Living with Severe Persistent Asthma
I have always had asthma... for as long as I can remember I have fought this disease. However, it was a disease I could deal with. I lived my life. I didn’t think much about it. I would have my attacks deal with when they came and continue on with my life. Then it all changed once I got my bronchial thermoplasty for my severe asthma.
One day I went into attack and could not come out of it. Off to the ER. This spiraled into several years of what I can describe only as hell... I could no longer rely on my inhalers or previous asthma treatments to open me up. Every single time I had an attack, it meant a trip to the ER.
Six surgeries, hundreds of doctors appointments, and thousands of dollars for the specialist trying to figure out why my asthma was so out of control. Test after test.... my bronchial tubes and lungs were tired. They were shot from the years and years of attacks, respiratory infections, and pneumonia.
My pinhole bronchial tubes
Six surgeries... two bronchial washes, one vocal chord surgery to remove nodules that they thought might be blocking my airways. That did not work. I was still having attacks and not coming out of them without an ER visit. So they sent me to Vanderbilt Hospital.
There, they ran some extensive testing and found that my bronchial tubes literally had no more openings in them. The test showed I had a pinhole opening in all of my bronchial tubes, so when I had an attack, there wasn’t much they could do.
I was scheduled for a bronchial thermoplasty for my severe asthma which is a series of three procedures over three months. It is highly expensive. My insurance kept denying it while I kept going to the ER.
Finally, the doctors at Vanderbilt said I couldn’t wait any longer-- if I did not have the BT, then I would no longer be here. They would fight the insurance company later, but my life depended on this surgery. So, I went three times to Nashville for them to literally burn my bronchial tubes and remove the years and years of scar tissue that had built up from countless attacks, respiratory infections, and pneumonia.
Bronchial thermoplasty and severe asthma
They did my bottom left lobe first. The doctor said the average time he had ever had to burn was 80-90 times-- he burned mine 180 times. The second procedure was my right lobe.. again the average is 80-90, but it took 160. Then finally, came my two upper lines of my lungs. The average was 130-150 he burned mine over 200.
He said he had never seen that much scar tissue built up in the bronchial tubes and that it was a miracle I was still here. This did not cure my severe persistent asthma, but it did reduce my attacks once I healed. I was able to come out of my attacks again without going to the ER.
I never thought about my disease growing up. It was just something I had and that I dealt with. I had no idea until it one day almost took my life. I know how violent asthma can be. I'm better, but I still have severe asthma worse then I had when I was a kid. I have so many triggers, and sometimes I have attacks for no reason at all it seems.
Learned to live with a new normal
I have had to learn to live with a new normal. I used to run five miles a day and exercise daily before my lungs completely gave out. I would use my inhaler before workouts, and sometimes during or after.
Then, I got sick and got pneumonia. It seems like it was the final straw, and it pushed my lungs over the edge. They could no longer recover. The doctors said my working out beforehand probably saved my life. It had made my lungs a little stronger and were able to fight despite the closed bronchial tubes. However, now I can no longer run or work out. My lungs do not have the air capacity to do so. The doctors won’t let me. I am allowed to walk easily and that is it.
Good and bad days
I am a teacher so it is very difficult some days. I can be teaching and out of nowhere, I have a severe attack. I do come out of them now but it takes a lot of medicine to do so. I have my good and bad breathing days. It is just not something I thought would one day rule my life. However, it now does.
It is my new normal and I have to work my life around my asthma triggers. It is very difficult some days. It gets old fighting the constant attacks, breathing treatments, inhalers, medications, etc. Living with severe persistent asthma makes it difficult to do my job some days-- a job that I love!! I love teaching and I hate when it scares my students when I have an attack while I am teaching. It affects my family because sometimes I can’t go places or do things due to living with severe persistent asthma. It gets frustrating sometimes.
However, I know I am very blessed to still be here. I have to enjoy and soak up my good days and fight through my bad days. Asthma is a disease that fights hard, but I hope I can always fight back harder with God’s help!
Have you ever gotten "moon face" as a side effect of prednisone?