OUR JOURNEYS

Patient Story

Ray D. Bohn

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.

 

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.