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My primary care doctor at the time didn’t seem very concerned. After all, I was fairly young and from the outside I looked healthy, so it couldn’t possibly be anything serious, right? But, gradually I just kept feeling worse. Keeping up with work, school, household duties, friends, everything, was increasingly becoming more and more difficult. I was prescribed various medications and asked to come back in a month if I didn’t start to feel better. So, every month, for 6 months, I checked in with the doctor. By this time my fingertips had started clubbing, which is a sign of serious heart or pulmonary disease. It indicates that the body is oxygen starved. I showed the doctor my fingertips but she felt that it was probably due to a side-effect of one or more of the medications she had prescribed.
After 6 months, I realized that something else was going on & I needed to find a new doctor. I self-referred to a Pulmonologist who was a God-send. He spent a lot of time with me going over my symptoms, he checked my oxygen levels, something that had never been done up to this point, and he was also concerned about the clubbing of my fingertips. A battery of tests and procedures was set up, plus 2 surgeries, in order to try and determine what was going on with me.
The last test was in January of 2004 and soon after my life was turned upside down and inside out. Someone from the Pulmonologist’s office called and told me they had received the results of a left lung biopsy and I needed to come in and see him that day. They wouldn’t tell me the results over the phone, which I knew, was a bad sign. Later that day, as my husband and I sat with my doctor, we learned that I had a rare, incurable, and terminal lung disease called Idiopathic Pulmonary Fibrosis (IPF).
IPF is a chronic disease that causes inflammation and scarring of tissue in the lungs. It usually occurs in people between the ages of 50 and 70, & it is highly unusual for younger people to have it – although it does happen & has even been found in children. The word “idiopathic” in the name of this disease means the cause is not known. Researchers think that IPF involves an exaggerated and uncontrolled inflammatory (auto-immune) response that produces fibrous scar tissue. What starts the injury and abnormal healing is not known. Over time, the scarring surrounds the alveoli in the lungs. This makes the tissues become thicker and stiffer. As a result, breathing becomes difficult, and the lungs gradually lose their ability to provide oxygen to the rest of the body. The scarring is irreversible, and the disease is progressive, meaning the disease gets worse and worse with time. The average life-span of person diagnosed with IPF is around 3 years.
I was told that my disease was considered “end stage” and that I had 2 options: One, I could take my chances and hope my progression was slow, and if I was lucky, I would basically die a slow death. My other option was a lung transplant. Although risky, I would have the chance to live a longer life, and have a better quality of life. I was relatively young and other than my lungs, my body was healthy. I was told I would be a good candidate for a lung transplant.
The next couple of weeks were spent researching lung transplantation, doctors, and transplant centers. Together with my family, we spent hours networking with friends and family who worked in the medical field. During our search, we learned that UW-Hospital in Madison had one of the best lung transplant centers in the country. In the summer of 2004, I was accepted onto the transplant list at UW-Hospital. I was told that I could receive “the call” for a new lung or lungs at any time.
While I waited for the call, my quality of life began to change drastically. Before IPF, I was very active and physically fit. I had been involved in many sports as a youth, and as an adult, exercise was a daily part of my life. I was also a very “get up and go” type of person, always running around doing one thing or another. I eventually had to quit working, and quickly after that had to take a leave of absence from school.
I became sicker and sicker. Most nights, I would wake up feeling like I was drowning, kind of like how you feel if you’ve swallowed too much water when you’re swimming. I would wake up coughing and gasping for air. I had good days and bad days. On a good day I could do some laundry or go to the store, on a bad day, I couldn’t do much of anything. I was dependant on supplemental oxygen 24/7, meaning I was always attached to an oxygen tank or oxygen concentrator. Without the oxygen, I wouldn’t have been able to walk more than 5 steps without sitting down.
Even though this is very hard for me to talk about, I realize how important it is for people to know the truth of this disease and what it is like to wait for a life-saving transplant. It has been extremely difficult to go from being a person with so much energy to having to be strapped to an oxygen tank all the time. In a way, it steals your identity. Actually, dealing with this disease has been the biggest challenge of my life, one I didn’t chose, but one that challenges everything I thought I “knew” about myself.
The first thing I learned is that I didn’t have a lot of control over what was happening to my body. There aren’t any medicines, diets, treatments, etc. that can get rid of this disease or slow it down. On a positive note, like a lot of people who are sick, there is one thing that kept me fighting, and that was hope. I could attribute most of that hope to the opportunity to receive a lung transplant.
After waiting over 3 ½ years, I finally received the call for a double-lung transplant on February 4th, 2008. The recovery has been challenging at times, and tremendously joyful at other times. I’m no longer dependant upon oxygen and each day I get stronger and stronger. I’ve been given a new lease on life and it is one that I don’t take lightly or for granted. What started out as a nightmare has become a happy ending. God bless.