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Real members of myPHteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

I Was Diagnosed In Aug 2022. Each Day I'm Waiting For Symptoms.

I Was Diagnosed In Aug 2022. Each Day I'm Waiting For Symptoms.

so no symptoms but I feel like it's going to hit me because I was diagnosed. It's like waiting for a bomb to go off, but it doesn't. I'm trying to take it like a blessing but it's got to eventually surface. Can I go years before it progresses, or what, sounds like there are no common stories, we are each unique and when it's my time I will surely know.
Mary

posted November 18
A myPHteam Member

Hi CrisinCincy, I’ve had symptoms all along but I also have heart problems. Whereas my husband was diagnosed 12 years ago. Just found this out. He has had no symptoms until this past year. Now his symptoms are bad and his heart damaged with low ejection fraction and kidney damage. Don’t know if untreated PH is culprit or not. But many doctors see this diagnosis when checking for something else and just ignor it. That happened here. So yes, everyone is different but try to get a pulmonologist who specializes in PH is your best bet. Do as early as you can so someone can follow you. Good luck and God bless.

posted November 24
A myPHteam Member

Mary, what test was used to determine you had PH? And did they tell you what your pressure number was? If it is mild PH, you may not have any symptoms. Good thing! You could go many years before you realize it has progressed a bit. You are so correct about each of us have to experience this damn disease differently. One of the overriding suggestions to the newly diagnosed as well as us “old timers” is to stay as active as you can, for as long as you can. PLEASE don’t dwell or worry about when the other shoe drops. That time spent worrying could better spent staying physically and mentally active. Ask your doctor to recommend a pulmonary rehab program so you will learn the basics for living with this. Ask the doc how much you should exercise; some of us have weight limits so as to not put a strain on out heart. We’re all here for you.

posted November 19
A myPHteam Member

Mary: It is very good and a positive thing to ask the questions on your mind. Don't dwell on them --get 'em out & we will honestly reply. My verdict is the latter. We have so many different symptoms of PH, which aids in the difficulty of the diagnosis. Example: one of my symptoms is falling. Even though on 2 different occasions I've broken v vertebrae,
fx my wrist, broken nose, concussion, massive body bruising, etc. Dr.s never considered PH. If you suffer with anything look at all the possible symptoms of PH. Maybe you d/n need to wait for that other shoe to drop. Not all of our symptoms are awful. But, if you get dizzy, nausea, weak, tired, sleepy or something else you may be experiencing
PH. We are all unique and so goes our PH stories. May God continue to be with you and cover you with Blessings.Patv

posted November 18

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