Lawna, I like this page, it gives me a place to ask questions, and find advice.
My family tries, but they don't quite understand. My doctors try, but I only see them every 3 to 6 months.
God and prayer gives me encouragement.
If you are interested or it is available there are in-person support groups around if you are in an area that is accessible. I live in a rural area so travel to a city or out of state isn't practical. Check online or the nearest ph hospital for information. There should be something available.

My clinic recently started hosting monthly support meetings. The 3rd one is coming up in 2 weeks. I don’t really feel I get the support or understanding I would like from friends or family. Even my sweet husband, who is maybe the kindest man on the planet, frequently just doesn’t “get it”.

I go to an in-person PHA association sponsored support meetings in our area. People from all over Iowa come, mind you with this disease being rare, there still isn’t that many people. I found out the support group and it’s meeting days and the contact for the coordinator on the PHA association website. They have information for groups that meet online, groups that meet in person and they have a hotline. I’ve not called the hotline, but my understanding is that the hotline is staffed by other PH patients.

Here is a link, if you scroll down it has events with a list of upcoming meetings and the hotline number. If you click on a meeting your interested in, it will give you more information about that meeting.

https://phassociation.org/

Hope this helps. I’m not in this site regularly during the academic year as I teach middle school and working with this disease is a challenge, but I’m happy to help anyway I can.

Pulmonary Hypertension Association

https://phassociation.org/

This is my only support group! Other than my family! ❤️👍🙏

I belong to a group that meets once a month in my area. You might ask your doctor if they know of any groups in your area. Some clinics also have support groups. It did take a while to find one, but I wasn't actively looking for one. Yes, I feel like I fit in. Good luck.