A question for the Pulmonary Arterial Hypertension Community

What tools or resources have you found most useful regarding your or your loved one’s condition? This could be a website, a specific organization, or an app for your smartphone. What makes this resource (or resources) useful to you?

Answers from the Community

Pulmonary Hypertension Association, as well as PH Aware and PHenomenal Hope are three organizations that are very helpful as well as the assistant spun that assists me with a grant to pay for my medication, which is right at $10,000 a month. Facebook is also a good place to find other PH patients that can relate to what I’m going through as I can also relate to what they are going through.

I have found a lot of Facebook groups that have been very helpful, along with the link to the Pulmonary Hypertension Association has also been very helpful on getting information, and just doing some Google searches and looking up on PubMed different treatments and information.

Google generally is a resource that I use often, but also my online Facebook support groups. Just because it’s always fascinating to get advice from people who have experienced what could be the closest to the same as I can get, knowing that I have yet to find anyone with the same issues and response treatments and everything that I have. They’re all different, but it’s interesting to find people that are similar.

Well before the COVID started, and before quarantining and everything, we had a PAH group downtown in Houston where we all met up. There’s about 20, 30, depending on the day. About 20 people that would show up every… Well, I think we met every month, last Saturday of the month. And now we can’t do that. Online, I’m on quite a few Facebook groups with PH, PAH, everything, global, local, Houston. So I get on there discuss topics. It’s good to have a support group like that, that’s going through exactly what you’re going through. Or has questions like you’ve had questions before, and it’s good to help people. And it’s good to get advice from them on what they’ve been going through, so that’s been very helpful. It’s Facebook groups and also our local PAH group here in Houston. We’ve done a few virtual meetings, but not the same.

There are a couple of support groups on Facebook that I find very helpful. And one of the things that really helps with them is my friends are great and they’re very supportive, but they don’t always understand and they don’t always understand some of the challenges and issues, where the support group they understand because they’re going through it, too. They’re living it, so they understand the perspective that you’re coming from and they share that perspective. So, the support groups on Facebook and in-person have been the most useful regarding the condition, because they are coming from the same perspective and they really understand.

The best help that I have had has been from the Pulmonary Hypertension Association. Their website has up-to-date information. They’re essential resource for all of the information about pulmonary hypertension that you need and they also offer support services, like support groups, which are really, really helpful because it’s hard to connect with other people with this disease cause there are so few of us.

My greatest resource is the Pulmonary Hypertension Association. They’re absolutely wonderful. When I was first diagnosed and I was terrified, there was actually a support group in my city, and I would go over there once a month. And I felt like these are people like me. I didn’t have to explain my condition. I didn’t have to explain what I went through. They went through it, too. And it was such a great community. I love going to the conferences. I’ve been to two now, and walking in with all those other people who have exactly what you have, and it’s like seeing old friends again. It’s absolutely wonderful. And to see the supporters and the caregivers and the doctors all there together for one cause, it’s absolutely wonderful. I love the Pulmonary Hypertension Association.

Pulmonary Hypertension Association is probably one of the best ones. They give you a lot of information about the disease and they can set you up with others who have the disease, and it’s just a very good tool. Another one, I guess, is support groups that are local to you. Those always help because you get to meet a bunch of people that are the same as you.

My biggest resource and I’ll share the one [PII redacted], Pulmonary Hypertension Association. Without him in that organization, I don’t know what I would do. They are so wonderful in support, in education, in just doing whatever they can to help whatever you need, can’t say enough about them.

I have to say that I have had the best turn out as far as getting information and support and things through Facebook support groups, specifically for pulmonary hypertension. There is a Pulmonary Hypertension Association and I have turned to that to answer some questions. However, I find the experiences of other people who are also going through what I’m going through to be the best and most accurate place to receive information.

As I mentioned earlier, I’m part of a very large yoga community in central Florida, and I have always meditated, and that has been my biggest comfort and help. I don’t necessarily use any websites. I just sit there and maintain myself. I also use visualizations, when I was in hospital, going through the surgery and the recovery and leading up to it. I would do lots of visualizations, visualizing myself being able to do everything that I wanted to do as far as walking and hiking. Picturing healthy lungs, doing everything without being out of breath.

The best resources have been my doctor’s office and the nurses there, as well as online support groups through Facebook. There are pulmonary hypertension support groups that have been extremely resourceful in being able to see others’ responses and how they’ve been treated so that maybe you aren’t so afraid of the side effects you might be having because other people have had it too.

A few several resources with my condition. Google is a good resource. I’ve used the Mayo Clinic’s website. An app that I’ve used, MyFitnessPal and also Fitbit. I have a Fitbit, which helps me with when I’m working out or drinking water. I log that because I can’t drink too much water. Those are some resources that have been helpful for me.

I like the pha.org. I actually went to two their conventions or whatever you call it. I can’t think of the word right now. But it’s where you get together and learn about the disease more. And if the other people have the disease, and get to meet them from all over the world. And another thing I do is a support group. I run one, and I’ve gone to them, and I think that those are helpful. And even the online ones, like a Zoom one is even good.

I am a member of the Pulmonary Hypertension Association. I was diagnosed in January of 2018. By March of 2018, I had started my own support group because there was not one around here. And I use that tool, the support group, I use the Pulmonary Hypertension Association website because it gives you a lot more accurate information and not like a Google search where you get worst case scenario information a lot. Because there is no app yet, I use a calendar, like an appointment book, to write down daily blood pressure reads, oxygen stats, food that is making me sick, food that I can no longer eat, so that I know what to avoid and what I can and can’t have.