D
Der Biermeister
Two weeks ago, and acting on the best intentions of many of you here ... I went and retrieved the rest of my test results from my hospital stay back in late July. Of particular interest was the CT scan as it contained a conclusion that I hadn't been apprised of:
"Interstitial and air space disease in the lower lobes with bilateral small pleural effusions"
Well, not knowing exactly what this meant, I set about hitting the web. Hours later, I was horrified at what I was learning. About 200 causes of ILD, and none of them good, and most all resulting in some form of fibrosis. Treatments are iffy at best and all have major side effects, some of which are dangerous.
So .. while I had intended to find me a pulmonary specialist well versed in pulmonary hypertension anyway, I now made this a major priority. I got the man I wanted, a Dr. Paul Fairman from MCV (a highly rated teaching medical school) and finally got into see him this morning. Forgetting all about Aortic Insufficiency, I had now convinced myself that I was slowly sufficating from ILD. My best hopes were that he be able to diagnose me with one of the more treatable kinds. He had been well prepped with all my records from the hospital and cardiologist, etc. I brought the films with me.
To make a long story short - after close examination of the films, he concluded that I do NOT have pulmonary fibrosis of any kind and he set about showing me what to look for and what was actually there. As he smiled at me, he made a "0" with his thumb and forefinger and said that I have zero chance of having it. What I DO have is the original diagnosis of AI with secondary pulmonary hypertension. He confirmed that by finding in my cardiologist's report one of the "back pressures" taken during the heart catheter from the LV (I think) -- or somewhere, of 30 Hg (I think it was). That is double what normal is and it IS causing the mild pulmonary HP and it IS backing up fluid in my lung cavity (interstitial?) space. My O2 de-sats are worse (resting I am 88 with shallow breaths and can only get up to 95 with deep breathing. I now blame this on myself who, like a dummy, cut my dose of diuretics in half about a month ago after I decided they weren't doing anything to eliminate my lower calf/ankle edema. I have slowly been getting weaker, but it never dawned on me that I might actually be building up more fluid behind my lungs BECAUSE I have not seen any of the weight gain that I'd been told to look for. I've actually been losing 2 lbs a week in the last two months on the low sodium diet.
Dr. Fairman agrees with my cardiologist that I have a fair shot at getting this SOB under control with continued weight loss and following the prescribed medicines. Needless to say, I couldn't wait to get home this evening to down another dose of diuretics, along with another one of those Potassium supplements.
You might say I had a smile on my face today ...
DB
"Interstitial and air space disease in the lower lobes with bilateral small pleural effusions"
Well, not knowing exactly what this meant, I set about hitting the web. Hours later, I was horrified at what I was learning. About 200 causes of ILD, and none of them good, and most all resulting in some form of fibrosis. Treatments are iffy at best and all have major side effects, some of which are dangerous.
So .. while I had intended to find me a pulmonary specialist well versed in pulmonary hypertension anyway, I now made this a major priority. I got the man I wanted, a Dr. Paul Fairman from MCV (a highly rated teaching medical school) and finally got into see him this morning. Forgetting all about Aortic Insufficiency, I had now convinced myself that I was slowly sufficating from ILD. My best hopes were that he be able to diagnose me with one of the more treatable kinds. He had been well prepped with all my records from the hospital and cardiologist, etc. I brought the films with me.
To make a long story short - after close examination of the films, he concluded that I do NOT have pulmonary fibrosis of any kind and he set about showing me what to look for and what was actually there. As he smiled at me, he made a "0" with his thumb and forefinger and said that I have zero chance of having it. What I DO have is the original diagnosis of AI with secondary pulmonary hypertension. He confirmed that by finding in my cardiologist's report one of the "back pressures" taken during the heart catheter from the LV (I think) -- or somewhere, of 30 Hg (I think it was). That is double what normal is and it IS causing the mild pulmonary HP and it IS backing up fluid in my lung cavity (interstitial?) space. My O2 de-sats are worse (resting I am 88 with shallow breaths and can only get up to 95 with deep breathing. I now blame this on myself who, like a dummy, cut my dose of diuretics in half about a month ago after I decided they weren't doing anything to eliminate my lower calf/ankle edema. I have slowly been getting weaker, but it never dawned on me that I might actually be building up more fluid behind my lungs BECAUSE I have not seen any of the weight gain that I'd been told to look for. I've actually been losing 2 lbs a week in the last two months on the low sodium diet.
Dr. Fairman agrees with my cardiologist that I have a fair shot at getting this SOB under control with continued weight loss and following the prescribed medicines. Needless to say, I couldn't wait to get home this evening to down another dose of diuretics, along with another one of those Potassium supplements.
You might say I had a smile on my face today ...
DB
