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 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?
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puddy68
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Please do not Google it gives the worst scenario and it cannot examine you does not have your personal records but the Doctors that are taking care of you do so keep of Google as it will make your anxiety so much worse as I have anxiety and I am guilty of looking on Google and do I ever feel any better when I do well the answer is no so please resist the temptation
A lot of heart conditions there is no cure but there are medications changes in lifestyle that in lots of cases can enable people to continue to live a long and happy life try staying focused on those thoughts
Maybe start writing down a list of questions you would like to ask when you go to your appointment as when we are anxious we can forget and I hope and suspect you will be taking someone with you as it is always good to have someone else there with us again when we are anxious we can forget or hear something different to what they say because are anxiety takes over but having someone with us can then put us right if we do as they heard it all to
I hope you will try and take each day at a time , keep of Google , have faith in the care you receive and hopefully this will not feel as overpowering as it does at the moment
I hope someone else that has the same condition will see your post and share their experience with you
Hi BeKind28. Thank you so much for your reply, I really appreciate it. Thank you so much for your advice, particularly about staying off google and taking a list of questions with me to the cardiologist. Thank you for reaching out to me. God Bless.
I know how scary a sudden discovery of a heart problem can be, I had same reaction. I wouldn’t google for info, listen to your doctors who are telling you that the right medication will give you a normal life. Be positive and enjoy life with your family.
After living with a hole in the heart for 68 years I have been left with Pulmonary Hypertension. I was referred to one of the Specialist Centres (Royal Free) who review me at 6 monthly intervals. They have put me on a daily dose of Tadalafil and I no longer notice the breathlessness that PH can cause.You might want to ask you Doctors for a referral to one of these centres.
From my experience the PH team are very good and will do a lot to put your mind at rest.
I see this is the second time you have posted. In my previous post I said that although I didn't have a lived experience of Pulmonary Hypertension, I had met other patients with PH.
I am glad that another forum member with Pulmonary Hypertension has replied to you.
( I also have my care at the Royal Free Hospital in London )
In my previous reply to your first post, as you are based in Australia, I sent you a link to an Australian Pulmonary Hypertension support group.
On their website you'll find a list of specialist centres.
Perhaps ask your GP to refer you to one of these centres?
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