I have been suffering from ABPA for almost 4 years now. My first experience with ABPA led me to the hospital with pleurecy, sepsis & pneumonia. They did not know at that time that I had ABPA, and thought instead that I had Microbacterium Avium Complex. For another 2 years I went undiagnosed and saw many different doctors and had a plethera of tests done. Finally, I saw the right pulmonologist who diagnosed me immediately. I really felt that I was on my way to recovery after that! Unfortuantely, it has been an uphill battle since that time. First, they started me on antifungals and prednisone which seemed to work. After about 4 months I was taken off of the medication and 4 months after that was back on. While some patients can get off their medications, I was obviously not one of them. After going back on the medications, it never really cleared my ABPA up like it did the first time. So, I went off to Nation al Jewish Health to get some “real” answers! For 2 weeks I went through extensive testing and they found I had reflux (like most of us), asthma (like many of us) and possible ABPA but they didn’t think that was what was causing my problems. What!!!! They took me off my medications for a second time. When I came home, my pulmolnoligist assured me that the reflux is definitely a problem, but the ABPA is the major culprit and I needed to be back on the meds. So, now, after 5 months of being back on meds, we are trying to get everything “under control” and the diminish the amount of infections I get. Right now I am averaging about every month with a new infection. It is very frustrating to say the least. I am also taking Tobi to try and keep the infections down… but I don’t think it’s working yet! I am really hoping to get to a point where my infections are every 2 or 3 months but with bronchiectisis, it makes me more suseptible to bacteria.
What is hard about this disease is many fold. First, it is so rare that people really don’t know what to say to you about it. No one has heard of it. Luckily this wonderful on line support system is available to spew your thoughts to! Second, you really have to adjust your perceived reality as you thought it would be. I was an extremely active person with my kids- biking, walking, hiking, etc. They now know that mom can’t do those things because her lungs don’t work. It was very sad for me to wrap my head around this new reality but once I did I could move forward with a different one. No hiking or biking, but maybe walking when I can, going to the movies, the beach, camping, relaxing, reading, cooking, etc. It’s important to find something fulfilling even if it’s something different than you had planned initially. Finally, the ups and downs of how you feel each day. It’s like a yo-yo! One day you may feel well, and the next you are tired and can’t breathe or you have a new infection. It’s hard to make future plans too because you just don’t know how you may feel. But, you have to! You have to assume you will feel good later on so you don’t stay home and wallow in self pity! It’s important to surround yourself with people who understand or have empathy for your illness. It’s also important to know that you are ill and have limitations. Millions of people have millions of diseases and carry on and so can you. I’m very fortunate to have a wonderful & understanding husband and kids who care about how mom is feeling. They are helpful around the house and lift things for me when I can’t do it myself. I am hoping that raising kids in this manner will make them more sympathetic as they get older. I know you feel like I do, why me???? But, no one can answer that- and if not ABPA it could certainly be something else! Hang in there 🙂