shelley8. So much like everyone else, when I got the diagnosis I fell into more depression. Life had already been unkind to me in many ways, but I have this awful habit of soldiering on. I blame my military dad with the 'do or die' attitude. Famous advice up to then was 'But has it killed you yet?' and 'I think you can keep going, kid. Ya ain't dead yet!' I was seldom inspired by any of this. But what I did enjoy was proving the experts WRONG. I was never supposed to get around at all after my motorcycle wreck. I still have both legs, still walking~ But truth is that my leg is still broken. I don't care. I was not supposed to have another child after our first son did not live, so I did. I was not supposed to get over the depression or function outside a supervised environment over it. Always have to take anti-depressants.. guess what? Been YEARS since my first diagnosis with PH. Honestly, I have overstayed the expectation. How? Why? I'm mad that someone else decided when I had to give up. That's my call, no one can decide it. I live HERE, I know ME. I get to CHOSE. So I chose to live. My time, my terms. Don't let anyone decide for you when to give up. No one has the expiration date on the bottom of their foot: YOU decide when you give up, SO DON'T GIVE UP. Keep at it. Fight, try, push back. Do what you can today, so you can do it tomorrow. What you did not do yesterday, try today, Try to surprise yourself. I sing, for the lung exercise and control. I ride the exercise bike for stamina;. No one can balance my diet but ME, so I do it. If I cheat, who am I cheating? Just me alone, and maybe my family who has gotten so used to my fight. I do it, they just get out of the way. Where do you start? Here: This starts NOW. What can you do? More than what you did an hour ago. If you can only put away the dishes, do that. Tomorrow do more. Even if it only one more, so do one more. Disabled? So am I, do one more. Depressed? So am I, do one more. Busted? Broken? In a wheel chair? So was I: find an inventive way, but DO IT. Because dear, in the long run, there is no magic wand. No one has the charm to make the problems vanish, make you healthy, stronger- no one. Only you have the will power to try it. Try to Do it, Make it happen. For you. No one picks their end, and only you can decide to keep going, dear. Work at it, one step at a time. One breath after the next, one more fight. GET ANGRY that anyone tells you 'you are going to fail'. WE ALL WILL, one day. Just say not now, not yet. Keep swimming. Keep walking. Talk it out. Make your choice. GO with it. Because you can. Most of us focus on the cant's. Work on the cans. Yes, you can, and a lot of the time it starts as ~you can TRY, AND THEN YOU DO. No one chews your peas for you. What can you do? You don't know, unless you try. One pea at a time.

My advice is to ignore the data. So much more is known about PH then in the past. In many cases it is being diagnosed early. There are also several new medications available and many more on the horizon. When I first saw the statistics, I freaked out too. Focus on determining the cause so that you can start on a treatment plan that is appropriate for you.

Forgive me if I missed it, but I dont believe you said you had a PH specialist, just a respiratory clinic. I tell everyone this because this advice saved my husbands life. He would be dead had we not followed this instruction I am about to tell you. If you have pulmonary hypertension, it is ABSOLUTELY CRUCIAL THAT YOU FIND A PULMONARY HYPERTENSION CLINIC. My husband was diagnosed with PH 2 years ago. For 2 years, we went through numerous doctors, pulmonologists, cardiologists, neurologists and none of them could figure out what was wrong. Finally I learned about the PH specialists that are out there and fortunately we caught the diagnosis in time and my husband finally got the type of treatment he needs. I cant stress it enough, find you a specialist. Phassociation.com should have a list of specialist. There are 5 groups of PH and depending on what group you are in, will depend upon how serious it is to get a specialist ASAP. Trust me on this... please take what I say as my love for people and I want to see you get better. There is a light at the end of this dark tunnel, you just have to trust the train conductor. Best wishes

Shelley8, first like has been said here, get a good medical team, get the correct diagnosis with the proper testing, what you read by checking Google isn't really up to date, so much has been improved in treating PH/PAH the last 5 years but you need a PH specialist to verify things for you. I have very mild PH which was caused by Mixed Connective Tissue Disease (autoimmune) which caused Interstitial lung disease (ILD) and pulmonary fibrosis, the very mild PH showed up last year, but I have found that exercise has kept my progression of these diseases to a slower rate. All my specialists continue to tell me that my weight lifting and treadmill workouts have been my best medicine. I am being treated for my ILD with an immunosuppressant, mycophenolate. This group has taught me so much about advocating for myself, comparing notes with the experience of others, asking any question that runs through your head that concerns you, we have all felt it. Keep moving, pulmonary rehab may be a big help for you if it is available, you can ask for it. This group is here to support you, as we have been supported, we offer positive vibes and prayers for each other. You are not alone and we understand. Just let us know how we can help you!! Sending hugs and prayers!!❤️🙏

@A myPHteam Member, I understand that you are scared. We all were or still are, however as Julie, Heather and Cindy mentioned, once properly classified into which group, things will get better. Read some of the stories here, you will see people are living longer than before with the right treatment. I will keep you in my prayers and thoughts 🙏 . God Bless you and may he encourage you and give you strength during this time.

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