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Managing MAC without antibiotics
MAC & Bronchiectasis | Last Active: Feb 19, 2024 | Replies (115)Comment receiving replies
Dear @desperada, Your story saddens me. My condolences on the loss of your husband. I know it is a big adjustment to life without him. I am very glad that you have two dogs. They'll keep you going. I have one little teacup poodle that goes everywhere with me and she never leaves my side. It is important to have that added energy in the house to curb loneliness. I was diagnosed on 2005 with mac; I too declined the Big 3 meds. And yes, that pulmonologist was furious with me for doing so. I found a new pulmonologist. Over the following years no pulmonologist knew much about mac or how to treat it. I was VERY sick for a number of years and was told I was headed for a lung transplant by my local dr. He suggested that I go to Florida and seek help at Mayo. Mayo dr agreed, I was getting close to needing a transplant. That was in 2013. I was tested for pre-qualifying for a double lung transplant in 2016. I was placed on the 'deferred' list because I was not quite bad enough to get listed yet. I have been under care at the Mayo Clinic since 2013 and today, I feel like a normal human being! I once couldn't walk 15 feet without stopping to catch my breath. I can now walk many blocks and ride my bike 12 miles. My point is, never give up on yourself. Good medical care can make a huge difference. I have a feeling that your grief is making your other health issues feel that much worse. The mind and body are very much connected. I hope that you will take the time to read over older posts and glean some helpful information about dealing with mac. It would be great if you could get to one of the Mayo clinics. Besides having the best doctors (people come from all over the world to see them); they are always compassionate and respectful of their patients. I am here for you friend, as well as others in this group. You are not alone in this. Getting to GOOD medical help is what you need. I would be happy to look up the nearest medical facility that may be better equipted to deal with mac. May I ask where you live?
Replies to "Dear @desperada, Your story saddens me. My condolences on the loss of your husband. I know..."
Oh! You know what? They probably took a culture when they performed the bronchoscopy on June 12. I guess that's the culture they said takes 8-12 weeks. So I'm still waiting on that! Things are so messed up. I ask the doctor's office for copies of results and they give me summaries. I'll figure it out next week. Everyone's gone for the week end now anyway.
@desperada...that is correct about growing a culture. The minimum time to grow MAC is 8 weeks...So if they do not have the results back yet then they cannot give the results to you. I wound up having to go to the hospital that did my bronchoscopy to get a hard copy of my lab results as it was the only place to keep the lab work information on record. My Dr's office said they did not have a copy. Keep in mind that MAC is slow growing so your angst over getting a Dr immediately is only upsetting you. You WILL find a good Dr that will care for you. Until you get your results, you do not even know if you have MAC. Also keep in mind that your body is no different then before the bronchoscopy...the only difference now is that you know you might have an issue. (or maybe not?) Many folks have this disease for years before it is discovered.....and there are probably plenty more walking around with it that have no idea they have it. So we are way ahead of the game with the knowledge that we do have an issue which gives us an opportunity to address it in one fashion or another. I am sorry ....but what in the world is the 2 year nonsense that your pulmonologist said to you. I think I might take a swing at him if he ever crossed my path.
Please have a good weekend...maybe with a great old movie with your dogs by your side. Bring on the stuff you love! Kate
@desperada "One crappy dragon at a time". I can tell you have a good sense of humor despite everything. Please don't fret too much about your mac. Avium bacterium grows very slowly, so you have time to plan your war. I and a few other members have noticed that we came down with our mac infections after a stressful traumatic death in the family. STRESS is a killer. This mac is not going to spread and get you any time soon, so let that dragon sleep for the moment. I have a favorite saying; "Don't let the worries of tomorrow steal from the joys of today." I think you are trying to live in the moment this weekend; enjoying your coffee and your pups. What kind of doggies do you have?
@desperada Sounds like your culture hasn't finished growing yet, so they cannot give you what they don't have yet.
@ling123 That's right Ling, it needs to be cultured for a mac diagnosis. I am glad you mentioned that because it seemed to have jarred @desperado's memory of her bronchoscopy sample. I swear, I love all of you!
@desperada On what grounds did your dr give you a two year expiration date? You can live out your natural life span with fibromyalgia and mac. I asked my dr at Mayo how long he thought I had. He gave me an odd look and said "We don't go there, our job is to keep you alive." Good answer!!
Terri, I asked my doctor too how long I had to live. He said until a bus ran over me.
@flib Ba, ha, ha!
@desperada, Hi, There is a nice little Marriott right next to the Mayo Clinic. You can see the clinic from the hotel, walking to the clinic is an easy short walk. There is a nice little desert trail from clinic to hotel if you want to take that. Good luck. Renee
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How did they diagnose you with MAC without a single sputum test? CT scan can show that your lungs are not healthy. Correct me if I'm wrong, @windwalker Terry, but I don't believe the CT scan or chest X-ray can show whether you have a bacterial infection or not without sputum test result.