Pulmonary Hypertension Question.....very anxious.

[puddy68]

Hi Everyone

Thank you for taking the time to read my post. I'm pretty sure I've posted about my PH before, but I'm having an anxious day and thought it might help to post.

I was in hospital a couple of years ago with flu and pnemonia, and an ultrasound on my heart picked up "mild to moderate Pulmonary Hypertension". I stupidly didn't follow this through when I was discharged from hospital, as I was also diagnosed with cirrhosis of the liver at the same time, and I became more fixated on that. [Although I know this is no excuse].

I'm finally trying to get my health in order - I'm seeing a specialist for my cirrhosis, and he has said that by doing all of the right things [no alcohol/good diet/exercise etc] I can manage this condition.

Now I'm doing more research into my Pulmonary Hypertension. I have no symptoms except for shortness of breath when having to climb stairs or a hill. Google has scared the living daylights out of me, however. I saw a cardiologist who said straight up that "my prognosis is not good", but didn't want me to get another ultrasound on the heart [last one 2 years ago when condition was picked up in hospital] until September, and didn't want me to start medication either. His letter to my GP said that my condition was not very severe, yet he still said my prognosis was not good when I had my consult with him [?!]

To make a long story short, my liver specialist has put me on Carvedilol for Portal Hypertension....he said this will also help my Pulmonary Hypertension.

I've organised a second opinion with a Pulmonary Hypertension Specialist at a hospital in Melbourne, instead of going back to the original cardiologist. Have I done the right thing?

Also, can Pulmonary Hypertension be managed with medication etc [I've really no idea how it's managed........I'm hoping Carvedilol is a good start]. What I'm really asking I guess is can I still live a long, productive full life with PH?

Thank you so much.

[Will57]

I was fully diagnosed with PH after undergoing the proceedure "cardio catherization " the reason going through the proceedure was because my consultant wanted me to have a second operation LVR but the cardio showed too much pressure on my heart (PH) and i would not survive the operation. Now on 4040mg Of tadalafil to help my condition of which there is no cure.

[Will57 in reply to Will57]

40 mg not 4040

[Alberta56]

Sorry; I know nothing about PH, but good luck in getting your health problems sorted out.

[Swizzy]

It is so wrong that you have been left to worry by contradictory messages to yourself and your doctor from the cardiologist. None of us are medically qualified on this forum to be able to answer your questions about PH. You are wise to have made an appointment with a PH expert. Make a list of all the questions that you want to ask. I hope that they will put your mind at rest as to the way forward.

[Will57 in reply to Swizzy]

do you mean my message is contradictory

[Swizzy in reply to Will57]

No. I meant that the cardiologist's telling puddy68 that the prognosis is not good and then writng to their GP that it is not severe are contradictory messages and very worrying to puddy 68. Nothing to do with your reply.

[AngieB72]

Hi, I have PH and was diagnosed 8 years ago. My PH is stable due to being managed by Sildenafil and Macitentan. I believe the medication you have been given is a beta blocker which can be used for hypertension but I’ve never heard it used for pulmonary hypertension (two very different conditions) but saying that I’m not medically qualified. You need to have regular echocardiograms to keep an eye on your heart pressures and a right heart catheter (RHC) to confirm diagnosis. Check to see if there is a pulmonary hypertension specialist in Melbourne that you can get referred to. Good luck.

[Millyboo710]

I remember telling you that my PH is managed by Sildenafil and 6 monthly echocardiograms. None of us is medically qualified to advise you.

I also pointed out to you that the fact you were not being fast tracked for scans and medications was encouraging.