A question for the Pulmonary Arterial Hypertension Community

What resources do you wish you had to help manage your or your loved one’s condition, but haven’t been able to find? What would your ideal support resource be, and how would it help?

Answers from the Community

I’m completely satisfied with the Pulmonary Hypertension Association, as well as Phaware and PHenomenal Hope. They are all very supportive and stay up to date on all of the newer treatments.

I would appreciate having a more holistic or a functional medicine doctor that could help me. My current doctors are great, but they can’t give me a lot of advice on other alternate healthcare methods, such as diet, supplementing, anything like that that might be helpful for my condition.

I think it’d be interesting to have some sort of group where people could enter in their condition and medications and symptoms that would pair you with somebody as close to you as possible and just kind of give you like a buddy system, knowing that so many of us are so different.

Ideal support resource. That’s a toughy. Like I said, I love the Facebook groups that I’m in with PAH and PH. And I love our group here in Houston when we meet for our meetings. Like I said, we don’t do that right now because of the COVID, but I guess that would be my ideal is just to have people around you that are going through the same thing you are and to discuss things, just like any support group, just like an AA or a support group like that. It’s the same thing. Grief support, Alcoholics Anonymous, Pulmonary Arterial Hypertension Group. Yeah, I think it would be that, that would be number one for me.

I think the support groups on Facebook have been great. One resource I would like more help with is the paperwork as far as filling out the do-not-resuscitate, and all of the hospital choices, and end-of-life choices, and power of attorney. The local support group did have a person that came to the support group and presented, had a packet of paper that we can fill out, and did a great job talking about it, but it was a presenter presenting to a room full of people. I would like to have a one-on-one person sit-down and go through each individual sheet and discuss it and help fill it out to make personalized decisions.

I think that the biggest resource that could have been helpful would have been a person who has had PH and has lived with it, and would be able to give me a better idea of exactly how things are going to feel, what you’re going to go through, how serious certain things are or are not. So I think that would definitely be the best resource.

I am very lucky in that I have a degree in pharmacology. I knew what the drugs were that they were giving me, I knew why, I had training in how to keep things sterile in the laboratory, so when they brought the pumps out and I had to mix the meds, I knew exactly what I needed to do and how to do it. I wish others could have more training in that. I wish we could tell people, “Okay, this is what you’re taking, this is why you’re taking it.” I remember the first day they gave me my drugs in the hospital in the ICU and they just handed me a pack of pills and said, “Here you go.” And I said, “No, what are they?” And she told me what they were, and I knew from my classes, “Okay, I’m taking this from my heart, I’m taking that from my lungs, and taking that’s a diuretic.” People don’t know. And when they don’t know what they’re taking, they’re not comfortable taking it. So just more education in that aspect would be wonderful.

I guess certain companies that make medications, I think that they should have their own support groups that they do, like in person. So that you can meet people who have the same therapy as you. Because I don’t really know many people that have the same therapy as me. Or they could set up like web meetings or some type of forum that you can type into, that would be great.

I think the biggest resource that we’re missing is how to navigate through the Medicare system and through the disability system and how to navigate what you should say, as opposed to what you really say or how to approach certain situations. There is nothing that’ll guide us on how to get help that’s out there. And we just don’t know what’s there, or don’t know how to get to it. For example, in the state of Indiana, they have to call us.if I didn’t know about to call ahead of time, or if I didn’t know that there was additional help for my caregiver, I wouldn’t know where to look. I wouldn’t know how to look. And things like that, I think need to be more accessible.

I wish there was something locally that my family and I could go to. There just isn’t as far as a face to face support group and people full of information and experience. I believe the closest one is about two hours away from my town.

I’ve had a lot of support from everybody. There’s a lot of support online these days. There are a lot of support groups on social media, particularly Facebook. There are a lot of lung transplant support groups where you can talk to people that are going through the same or similar circumstances to you and bounce ideas off of each other. I do wish the hospital, AdventHealth, had more resources too, apart from the regular followup from doctors. There doesn’t seem to be any sort of support groups at the hospital that meet. I did offer to, I have offered to go back and lead meditation groups, to set up a meditation group at the hospital. But, even though I’ve tried numerous times, nothing was ever followed up with me. So, I think the one that I wish I could have organized would be a support group at the actual hospital because I think it’s very useful for people like me that have gone through it to offer support for other people.

I wish I had a little bit more resources to new medications, new treatments, but because it’s going so fast in the medical world, it’s hard to keep up with who is coming out with what type of treatment. But it would be nice to have a resource that outlined each different pharmaceutical company or lab, and what it is that they’re working on.

I think the resource that I wish I had was a support group. Maybe people who also had the same condition. I found a support group on Facebook now, but I think it would have been easier if I had it when I was first diagnosed because I did struggle with my diet and medication. My doctor had to figure out what dose was best for me because I was getting too dehydrated, which caused me to get ill with my underlying condition. But yeah, I did wish I had a resource of having people instead of just literature.

I would like a book on people’s stories who have the disease, like just different variations of it, because it is so different within each person. But to know what the worst can be and what with the best can be. And what you can and can’t do. When you hear different things about what you can, can’t do, but sometimes people prove them wrong. And I would like that would be a great resource to have.

I would really, really, really love to see an app that can track symptoms, weight, blood pressure, O2 sats where you can write a little note that way when you go to your doctor, you can maybe flag certain days that you’d like to show him, or you can have like a graph, it’ll graph your information for you so that you can have some sort of app to where you don’t have to carry around an extra book or calendar like I do. It’s not real huge but I still have to carry it around. Everyone carries their phone around. So having an app would be ideal because you already carry your phone around and you don’t have to have extra paperwork and you don’t have to worry about losing papers or spilling papers. You mess up your phone, you get a new one, and the app goes right back to it. So ideally I’d like to see an app for pulmonary arterial hypertension.