I never smoked. I have Alpha 1 Antitrypsin Deficiency - ZZ. I have been on Prolastin since 2003, but my condition is worsening each day because I keep contracting bacterial infections in my lungs due to my severe bronchiectasis, Alpha 1 was enough with which to deal. Why did I get bronchiectasis, too? Recently, I received a diagnosis of Nocardia from National Jewish Hospital. Last year I was treated for MAC and lost 22 pounds. The MAC is dormant at present. I am so tired and breathless I can't do routine activities and it is extremely frustrating! My pulmonary physicians through the years have never treated my symptoms aggressively. It seems to me bronchiectasis could have been prevented with early intervention. Now it is too late. It is in all five lobes. My left lower lobe is completely destroyed. By the way, I am struggling with each breath and my average heart rate is 120 just walking in the house. My blood oxygen level is good and ranges between 91-97. Would oxygen therapy help me with the breathlessness even though my blood oxygen level is within normal range? I NEED HELP...
Hi....as far as getting O2....have the doctors tested your levels while you are walking? They should do the 6 minute walk test and monitor your O2 levels continuously as you are walking. It wouldn't surprise me if your levels dropped to 88 and below which would qualify you for O2 by most insurance guidelines. It sure sounds like you would benefit from O2, your lungs and heart are working very hard right now.
As far as your bronchiectasis, are the docs aggressive with the treatment of it? I have bronchiectasis (have atypical CF) and am on a rigorous daily treatment to help keep my lungs clear. For one, I do chest physiotherapy twice a day at a minimum to loosen my thick sputum using the Vest (a device that I put on, kind of looks like a life jacket, which is then hooked to a machine that pumps air in and out at a high frequency. This pounds my chest very effectively). I also nebulize many medications that helps thin my secretions as well as nebulized Tobramycin to keep my pseudomonas colonies at bay.
I honestly believe that with aggressive therapy, the incidences of infections has decreased sharply. Prior to my diagnosis, I was sick constantly, now it is more like twice a year which requires IV antibiotics to clear the infections.
I Hope this helps you...Sunny
Thanks for your input. It was quite helpful, especially regarding aggressive treatment for pseudomonias, which I have. I saw my Infectious Disease specialist today and he ordered a picc line, 21 day course of 3 different antibiotics plus inhaled tobramycin. As far as my bronchiestasis goes, my treatment for the past year has been similar to yours: Vest, inhaled albuterol & inhaled sodium chloride using a nebulizer & Spiriva. Needless to say, if one faithfully adheres to this rigid treatment plan, there is little time to do anything else. It is essentially the life of an invalid, which is difficult for me to accept! Anyway, thanks again for replying to my posted questionon Medline. I appreciate it!
Oooh, I hate those dreaded IV's! I am usually on them every 4 months or so. I have had so many courses that I now have a port in my chest for IV access. Those antibiotics are rough, I feel for you. The nebuilized TOBI is harsh on my lungs at first, it takes a good week to get accustomed to it. I actually feel much worse before I feel better. I also grow out B. cepacia and other bugs along with PA. When they flare up, I am usually nailed with IV's...as much as 5 depending on what I am growing.
I hope the 21 days goes quickly and that your colony counts drop...Keeping you in my thoughts. Sunny
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