1. < MAC & Bronchiectasis

Locations for treatment

Posted by cowgirlmt @cowgirlmt, May 7, 2018

I was diagnosed with MAC in August 2017 from a culture from a lung biopsy.. This all started in May 2017 when I was admitted to the hospital for pneumonia. They found a spot on my lung, and I had to have a lung biopsy done on first of July. My pulmonologist put me on the Big 3(Clarithromycin, Ethambutol, Rifampin). I could not tolerate any of those medications so they had me stop all medications and referred me to an Infectious Disease doctor. I was also put on Zithromax 500mg daily but could not tolerate that either. I have not noticed a change in my symptoms, and I am having more severe pains. I am 27 years old, and every doctor that I see says that I am to young to have MAC, but then they all review my records.
For the last year I have tried multiple medications for treatment, and at this time, my providers have told me to stop taking the medications due to severe side effects landing me back into the hospital. I see my primary, pulmonary, infectious disease, as well as an allergist. My allergist ordered a repeat CT, which marks 1 year from this all really starting. At the time they told me that it was dormant and I didn't have to worry about it growing, but I would continue with fatigue, cough, etc.. I had the CT done 2 wks ago and now they are telling me that it has grown and I need to seek a treatment right away. So now they are referring me to Tyler, Texas.. They have an 8 wk wait time, and I am considering moving to Montana so I can have support. This has been a struggle to handle on my own, and has caught me off guard. Does anyone know of a hospital in Montana, or surrounding state that would be a good place to establish? I am looking into COBRA, for coverage for the interim because I know that I am going to have to establish with all new providers when I move.

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Jo Ann K | @jkiemen | May 9, 2018

that's awful. We should have had better treatments by now. I feel that we are still in the dark ages when it relates to this condition. It is becoming more prevalent and it needs more attention. I feel so bad for you.

REPLY
1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 10, 2018
In reply to @windwalker "@cowgirlmt OMG Kimmy! I literally just got on this site to private message you You have..." + (show)
@windwalker

@cowgirlmt OMG Kimmy! I literally just got on this site to private message you
You have been on my mind A LOT lately. You disappeared for awhile and you were so sick. I thought that you had already moved back to Montana. I am very dismayed to learn that you are doing worse. It is more important now, more than ever to get top notch care. Do you still have my previous posts? Please look back at them, both open and private.

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@cowgirl Call the Healthwell Foundation and ask what drugs they can help you with. They paid for my tobramycin. There are other foundations too that will help you with your meds. I will dig put my notes and get back to you on that. Are you in Texas now?

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 10, 2018
In reply to @jkiemen "You would be a great one for the Nitric Oxide inhalation studies. Maybe try to reach..." + (show)
@jkiemen

You would be a great one for the Nitric Oxide inhalation studies. Maybe try to reach the company to see if they have a compassionate use protocol. AIT Therapeutics. I am hoping this will be an option for all of us one day.

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@cowgirl Is there any way that you can go on short term disability so that you can get yourself straight?

REPLY
cowgirlmt | @cowgirlmt | May 11, 2018
In reply to @windwalker "@cowgirlmt OMG Kimmy! I literally just got on this site to private message you You have..." + (show)
@windwalker

@cowgirlmt OMG Kimmy! I literally just got on this site to private message you
You have been on my mind A LOT lately. You disappeared for awhile and you were so sick. I thought that you had already moved back to Montana. I am very dismayed to learn that you are doing worse. It is more important now, more than ever to get top notch care. Do you still have my previous posts? Please look back at them, both open and private.

Jump to this post

@windwalker I will give them a call, luckily I work at a clinic/hospital currently so we try and get sample of my meds when at all possible. The most expensive part are my inhalers 🙁 I am currently in northern Louisiana and hoping to move back to Montana by the first week in June.

REPLY
cowgirlmt | @cowgirlmt | May 11, 2018
In reply to @jkiemen "You would be a great one for the Nitric Oxide inhalation studies. Maybe try to reach..." + (show)
@jkiemen

You would be a great one for the Nitric Oxide inhalation studies. Maybe try to reach the company to see if they have a compassionate use protocol. AIT Therapeutics. I am hoping this will be an option for all of us one day.

Jump to this post

@windwalker I have looked into short term; but I don't qualify at this time. Because I am still able to work; even though I almost fall asleep at my desk.. haha

REPLY
cowgirlmt | @cowgirlmt | May 11, 2018
In reply to @jkiemen "that's awful. We should have had better treatments by now. I feel that we are still..." + (show)
@jkiemen

that's awful. We should have had better treatments by now. I feel that we are still in the dark ages when it relates to this condition. It is becoming more prevalent and it needs more attention. I feel so bad for you.

Jump to this post

@jkiemen I wish there were other treatment options also, for advanced as most of the medical field is it still seems like there isn't much I can do at this point. It will all work out 🙂 I called Jewish National and have a phone consult scheduled for the 17th of this month.. Just hard because of appointments I have already took a cut in hours attempting to save PTO, but I have already used up over half my PTO.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 15, 2018
In reply to @jkiemen "OMG. That is allot to go through. That is how my MAC was found. Pneumonia, Spot..." + (show)
@jkiemen

OMG. That is allot to go through. That is how my MAC was found. Pneumonia, Spot and Biopsy. Please ask them to check you Immune Globulins and Vitamin D levels. Have they tried the every other day dosing or switched rifampin and to rifabutin or vice versa. Tried Clarithromycin instead of Azithromycin. I think Tyler Texas is a good place to go. I would have your MD personally call to get you in sooner. I heard they might be involved in some research on new treatments, otherwise Jewish National or Mayo Clinic.They need to do a sensitivity on the sputum. There is also Linzeloid to try.

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@cowgirlmt Hi Kimmy. How are you doing today? I know you are going through a very tough time right now. You are in my thoughts and prayers every day. -Terri

REPLY
cowgirlmt | @cowgirlmt | May 16, 2018
In reply to @jkiemen "OMG. That is allot to go through. That is how my MAC was found. Pneumonia, Spot..." + (show)
@jkiemen

OMG. That is allot to go through. That is how my MAC was found. Pneumonia, Spot and Biopsy. Please ask them to check you Immune Globulins and Vitamin D levels. Have they tried the every other day dosing or switched rifampin and to rifabutin or vice versa. Tried Clarithromycin instead of Azithromycin. I think Tyler Texas is a good place to go. I would have your MD personally call to get you in sooner. I heard they might be involved in some research on new treatments, otherwise Jewish National or Mayo Clinic.They need to do a sensitivity on the sputum. There is also Linzeloid to try.

Jump to this post

@windwalker Good morning! I am doing ok, just exhausted. I could easily fall asleep at work haha.. I am exhuasted but can't sleep:/ They put me on a couple new medications however not noticing a difference.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 19, 2018
In reply to @jkiemen "OMG. That is allot to go through. That is how my MAC was found. Pneumonia, Spot..." + (show)
@jkiemen

OMG. That is allot to go through. That is how my MAC was found. Pneumonia, Spot and Biopsy. Please ask them to check you Immune Globulins and Vitamin D levels. Have they tried the every other day dosing or switched rifampin and to rifabutin or vice versa. Tried Clarithromycin instead of Azithromycin. I think Tyler Texas is a good place to go. I would have your MD personally call to get you in sooner. I heard they might be involved in some research on new treatments, otherwise Jewish National or Mayo Clinic.They need to do a sensitivity on the sputum. There is also Linzeloid to try.

Jump to this post

@cowgirlmt I know it is hard. I remember dragging my exhausted body into work every day. It was horrible.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 23, 2018
In reply to @jkiemen "You would be a great one for the Nitric Oxide inhalation studies. Maybe try to reach..." + (show)
@jkiemen

You would be a great one for the Nitric Oxide inhalation studies. Maybe try to reach the company to see if they have a compassionate use protocol. AIT Therapeutics. I am hoping this will be an option for all of us one day.

Jump to this post

@cowgirlmt I hear ya! I remember being in that same boat when I was infected and still working. My heart goes out to anyone who has to deal with MAC and still work.

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