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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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Sorry to hear this! Maybe you can find a Respitory physiotherapist they can teach you all about airway clearance therapy! I hope you can find someone near you!
I am really sorry that you are going thru this. You’ve come to a good place for help.
Question-if your QT is that dangerous for you, have they discussed treating it? Are you on any meds that could be causing it?
What does CT say about bronchiectasis? Mild, severe? Is your cough productive?
Does your cardiologist think it’s ok to for you to exercise?
There are many resources for help with airway clearance.
You could start with deep breathing and huff coughs. You tube has videos on huff coughing. You can also buy an aerobika or acapella device from Amazon and the companies have videos on their use.
Postural drainage can help if you don’t have reflux. Google has diagrams. If you look at what the CT says about the location of the infiltrates you can
Do you have a nebulizer?
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2 Reactions@doberdoo
Not a medical expert and certainly cannot give guidance on what to do.
I have a ICD/Pacemaker. My pacemaker part pulses my heart to beat at 70 BPM. Have you talked to a EP about having a pacemaker to pulse your heart which seems to me would prevent the heart from beating as you are getting a mechanical electrical pulse of heart.
Because of medication my heart rate would be in the 30s. With pacemaker it stays steady at 70 BPM.
I would definitely consider contacting a Electrophysiologist (EP) to let them go over your case and see if they can help you. If the pacemaker would prevent the medication interfereing with your heart rate issue it might bo something to consider.
I would at least get a second opinion and also see a EP.
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1 Reaction@doberdoo Hello .... Below is a link to a gem of a video by Dr Pamela McShane on airway clearance. She is very admired in this NTM community. Your doctors do not sound very reassuring. I have received bad advice
from several Pulmonologists in the past. I'm glad that you have found this group and maybe You will find a Doc that specializes in NTM that can be more helpful to you.
I was diagnosed with Bronchiectasis and MAC about 7 years ago. I am sure that I have had it much longer. I've never been told that I need to take antibiotics for either Mac or Bronchiectasis. And incidentally, I have done just fine without them. I do nebulizing 7% saline twice a day, then airway clearance. I eat well and exercise the most that I can. Where I have had a problem was in contracting an additional "bug", Pseudomonas. When in public, I am very careful and always use a n-95 mask, but unfortunately picked up this "bug". The one time I had a surgeon's mask and not an N-95 was the time I encountered a coughing fool in the market, which I believe resulted in a pseudomonas diagnosis. I was prescribed a fluoroquinolone antibiotic (Cipro, Levo) twice for the Pseudomonas. This class of antibiotic can have bad side effects for some people and it is labeled a "black box" antibiotic by the FDA, meaning it should only be used as a last resort antibiotic. Many doctors do not tell you this. I have developed tendinopathy from it. Sorry, I digress.
If you are doing ok with your Mac and Bronchiectasis, some doctors do not treat with antibiotics. Try not to worry about not taking antibiotics...sometimes the cure is much worse than the disease. And hopefully you can find a Dr that specializes in NTM disease and has more empathy. Good luck to you. Kate
Oh..and don't feel you are missing out without a vest. I have one and believe it doesn't do anything for me. The video is invaluable
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1 Reaction@doberdoo I am sorry to hear your experience with the doctors in terms of what they have said to you and want you to believe.
You will be able to learn from all that is posted here on Mayo. Most of all I would think it important that whatever you start new at that you go slow and build up, especially with exercise, light exercise to start if you are not doing that now. Walking and then walking with carrying light weights might be something to think about.
The Active Cycle Breathing Method, Postural Drainage and Autogenic Breathing Exercise , Huff Coughing etc. There is information and video's on the internet for all to help you, us, in working to clear the mucus out of our lungs. Most pulmonologists who specialize in treating BE, Bronchiectasis, patients recommend nebulizing.
The routine of what we have to do for our Bronchiectasis takes time to learn and hopefully perfect. Eventually it becomes easier and less time after understanding it all. We also learn about what is best for ourselves as we go along, in the big picture, because we are all different in multiple aspects and ways.
Hope you are feeling a little better, emotionally, with seeing the posts here on Mayo. Wishing you the energy and strength you need to work through all of this. Take it slow, one step at a time.
Barbara
Thank you for your response. I watched the video which was excellent and will incorporate everything daily. I do have a question. Where do you get your saline? That is also something my pulmonologist refuses to prescribe so I ordered some from Amazon. However, the doctor in the video advised not to use any saline ordered online. Has anyone had success with online saline nebulizer treatments?
Thank you Barbara for your response and encouragement.
Thank you very much Kate for your response and positive comments. I watched the excellent video. Thank you for sharing it. I will start doing everything she says. I do need to ask where you get your saline because that is one of the things my pulmonologist refuses to prescribe. So I ordered some from Amazon. However Dr McShane advised not to use any purchased online. Will I get any benefit from my Amazon saline?
My cardiologist has never talked about a pacemaker or defibrillator. I also suffer from Superventricular Tachycardia and Ventricular Tachycardia. She has been treating me with Furosemide, Losartan and Nadolol. Seems unconcerned unfortunately. You offer excellent advice and I will ask her about it. Thank you.
Thank you for your response. My infiltrates are diffuse. In both lungs and all lobes. Nodules and Ground Glass Opacities throughout. CT does not mention severity. I do have a nebulizer but can’t use it because the drug they prescribed for it will cause the QT Prolongation. I asked for, and they refused a prescription for 7 percent saline.