Raye D. Bohn
In October of 2002, I went in for hernia surgery and had trouble waking
up after surgery. Instead of staying for a day I ended up staying for a
week. My oxygen saturations where in the 80's and no one could figure
out why. They gave me physical therapy and inhalation therapy. I had
trouble trying to walk I would get dizzy and weak.
About four months later I returned to my family doctor for a
follow up visit and he heard a new sound in my heart. He scheduled a
visit to the cardiologist, who did an echocardiogram, and a walking and
resting stress test. He then did a left heart catheterization, and told
me my heart was fine it had to be my lungs that where causing the
problem. He referred me to a pulmonary doctor who did the standard
breathing test and he put me on an inhaler. With in the next few months
I started to have more problems such as walking up a flight of stairs
and having to stop half way up to catch my breath. I was supposed to
have some more surgery in November and when I arrived at the hospital I
explained all that I had been through in the last year. The
anesthesiologist did not want to touch me with a ten foot pole, he
cancelled my surgery and we were back to the family doctor. He then
sent me back to the cardiologist, who decided it was time to make a
phone call, he called the University of Connecticut Health Care Center
and made an appointment with Dr. Raymond Foley.
In December, I met Dr. Foley who then ordered a right heart
catheterization for December 29th. On December 31st Dr. Foley called me
at home at 8:30 am and talked with me for a good half hour and told me
that he felt I definitely had pulmonary hypertension and we needed to
set up a plan of action to help me get better. Dr. Foley saved my life
and each and everyday he makes sure I am the best I can be at all
times. We started on Tracleer but after three months my liver
definitely did not like it. I had to stop the medication and within a
week I got very sick, soon after that I was at UCONN to have the
hickman line put in and started on Flolan. I am so thankful I have such
an amazing doctor who cares about my life, I thank God everyday for the
day I met Dr. Foley.
At first I was terrified about having PH and all the new things
in my life; everything had been turned upside down and around. Here I
am two and a half years later and things are good. I attended my first
support group meeting at about four months after the start of Flolan
and it changed me, I met people who had been on Flolan or other
treatments for over 10 years and knew I had hope.
My family is very supportive of all I go through and all I am trying to do to help spread the word of PH to the community.
Last year my husband and I took a long awaited trip to Alaska,
and I did an article for the Accredo Therapeutics about traveling with
Flolan. I have also done an article for PHA about getting the
congressional people of your state to sign on to the PH Research Act. I
got all of them from CT to sign on and was recognized for this feat at
the PH Conference in Minnesota by Carl Hicks at the final dinner.
In the last year I have also had three articles in local newspapers
about my life with PH and the experiences of my first PH Conference.
I feel God has not punished me with PH but that he knew I
could handle it and decided I just needed to slow down a little. But,
God also knew I would be able to talk about PH and help to get out the
message to people about this disease. My mission is to do all I can to
make people aware of PH.