I suffered my second pnemothorax this last May and had corrective surgery. The thorasic surgeon told me I had moderate emphysema. However, the pulmanologist said that "it is important to distinguish between the pathalogic description of enlarged holes at the edge of your lung (called emphysematous blebs) that are common in tall thin people and the disease of emphysema". He went on to say I had the blebs but not the disease, and that if I stayed away from irritants then it is unlikely that I will develop the clinical disease emphysema.
Is this guy being straight up with me? Whats the difference between the clinical disease of emphysema and emphysematous blebs. Thank you
Your surgeon may be correct. Maybe your pulmonologist believes that only smokers get emphysema. Unfortunately, that is not true, but their progression of the disease will be quicker and more devastating and this is the type of emphysema most pulmonologists deal with on a regular basis. I hope that you don't have emphysema. Talk more to the surgeon so that you are more clear about your diagnosis.
When technology improves and we can actually see easily what is happening in the body, medical diagnosis will improve. Most doctors have no idea what is happening to people who have had an SP and continue to have problems and pain afterwords. We have to trust ourselves and figure out how we will manage our lives.
The pain, lack of energy and shortness of breath that SP patients experience are indeed real (even if there has not been a recurring SP). And remember, just because the lung does not collapse does not mean blebs aren't breaking and that aveoli aren't weakening and losing their ability to bring oxygen into the body.
As my emphysema (I believe a genetic form) has progressed, I no longer can tolerate high altitudes or high humidity or exposure to mold and chemicals - under these conditions, my body aches all over because the blood is not getting enough oxygen. Pulmonary function tests and blood oxygen level tests are not currently measuring our deterioration of our lungs. Our bodies are working extra hard to bring oxygen in.
Don't believe the hype that our symptoms may be psychosomatic. Doctors have always minimized the difficulty of having a disease that slowly weakens the body. Freud and his medical colleagues were very good at doing this and were cavalier in their judgment that an illness was "all in your head." But, as Freud recognized himself, humans tend to desire to have a leader who they will follow blindly. We can't depend on our doctors to lead us. Most are unable to think independently and they just don't know enough yet. So don't get angry......just be gentle with yourselves. We can stand up for ourselves......but we often can't control how others behave.
Tips: Eat plenty of good, healthy food, keep hydrated, take long walks (when you are able to) and avoid strong barometric changes (weak aveoli break when barometric pressure increases abruptly) and cold weather (make sure to cover your mouth and nose with a scarf when exposed to the cold). Lay low during these times if you can't avoid them. Ideally, it would be best to live in an environment with spring like weather, so if you can figure out how to do this year round, that would be very helpful. Use non-toxic products and the new steams cleaners for your floors. Don't expose yourself to a lot of dust and mold. Change your living space into an easy to clean place.
I have emphysema blebs. I have have the L.V.R.S - Lung Volume Reduction Surgery done. I was told with in a year I would be feeling brand new. I have to say my life has been screwed every since. I enjoy your knowledge about this disease where do you get all of your sources. I have pictures of my lungs from the surgery.
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