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New to MAC and considering treatments options: What did you do?
Hi all,
I started getting chest pains and breathing difficulties early May and after much testing and a biopsy, I was diagnosed with MAC. My doctor did not give me much information. He only told me that my symptoms were not severe enough for treatment and just said we would get a chest x-ray once a year to monitor it. Is that normal? Unfortunately, this was a phone call and he was in a rush to hang up and did not seem to want to answer my questions (I had to ask him to stay on the phone and then asked if this is just a chronic thing I will have now or if it will go away eventually and was told "I don't have a crystal ball.") He gave me zero resources and no recommendations for what to do/avoid. Is there a good place I can learn about this? I only see stuff about the year plus of three antibiotics which he said we don't need to do right now and nothing about day to day life. Is there something I can do to make sure it doesn't get worse/slow its progress? Any direction would help. Thanks!
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I've purchased and used a number of nebulizers that look just like this from amazon. None have lasted more than a few weeks using 7% saline. Not good when you are on the road and depending on them!
I now use the Pari TrekS both at home and when traveling. I've been using it twice a day (most days) since I bought it in May.
Anna
I got a handout from my doctor at cleveland clinic. Have you looked at NTMinfo.org?
What do you use to replace your vest when traveling?
I have never used a vest. I am able to do airway clearance with an Aerobika or with breathing and huff coughing.
Maybe someone else here will have an answer.
Sue
Hi there, I have had Mac twice and have it now. I would contact the National Jewish Health in Colorado. They deal with this all the time and our great source of information. Everyone is different with this but it does sound like you need a new doctor. Hope this helps.
I just returned from NJH on Nov 4th. All I can tell you is NJH had me scheduled to measure for a vest. I was directed to meet a respiratory therapist in a room filled with vests. I actually already had a Hill Rom vest that my pulmonologist / Infectious Disease doctor in Tampa had recently ordered for me. They made sure my vest was the correct size for me - extra small. It appears that they believe vests should be utilized. I nebulize with 7% saline while using my Hill Rom vest for 20 minutes. NJH also told me to nebulize with 7% saline twice a day - I had been using 7% in the morning and 3% around 5 PM.
They are expensive but our insurance picked up a huge portion of the cost. I believe the vest does work - chest shaking while nebulizing.
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2 ReactionsThe unit showing in the above photo is my Hill Rom unit. One hose goes on the left and one on the right - up up and away increasing the air and then gently vibrating for time specified.
A vest is in addition to a nebulizer. I left my nebulizer at home - maybe a God send and had to buy one at NJH. My older one is a
Phillips Respironics and the one NJH sells is a Ombra.
Thank you for your report. I also have a Hill Rom vest and nebulize
Twice per day with 7 %.
How long have you had Mac? Are you on any drugs?. What are your symptoms? What is your opinion of NJH? I would love you go there, but in the Kaiser system so would be too expensive. Sorry for all the questions. Patricia
I was diagnosed with MAC four years ago. I honestly don’t remember what I experienced that led my primary care doctor to order a sputum culture other than prolonged fatigue. I cough up green mucous every day. I was on the three meds - Rifampin, Azithromycin, and Ethambutol until recently. My local pulmonologist suggested I take a break to give my body a rest from the meds. The doctors I saw at NJH told me not to take the three meds until they get a culture back which they will treat with the three meds first. They told me there is a good possibility I have built up a resistance to the meds having been on them so long. There is no reason to take them if my body has built up a resistance to them. NJH is amazing and while I have found the majority of medical professionals in my area know nothing to very little about MAC, it was comforting to know those who know. My daughter who has been a RN for 32 years went with me and she said many of the same tests that NJH did could have been done locally. Keeping in mind that hotels are not cheap, rental cars are costly, and air fare adds up to a very expensive trip. There were two days that I didn’t have any tests but we had a hotel room and car rental to pay. They did a echocardiogram - although we have regular checkups by our own cardiologist in FL. My results - no problem with my heart. They are thorough at NJH but it is not an inexpensive trip. The 5,000 feet above sea level bothered me more than anything. I still haven’t caught up on my rest. Diana
Thinking over everything I would not make the trip to NJH again. After my trip I am not doing anything different than before. The only thing NJH was able to tell me was I had pneumonia in my left lower lung with MAC through the rest. I was put on an antibiotic to address the pneumonia. Our hotel even charged $5 a day for parking our rental car on their property. The one thing that will affect my treatment going forward is if I have built up an immunity to the three meds they said there was another to try. I won’t have the results of the sputum culture for a few weeks.