Our Journeys

Patient Story

Craig Bond

Craig Bond“It has been a long hard road, especially for my wife
who has had to put up with me, but now all the pieces
of the puzzle fit together,” says PH patient, Craig Bond

My name is Craig and I am 63 years old. I was officially diagnosed with PAH in September of 2010.

In 2003, after 30 years in the fire service in South Florida, I began having a difficult time functioning in my turn-out gear. At first, I presumed I was just getting older and becoming out of shape. While on a fire alarm and in full gear, including my self-contained breathing apparatus (SCBA), I found that I could not go beyond the third floor landing in the stairwell because I was unable to catch my breath. My fellow firefighter noticed I looked pale. I also had some chest pain and thought it may be heart related.

I went to my cardiologist and explained that while climbing the stairs, I increasingly became short of breath, was unable to continue and also experienced some chest pain. He sent me to the hospital for a catheterization, which showed that the right side of my heart had increased in size. There was also a problem with my tricuspid valve. Many additional tests were performed over the next nine months, including a visit to the Cleveland Clinic in Weston, Florida. During this time, I was unable to work. Thankfully, I had used very little sick time in my 30 years of service, so now I had that to use. The doctors at the Cleveland Clinic looked at my records and concurred with my cardiologist. Being a paramedic, I agreed with the diagnosis up to a point, but it did not explain why I had no chest pain while at rest, but once I became active, even bending over to tie my shoes, I became very short of breath. If I climbed a staircase, I had to stop at each landing to catch my breath. I could not walk any distance without becoming short of breath. Yet, I did not have any chest pain, increased blood pressure or increased pulse. I just had the shortness of breath.

After eleven months of not being able to work and no definite diagnoses, I was given a choice: either return to work or get fired. I knew that I could no longer perform the duties of a firefighter. I retired in December 2004 because I did not want to endanger the lives of my fellow firefighters. I continued seeing the cardiologist who never gave up, but just could not put the pieces of the puzzle together. As a last effort he conferred with my doctor at the Cleveland Clinic and they decided to perform a stress echocardiogram on me. This procedure involved an echocardiogram at rest, walking as long as I could on a tread mill and then an immediate echocardiogram to observe any difference in the pressure gradients in my right atrium. The pressure gradients were approximately 30 at rest, but when I got off the tread mill they had increased to above 70. “Bingo,” said my cardiologist. “You have pulmonary hypertension.” After this diagnosis, I continued the visits to my cardiologist as usual. The shortness of breath became increasingly worse over the next several years. My cardiologist conferred with a pulmonary doctor and they decided that I should visit a pulmonary doctor at the Cleveland Clinic.

In June 2010 I went to the Cleveland Clinic and met with Doctor Rahadji. Since most of my tests were old, he advised that I would again have to have a right side catheterization. I advised Dr. Rahadji that if I was not active, I did not have a problem and felt the procedure would not confirm the pulmonary arterial hypertension. I had the procedure and Dr. Rahadji advised that my wedge pressures were a few points below the limit for pulmonary arterial hypertension. Again, I advised him that I had to be actively doing something before the breathing problem reared its ugly head. Dr. Rahadji had a walk test performed on me and after the results and some discussion, he still did not believe I had pulmonary arterial hypertension. He reviewed my old test results and noted that I was sedated during the recent catheterization. He then prescribed Letairis in August 2010. After only a few days on the medication, I was able to again take a few deep breaths and could walk longer distances. I was even able to bend over to tie my shoes without the immediate discomfort and shortness of breath.

I have been on Letairis for four months and have had my dosage increased from 5mg to 10 mg. I have a blood test every month before the medication is renewed because as it can affect the liver, but the blood test is a small price to pay for the benefits of taking the medication. Though the problem still exists, it is lessened somewhat with the medication and I can enjoy some aspects of retirement.

With persistence on my part and doctors willing to look at all possibilities, I was finally able to get a diagnosis instead of the usual rule out (it is not this, let’s try something else) diagnoses. In my 30 + years of fire and paramedic service I had never heard of this disease. It has been a long hard road, especially for my wife who has had to put up with me, but now all the pieces of the puzzle fit together.

The right side of my heart has continued to increase in size, and the tricuspid valve has continued to deteriorate. I have also developed atrial flutter. It cannot be determined if the PAH caused the heart problems or the heart problems caused the PAH. I don’t care for this disease, but it is nice to finally have a diagnosis and I will learn to live with it and move forward. My hope is that through the efforts of the Pulmonary Hypertension Association and its medical staff that the story of this disease will make its way through JAMA (Journal of American Medical Association), other medical journals and seminars so that as many medical professionals as possible will become aware of it. I hope my story can be a benefit to others and that one day a cure will be found.

 

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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.