Hi there. I've been diagnosed with mild to moderate pulmonary hypertension. I have no symptoms except for shortness of breath when climbing flights of stairs or if I have to walk uphill for some distance. I went to ED on Monday with chest pain [turns out it was a panic attack], but they did blood tests [heart related], chest xray and ct scan on my chest. Nothing showed up out of the ordinary in these results, except for fibrosis/scarring in my lungs from sarcoidosis, which I've known about for years. Doctors think this has caused the pulmonary hypertension, which was picked up 2 years ago when I was in ICU with the flu and pneumonia, but for some reason I did not follow through after receiving the diagnosis. I also have cirrhosis of the liver with portal hypertension which I've just googled can also cause Portal Hypertension.
I am now in a flat panic about this [I've got a referral to see a cardiologist next Tuesday]. I've been googling about pulmonary hypertension, and I'm convinced I've only got a couple of years left, according to many websites. The doctors at the hospital have said that there is no cure, but the condition can be managed with the right medication. I don't know who to believe and I can't stop crying and can't leave the house [I also have a severe anxiety disorder]. I don't want to die and leave my son and husband. Could someone please, please help me? Any information or help/advice would mean the world to me. Thank you so much.
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puddy68
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Stay off Dr Google unless you have a good knowledge of your conditions and treatment from doctors. There is too much doom and gloom on the internet, it’s a manageable condition with medication. I have accumulated several diseases which are not treatable but manageable and I’m still getting out and about and doing things all be it with a mobility scooter and oxygen bottle. I go to a weekly group of hospice patients and we all a vast selection of conditions and have been managing for several years. We are all keeping happy and cheerful and there is no discussion on prognosis.
I hope pulmonary hypertension is not a short cut to an early grave. Keep calm until you've seen the pulmonologist. I'm sure he will be able to reassure you that with the right medication and sensible living you will last for many years. God bless. xxx
I was diagnosed with PH 7 years ago caused by my PF. It is managed with medication and my heart is now ‘normal’ because of the long term medication. You need to be referred to a centre of excellence for pulmonary hypertension, I think there are about 7 or 8 in the UK - ask about this at your next consult. Stay off Google and join PHUK for much more specific detailed information.
Thank you so much, AngieB72. Does PF stand for Pulmonary Fibrosis? [Excuse my ignorance!] I'm in Australia, so I'd need to find the equivalent to a centre of excellence for pulmonary hypertension. Thanks so much once again. God Bless. Oh - one other question [sorry!] - I think it's terrific that your PH is managed my medication - is it really possible to bring your heart back to "normal', because I have read that PH is incurable. Or did you mean that because of the medication, your heart is coping "normally" now? I'm so sorry for all of the questions, it's just that this is all new to me and I'm very anxious. Thank you so much once again.
To answer your two questions yes PF is Pulmonary Fibrosis, mine is caused by the autoimmune condition Mixed Connective Tissue Disease. Also my heart is only normal now due to the medication, if I came off it the pressures would increase again and my heart would no longer be of a normal size. I am on it for life. I’m sure your pulmonologist/cardiologist will be able to guide you on how you can get the appropriate treatment. I am on Sildenafil and Macitentan but there are other medications that are used, it is finding out what is right for you. Quite happy to answer questions.
Thank you so much for your reply [again!] AngieB72. It is so reassuring to know that with the correct medications quite a bit can be done to manage this condition. Thank you so much for giving me hope.
I’ve been off the forum for quite a while but am back now and have just seen your post. I was told a couple of years back that I also have pulmonary hypertension, mild in my case at the moment. Like you, I googled it and had a fit at the prognosis! (I am also an anxious type) I then found a Facebook group for the PH association UK and discovered people can still live a good life with the condition and far exceed the time span put out by Dr Google! As your doctor says, whilst there is no cure, there are ways to manage the condition, with medication if necessary, diet and lifestyle, etc. that means one can still lead a good and full life. The key seems to be finding a doctor who specialises in the condition. Hopefully your cardiologist will be able to point you in the right direction for that.
Hello I am sorry to you have been diagnosed with Pulmonary Hypertension. My son has it, secondary to another condition. His health is well managed by a U.K. specialist centre.
Have you been in touch with the phassociation.org ? Perhaps there is country wide one in Australia for you ?
Thank you so much, Pauline. I'm so glad to hear that your son's Pulmonary Hypertension is well managed. That must be such a relief to you. I will look at the link you sent me now. Thank you again and God Bless.
Yr biggest problem sounds to be yr anxiety.its awful to deal with.do u have help with it?Once it's under control,u will deal better with it other diagnoses.
Every mindmatters are excellent - u can find details online,and they have other helpful contact nos too
Thank you Patk1. I agree that I have to get my anxiety under control and am in the process of sorting through this with my GP. Thank oyu so much once again and God Bless.
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