Understanding pulmonary hypertension

[NLGA]

could someone explain this to me please

My echo shows 32 for this I didn’t really understand what this means

The cardio doctor said that’s the upper limit of safe / ok but I had so many other questions about my echo etc I wish I had asked more today

I have AF but no other heart issues

[Happyrosie]

pulmonary hypertension isn’t common. If you want to understand it I think you need to speak to a professional.

The BHF have a helpline.

[mozart27 in reply to Happyrosie]

I joined this group to help my late sister who it was thought had pulmonary hypertension and I attended an appointment with her with a non-specialist cardiolgist. She had previously been seen by a lung specialist. When she died, she was waiting for an appointment with a specialist. I should say that my sister was in her mid 80s with a number of health conditions. She died in hospital last May after a fall when she broke her hip. Unfortunately, she got Covid in hospial. But the point has already been made that pulmonary hypertension isn't common and, I understand, is usually diagnosed at one of the few specialist centres. I think you should get specialist advice.

[NLGA in reply to mozart27]

sorry to hear of your lose

Thank you for replying . I will seek better advice although my questions was really to see if anyone understood the grading system or how my 32 becomes a 35 and upwards

[mozart27]

Sorry but I can't help with this. My sister didn't get this far

[NLGA in reply to mozart27]

I understand it’s kind of you to post what you did

[SuperFluff]

Hello! İ have pulmonary hypertension. İ was diagnosed with mitral regurgitation initially nearly 5 years ago. Then 3 years ago at my echocardiogram İ was told that I had pulmonary hypertension, which is a complication of my condition. İnitially it was 31. Last year it was 33. Apparently under 30 is considered normal; 30-45 mild; 45-65 moderate; and severe is 65+. İt does worsen with age.

There is a pulmonary hypertension charity in the UK that has a helpline. As mine is related to the heart, İ am under cardiac care. İf it is lung related, the charity will definitely guide you.

İn my case the cardiologist said that we don't worry about it until it gets to 50. He did recommend taking vitamin D twice a week even though my vitamin D was in range. Maybe you could ask about this. Obviously exercising to keep your body strong too is key.

All the best x

[NLGA in reply to SuperFluff]

Thank you Super Fluff

That’s encouraging can I ask how often you have to have this tested in the 3 years

I have AF diagnosed 2022 but I feel I had it 2021 and left atrium midly dilated Lungs also clear of issues

[SuperFluff]

İ have an echocardiogram every year now to check the level of mitral regurgitation and get the pulmonary hypertension result from that as well. My next one is in April. However I am currently living abroad so I don't know what the UK do. Having just got my medical file out, it was 33 in April 2023 and last year 31 in April 2024. So it actually went down. When I found out I had PH in 2023 İ spoke to the physio that I was seeing and we did lung/breathing exercises. İn April 2024 the cardiologist told me to increase my vitamin D. So I shall see where we are this year...

[NLGA in reply to SuperFluff]

That’s great

So it actually can reduce

Well done

I didn’t know that and my basic google search didn’t put a positive picture on it

Do you walk or do light gym work at all and if so how’s your breathing ? I struggle on slight inclines and often stop I also struggle to do anything like what i previously walked or lifted at work I’m 55 years old by the way

[Deejay62]

You can send off for the booklet for a small fee from the pulmonary hypertension association online. Mine is in the 60s it’s severe, but it’s an extension of my other heart problem which has progressed so that’s added.

[NLGA in reply to Deejay62]

How long did it take to go from 30 to 60 if you don’t mind me asking

[Deejay62 in reply to NLGA]

I don’t know it just appeared after I had an echo. I asked my cardiologist and he said it’s just a progression of my illness and left it at that. I sent off for the booklet from the association to find out more about what it will mean for me. I was a bit shocked about it for a while but I’ve gotten over it now. Arrhythmias give me more problems. I don’t smoke or drink so there’s nothing more I can do.

[NLGA in reply to Deejay62]

No totally see your point

I was thinking I’m kind of the same

[SuperFluff]

İ know exactly what you mean when you Google it! İ was absolutely devastated when I read about it. But everything İ have read on PH says that exercise is the key.İ don't have any problems with my breathing at present. İ can do moderate exercise. İ am 58. İ do however feel like I am slowing down though...but I am getting older!! İ have found breathing exercises useful. Also my physio says a strong core is vital for everything.

The Pulmonary Hypertension charity in the UK said they have a rehab/exercise programme. İ don't know if your GP could put you forward. They could then exercise under supervision.

[NLGA in reply to SuperFluff]

Thank you