- I'm Kathi Clapham, and I was born with cystic fibrosis,
45 years ago.
Cystic fibrosis had already claimed the lives
of my older sister and my older brother
before either one had reached the age of 5.
So, when I came along in 1971,
my parents were well aware of how horribly devastating
this genetic disease could be.
My husband and I met in our late 20s.
We were both doing theater.
I was more the performer, and he's more the tech guy.
Because we were a little bit older,
we wanted to right away start a family.
The last thing I recall was giving birth,
and I, two weeks later, was waking up
and I was trached and had a feeding tube
and was told I had been in a medically induced coma
to give my body time to start to hopefully breathe on its own,
and I was like, in shock.
My relationship with Dr. Ahya,
one of the lung transplant physicians,
began when I was pregnant and in such dire straits,
in such a serious condition.
And we formed a bond that really was a special doctor-patient.
I felt in his eyes, I knew he cared
and he was concerned about me, and that meant the world to me.
- And so, she came into the hospital in November 2014
and left the hospital in February 2015.
She still had a long way to go.
Even when she got home, she had to get stronger,
she had to feel better,
and she needed some time to be a mom.
- I had an oxygen tubing that like,
you could follow me around the house with it,
and you know, my twins were teething on it
and it was kind of like funny,
but it was sad at the same time.
It was obvious this wasn't motherhood to me.
So, a double-lung transplant was really the only option
that I could do at this point
so I could be a mommy to those babies.
- Our job was to get her well enough and strong enough
so that she could be a transplant candidate,
and then, once she's a transplant candidate,
get her on the list and make sure
she's healthy enough for a lung transplant
through that period of time.
So it really is the efforts of lots of different people
on our team with the patient as the center of that team.
Kathi: I was very lucky.
The surgery was, you know, textbook.
The doctor told my family that, you know,
they were beautiful lungs.
And you know, I was out of surgery
at 11 o'clock at night
and I don't even think, you know,
the next morning I was able to wean off the ventilator.
And it was like this feeling of like,
I just kept thinking I can fly.
You know, I don't know why,
but that kept going through my head,
like I just want to go up and down the hallway
just running up and down
because I had never felt that much, that air.
- What I'm most impressed by
is that she was never defined by her illness.
She was a person who had cystic fibrosis,
but she was going to live her life
and live her life to the fullest.
She is an amazing mom.
I see her as an amazing wife.
I can't think of anyone who has really embraced the philosophy
that lung transplantation really is a gift of life
and it's a second chance.
And, it's a privilege for me just to be a part of her story.
Kathi: Penn Medicine was really wonderful in treating me.
You know, they gave me the hope to say, okay,
well, that's ten years,
but now we're going to go another ten and another ten
and another ten.
There's no limit on how far you can go,
and that inspires me and I hope I can inspire others
to know that it is possible,
you know, to have that life you wanted,
and that health you wanted is possible.