Anyone familiar with Bronchial Thermoplasty?

[BookNut]

Has anyone had this procedure? I have been having a terrible experience with Cleveland Clinic which I have chronicled elsewhere on this forum. I am on my way home to NY, having accomplished almost nothing in spite of having been in Ohio for 3 MONTHS. Dr. Culver contacted me today. Not personally (I guess that would be too much to expect after what he has put me through), but through his secretary. His suggestion? I should stay longer and go to the ASTHMA doctor he has passed me off to. My recent CT did not reveal anything new. He thinks I have severe asthma so I need to be treated by the asthma center. There are several treatments such as Bronchial Termoplasty. I let him know that I am skeptical of BT for the following reasons:

My research about the procedure makes me wonder if it is even a possibility for me, as it requires that I be off prednisone for 2 weeks and that I not have had an asthma attack for 14 days. I have not had one single day without wheezing 24/7 for 3 full years so far. Even with DubNeb, singulair, and Symbicort daily, and even immediately after taking my medicine. Right now my peak flows are measuring between 180-225. I have never reached even a borderline normal range.

So - I would be very interested to hear from any of you who have had experience with this procedure.

Thanks for any ideas you can offer me!

[mrtmeo]

Is it possible that u could have silent reflux?
There is a huge link between acid reflux and asthma.
The pepsin enzyme gets into the tissues of the esophagus and even into the lungs and with an acidic environment, it attacks the tissues.
Pepsin belongs in the stomach.
There is a study that showed alkaline water with a ph of at least 8.8 can irreversibly inactivate the pepsin enzyme.
I thought this was happening to my mom, but the alkaline water wasn't helping her because hers is something related to the vasculitis.

[BookNut]

Is it possible that u could have silent reflux?
There is a huge link between acid reflux and asthma.
The pepsin enzyme gets into the tissues of the esophagus and even into the lungs and with an acidic environment, it attacks the tissues.
Pepsin belongs in the stomach.
There is a study that showed alkaline water with a ph of at least 8.8 can irreversibly inactivate the pepsin enzyme.
I thought this was happening to my mom, but the alkaline water wasn't helping her because hers is something related to the vasculitis.

thanks! Acid reflux and hiatal hernia have been ruled out.

[mrtmeo]

thanks! Acid reflux and hiatal hernia have been ruled out.

Have you had a HRCT scan of the lungs to see if there is any bronchial stenosis or nodules?
Do u know where the wheeze is coming from or if it is only on inhale or exhale?

[BookNut]

Mrtmeo, Thanks for your interest!! It is primarily on exhale. During exacerbations it is both. My peak flows are 150-180 prior to nebuliazation. I use DuoNeb 4 or 5 times a day, and symbicort twice a day. the ideal peak flow level level for my age is 319. after nebulization, it goes up to 200-250. I get so short of breath that cooking dinner is an incredible effort. I have the elephant on the chest feeling. At best, the elephant gets up for a week or two and I am only winded. Have been on pred tapers 8 times in the past year and am now classified as pre-diabetic. Lots of fun. I am sick of feeling exhausted all the time.

[mrtmeo]

Mrtmeo, Thanks for your interest!! It is primarily on exhale. During exacerbations it is both. My peak flows are 150-180 prior to nebuliazation. I use DuoNeb 4 or 5 times a day, and symbicort twice a day. the ideal peak flow level level for my age is 319. after nebulization, it goes up to 200-250. I get so short of breath that cooking dinner is an incredible effort. I have the elephant on the chest feeling. At best, the elephant gets up for a week or two and I am only winded. Have been on pred tapers 8 times in the past year and am now classified as pre-diabetic. Lots of fun. I am sick of feeling exhausted all the time.

It sure sounds like steroid tolerance.
Once someone is on a nebulizer with steroids, they get worse and worse because the steroids cause a rebound effect when u reach tolerance.
This causes anxiety and bronchial spasms.
I have seen this way too many times before and never knew anyone that was able to taper off.
This can happen with prednisone too.
It takes a long time for adrenals to come back and start producing cortisol.

[BookNut]

It sure sounds like steroid tolerance.
Once someone is on a nebulizer with steroids, they get worse and worse because the steroids cause a rebound effect when u reach tolerance.
This causes anxiety and bronchial spasms.
I have seen this way too many times before and never knew anyone that was able to taper off.
This can happen with prednisone too.
It takes a long time for adrenals to come back and start producing cortisol.

Hmmm... the symbicort inhaler is a steroid I believe. DuoNeb is what I use in the nebulizer and it is NOT a steroid. I will ask about that at my appt on Thursday. Thanks again.

[annekat]

I'm always interested in your updates, Jacquie. My mother had severe asthma toward the end of her life and I'm not sure we ever knew what caused it or that she was being properly treated for it. She did use a nebulizer and some inhalers and I'm not sure what. Yes, I'm pretty sure Symbicort is a steroid inhaler. My heart aches when I hear of you having trouble preparing dinner or having an elephant on your chest. FWIW, I think you are probably in better physical shape, aside from the asthma, than my mother was. Some interesting ideas have been discussed here, and I have nothing to add but that I'm thinking of you. I've had some severe enough asthma in my life, though not currently, to know that "elephant" feeling and how scary it is, and how helpless one can feel.

[BookNut]

Thanks so much Anne! It is always good to talk to you and get your ideas, perspective and sympathy. I am feeling a bit better this am. We are at our son's house in PA and I am looking forward to going to the Daniel Boone homestead today... A nice outing which should give me a chance to get some exercise, without too much strain and evaluate where I am.

I have started to use a peak flow meter and am hoping that the graph will help my doctors understand where my breathing really is. I am using an awesome phone app to chart the levels, which fall into the categories of Well, Worse, and Critical. I am in the critical level half the day and the worse level half the day. This might help them understand that when I am comfortably settled in their office resting, that is probably not the best way of judging how I am doing.

I get to see my asthma specialist at home on Thursday. Her office staff was able to squeeze me into the schedule. I sent her a detailed update via the MyChart system. Hopefully she will have time to review it before she ses me and that willsave time. By next thursday I will be more than half way through a pred taper....so I will be glad to have the peak flow chart to show her that my breathing has not been as good as it sounds.

when did your Mom develop asthma?? I am always surprised to have gotten this so late in life. Did she have COPD as well? Did she smoke or work in an environment that might have irritants?

Thanks again!!

[annekat]

My mom did not smoke or have COPD, that I know of. She definitely worked in an environment with irritants, chiefly the typesetting ink that they used at the newspaper where she worked as an editor. So the story was that from that she had developed a chemical sensitivity and would react to all kinds of things. At one point she had pneumonia for awhile, though I'm not sure whether it was viral or how she got it, but she was in the hospital for a few days. Anyway, we just thought of her as having severe asthma from the chemical sensitivity, and there didn't seem to be much to do but for her to use the nebulizer and other meds. She used prednisone for awhile after having pneumonia but got temporarily diabetic from it. I think she got off of it and was doing without it between then and when she died. She had just been up here in Olympia visiting and a day or two after she got back, she collapsed and died, and we thought it was an asthma attack, but it turned out to be a heart attack. We'd never heard about anything to do with her heart. She had been overweight but had slimmed down a lot since having a new male companion in her life for a few years. I wonder if the asthma had taken a toll on her heart. She was only 68 when she died. So I hope you are getting thoroughly checked out in all ways, including your heart. I think they are better about checking women's hearts these days, as heart disease is no longer thought of as a men's disease. My dad, who was a doctor, read the autopsy report and I know he said there was heart disease, I'm not sure if it was hardening of the arteries, excessive plaque, or what, and he's gone now too, so I can't ask him. Obviously I need to keep better tabs on my heart, as well. But I know I'm in better physical shape than my mom was, despite having Wegs, and I'm sure you are, too, when you are getting a respite from your asthma. I'm glad you feel better today and will get out and about, and also that Bob is there in your life.... and I hope he's doing well.

I guess the upshot of all that was that although we had an explanation for my mom's asthma, provided by her, the chemical sensitivity from the typesetting ink, I wonder if there could have been some other things going on that we or she or her doctors didn't know about and if they hadn't thoroughly investigated all the possibilities.