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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