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Recurrent Pneumonia

Post a new topicby Gina-MI on Sun Aug 31, 2008 9:21 pm

Since 2004, I've probably had about 20 bouts of pneumonia A little history here. In Sept '04, I had an EGD. The following day, I woke up critically ill with what turned out to be pneumonia and septicemia. There began an 8-month battle - 1-2 weeks/month hospitalized with pneumonia Typical presentation - literally - is going to bed the day before I get sick feeling great and waking up with severe vomiting and fever >103F Get driven to ER, they start antibiotic (IV), fluids, anti-nausea nd pain med, and my fever drops, the rest of the time in hospital spent waiting for course of antibiotics to be over. Then, 3/05, I had bronchoscopy. From 3/05 through 12/05, no pneumonia - then one bout over christmas, another bronch in January '06, then no more pneumonias until spring of '07 and we start over again - 10 since spring '07, 6 in the last six months of '08. The above presentation has held. There was only one time that I had 'forewarning' - it was July 4th - I didn't feel good, my blood sugars (diabetes type II from prednisone) within the 72 hours preceeding were >200 - at least 2/3 of them...and I woke up on 7/5 sick. That was an exeption. I looked back on my glucose readings, and so far, haven't been able to pattern the readings. Yes, before I get sick, there are a few days before where the glucose readings are high, but then again, there are days where the readings are high, and I don't get sick, so...

PFT's in '08 show a massive drop from '06 and '07 - they literally took a nosedive - from 75% of predicted in most categories to 20-35% of predicted in most categories, except the PFT in '08 showed 'severe restrictive disorder' - which means I no longer have dx of COPD (which I was dx'd with in 04). Apparently, the numbers were so close to normal, that it was difficult to determine whether it was restrictive or obstructive (PFT's) but when the gaps became chasms, then the difference could easily be read. I'm currently on prednisone (20-30 mg/day), inhalers, nebs and advair. My LDH is elevated as well (found out this can be elevated in IPF - which is what they think I have - as well as other pulmonary disorders. HRCT stated "thick bands of pulmonary fibrosis' and 'mild ground glass opacities in lower lobe of left lung' - Reading has shown me that this is 'early stage IPF' - I'd hate to see what my PFT's are in late stage! There's no 'wiggle room!' Other CT's state 'parenchymal scarring'; 'parenchymal opacities'; 'scarring of lungs (stated all lobes); linear parenchymal scarring; and several mentioned these worse than previous studies (within 3-6 months of each other). My shortness of breath has increased with activity - I'm on O2 24/7 and now use bipap ST at night (this is a machine that forces a breath for me if I don't breath - both cpap and standard bipap aren't enough - I still have apnea events, 77 per hour, I believe.

The last hospital stay (1st week of August), my usual pulmo's colleage came into the room day before discharge, and said "we're looking at lung transplant, probably U of M (univ. of michigan), and soon" - so whether or not it IS IPF, it looks like I'm going to at least be a candidate to consider xplant. The question is this - and of course, I'm going to have to wait another 10 days to find out! <grumble> - is the pulmonary fibrosis mentioned 'a noun or verb' - that is, is it IPF...or is it simply pulmonary scarring (fibrosis) generically put. If it's THE IPF, it's degenerative,whether or not the irritant that started it is gone - and will advance, and will be fatal, eventually (3-5 years), they think IPF might have an autoimmune component - hence the rx of chemo drugs to tamper down the immune system; but if it's not IPF, that just might be descriptive of a whole bunch of pulmonary scarring, which is not reversible, but neither will it advance, as long as what caused it is no longer present (smoking, etc.), but could be fatal, if the scarring is massive enough to interfere with lung function (mine is), since the scarring cannot be reversed; and since irritants are still there (I have GERD). So...I'm going to be at least a candidate to be considered to be evaluated for a lung transplant, I believe.

Any insights into this, I'd appreciate it!
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Gina-MI
 
Posts: 9 | Joined: Sat Aug 30, 2008 12:12 pm