1. < MAC & Bronchiectasis

My doctors have decided not to treat my MAC or Broncheostatis

Posted by doberdoo @doberdoo, Mar 2 1:54pm

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.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

irenea8 | @irenea8 | Mar 5 7:32am
In reply to @robbiemer "In reply to the questions regarding saline....I have purchased Saline from Nebology.com. Also DirectRX will provide..." + (show)
@robbiemer

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.

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The saline is very important as most here will testify. I tried 3% at first but found the 7% far more effective. But I tolerate saline well.

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mmahlik | @mmahlik | Mar 5 9:16am
In reply to @prayersandmotivation "That video is invaluable. I have watched it so many times. I chose not to go..." + (show)
@prayersandmotivation

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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I’ve just been diagnosed with MAC and am terrified of the antibiotics so am trying to “heal” myself. Your post was so helpful and hopeful!! It’s a ton of work but a lot of it is general health stuff I should have been doing all along. Thank you for your post!!

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1 reply
prayersandmotivation | @prayersandmotivation | Mar 5 10:49am
In reply to @mmahlik "I’ve just been diagnosed with MAC and am terrified of the antibiotics so am trying to..." + (show)
@mmahlik

I’ve just been diagnosed with MAC and am terrified of the antibiotics so am trying to “heal” myself. Your post was so helpful and hopeful!! It’s a ton of work but a lot of it is general health stuff I should have been doing all along. Thank you for your post!!

Jump to this post

You can do it! I got very discouraged because the MAC kept showing up every six months when I was tested. Then finally, after more than two years, it was gone!

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jc76 | @jc76 | 6 days ago

@doberdoo
You have a heart condition. Are you seeing a EP for your heart condition? Has anyone discussed ICD/Pacemaker where heart can be electrically pulsed? Also if you sustained a stoppage of heart for a period of time programmed into ICD/Pacemaker it will shock you back into beating.

I have QT. I have a ICD/Pacemaker due to low EF, tons of PVCs, tachycardia. With fine tuning of my ICD/Pacemaker and medications for PVCs and tachycardia have had dramatic improvement. I have QT also. Many many drugs affect QT so my Mayo doctors work very closely to limit anything that causes additional QT.

You don't mention how old you are. Any doctor who tells you "Well we all have to die" is horrible for a patient to be told. For me would not see that medical professional again. You would not hear that at Mayo Clinic. I am under treatment by pulmonoligist for chronic bronchitis, asthma, and what they described as partially collasped airway. I have as needed inhalers but my PCP, HF, pulmonologist all worked togther as team approach to my treatments.

Are you anywhere close to a major medical facility (like Mayo, Cleveland Clinic, John Hopkins and many others) that have the latest technology and treatments? At Mayo if you are diagnosed with QT and Bronchial breathing issues, you come under what they call Mayo Care Team and this will bring all medical professionals working together to find best treatments for you while being experts in their area.

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kathyjjb | @kathyjjb | 6 days ago

My Humana (Medicare supplemental insurance) insurance pays for 240 4ml vials of 7%. Out of pocket is $2-$3.

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