New Diagnosis of MAC/MAI & I'm scared

Posted by sueinoregon @sueinoregon, Sep 10, 2018

Hi, I am new to this site. I just got the results of my broncoscopy a week ago. First I was told I had Staph Aureus in my lungs & was put on Levaquin X 10 days. OK, Now she tells me I had MAI & I think the other one is MAC. Anyway, My pulmonologist said we are waiting for the sensitivity test to see if the bacteria in my sputum are sensitive to the antibiotics….or not….since now some strains are resistant. My name is Sue from Oregon and I am 61 years old with Sjogren's Syndrome, Rheumatoid Arthritis, Bronchiectasis, and now THIS. My RA & bronchiectasis are extensive with a lot of coughing and I am on a biologic immunosuppressive drug, infusion, for the RA. I read several posts at this site, looked up the side effects of the 3 meds my pulmonologist said she will put me on, scheduled an eye and hearing exam. This is scarey!!!! I'm already weary of my life having been turned upsidown in the last 4 years with my health struggles. (On SS disability now) I talk with a clinical psychologist every other week & she is helpful. Is it really helpful to talk about it online? Or does it just make one ruminate about it all the more? I'm not sure which it is. Please let me know if it has helped you cope, or not. Thanks.

@sueinoregon ….to share thoughts on where to go for second opinion…..I opted to go to National Jewish Health in Denver. It alternates with Mayo as #1 respiratory facility in USA. It is thorough. Check it out under national jewish.org. As important as everything else, They take Traditional Medicare/supplement. I did not see a bill when I underwent 2 weeks of testing etc.Mayo accepts traditional Medicare but tacks on a 15% addition to what Medicare determines is the charge. Your Medicare/supplement/ medigap policy may have the rider for the 15%. NJH prior to arrival will evaluate financial costs….if any.tdrell

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tdrell…..…. just for the record if it might help anyone, I have medicare and blue cross\ blue shield I've been to Rochester three times and have continued contact with my pulmonologist through their portal for the entire three years and have never seen a bill.

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@auntnanny

tdrell…..…. just for the record if it might help anyone, I have medicare and blue cross\ blue shield I've been to Rochester three times and have continued contact with my pulmonologist through their portal for the entire three years and have never seen a bill.

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@auntnanny….great to hear your supplement covered the 15% at Mayo….had I opted to go there I am sure the rider to my supplement (WPS) would have also paid the surcharge.
I opted for NJH for a variety of other reasons…one of which was a direct flight …Milwaukee to Denver. Another was that my daughter and grandson live in Denver.
As a variable in planning to go for second or third or any # opinion, , unless we are of the finanancial 1%, I think we should check out the cost in advance so we are aware of it..tdrell

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@sueinoregon Hello Sue! Welcome to our Connect group. I have to apologize for this late welcome. I was prepping for and then running from that big hurricane. As you can see, there is no shortage of caring souls here. I see that many members have responded to you. Have you had a chance to read over some of the older posts? There is also a Discussion Board with topics you can check out also. It is located on the Home page of the Mac and Bronchiectasis group. When you get to it; you will have to scroll down a lot to see all of the topics. Sue, I am very glad that you found us. This disease can be scary, but the more you know about it, the better armed you will be to fight it. It requires taking good care of yourself (using all of our tips) and most importantly, finding a good doctor who knows how to treat this. You can go to http://www.ntminfo.org and find a specialist in your area. The drs on there are registered by state. I go to Mayo Clinic in Florida. They are the best in my book. The nearest Mayo to you is in Rochester, Mn. Please feel free to ask me questions. Do you have confidence in the doctor you currently have?

Liked by tdrell

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@auntnanny

tdrell…..…. just for the record if it might help anyone, I have medicare and blue cross\ blue shield I've been to Rochester three times and have continued contact with my pulmonologist through their portal for the entire three years and have never seen a bill.

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@auntnanny Jan, I suspect your secondary insurance has been picking up that last 15%.

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@sueinoregon

Thank you Irene5. I will continue to read the posts. I deal with it OK sometimes, but …..it's like when you're sick you're not feeling well. I will look for more info about other treatments than the antibiotics. It is hard to reason that anything else could fully take the place of the antibiotics. On the other hand, if they help me fight this, I reason, perhaps I will feel better in the long run. Now I need to find out where the closest Mayo clinic is and if they accept Medicare assignment. I also made sure I got the best Medigap plan.
Another challenge is getting no empathy (not sympathy) from my husband. He doesn't say much about it except mention "I bet those antibiotics are going to be expensive" & complain I'm not "affectionate" just lately. Hope I didn't say too much. BUT, how it affects him seems to be his only concern. Anyone else made to feel this way???. I only bring it up because this seems to be what is upsetting me the most.
My sister died 3 years ago and her name was Irene. How ironic. I still miss her a great deal.
Thanks, SueinOregon

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@sueinoregon Hi. I totally understand where you are coming from with a spouse who doesn't understand this illness. Problem is, we don't look sick (many of us). My husband just tuned out my incessant coughing. He'd always question me as to why I don't have energy to do things. I felt like smacking him upside his head with a 2×4 and scream; Because I have mac!!!! It wasn't until my doctor said in front of him that I may need a lung transplant that he started to take this seriously. I am sorry that your hubby is being self centered about your condition. My hubby still forgets at times that my illness is still here and still something to reckon with. My husband has low spectrum asburgers syndrome, so you can imagine the empathy I get. That's right, zero. On the other hand, it has made me stronger. Sometimes having sympathy/empathy can make you feel like more of a victim to illness. To deal with my husband; I just keep educating him about this disease. I even read excerps from some of these posts. Mainly the ones about having a lack of energy. That is my way of proving to him that my fatigue is very real and is a result of having mac and bronchiectasis. I have a 2×4 if you need it! (LOL)

Liked by Jennifer

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Hi Sue, My son is 44 and also diagnosed with MAC which is being treated by the amazing doctors at Mayo Jax. He has Alpha1 which effects his liver and lungs. In June of 2017 his diseased progressed to end stage liver disease, they could not transplant at that time due to the MAC. They did the same studies you mentioned to see if it reacted to the 3 antibiotics. It did so they started the therapy at the end of July 2017. By December the cultures where negative so we were able to get him on the transplant list in February. He will remain on the three antibiotics at least one year after the first negative culture. In the beginning his white count fell low so they have been giving him Neupogen injections to boost the counts. The low counts are a combination of the antibiotics and liver failure so they lowered the dosage of the antibiotics a little. His eyes are also checked every 6 months to watch for any changes the antibiotics may create but so far no issues there. So about 14 months after starting on the MAC treatment it is under control, no eye issues, continuing the antibiotics and waiting for a liver that is a match.

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@windwalker

@sueinoregon Hi. I totally understand where you are coming from with a spouse who doesn't understand this illness. Problem is, we don't look sick (many of us). My husband just tuned out my incessant coughing. He'd always question me as to why I don't have energy to do things. I felt like smacking him upside his head with a 2×4 and scream; Because I have mac!!!! It wasn't until my doctor said in front of him that I may need a lung transplant that he started to take this seriously. I am sorry that your hubby is being self centered about your condition. My hubby still forgets at times that my illness is still here and still something to reckon with. My husband has low spectrum asburgers syndrome, so you can imagine the empathy I get. That's right, zero. On the other hand, it has made me stronger. Sometimes having sympathy/empathy can make you feel like more of a victim to illness. To deal with my husband; I just keep educating him about this disease. I even read excerps from some of these posts. Mainly the ones about having a lack of energy. That is my way of proving to him that my fatigue is very real and is a result of having mac and bronchiectasis. I have a 2×4 if you need it! (LOL)

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@ Terri. I have family in town this weekend and I had to tell them I am too ill to visit. I know they are taking it personally. It's just one of those unpredictable times when I'm coughing a lot, have no energy and not getting enough sleep. They say they don't mind the coughing just want to see me. Which means I have to get a shower, dress, and try to make conversation between coughs. Who wants to sit in a room and cough at people. Other than being very thin, I don't look sick. I am running out of ways to explain this illness. Flib

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@flib….and there is a chance they are brewing a communicable illness you might catch! Tdrell

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@tdrell Yes, and then there's that! Thank you. It's good to not feel alone even if sometimes you have to be alone. Flib

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@flib

@ Terri. I have family in town this weekend and I had to tell them I am too ill to visit. I know they are taking it personally. It's just one of those unpredictable times when I'm coughing a lot, have no energy and not getting enough sleep. They say they don't mind the coughing just want to see me. Which means I have to get a shower, dress, and try to make conversation between coughs. Who wants to sit in a room and cough at people. Other than being very thin, I don't look sick. I am running out of ways to explain this illness. Flib

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@aflib…Tell them that every exacerbation damages your bronchii and talking and entertaining causes constant coughing to do more damage. One of my doctors forbids me to talk for 3 days when the cough gets bad. If all else fail, tell them they could catch something from you. It is not lying-you could have something communicable at any time with MAC..

Liked by tdrell

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@flib

@tdrell Yes, and then there's that! Thank you. It's good to not feel alone even if sometimes you have to be alone. Flib

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@flib Do they know you have MAC? Tactfully tell them to educate themselves. What tdrell said is so true. Relatives need to understand it is not you giving them something, but your having to protect yourself from their giving you something. My family is very considerate about that. Hopefully, yours will figure it out.

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@egayle187

@aflib…Tell them that every exacerbation damages your bronchii and talking and entertaining causes constant coughing to do more damage. One of my doctors forbids me to talk for 3 days when the cough gets bad. If all else fail, tell them they could catch something from you. It is not lying-you could have something communicable at any time with MAC..

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@terri It's so true what you say about talking. This is very helpful. I realize that I carry guilt because I don't live up to others' expectations. People want to feel helpful and they, sometimes, can resent being told their most helpful action is to be absent for a while.

Liked by tdrell

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@windwalker

@sueinoregon Hello Sue! Welcome to our Connect group. I have to apologize for this late welcome. I was prepping for and then running from that big hurricane. As you can see, there is no shortage of caring souls here. I see that many members have responded to you. Have you had a chance to read over some of the older posts? There is also a Discussion Board with topics you can check out also. It is located on the Home page of the Mac and Bronchiectasis group. When you get to it; you will have to scroll down a lot to see all of the topics. Sue, I am very glad that you found us. This disease can be scary, but the more you know about it, the better armed you will be to fight it. It requires taking good care of yourself (using all of our tips) and most importantly, finding a good doctor who knows how to treat this. You can go to http://www.ntminfo.org and find a specialist in your area. The drs on there are registered by state. I go to Mayo Clinic in Florida. They are the best in my book. The nearest Mayo to you is in Rochester, Mn. Please feel free to ask me questions. Do you have confidence in the doctor you currently have?

Jump to this post

Thank you so much for recommending the ntminfo.org website. I did find a nearby doctor that is recommended on this site. I was recently diagnosed. I have had a chronic cough for years. I feel great except for the cough. I have not had time to read all the threads on this site… I am anxious to hear others that just have a cough. I have not had my sputum tests or immune tests performed as yet.

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@flib

@ Terri. I have family in town this weekend and I had to tell them I am too ill to visit. I know they are taking it personally. It's just one of those unpredictable times when I'm coughing a lot, have no energy and not getting enough sleep. They say they don't mind the coughing just want to see me. Which means I have to get a shower, dress, and try to make conversation between coughs. Who wants to sit in a room and cough at people. Other than being very thin, I don't look sick. I am running out of ways to explain this illness. Flib

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@flib I can totally relate to what you are saying. As if it isn't bad enough to have mac and cough a lot; the fatigue steals your life. I cannot tell you how many times I have turned down invites because I just didn't have the energy to pull myself together. As for talking…. After I went on disability, I was contacted and asked of I wanted to work from home as a call center person. I had to decline on the basis that after talking for a bit; it would result in me going into a coughing jag. I don't get around to seeing all of my family when I visit my home state because all of the running around wears me out. I have explained my disease, but because I don't look ill; I know they think I don't care enough about them to make the effort. We just have to take care of ourselves. Our fatigue is so fickle at times, you may wake up feeling decent and want a short visit after all. I think you had mentioned getting some ginsing, you may opt to take some to get you through the visit.

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