I was diagnosed with asthma over 30 years and have taken inhaled steroids since the ’80s. In the spring of 2004, I started having more frequent asthma attacks coupled with longer recovery periods, shortness of breath, extreme fatigue, and pleuritic chest pain. Having taken antibiotics and steroids for almost a month with no improvement, I was hospitalized for IV medication and nebulized respiratory medications. I suffered from extreme fatigue, hallucinations (most likely from a low oxygen level) and chills that caused the whole bed to shake. I was sent home after two weeks of treatment but was no better than when I was admitted. For the next six months I continued taking steroids and got a nebulizer for home use. I took 15 courses of 5 different antibiotics with no improvement. Friends told me that my skin was grey and there was no life in my eyes.
I was admitted to the hospital again. This time, in addition to a Pulmonologist I was seen by an Infectious Disease specialist (ID). After about 8 days with no improvement, a sputum culture came back positive for aspergillus. I was told not to worry about that because it was commonly found in your mouth and could just be contaminating the sample. The pulmonologist took me for a bronchoscopy and said that he removed about 60cc (2 ounces) of green pus that filled all 5 lobes of my lungs and the lung tissue looked like raw hamburger meat. When I got back to my room I discovered that I had more energy than I’d had in a long time. I actually felt like getting out of bed and friends said that the sparkle was back in my eyes! It took 8 weeks to get final results. The only thing the specimen grew was aspergillus niger.
The ID said that it was too risky to put me on itraconazole because of the risk of liver failure. I told him that if I was dead I wouldn’t need my liver anyway, I was willing to risk it; anything was worth finding a way to get better. The Pulmonologist referred me to the Infectious Disease Clinic at Washington University at Barnes Hospital in St. Louis, MO, a short 30 minute commute from home. They too were reluctant to give me the prescription. They explained that itra is labeled to treat ABPA caused by aspergillus fumigatus. They had no idea if it would help me. I left there with the script and these instructions “try it for a month or two and see if you feel better”.
Having a diagnosis does not mean having a cure. I continued to work until 2007, taking breaks for inpatient treatment and working half days when I could not get through 8 hours. Needless to say the quality of my performance deteriorated and I stepped down from being the charge nurse in a busy cardiac cath lab. I took a leave of absence then worked a few hours a week to help with ancillary duties and was eventually eliminated.
I found the aspergillus website several years ago and have learned a lot about fungal disease from the site. However, most of the info does not apply directly to my situation as most studies reflect disease caused by aspergillus fumigatus. While my symptoms and problem is more like ABPA, I do not fit the diagnostic criteria for the disease. I am treated with advair, singulair, nebulized albuterol, xopenex, itraconazole, and on occasion, antibiotics and oral steroids. Generally after 3 mo of itra (200mg twice daily) my liver enzymes climb and I’d have to stop the med to give my liver a break, so I recently reduced the dose to 100mg a day and increase when I have a problem. Oral steroids make my blood sugar very high so I use metformin and insulin when I take prednisone. I also take D3 and calcium to deter bone loss.
In December of 2011, I was told that I have very low IgG and IgE levels and have started receiving IGIV (intra-venous immunoglobulin replacement therapy). Interesting to me because people with ABPA that I have interacted with on the fungal support group website indicate their Ig’s are extremely high. The doctor hopes this treatment will reduce the number of severe infections that I experience. Now I wonder which came first the fungus or the compromised immune system.
This has been a very frustrating and depressing problem to say the least. My life has changed so much. Chronic disease sucks! I try to be very compliant and I monitor my peak flow and blood sugar daily so that I feel like I have some control. I have become very attuned to mild changes and try to get on meds early which helps but I usually get violently ill regardless. I feel blessed that I can get off the oral steroids now and then to give my body a break, though for very short periods. Of course my pulmonologist does not treat many/any patients with the problem I have, so I have provided him info on treatment, etc. and we try different things to see how they work – I feel like a science experiment. I just hope it’s a long-term study.