This group unites PH patients, caregivers, researchers and medical professionals in a platform to discuss the latest research and medical advances related to pulmonary hypertension. Information shared in this group is public.
This is an emotional topic but one that weighs on the minds of most Pulmonary Hypertension patients and their caregivers, the fact that PH is a life threatening disease. What are your thoughts on the information gathered in this study linking pulmonary arterial pressure and mortality risk? What has your medical team told you in comparison or agreement with this study?
Yes, very emotional topic but something that is often discussed living with such a life-threatening disease like PH. My PH doctor often dismisses some of these studies as he says we are all individuals and our bodies react so different to therapy as well as other factors. But, I also have important things in place if something were to happen. It is just part of living the PH life, unfortunately.
Because of this, I often read studies like this while keeping an open mind. 14 plus years living with PH, I have to have this open-minded attitude, while I continue to have hope.
I like what Jen says. Pretty much spot on and yes, my doc says the same things and I read formal studies continually. I’ve been diagnosed for 6 years now and am doing better than I was when first diagnosed with Groups 1 and 2. Just in RVSP alone I started out at 41, then went down to 35, then 33 and at last ECHO I was at 23.8. I attribute this to losing 60 lbs and gently upping the exercise. I also watch the quality of what I eat, eating fresh foods and only a little meat and dairy as I’m seeing liver involvement now, no thanks to former bad habits. That said, those of us with HFpEF PH have no real medical treatments. Fortunately I’ve never been diabetic. Whatever our status or Group we’re not getting any younger and yes, it is very important to have affairs in order and medical directives in place. At age 75 I have made it very clear to my doctors how I want to be treated as this reaches end point. I also plan to keep doing what I’ve been doing and looking to live to 80 or more just to keep being contrary!
@jenc and @beverly-duffield I keep an open mind when reading these studies as well. I have known people with high pressures than mentioned who have lived with PH for a long time. What I have found over the years is that PH patients share as many differences as they do similarities. For example, my son was considered a typical statistic because he only survived 5 years on treatment before declining and needing a transplant, yet there are so many that live far longer than that without experiencing the decline that he did. For our members who have just been diagnosed I feel that this is important to point out, that one person’s experience might not be yours.
What I do like about these studies is that even anything, they tell us that there are attempts being made to understand this disease better and to help with diagnosis, treatment and hopefully someday, a cure.
Thank you both for your input! Your personal thoughts and experience is so helpful to others!
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