-
Hello everyone！
I’m new to this forum. I’m currently taking care of my family member who has pulmonary hypertension. It’s been a tough journey emotionally and physically, and I’m really hoping to connect with others who understand what this is like—whether you’re a patient or a caregiver.<br data-start=”699″ data-end=”702″> Thanks for having me here.☺
-
5 Replies
-
momogo, welcome to our forum. We are all in your shoes, whether patient or caregiver. I have PAH and this disease is NOT for the faint of heart. I also have pretty bad RA so most days I don’t know which way is up. Some days my RA is awful and the PAH is manageable then another day (or even in that same day) everything switches. Can you get any relief help so you can take care of yourself for at least for some time? Tell us more about what you’re going through and maybe some of the bright lights on here can direct you to making this journey easier for you. Best of luck.
-
I’m a caregiver and it’s heartbreaking to watch my family member suffer with this disease, he can’t catch his breath every day and it’s really sad to see that his activities are limited and his whole body isn’t doing well; he has more mood swings because of his illness and it’s been a trial for me as well.
-
-
In my experience the key to PH therapy is to become a very, very active participant in your treatment. Don’t think of your MD as the great oracle delivering sage wisdom from on high. Monitor your progress ACTIVELY, keep a written (or electronic) log of everything, including side effects and share it ALL with your pulmonologist. Since 2019 my pulmonologist has been Dr. Daniel Lachant at the university of Rochester medical center, acknowledged as a “Center of Excellence” in PH therapy. Read online everything you can about PH and bring questions to your MD. Ask for explanations of anything you don’t fully understand. Even though we’re rather limited in the varieties of medicines we can take, if something you feel isn’t working bring it up with your MD. We are not passive receivers in PH. We absolutely must be very active participants in our own care. This is the key. Be strong, have faith, and be involved.
-
Yes, being active with the doctors is the best way, other than that, all I can do is be there and be patient with my family
-
-
Hello, I also, am fairly new to the forum. But, was diagnosed 13 years ago with PH. I am currently taking Letairis, adcirca, and a week ago I started on Winrevier. Gladly share any experience I have had on this PH journey.
Breath On,
Cindy
Log in to reply.