I don't mean to sound rude, but does it matter? Whatever time we have left, we should use it well. I was diagnosed in 2019. I was told the avg. length was about 5 years. I think every case is different. There are people on this site that have lived for 15 years or more with it. Some have died earlier than 5 years. We don't any of us know how long we have and that's the way it should be. I did not look on this as a death sentence, but instead it's a wake up call to smell the roses. Keep active as long as you can, keep your mind active, have a good attitude, and work with your doctors. You will be fine. Hitting the panic button will not do anyone any good at all. Just make the best of your life, what ever time that is, and know you did your best to be the person you want to be.

I don't know what your name is, but please do not believe everything you read! I've already added you to my team. On this team you will find people that are just going thru being diagnosed to those of us that have had PH and/or PAH for over 10 years. Even those with stage IV PH and/or PAH can live well over ten years. Personally, I think whomever puts those articles out that say those that are being diagnosed with PH and/or PAH are just trying to scare the hell out of people! Try to relax and enjoy the day.

@A myPHteam Member I feel much the same way. When I was first diagnosed, it felt like I had been given a death sentence. While I still recognize the seriousness and potential risks associated with PAH, I try to manage it like anyone would manage a chronic disease. I focus on what I can do rather than what I can't do. If my PH specialist recommends a new medication, I have no problems giving them a try. I try to stay as up-to-date as possible with new medications coming down the pike and new research.

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A myPHtea...

My daughter was dx at 18 months old. I was told to “make arrangements” for her at the age of 2. She is one of Dr Robyn Barst original patients. We have contributed to the genome project. She is now 34 years old and the momma of a healthy, brilliant 6 year old daughter. She has been through more then there are words for. I could not be more proud of her. She NEVER gives up. As the momma, I worry. She over does. That’s what mommas do.
*We discovered she has genetic PAH. My family is multi-generational PH.
I was dx 7 ish years ago. She is always insightful. Knows the ropes. She helps me keep going.

JenniferHolotankoRineer, I just added you to my team of very supportive people that are more than willing to help in anyway that we can. Please do not believe everything you read. On this team, we have people that are newly diagnosed and don't know which direction to go because doctors don't explain a whole lot to you in the beginning. Then there are a bunch of us, myself included, that have had PH and/or PAH for 10+ years, we have been thru a lot with this crummy disease. Low energy and being tired all the time, unfortunately, are a side effect of the disease and is normal. This disease will completely change your life. Don't be afraid to ask all the questions you would like, one of us will have an answer for you.