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donmol posted:
Another update. I went for a doctors appointment on 2/6/2012 and ended up getting admitted into the hospital with status asthmaticus with a secondary diagnosis of klebsellia pneumonia. I was released on 2/16/2012. I am still doing nebulizer treatments every 3-4 hours and on a heavey dose of prednisone. This time my pulmonologist is going to keep me on the theopholyline as well as all the other asthma medication that I have been taking. These bouts are getting very scary. This time I needed a triple lumen central line and ICU most of the time I was there and I am not bouncing back very fast.

I am getting scared that I am actually going to die before they can get control of this asthma. This is three hospitalizations in less than six months. I have the portable nebulizer and the extra stash of prednisone and the action plan and all the emergency stuff in place but this is getting serious.

I has a friends son die three years ago because of his asthma not being under control and I feel I am heading down that road if I am not careful. My family is getting very concerned. I did fill out my living will as I feel it is time for it. I have an 11 and 13 year old daughters and I feel they need to know what my wishes are along with my husband at this stage.

I was told I was very close to the Ventilator again this time. I faught with them as I have been vented X 4 and that is not fun. They were able to keep me oxygenated with a venturi-mask at 10 LPM. What hard time to wean off all that O2.

Well if any suggestions please let me know. This week is full of follow uo appointments with pulmonology, PCP and blood work and x-rays.
donmol
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amcate responded:
I don't know if my suggestions will help. During the year they could not get me controlled they had me on and off prednisone, and also theophylline as well as the other asthma meds. I am DNR/DNI and I don't want to risk being resusitated against my will, so I typically will go to urgent care, but not the hospital. Apparently, this is not you. It is good you filled out a living will. I recently did the same in case I have problems at work, which is in a hospital. I also appointed a medical POA.

When I still had problems, I asked a friend for advice. He said to move since the area has heavy air pollution. I went to a small town, and my peak flows increased 20% in the first month. I had a higher peak flow without pred and theo in the small town than I did in the big city with both drugs.

I continued to look at every possible trigger I could find and eliminate it. My lungs hate dry air, but too humid and they hate the mold. Just right is 20-40% humidity. I got a humidifier that does not grow mold, and a humidistat so I can keep it just right.

I wear the mask, which costs socially and also with potential job discrimination. But it does keep the germs away and it warms and moistens the air and blocks pollens and dust. I'm allergic to household dust and dust mites.

My skin gets red under the clothes, so I changed laundry detergents, and skin is happier. They don't have strong smell, so maybe helps asthma.

I also changed cleaning agents-use baking soda and vinegar now. No oven cleaner.

NASA did a study of plants that absorb indoor air pollutants and don't give off respiratory irritants. I bought some of the plants.

I found dairy does not like my sinuses (or vice versa). So, no more dairy. I did try to eliminate wheat, which seemed to help, but it's hard to avoid.

There is information on the internet on elimination diets. In one form, you take away the five most problematic foods and add them in one by one to see if trouble starts again. In a more extreme version, which I never did for concern of missing nutrients, you eat only white rice for awhile (unlikely to be an allergen) and gradually add in one food at a time until trouble arrives. Then you take away that food and see if things calm down, then you add it back in to see if things get bad again.

Another option is to go to National Jewish or another good place to get a thorough diagnostic work up to be there is not a secondary disease, like alpha-1, that is not diagnosed.

A card I got on alpha-1 says "It is recommended that all subjects with COPD or asthma characterized by incompletely reversible airflow obstruction should be tested once for AAT deficiency" adapted from the American Thoracic Society/European Respiratory Society Statement: Standards for the diagnosis and management of individuals with AAT deficiency. Am J Respir Crit Care Med 2003; 168:818-900.

I hope this helps.
Hope this helps.


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