Bob Morris
Message 1 of 1
June 8th 2000 was one of the low points of my life. I had just been diagnosed as having Pulmonary Fibrosis, and tears coursed down my cheeks as I left my doctors’ office. All I could think of was how short my life would be, and of all the things I still wanted to do, and of all the friends and relatives I would miss. I was wallowing in self-pity. The next few months were filled with myriad visits to various specialists, MRIs, lung biopsies, x-rays, etc., etc. I was not given any medication despite the strong advice of all the experts about the importance of beginning treatment as soon as possible. In fact, there is no FDA approved medication that will effectively treat pulmonary fibrosis - but I did not know that at the time After I regained a bit of my equilibrium, my sister ( a computer guru ) and I started an intensive search of the internet to learn as much as possible about pulmonary fibrosis and to search for any promising medications."At first we zeroed in on Relaxin, which appeared quite promising. We finally learned that it was not being manufactured at that time. Just recently I read where early stage testing of the drug had been disappointing. Ultimately, I came across an article about an Austrian doctor ( Dr. Ziesche) who had conducted some very promising phase 1 trials of Interferon Gamma and prednisone. In Sept. 2000 I learned that Dr. Zeisches phase 1 trials were so successful that additional wide scale testing was starting in this country. However, the testing in the US was being done on a double blind basis, meaning that even if you qualified to participate in the trial you could still end up taking a placebo while thinking you were being medicated !!!! I elected to go off protocol, taking exactly the medication Dr. Zeiche prescribed for his patients ; 1 ml of interferon gamma three times a week plus 10 mg of prednisone daily - ultimately it was decided that the prednisone added no benefit to the medication . We shopped around for a cheap source of Interferon once I had decided on a course of action. My sister even went to Mexico to try and locate a supplier. The cheapest supplier of interferon gamma we could find was at drugstore.com . It costs about $1000 a Week !!!!! At the time no one would reimburse me for this horrendous expense, but as I saw it you either take the interferon or DIE. Thus I was forced to sell certain assets and assume a large debt , but it turned out to have been worth every penny I spent. Now there is a chance that health insurance will start paying for interferon. Your doctor can make the initial arrangements. In August 2000 I had purchased an inexpensive pulse oximeter - to measure my blood oxygen % saturation (Flightstat by Nonin Medical - about $370) , thus I was able to monitor my pulmonary performance. After commencing the interferon injections - administered by my wife - there was a marked improvement in my condition. Since that time my condition has stabilized and remained more-or-less unchanged for about a year. My wife, a Catholic, has attended Mass on almost a daily basis since the onset of my disease. She has prayed consistently as have many hundreds of other people, for at least the stabilazation of my condition and has prayed for help in paying for the medication. I am unable to say that prayers have been the cause of my stabilization or the fact that the health insurace may now offer some reliefe to us on the cost, but I certainly can’t say that it has hurt. If you are inclined to believe in God or some supreme being maybe it will help you as my wife is convinced it has helped us. During the past year I have found that I can participate in many activities without the use of supplemental oxygen. For instance, I can canoe, fly fish, travel by plane, hike on level ground, dig clams, etc. With 4L/min. of supplemental oxygen I can bike, hike the Appalachian Trail, exercise in the gym and generally do modestly strenuous activities. I also learned that: Working in cold weather uses much more oxygen than working in warm weather. Altitude has a strong bearing on blood oxygen saturation. For every 1000 ft increase in elevation, oxygen saturation decreases by about 1 % Oxygen saturation, as measured in the finger, does not start declining until 30 or 40 seconds after the activity begins that triggered the decline Although I have arthritis I do not take Glucosamine and Chondroitin Sulfate because some small percentage of the interferon binds with the Chondroitin Sulfate and reduces the bioavailability of the interferon. It takes the body an appreciable amount of time to accommodate a new set of conditions. For example you can not sit in a car for any period of time and then exit the car and start walking and expect your blood oxygen content to remain stable. It will drop until the heart and lungs adapt to the new set of conditions - i.e. walking. Breathing in through the nose and exhaling through the mouth - as opposed to both inhaling and exhaling through the nose - is very desirable, it can increase blood oxygen saturation by as much as 2%. So in the past 15 months I have learned a lot, and I am still learning. Most importantly I have learned that you can fight Pulmonary Fibrosis and you do not have to give up all the activities that you once enjoyed. My pulmonary performance is better now than it was in July 2000. I do not think that I will be dying soon ! I plan to go snowboarding this winter and to go camping/fishing in Baja next spring. Life still stretches out before me. I think that you can also make similar strides if you are determined to do so. Don¢ t give up !! If I can help you in any way please contact me.