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My doctors have decided not to treat my MAC or Broncheostatis
Due to a pre-existing heart condition I have called Long QT Prolongation Syndrome they cannot give me the “big 3” and the extra one they threw in there. QT is where your heart stops beating. Wearing a holter monitor they tracked the longest interval of my heart stopping at 18 seconds. Unfortunately, ALL of the big 3 drugs come with the side effect of causing QT. Which would make it very unlikely that my heart would start again since I am already at the danger level. So, after confirming that with the hospital clinical pharmacist, they told me there is nothing they can do for me.
I write this long saga to ask for advice on how I can help myself going forward since I am now flying in the wind so to speak. I have read comments about ACT and pulmonary rehab but know nothing about it or what else I should be doing as I move toward the inevitable. I asked for a prescription for a vest and they refused. I asked about learning ACT and the doctor said I already told you about it and what to do - which was a big lie. I asked about pulmonary rehab and got no reply. So, any recommendations on where to learn to do ACT, pulmonary rehab and anything else that will help me fight this beast on my own?
One of the things I never want to hear again is “well we all have to die.” Which two of them said to me. Changing doctors won’t help because they will all prescribe the big 3, which has been ruled lethal for me. I’m fighting this on my own now because of the QT.
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@doberdoo. Did your Pulmonologist give a reason for not prescribing saline? Most all of us on this Mayo Clinic Site do nebulize and most all pulmonologists recognize it's importance for assisting in the clearance of sputum from your lungs. Was there a connection to your heart issue?
Funny....My first pulmo said no to saline when I asked for it so I asked my GP to write a prescription while I looked around for a new Pulmonologist. And I did make an apt with Mayo Clinic for a second opinion while searching for a new local Pulmo. I saw a terrific Dr at Mayo, who said that I most certainly should nebulize 2 times a day.
Not sure why Dr McShane does not like on-line saline but perhaps because it is not a pharmaceutical grade of saline that might have impurities. ?(only a guess). Without sounding too judgemental, you might look around for a new Pulmo who has expertise with Bronchiectasis and MAC.
There are also many great posts on this site. After my diagnosis, I first landed here, where I got good sound advice and guidance.
Again....wishing you good health going forward. Kate
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1 ReactionForgot...in answer to your question....7% saline from a pharmacy.
https://www.amazon.com/dp/B0CBQ5118V?ref_=ppx_hzsearch_conn_dt_b_fed_asin_title_1
I use this brand from Amazon and really like it. I also have a prescription for 7% and get that as well. I think this brand is very safe to use and I have never had an issue. However, I am sure Dr McShane had her reasons to say that in general. I assume you have a cardiologist? And you really should find a Pulmo that specializes in Bronchiectasis. Between the two of them there should be some help for you. Where do you live?
In reply to the questions regarding saline....I have purchased Saline from Nebology.com. Also DirectRX will provide it, along with Albuterol and Budesonide. All do require a doctor's Prescription but that should not be a problem. Medicare will cover Albuterol and Budesonide by the way. DirectRX sends them directly to you. Medicare does not cover Saline unfortunately.
I have only used the 3.5% saline as all my readings suggest it does as well as the 7% without the added problems.
Lately I have not been using saline...just albuterol and occasionally budesonide. This is after reading various articles which have prompted my experimentation.
I have also been trying to be very proactive in my care and have started an anti-inflammatory diet since BE is indeed an inflammatory disease.
People here report different experiences getting insurances and Medicare to cover 7% saline. Mine has covered 3% but not 7%. Go figure. So I get 7% on Amazon. It seems to work fine. You can get both without a prescription on Amazon if you are willing. I didn't realize Dr McShane advised against it. Can anyone say why?
I am so sorry you are dealing with this. Regarding air clearance techniques I have found this site :
https://bronchiectasis.com.au/resources/airway-clearance-videos
There are also youtube videos which might be helpful. This one in particular:
This is by Dr. Pamela McShane and was initially presented as a Webinar by runningonair.net
Where do you live?? NYU has a separate dept for bronchiectasis and MAC, experts i the area.
I think before you start treatments i.e. airway clearance, consult with a pulmonologist at one of the centers to monitor your cardiac illness and help you with safe pulmonary treatments.
Good luck!
That video is invaluable. I have watched it so many times. I chose not to go on the Big 3. I found the LungMatters group on Facebook, which basically follows what Dr McShane tells you to do. Be patient with yourself because it takes time to learn how to clear your airways and to completely change your lifestyle to fit all this in!
I was able to clear my MAC and pseudomonas with airway clearance. It took me two years but I didn't have any more lung damage. The hard part is accepting that this is a life sentence so if you do the precautions, you can live a full life, but you'll have less time in the day than "normal' people.
Summary of what I do:
Twice a day:
* Nebulize with levalbutoral .31mg for 10 minutes
*Nebulize with 7% saline for 22 minutes using the vest at the same time.
* Sinus rinse with STERILIZED water.
* Postural drainage. I lay on a slant board or a mat with three pillows under my butt. This took me a long time to figure out. I use the Autogenic Drainage app for 6 minutes, pause then do it again. I lay on my back then a little on my side/back. You have to experiment to find what works for you.
* All nebulizing equipment is sterilized by agitating in dish soapy water, then rinsed, then boiled for at least 10 minutes in distilled water. I use a baby bottle dryer or air dry the equipment.
* All drinking water is boiled for at least 10 minutes to kill the MAC. I use the Instant Pot for this or a big stainless steel pot on the stove.
* I use a Lifestraw Go cup when I am out and about. It's the only filter that takes out MAC.
* Exercise regularly
* GERD precautions - especially sleeping on an angle.
* Extremely limited alcohol, limited processed food.
* Only cooked food if I am at a restaurant.
* I use baking soda and filtered water to clean my veggies then rinse in sterilized water.
It's a lot but you work into it and then just get used to it.
I am on my fourth pulmonologist. They all say they know the disease, but most don't. I found a bronchiectasis specialist two hours away but it's worth it. He's not perfect but he really understands the disease.
You can do this!!
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1 ReactionIn regard to "everyone has to die sometime", I prefer my mother's philosophy: "where there's life, there's hope". I believe if you get on a daily program of health and movement as recommended, you will feel so much better. For many people, the big 3 (or 4 in some cases with MAC Abscesses) is often not possible due to side effects. I have had bronchiectasis for 15 years and now MAC A and so far, since I started nebulizing twice per day with 7% saline, doing the autogenic drainage exercises at night, meditating for 40 minutes per day in the morning, and trying to walk or swim at least 3 times per week (5 is optimum), I'm doing really well without the antibiotics. I do have appointments at National Jewish ID Clinic in May, so waiting to see what they think. My ID doctor wants to wait and see what NJH says, the meds she would put me on have some horrendous side effects. I really don't understand why your doctors haven't ordered a nebulizer and written prescriptions for at least 3% saline? Doing the saline really cleans out the lungs and it helps keeps the mycobacterium count down. I agree with all about the Dr. McShane video-it has really helped me. The meditation I do is a 40-minute healing meditation by Dr. Joe Dispenza (Empowering From Within). In some ways, it's very similar to Qi Gong which draws energy from space. Good luck! Kathy
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1 ReactionWould your primary care doctor prescribe it? I got it with a prescription from Walgreens using Good Rx coupon-60 vials for a little over $10.
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