Member Comments are provided by individuals and reflect their personal opinions only. Under NO circumstances should you act on any advice or opinion posted in this forum. ALWAYS check with your personal physician before taking any action regarding your health! MedHelp International and our partners, sponsors and affiliates have no obligation to monitor any comments posted on this site, or the content and/or accuracy of such exchanges. MedHelp International does not endorse the views of any user.
Respiratory Disorders Community
This patient support community is for discussions relating to lung and respiratory issues, allergies, asthma, bronchitis, colds/flu, chronic cough, COPD, cystic fibrosis, emphysema, fibrosis, lung abscess, nasal polyps, pleurisy, pneumonia, sarcoidosis, sinusitis, and tuberculosis.
Atypical Mesothelial Hyperplasia found on 52 yr old exposed to asbestos, silica, hydrfloric acid
by MakezMuzic, Jun 01, 2007 12:00AM
Hello, #1, thank you for being here and available to the general public. In a open lung biopsy last year my HMO found AMH and evidence of Hypersensitivity Pneumonitis. During after surgery monitoring they found my o2 saturation was in the 50%. I was told that the AMH was of no consequence and after a regiment of high doses of prednisone, supplemental o2, I would be fine.
A year later, I am not fine.
I was stabilized for five months, o2 sats were 91 to 98. In Sept, my o2 saturation took a little dive, 90 - 95. More prednisone and continued supplimental o2. My sats seemed to stabilise. My PFT's seemed pretty normal except for a consistently low DLCO and RAW numbers.
DLCO 13.17 31.55 42 2003
19 33.3 57 17.3 52 -9 2005
30.2 14.7 49 2006
12.82 26.32 49 2007
DLCO/V 3.37 5.04 2003
4.09 4.18 98 3.86 93 -6 2005
5.28 3.61 68 2006
4.09 5.31 77 2007
Raw 0.98 1.86 53 0.64 34 -35 2003
1.36 1.39 98 2005
1.08 2.33 215 2006
Blood Gs 12.9 12-18 2003
I have been told that the "RAW" numbers don't mean anything. Even though it's getting harder and harder to take a deep breath.
In 10/07 I took another dive and given a contrast CT for blood clots - negative. I was told to have my heart checked.
As of 04/07 I was told by a county pulmo that I no longer have pulmonary fibrosis. He was concerned about my consistently low DLCO numbers and had an Ecocardiogram done. Eco came back inconclusive.
As of may 07, my o2 sat took another dive. Inactive it started hitting 88 - 90, and 79 - 85 during activity. I called my (now)county hosp pulmo and left messages. No responses. I needed to function, I am single and on my own. I upped my prednisone from 5 mg a day to 15. There was an immediate difference. My o2 sats while at rest went back to 94 - 98. 85 - 90 with activity.
I also have sleep apnea, the last "at home" sleep study showed o2 saturation 80 - 95. My pulmo is saying that my lung problems will be fixed by a correct adjustment to my CPAP machine. He does not know why my DLCO numbers are down.
I finally had one pulmo address the AMH, he said it was related to 12 yrs of asbestos exposure, but that the AMH is not progressive. Which is a good thing. wu whoo!
I realise I have a lot going on. That is probably why they can't find a consistent DX. Every pulmo I see says a different thing.
I feel like a broken toy that pulmos get tired of trying to figure out, so they push me aside for the next toy that is easy to figure out.
Thank you in advance for any feedback you may be able to offer me.
MakezMuzic
A year later, I am not fine.
I was stabilized for five months, o2 sats were 91 to 98. In Sept, my o2 saturation took a little dive, 90 - 95. More prednisone and continued supplimental o2. My sats seemed to stabilise. My PFT's seemed pretty normal except for a consistently low DLCO and RAW numbers.
DLCO 13.17 31.55 42 2003
19 33.3 57 17.3 52 -9 2005
30.2 14.7 49 2006
12.82 26.32 49 2007
DLCO/V 3.37 5.04 2003
4.09 4.18 98 3.86 93 -6 2005
5.28 3.61 68 2006
4.09 5.31 77 2007
Raw 0.98 1.86 53 0.64 34 -35 2003
1.36 1.39 98 2005
1.08 2.33 215 2006
Blood Gs 12.9 12-18 2003
I have been told that the "RAW" numbers don't mean anything. Even though it's getting harder and harder to take a deep breath.
In 10/07 I took another dive and given a contrast CT for blood clots - negative. I was told to have my heart checked.
As of 04/07 I was told by a county pulmo that I no longer have pulmonary fibrosis. He was concerned about my consistently low DLCO numbers and had an Ecocardiogram done. Eco came back inconclusive.
As of may 07, my o2 sat took another dive. Inactive it started hitting 88 - 90, and 79 - 85 during activity. I called my (now)county hosp pulmo and left messages. No responses. I needed to function, I am single and on my own. I upped my prednisone from 5 mg a day to 15. There was an immediate difference. My o2 sats while at rest went back to 94 - 98. 85 - 90 with activity.
I also have sleep apnea, the last "at home" sleep study showed o2 saturation 80 - 95. My pulmo is saying that my lung problems will be fixed by a correct adjustment to my CPAP machine. He does not know why my DLCO numbers are down.
I finally had one pulmo address the AMH, he said it was related to 12 yrs of asbestos exposure, but that the AMH is not progressive. Which is a good thing. wu whoo!
I realise I have a lot going on. That is probably why they can't find a consistent DX. Every pulmo I see says a different thing.
I feel like a broken toy that pulmos get tired of trying to figure out, so they push me aside for the next toy that is easy to figure out.
Thank you in advance for any feedback you may be able to offer me.
MakezMuzic
Post Comment
