A question for the Pulmonary Arterial Hypertension Community

Who are your biggest supporters specifically when it comes to your or your loved one’s condition? For example, your doctor, friends, family, or someone else? And what are some examples of how they have supported you through this journey?

Answers from the Community

Being a single mom, my son was my biggest supporter at just 16 years old, monitoring my sodium intake and going with me to doctor’s appointments. My parents as well were some of my big supporters and always wanted to go with me to doctor’s appointments so they could learn about my health condition as well.

My husband is my biggest supporter. We use the zebra as a mascot of sorts. And he does not have a problem, or he’s gotten accustomed to me wearing zebra print every day to raise awareness of pulmonary hypertension. My daughter is also a huge supporter of me. And our son was, he’s living in another state now, so we don’t see him. But I have wonderful friends who support and do anything that they can for me, but my spouse of 45 years is my biggest supporter and greatest assistant.

I get a lot of support from my Facebook group. My husband is supportive but he really doesn’t understand the disease and the effects on it. My parents are very supportive. But I get most of my support from friends.

My biggest supporter would be my husband. He’s been there with me since day one of diagnosis, been to every single doctor’s appointment and procedure, other than one minimal doctor’s appointment. Quit his job when my doctor said that I shouldn’t be going to work, figuring that if I shouldn’t be in a public setting, he shouldn’t either. And he’s always been there for me.

My husband and my aunt are probably my biggest supporters and have been there with me throughout everything. My husband, he has been awesome. He is a wonderful man. Would do anything for me. Would even take this disease from me if he could. I can’t ask for a better support system than that. He’s just always been there for me. He knows I have good days and bad days, and he steps up on the bad days and lets me have my good days. And we have fun.

My friends are my biggest supporters and some of my friends have helped come up with ideas to help me manage everyday life. Also, the support groups are very helpful. There’s some people in some of the support groups that have great ideas, like one lady in the local support group offered a backpack for the oxygen, so that before I was able to get the POC and it was on the actual oxygen tanks, she offered me her backpack so that I can be more functional and I could live more normal. And so between my friends in the support group, they’ve been very helpful. And sometimes when I get frustrated that trying to find an alternate way to do something, my friends are great about coming up with solutions. So it’s very helpful and appreciated.

My biggest supporters have been my family. My family who have come to doctor’s appointments with me, which has been extremely helpful and helped me to manage medications and things like oxygen. And also having a supportive girlfriend was helpful as well for more like moral support, daily activity kind of stuff.

Everyone has been really supporting. When I was first diagnosed in the hospital, I remember one night I couldn’t sleep. Then my husband came in and just sat down and started reading, and I thought, “Okay, finally I can sleep,” because I was comfortable. My husband has been a great support. My parents just coming in to say, “Hi, here we are.” They took care of my children while I’m sick. I don’t have to worry about my kids. I know they’re very well taken care of. My doctor is always understanding. He’s always willing to try new things. My faith plays a big part. Without that, I don’t think I would have the outcome I have right now. My friends support me. They all know when I’m having a bad day, and they say, “Hey, take it easy,” remind me that I do have this condition sometimes when I overdo it.

My doctor has always pushed me to the limit because he knows I can do it, so he’s a huge supporter. Anything that I want to do, he always asks me goals in the beginning of the year, and then we try to accomplish those goals by December 31st of every year. And the goals have really helped me to strive for something more, even though I can’t really do much, but seeing some type of progression always helps, progression with the way you do things, if you’re increasing what you’re doing every year. And my family has been my biggest supporter too. They go to appointments if I need them to, give me rides to appointments and they are always there when I get information and stuff.

My biggest supporters are my family and my doctor, but mainly family. They take care of me. They do everything for me on a day to day basis. They help me get dressed, they cook for me, they cleaned for me. They do everything for me. If it wasn’t for them, I don’t know where I would be. I probably wouldn’t be alive for them, without them. My doctor helped push the state that I was living in at the time to get a surgery that without I wouldn’t be here. And I had that surgery in 2012 at the Cleveland Clinic. And it’s two states away from where I was living and my sister drove every weekend to be with me. I cannot say enough about my family. I’m sitting here watching my other sister cook dinner. And if it wasn’t for her, I wouldn’t eat every day.

I have an amazing support team. My church family, my parents, my sister, my adult children. Really just knowing that they are there for me if I have anything that I’m struggling with physically. I never have to worry about having help, I have three grown boys who are always willing. As far as emotional support, I have a team of people that care about me, that pray for me, who talk with me, and also some girlfriends that are in support groups from all over the United States who also have the same disease, who are encouraging and share their experiences with me and help me get through the day to day stuff.

Obviously my biggest supporter has been my wife of 32 years, Lorraine. She has been there through thick and thin with me, through the good times and bad times. As you have good days and bad days so I could tend to be a little bit snappy at times. I do belong to a very large yoga community in the central Florida area and the support I received from them was absolutely tremendous. One of them started a GoFundMe account to help mainly with expenses for when I tried the STEM cell treatments and we actually raised about 24, $25,000 in probably about 14 to 21 days. The outreach and outpouring of love was just huge. My two sister-in-laws over in England, once I’d had the surgery, they both came across and stayed with us. My one sister-in-law came and stayed for a month over Christmas. When she went back, my other sister-in-law came and spent three weeks with us to give my wife some rest so that she could go back to work to obviously pay bills.

My biggest supporter, when it comes to my condition, is my mother. She has been my number one fan. She has driven me to doctor’s appointments. She spent the night with me in hospitals many, many, times when I’ve had issues with my underlying condition. I wouldn’t be as strong as I am now without her. For example, I just had a knee replacement last Monday and she’s been helping me cook, helping me get to the bathroom, helping me clean myself, shower. She’s always there for me, so she’s my number one supporter.

My mom has been my biggest supporter. She does lots of research into things and to find out how I feel and new medications that are out there, and reads a lot on it and probably knows more about it than I do, actually. And my sisters are big supporters too, and they just understand that I’m not feeling that well and that things aren’t the same. And they explain to their kids also why I’m laying down, taking a nap. But I have a support system and I have my family. Friends kind of fallen off the wayside because they don’t understand it and think it’s a really hard disease for people to understand because they don’t see it. It’s just there.

I have a great medical team that takes care of me really well, including my PH specialist, my primary care physician and palliative care. They all check in on a regular basis. I see them on a regular basis. Each one has their own thing that they handle, that way not everybody has to handle one thing at once. Some are more comfortable with other things to handle than that, and I have a great network of friends and family that support me. I don’t ever have to worry about calling anybody for help. If I call one person and they’re not available, I just keep moving on down the line. And I can always find somebody that is there to help me. I currently stay with my mom and she is my full time caregiver. She does all the heavy lifting and does all the real strenuous activity that I have a hard time doing. And it’s been, it makes it more manageable for this disease.