I was recently (in the last year) told I have severe asthma. The doctors (pulmo, cardio, allergist, and sleep docs) all have told me the kind of asthma I have can kill me before I even realize what's happening. They claim it's ALWAYS "active"........there isnt one single thing that can trigger an attack because it's always "active". I use mega inhalers and meds to avoid this obviously. I have trouble breathing all the time it seems. I dont feel it necessarily when Im not up and moving around but it's horrible with activity. I no longer can go shopping, I really cant go for walks, any type of change in the weather almost kills me but HEAT is the extreme worst. ANY heat and ANY humidity restrict me completely. Smells of ANY kind are terrible. Stress is terrible et al. Ive been instructed to not drive with the windows open......nor can I sleep with the windows open. If it's over 60 degrees I must use the AC at home and I keep my bedroom as cold YEAR ROUND as I can get it. I have terrible UARS and SDB that is being treated with a BiPap with O2 and a Cold air Humidifer added in.
I thought any asthma could have the potential to kill?? Why is mine so much different or worse? Before you ask, I AM seeing specialists and am following orders/directions to the letter. I do not smoke any longer THANK GOD...nor do I allow any smoking anywhere near me. I just dont see this getting any better. Is that normal with this kind of asthma?? It scares me that it has limited me so severely in the last year.
If anyone has any advice Id sure welcome it.
As I understand your message, you were diagnosed with asthma, just this past year; not just asthma, but very severe asthma that has dramatically changed your life. I am sorry for the bad experiences you had. Asthma is often described in terms of its severity. Those with severe to very severe asthma generally are at a higher risk of death than those with
mild-moderate asthma but not always. Right now, whatever your risk, it is less important than finding and, if possible, successfully treating your asthma.
I imagine that your doctors have considered other respiratory diseases that can simulate asthma and have ruled out those diseases, including vocal cord dysfunction (VCD). The maxim is that not every lung that wheezes does so, because of asthma. I also assume that your asthma did not begin suddenly following an intense home or industrial exposure to a substance either highly allergenic or irritating to the lung. In this same context it would be wise to take an inventory of everything that you have been exposed to, be it at home, at work or elsewhere, for example smoke or fume inhalation.
I would describe what you continue to experience as a desperate situation in the sense of the effect on your quality of life. Please consider seeking a second opinion at one of three institutions whose physicians have special interest and experience in the diagnosis and treatment of asthma of this severity. The three institutions are National Jewish Health, my institution in Denver, Colorado under the direction of Dr. Richard Martin, the University of Pittsburgh Medical Center in Pittsburgh, Pennsylvania whose asthma program is under the direction of Dr. Sally Wenzel and Duke University in Durham, N.C. where the asthma program is under the direction of Dr. Monica Kraft.
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