BENEFITING: Pulmonary Hypertension Association Inc
Life on a Hose
In 2008, I won a trip to Cancun, Mexico, all expenses paid, for producing the most fixed annuities in my office. Unfortunately, my wife was unable to attend with me, so I went alone. I found it very difficult to make my way through the airport parking lot to the main building having to stop many times to catch my breath. Once in Mexico, I found that the hotel was built on a hill and that to get to the beach, I would have to walk a great distance. I decided this wasn’t for me, but, the first night’s activities were at an outdoor bar located on the beach. Going down was okay but coming back to my room was extremely difficult. I had to stop several times to catch my breath and it took an inordinate amount of time to make the trip. I vowed not to go to the beach again during this trip and also to make an appointment with my family doctor when I got home. My difficulty with breathing had probably been coming on for a number of years. It was so gradual that I really didn’t notice it. In 2002, I had a ski house which I basically heated with wood. I had to climb 16 stairs to bring wood for the wood stove so that my wife and young daughter would be as warm as they wanted while I was skiing. I noticed that I started huffing and puffing when going up the stairs. Like many undiagnosed PH patients, I had decided my fatigue and difficulty breathing had to do with my getting older and being overweight.
I waited until after the New Year to make an appointment with my physician. I went in January, 2009 and my doctor told me everything looked okay but I should make an appointment at the Sleep Center at the local hospital to check if I had sleep apnea. I went and obviously they found I had sleep apnea. Not believing the sleep apnea diagnosis because my wife never complained or even indicated that I snored, I did nothing. I also during the same time frame went to a pulmonologist who did an arterial cardiac catheterization, and found no blockage in my arteries and virtually no plaque buildup. His diagnosis was that I was too fat! I would wake up in the morning, have a cup of coffee and then have to go back to sleep for several hours. I was virtually unable to work at my job, work around the house or do anything to help my wife manage the day to day activities in our home. However, about a year later I saw a program on the Health Channel about sleep apnea. The conclusion of the dramatization was that the person had the best sleep of his life after using the CPAP machine. This program convinced me to obtain the necessary equipment and start using it. Hoping this would improve my breathing when going up stairs, I used this equipment religiously every night. Nevertheless, my breathing did not improve when going upstairs but I was sleeping a lot better.
In early 2014, I decided to have the carpal tunnel syndrome in my left wrist repaired. The day before the operation, I went for the preliminary examination and they discovered my blood oxygen level was 84% and therefore they would not operate unless I obtained clearance from my primary physician. I went to her office that very day but she was not in but I did see the covering physician. He would not give me clearance and instead referred me to a lung specialist. During this time, I had lost over 40 pounds and felt a lot lighter but my breathing had not improved
The lung specialist had me go through a breathing test and then referred me to a different heart specialist. He did a venous cardiac catheterization, an ultrasound of my heart and an electrocardiogram. He found that the blood pressure in the right side of my heart was too high. The lung specialist then referred me to the Albany Medical Center where I was finally diagnosed with PAH. This was in September, 2014. I take opsumit, adcirca, 5 liters of oxygen continuously and Spiriva and use two types of breathing machines. One is an oxygen generator that makes a continuous stream of oxygen. I use this machine during the day when I am at home and at night plugged into my CPAP machine. The other is a portable oxygen generator that makes a puff of oxygen on demand and is not continuous. I use the portable machine when I leave the house. I live my life on the end of a hose.
Money is needed because this is a rare disease and very difficult to diagnose. Many people go undiagnosed for a very long time since most doctors had never heard of nor have they seen someone with this disease. My purpose is to raise awareness of this disease and find a cure. People who have trouble breathing and doctors need to have more information on this disease.