Lynn Bastian is a long-term pulmonary hypertension survivor. Though she was diagnosed over ten years ago, Lynn discusses how she continues to learn all she can about this progressive, rare disease and why it’s import for patients to educate family, friends and medical professionals and make them #phaware.
Transcript:
My name is Lynn Bastian and I’m from Montgomery, Illinois, which is southwest of Chicago.
I was diagnosed ten and a half years ago with Idiopathic Pulmonary Hypertension, and have found a whole new world. Having never heard of it before, as I think most of us when you’re diagnosed, it’s like, “Oh, I don’t know what that is”. I’ve learned a lot in the last ten years, and I feel very grateful for all the different medication and resources that they have now.
My daughter and I went to the Step Up Chicago about three years ago, which was the first time I had met anybody else with PH. I’m in two support groups. We’ve done some fundraising for PH awareness. I’m trying to advocate that as much as possible with doctors or anybody. My Facebook page, I’m sure people are going, “There she goes again”. The more people who find out about this, the earlier that it can be treated, the better off for all of us.
Where I live in Boulder Hill, it’s not a huge community, and I see a primary care physician there, obviously, but when I was first diagnosed, the cardiologist I was seeing wanted me to go to University of Chicago Hospital, and see Doctor Rich. She said, “This is the guy that you need to be treated by”. I started going to UCH, but I didn’t know who the other people were in the waiting room. I was not resistant to support group, but everything was far away. It took a while for me to meet anybody else, because it’s overwhelming.
It’s hard to describe it to other people. They don’t know what it is you’re talking about. Even now, my family, they know there’s no cure for it, but I’ve been looking better, and feeling healthier, and I’m able to do more with all the treatments I’ve been taking, and it’s like, “But I’m not going to get better”. This is just slowing down the progression. They don’t understand. I didn’t really understand. It’s progressive, because you’re feeling better, and then it’s like, “Now I’ve got to do this. Now I have that”. It’s a learning process and you can’t ever quit learning. There’s always so many new things to learn about, and help each other with.
That’s the best part of connecting with the people is finding out you’re not alone, and even though our disease is a big umbrella with lots of little things underneath it, so, “Mine isn’t the same as yours, but we have things in common we can share”. If I park handicap and they look at you funny because I don’t have to use oxygen all the time yet, and you don’t look like you’re sick, but when I tell people that I have this, and then share the information, even with health care providers. I had a pulmonary function test not too long ago, and the technician who was doing this, we got to talking, and she’s like, “You know … “, and she stared relating some of her health problems, she goes, “Maybe I should be checked for that”. I said, “Yes, you should”. The best news they can tell you is, “No, you don’t have it”, but if you do, you need to know, and you need to know now.
Just sharing with other people, because not all the medical people are aware of it. As a PH patient, you have to advocate for yourself. You have to be able to tell medical professionals, “No, you can’t do a blood draw from my PICC line. No, I can’t do that. Don’t give me this”. I had a break with my PICC line once. I had to go to the hospital, and get a PICC put in, and the emergency room doctors like, “We just don’t do that”. It’s like, “I gave you the information, my doctor, and everything. I can’t be off this medication for more than two hours, or you’re going to have a big problem”. Contacted people, and they were diddling around, I said, “I’m serious, guys. I need to have it run”. They finally came in, and ran a PICC line. “Well, we don’t know how to hook your pump up”. I said, “Well, that I can do. I can’t run an IV”. Then they transported me from the local hospital up to Chicago.
You learn. It’s good to be prepared, and going to support groups, anything like this, any information you can pick up is going to help you. It’s going to help your family. Anybody you meet, and know because I wouldn’t wish this on anybody. I feel lucky that I’m still here talking to people peer group, my age.
You think it’s awful, but then you see the children, and it tears my heart out because there’s not so much that they can do. Now we’ve got the fourteen medications. When I started there wasn’t that many, but there’s so many actions now. When I see little ones with backpacks in the air, all that stuff, I can’t complain. I’ve gotten this far in my life.
Hearing the stories of young women who can’t have a family, that’s it, that’s not an option for you. I’m very grateful I had my kids before I was diagnosed. Now it’s just a matter of slowing the progression, getting stronger, and letting more people know about it, because nobody should have to wait for diagnoses. It was easily over three years before I got the proper diagnoses, because, “No, I don’t have asthma”.
I know that’s a big story. A lot of women won’t go in because we’re overweight, we’re inactive, and we don’t want to pay the doctor to tell us what we already know, so we don’t even go in. Yeah, just becoming more aware, and sharing it to get the word out, because rare just means they haven’t found as many. Doesn’t mean that’s not going to be more coming along the road.
I am Lynn Bastian and I’m aware that I’m RARE.
Listen to “I’m Aware That I’m Rare: the phaware™ podcast” at www.phaware.global/podcast. Learn more about pulmonary hypertension at www.phaware.global. #phaware
phaware global association creates global pulmonary hypertension awareness through engagement and innovation to forge a new course to a cure. #phaware
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