive in pushing for further tests on this one!

Anyway, I wish you well and hope the appointment is useful.

All the best, TC

[NLGA in reply to Threecats]

Thank you Threecats very informative

What I found strange is why I wasn’t offered say a yearly echo to check on the score

Did they say what it needs to be before they act ?

Looking at the progress of the hypertension I can’t see where at 32 we should be suffering yet from the symptoms of breathing issues . That seems to come later as the the score increases

[Threecats]

I rather got the impression that, until you show signs of right side heart failure eg. fluid retention, shortness of breath etc. they don’t do anything. My guy said it could be years , if at all, before it got to that point. It seems a bit nuts to me to wait until you get to that point. I know I’m being simplistic but if I have a leak in my roof, I wouldn’t wait until it’s gushing in before doing something!

Anyway, my situation is a bit more complicated by the sleep apnoea thing I’ve had going on, as that also puts strain on the right hand side of the heart, so maybe things will improve now I’m on the correct sleep machine. Mind you, it’s taken nearly three years to get there, so goodness knows what damage has been done in the meantime! There was no suggestion of regular echos but I shall pursue it when I talk to the consultant in March. If I get anywhere I’ll let you know!

Out of interest, have you been checked for sleep apnoea?

[NLGA in reply to Threecats]

Your right that’s just how I feel why wait to it climbs when it’s borderline now

I haven’t been checked for sleep apnea just while in hospital and only by questions asked of me no actual test

I wake up in the night with a feeling of lack of oxygen for about a week solid then I go 2 /3 weeks or so sleeping like a baby . Last night was bad lasting 4 hours of being awake sat downstairs but I felt a little breathing issue walking up the stairs so I thought this could be a bad night

I suffer with a anxiety issue so to incidents over the last 4 years which were not physical but life changing

Now every little problem becomes a serious thing where all my life ( I am 55 this month ) didn’t bother me one bit even big problems were not a issue now a minor thing can make me anxious

[Threecats]

Anxiety doesn’t help, as I know only too well! I’ll be 60 this year and have been battling for a few years now to get answers. As you say, it doesn’t take much to get the anxious mind racing away!

I had no idea I had sleep apnoea, I just used to wake in the mornings feeling as if I hadn’t slept when, as far as I was concerned, I thought I had. As I was only getting AF episodes at night then and wanted to find out why, I bought myself a ring device that continuously monitors heart rate and oxygen levels. That showed the O2 desaturations I was having throughout the night every night and it was those that were triggering the AF.

I would suggest you ask your GP about a referral to a sleep clinic for a home sleep study. At least, that way, you’ll know for certain. A questionnaire isn’t sufficient to ascertain whether you have sleep apnoea or not.

[NLGA in reply to Threecats]

I will do that three cats

Definitely need to get on top of this as it’s really messing my life up