I started taking Prolastin when I was diagnosed with COPD in 1989 at the age of 42, and I believe it has been what has kept me alive.gt;gt; I found out I was an alpha 1 (alpha-1 antitrypsin deficiency, a condition that is caused by a gene mutation and that increases COPD risk), and back then, most alpha 1s were given about two to five years of productive life after diagnosis. My doctor told me not to make plans for retirement.gt;gt; I started on Prolastin therapy and took antibiotics early on when I was sick or had an exacerbation. Eventually I started using gt;albuterolgt;.I also took gt;prednisonegt; when I had an episode and a mucus breaker (like Mucinex) whenever I needed it.gt;gt; I didn't have any side effects from the Prolastin, but after about a year, the veins that I used to inject the medicine into collapsed. Prolastin is thick and caustic, so it probably caused my veins, which were weak to begin with, to break down. So I had a port implanted in my chest to administer the medication. At the time I was working full time, going to college at night, and had three teenage children. I didn't have time to go to the doctor's each week to get the treatments, so I started self-infusing, which I still do. gt;gt; Over the years, I have used Advair and Singulair. After a while, I became immune to them. I have taken Spiriva, too, and went on oxygen in 1993. One of the problems with all of the medications is the side effects. gt;gt;I now have glaucoma and the beginning of cataracts, which can pretty much be caused by any of the medications I take. I have acid reflux , which is probably because of the prednisone, but it could also be the result of Mucinex. And after having low blood pressure my whole life, it's now high probably because of Spiriva. (I don't believe that it is due to prednisone because I took it for years and still had low blood pressure.) My cholesterol is high, which it never was before. I think that is because of the bad diet I followed when I was working. That was the one thing that wasn't a side effect! And because of my stomach problems, I have to take Boniva for osteoporosis through an IV. I also had sudden weight gain from taking prednisone, and sleeplessness, jitters, and shaking from the nebulizers and inhaler. gt;gt;But those are all things that can be dealt with. I try not to get discouraged if one doesn't work. I just talk to my doctor and we try something else. My doctor and I have always measured the risk versus benefit of any drug, and sometimes it's not worth it. gt;gt;When I was first diagnosed, it was frightening to have some of these side effects. Still, after this many years, I know my body and what to expect. Right now I'm on four COPD medications, but I take a total of 17 pills a day—most of them for the side effects.gt;gt; I've come to look for the side effects and be more aware that they are possible. I read all of the information that comes with a new drug. I think, to be truthful, the insurance issues cause me more aggravation and sleepless nights than the meds do.

gt;Exercise/Pulmonary Rehabilitationgt;gt;An important aspect to improving breathing and lifestyle if you have COPD (or any type of breathing impairment) is pulmonary rehabilitation and exercise. I have COPD/emphysema and was so exhausted just breathing; it was difficult to do any exercise.gt;gt; But I enrolled in pulmonary rehab and discovered that the effort is just way too simple for the amount of benefit you get from it.gt;gt; Through the program I learned how to control my breathing. You do upper-chest exercises and stretching and treadmill work. I couldn't walk over two minutes at 1 mile per hour on the treadmill—my legs were weak and my lung capacity was poor. But I went twice a week for about 40 to 45 minutes. gt;gt;I had to be able to walk six minutes to qualify for a transplant and I couldn't. After three months, I was able to walk six minutes and more. Even though I was still quite ill, this exercise greatly expanded my abilities to function in "normal" life. I have seen people who couldn't walk for two minutes, but after rehab they could walk for 20 minutes or more. I saw miracles happen there.gt;gt;gt;Lung Transplantgt;gt;One piece of advice I have for people with COPD or any lung disease is to be proactive with their treatment. I received a lung transplant because of research and persistence with my insurance, primary-care doctor, pulmonary doctor, and transplant hospital.gt;gt;I was diagnosed with COPD in 2003. By then, I couldn't walk a flight of stairs without having to stop. I was put on various medications, including Advair, Spiriva, and albuterol inhalers, and after a bout with pneumonia in 2004, I was put on oxygen 24/7. My lung capacity (FEV1) was down to 11%. (A person with healthy lungs has an FEV1 of around 70%.) gt;gt;I was so sick that my pulmonologist told me I wouldn't likely be able to ever walk more than about a block. gt;gt;After I qualified for Medicare and purchased supplemental insurance, I started asking my pulmonologist about lung transplants. He said he didn't think Medicare would pay for it. I kept calling my supplemental health insurance company and National Jewish Health, which led me to the transplant services at University of Colorado Hospital. I got tested, and I believe that because I already had pulmonary rehabilitation and a transtracheal procedure, I met the requirements, which most people don't. Miraculously I was on a waiting list for a lung for only nine days. gt;gt;I had the surgery and my right lung was replaced. My donor saved my life and the lives of six others. He and his family are forever my heroes. Thirty days after the procedure, I was walking a mile a day and, at one point, was walking six to eight miles every day. Before this happened, if I was going to walk, something had to be out of gas. gt;gt;Now I lead a pretty normal life. I take antirejection medications in the morning and at night, and wear a protective mask when on airplanes or in hospitals. I no longer need O2, and maintain 95% to 97% oxygen saturation levels. My FEV1 is now 68%. gt;gt;I strongly suggest that you be proactive in your treatment —both for improved breathing and also to see if you would qualify for a transplant. It has been my experience that unless you are in a good pulmonary rehab program or actually being tested for a transplant, the exchange and availability of information is scarce. gt;gt;