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- Fri Oct 16, 2009 7:56 pm
I had severe, hemorrhaging ARDS/MODS, empyema, no pulse on arrival by ambulance in 1980, age 18 years. Was on PEEP ventilator, albumen, saline, various antibiotics, etc. Hospitalized 2 mths. Result: Restrictive Lung Disease, deviated trachea, attacks of bronchitis "everytime" I get someone's cold.
Problem: I obviously can't climb more than 2-flights of stairs, as lungs don't stretch, and I can't job more than a couple blocks with my dog. (Though I can speed walk, with some exercise induced asthma, at 3.0 max. on my treadmill, flat surface).
I just read a four yr. old child developed swine flu and received same ventilator and damage to lungs from fibrosis. They apparently can now "strip" this tissue off of lungs to restore normal lung function. Question: Could I be a candidate for this procedure, after almost three decades since I got ARDS? It would be great; as I have always missed out on vertical hiking with my friends - I am always left behind huffing/puffing, frequently stopping until I get rid of the carbon dioxide trapped in my tight lungs. I'd love to exercise more, and just thought there would be a way for me to do this.
Thanks for your assistance. PS....any studies on post-ARDS Restrictive Lung Disease survivors? I always see COPD mentioned on every lung association website, and only Restrictive Lung Disease mentioned when caused by Kyphoscoliosis, or progressive type fibrosis. So, I don't know if my condition is progressive (if I have to worry about pulmonary hypertension as I age) or what. Annoying!
| John Kenyon, CNA
- Tue Nov 03, 2009 10:59 pm
Hi there -- Considering the profound extremity of your condition upon arrival during the acute illness, you certainly have made a remarkable recovery, and you do really well in terms of exercise tolerance considering all this. However, you're still quite young and obviously have more energy than you can readily expend, so this has to be frustrating. The "stripping" procedure is fairly new and I'm honestly not up on this, nor have I seen any studies on post-ARDS patients, have only heard anecdotal information that is largely very positive. There is, of course, in situations such as yours the need to avoid upper respiratory infections (and lower ones as well, needless to say), but you are doing really well. I would recommend checking with a pulmonologist at one of the major medical centers (Mayo, Hopkins, Georgetown, to name a few where this field is explored often and in depth, and depending upon your location). You may be or may become a candidate for the procedure or something similar, but it's difficult to say, especially after this much time has passed. The fact is the scarring becomes more "concrete" over time, although the question remains as to whether or not this can be removed from a healthy substrate. And that's where they lost me in the discussion -- the question of healthy substrate and how to reach it. By now it may be possible and is certainly worth a few telephone calls at least. I wish I could tell you more, but this is a pretty rarified area and there are a few pulmonologists around who may be more up to date on the latest on this.
I hope this is helpful, good luck to you, and keep up the great work. You're actually doing awfully well, but the frustration and desire to do more is felt here and very much understood. Please follow up with us here as needed.