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I'm Aware That I'm Rare: the phaware® podcast

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Marion Roth - phaware® interview 198

Oct 16, 2018

Canadian Pulmonary Hypertension Patient, Marion Roth discusses the importance of clinical trials, fearlessly tackling her bucket list and educating the world about #phaware-ness.

My name is Marion Roth. I'm a 63 year old lady from Milverton, Ontario. I was diagnosed seven and a half years ago. I'm alive, kicking, and looking for more adventure.

I began to believe that I was overweight. I was out of shape, because as I went for my walks daily with my neighbor who is 20 years younger than me. She was going up hills and walking faster than I could. My husband mentioned one night as I was getting ready for bed, you sound like a freight train. I couldn't breathe. I was just about hyperventilating. So, I went to the doctor, and thankfully my doctor was one of the older doctors that sent me to an internist that had worked in an office beside Dr. Sanjay Mehta. I was diagnosed with PH within four weeks.

The immediate plan of action once they had picked it up on the echocardiogram. Then they had to confirm it with the right heart catheterization. From there then we started onto Lasix, tracleer (bosentan) within six months they added adcirca (tadalafil) to it. Then we stabilized with that for a little bit. Then I went into clinical research trial for Nitric oxide. I was testing the machine that carries it. That was a very satisfying thing to have done, because I met a lady a year ago that because of some of the trialing that I did, she now has a very compact little machine for her Nitric oxide that sits over top of her oxygen tank and she has a quality of life.

Quite frankly, if sick people with PH don't do the clinical trials, how do you find it? You can't test healthy people for this stuff. Right? So we have to. Somebody has to take the plunge and do the trials. So, Dr. Mehta asks when you're at a level, whether you're so far down that he thinks this extra drug can help you. Or you're so good that he thinks you can take the challenge on of another, he asks you if you're interested. And, I've said right from the beginning, if there's anything I can do to advance the research or help other people, because clearly I'm going down the tubes. Right? Once you've got it, you're going down. So, you figure if you can help anybody else, let's go for it.

I've got no fear. I was handed a life sentence of three to five years. I beat it. I'm seven and a half years. I'm on borrowed time. I was born into the world on borrowed time. If I can do any good, help somebody else out, that's my mantra. My family is a giving family. We're community oriented. So, why not get tied up in the medical community as well?

I have a daughter that was through Air Cadets. I have a daughter that went through the Girl Guide Program, and it's all community service work. My husband was a Mason and a Shriner. I worked through them with that. I made all the uniforms for his Shriner's' band.

I got the diagnosis on my own. Then when we went to confirm the diagnosis, he came with me. He was devastated, because we're a very tight knit family. We're very close. We do everything together. Once I got him to understand that I was comfortable with it. I would do what I could to fight. I'm not going to sit down and rust out. I'm going down swinging. And, I told him that I would fight it all I could. He still has difficulty with it. So, we go up in peaks and valleys. And when you get down into that valley sometimes, you're not sure you're coming up.

Well, he wants to bubble wrap me. “You can't do this. Don't do that. I'll do this. I'll do that.” It was very hard on him. Both kids were out of the house. Youngest one is in the military. So, she'd been out of the house since she was 17 and well settled and no problem at all. My oldest daughter is my rock. She will travel anywhere with me. If I go to medical appointments and it's a nasty one, she'll volunteer right off the bat to come with me, because she has lots of time through her work that she can spare. Where my husband's a mechanic, and it's hard to take a mechanic off the floor when there's work booked in and you all of a sudden just up and take sick.

The youngest daughter, she's 32 and is still somewhat in denial. The denial is probably more caused, because she's been out of the picture for so long and away from home. So, when she does come home on a weekend or for a week, she sees mom scooting around and doing everything that mom always did. She doesn't see the aftermath of when she leaves and mom's down for two days and can't do jack squat, because she's exhausted and all the symptoms are back up and flaring again. Because you've pushed. You've done too much. We all work together at it, but we've all come to a consensus. When I need help, I ask for it. If I'm not asking for your help, then I'm okay. I can plod through. I can do it.

You know your own limitations. Every mother, every woman knows how far they can push and how far they can go. And, with PH, you know when you've pushed too far. You know the next day. It bites you. And, it depends on if I want to do something, and it's important to me, I do it. And, I know that I'm going to suffer the consequences, but that's my choice. If somebody forces me to do something, and I'm doing it and I don't really want to, that's when my big girl words come out, and I say, no thank you. And, I don't. Some things are worth pushing for. Other things are not. I was really sick for two and a half months. This late spring into summer. It was touch and go. I was scared. But, we came through it. Come up on the other side of it, and we're bouncing again.

If you can think it, you can dream it, you can do it. Your PH team will help you make that reality. But, you've got to be the advocate. You've got to want to do it. I've done everything I want on my bucket list but one thing. And, I can't do it, and I know I can't. So, I just had to drop it off my bucket list. I wanted to go cliff diving. They can't figure a way through physics that I can go down, go down 15 feet and come back up without exploding my heart. So, we took that off the list. But I've done everything else. Horseback riding, the ocean. I've gone down the slides on the cruise ships.

I've done more stuff than I can ever think of. You can't give in. You can't give in to this. You can't let this illness overtake you. You've got to go. You've got to do. My thing is, I want to help and educate. When I got it, it was the question everybody asks, why me? My answer is why not me?

I'm Marion Roth, and I am aware that I am rare.

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