Kevin, his father David, and representatives from the PHA
speak with a representative from Ohio Senator Robert Portman’s office
during a PHA event on Capitol Hill
I am a competitive person by nature. I never was the über-athlete, don’t think that, but I
did play sports, I did coach sports, and you don’t want to challenge me
to a game of Monopoly or Trivial Pursuit. In high school I picked up an
oar and took up the sport of rowing, In college I changed gears to play
intramural football, and through it all, I played hockey. Even my still
occurrent online video games feed a competitive spirit that I thought I
would have to lose, and at the time of my PH diagnosis something I was
certain was gone and would not be coming back.
3 years after Kevin’s first fainting spell, he takes a picture
atop the Williamstown Bridge in Marietta, where he first passed out
I still remember
the three months from May to August 2012 like they were a dream, even if
it was a bad one. The first cardiologist I had consulted after it
became apparent something was wrong, suggested I had at best two months
left to live, and suggested my only hope was an immediate heart/lung
transplant. I was sent, albeit not immediately, to Ohio State University’s Wexner Medical Center to confirm his prognosis. From an
initial appointment in May with the Ohio State specialist, to an MRI and
more tests in July and finally my right heart catheterization and first
meeting with my PH Specialist, I was if anything, not my normal self. I
had always taken every little thing as a challenge, in my mind if I
could mow the lawn three minutes quicker than before, or get to work a
minute earlier after leaving at the same time, it was a victory, and for
the first time in my life I didn’t see a victory as being possible, and
for a period of time, I gave up.
I remember sitting on my couch
one day, in the throws of an incredibly horrendous anxiety attack,
surrounded by the outdated PH information that most of us can quote by
heart, unable to find anyone who could help me in that moment. I
remember that moment so well, because my spirit was gone. That little
voice in my head that had always told me I could do it a little better,
that we could win this was gone. He had simply said “I’m out” and left. I
felt I was going to die, I knew I was going to die. The doctors up to
this point had still maintained six months or less without medication,
and I was not yet on that medication. It was the lowest I have ever
felt, and I admit, I just gave in. I succumbed to what some of the
doctors had said, what the numbers told me, and I couldn’t find the will
to go on.
One of Karen’s famous Christmases would not be complete without, of course, a christmas tree.
I am sure many of the people reading this can relate.
Most patients I have talked to can pinpoint the exact moment their
hearts sank, that moment that the gravity of their situation finally
started pulling at its full strength. It is a moment that I would hope
no one ever has to experience, but something that I know far too many of
us do. At my deepest and darkest moments I was so helpless that I had
trouble doing anything without the urging of my wife or family. I do
remember another moment though, when in an attempt to get my mind off of
my situation, Karen asked me what I wanted for Christmas. I must
preface here, that Christmas is a big deal in our house. Karen
celebrates the holidays like no one can. She turns Christmas into a
colorful celebration like no one else can. Generally starting the week
preceding Thanksgiving, decorations start going up and the tree pops up…
a very “Victorian” looking tree in the parlor of our old Victorian-era
home. When she asked me what I wanted for Christmas, it was nothing more
on her part than an attempt to get my mind off of the situation I was
in, but for me, it started this little voice whispering in the back of
my head. That voice was telling me to just make it to Christmas. I had
to be a part of one more of Karen’s Christmases… and then I could let
go.
Armado: a photo from a Shakespeare By The River outdoor production, the
first of it’s kind in Marietta. Kevin served to get the production
started, as well as taking a role in the production of William
Shakespeare’s Love’s Labour’s Lost.
Something amazing happened though, while that little whisper
was just urging me on to December. I started medications, and I
responded to them. I felt myself getting stronger, I felt a little hope
return to me, and when Christmas 2012 rolled around, I made a pact with
that little voice in my head. I said that I could make it one better,
and Christmas 2013 was my new goal. Without knowing it, and without
really trying, that little competitive streak I have in me, came back.
Very quickly, I was pushing myself again. Little things at first, to
make it a little further on the walk with my wife, or to make it further
on my next six minute walk, and new goals slowly got bigger and better.
Goals changed though, where once a competitive goal to stop more shots
than I had the game before (I was a goalie when I played hockey) or to
make it downriver in my kayak a few minutes faster, suddenly I was
making goals for others. I stepped into politics and advocation, trying
to raise awareness for PH and for our patients. I set goals to talk to
my elected officials, and I use that spirit to otherwise help those who
need it, both in my hometown of Marietta, and those in the PH community.
The cast photo from the first Shakespeare By The River production in Marietta
All of this leads me to the biggest piece of advice I wish I could have
given myself, and the best piece of advice I can give any new patient.
Don’t give up, and don’t let this thing change you. Find that last
little bit of yourself, and don’t lose it. Hang on to it. This disease
is bad, but it is not bad enough to lose who you are. The numbers are
bad, but outdated, not all doctors know what they are talking about all
the time, and you can live with this. I thought I had lost everything,
but without even realizing it I kept that little bit of competitive
spirit, and it is what got me through. I wish I could go back to myself
in August of 2012 and sit down, and inform my beaten down self that I
still had that last little spark of myself, and that I would listen to
it, and things would get better. I don’t know if it would have helped
much, but every day I think about it I wish someone had been there to
tell me, even if I didn’t believe them, that I wouldn’t lose myself, I
wouldn’t lose that last little piece of who I had been, and in the end
things would get better. It is one thing I do try to tell new patients
when I come across them, that life is not over, that things can get
better. I can’t stress that enough. Use whatever you have. If it is an
ember of rage (as Henry Rollins would say) that pulls you through, or a
drive to make this a part of your world, or just a desire to make it to
next Christmas, you have to embrace that little bit, hold it tight and
nurture it, and use it for good in your life as a patient. I chose to
fight without even realizing it, and I will keep fighting for every
breath, every day, and for every patient in our community, because I am
just competitive like that.
10 months after his diagnosis, and doing better. Kevin and Karen married on May 4, 2013.
My PH
symptoms began after the birth of my second child. My son was born February of
1996 my symptoms began in October of 1996 and on April 15th 1997 I was
diagnosed with stage 4 PH.
Camel back in Morocco
My PH Journey
is not like most, you know the usual, 6 months to 2 years. I was very blessed
in receiving the news that I may not survive the night. With given only a few
hours to live my family was sent for to say their good byes.
After surviving the night to everyone's surprise I
stayed in ICU for a few days and then sent home to “die” in comfort and to make
proper arrangements for my demise. After surviving
a month I was given 6 months, that is when we decided to take our last family
vacation and took our 4 year old daughter and 1 year old son to Disney World.
After surviving 6 months I was given a year. Originally I was put on Norsvac
until a heart and double lung transplant was necessary. To this day I am still
at the same dosage of Norsvac. To my understanding the DR’s do not even suggest
Norsvac to new patients as there are so many other meds out there that have
show a quicker response to PH patients.
Great Wall of China
When I was 6
months in with PH I am thinking I may survive a little longer. I called the
Lung Association to find out where the support group meetings are held. The
Lung Association (at that time) had never heard of PH and was told to call The
Heart and Stroke Association. They too had never heard of PH. Well then, I will
start the first of its kind in Canada. So it began. We met at TGH once a month
with a social worker present.
My sister had
made pamphlets with pictures of the people that had attended group.
Unfortunately, due to the privacy act no one new heard about our group. I just
thought that nobody cared. I did get involved with the association in the US (PHA)
and attended several of the conferences with my family in tow.
I had
PartyLite, Pampered Chef, Fifth Avenue Jewelry parties, Yuk Yuk fundraiser’s
etc etc. With all proceeds going to then, Pulmonary Hypertension Society of
Ontario, to support Dr Duncan Stewart efforts for a cure. That was way back in
the 90’s.
Snorkeling in Bahamas
In the mean
time my Pulmonary pressures are coming down from the original 104 at diagnoses.
After a year I was given 2 years,you guessed it then 5 years. Now they do not
give me a time of survival as it has been over 17 years. I have always been a
traveller, but now I have a bee in my bonnet and
want to enjoy as much of the world as I can. I have visited 52 countries to
date. This past summer I spent 5 weeks overseas visiting my daughter in Swansea
Wales. While there we travelled to Morocco, covered north to south,east to west
of Wales. We journeyed to Puglia Italy and I drove through the south of England
and Northern Ireland.
Carrick -a-Rede Rope Bridge Northern Ireland
Some of the
many things I have accomplished since I have had PH.
While in Oahu
Hawaii, I climbed the 175 steps to the top of Diamond Head.
While in
Beijing China I climbed the Great Wall.
While in
Athens Greece I climbed the Acropolis.
While in Pisa
Italy I climbed the 296 steps to the top of the Leaning tower of Pisa.
While in
Dorset I climbed the 128 steps up the Dorset Tower.
It is not
easy but I am determined to do it.
Tubing in Jamaica
I love to
Zip-Line and Snorkel. I walk 5km a day with my dog, Sheldon. In February I will
be Para-sailing in the Caribbean. Some much to look forward too.
I keep myself busy daily. I have not worked since my daughter was born, 21 ago.
When my kids were in grade school I ran the milkshake and pizza days the school
choir and the reading program. I was a Brownie, Girl Guide and Pathfinder
leader for seven years. I run a ladies book group every Tuesday morning at my
home. Every Thursday I go into Toronto to visit friends. I organize a yearly
ladies cruise getaway in February. I host a monthly Quiz Night in Brooklin.
