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.

Interested in more discussions like this? Go to the MAC & Bronchiectasis group.

@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 I am so sorry about your sister. Irene is an old name that means Peace (maker). I’d smack that husband of yours upside the head! Not that that’s a very peaceful thing to do, but it might make him take notice! My husband has sarcoid and is quite sick himself so we lean on each other. It wasn’t always like that so I understand how you feel about his insensitivity to your illness. I will pray he figures it out soon. That’s the thing with MAC – we literally can’t perform activities of daily living which may be frustrating for a spouse, but is way more frustrating for us!! I haven’t paid for the meds with Medicare and secondary insurance (retired teachers). Hopefully they won’t cost much for you. Big hug and know I keep you close in thought and prayer. (irene5)

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@sueinoregon Hi, Sue. Yes, the Mayo hospitals are a long way from Oregon. Even it you choose to go to Mayo, you still have to make hard choices about which one to work with. I chose Arizona, which was a big mistake. They seemed angry because I had bought an expensive book on Amyloidosis edited by Morie Gertz at Minnesota. They never bothered to seriously look at even the lab results they took, or perhaps they did not know what they meant. Minnesota is the Mayo Amy Queen shop, I guess, but it is nearly impossible to get in. As far as locals, I have to go to the Clinics in the area, and I would not recommend them for Gelsolin. I am down to looking at a few directions. One more try and Mayo-MN. Stanford (they have a good looking clinical trial) MD Anderson (Houston or Arizona) or just wait to die. The ARCI.org clinical research app for Android says that I have less than two years to live. No doctor wants to look at my Gelsolin because it is such a slow grower. It seems to be right on the line between hereditary-Chronic and hereditary-progressive. Anyway, my contact at Stanford has been extremely helpful, especially if I can get into the CT. In my family, in three generations, so far, 11 of us apparently have Gelsolin or something similar. Thank God for the favor of letting us get as old as Methuselah's grandfather before the big pains hit. The diagnosis rate is low because it does not show up until the 70-80s or so, when most of us are gone anyway.

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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, I am so sorry about your sister, I lost my sister 3 years ago also and I know how that hurt. Sometimes family don’t understand this disease and they often think we’re just always sick. I have 5 kids and at first they won’t even try to understand what I was going through. I would feel so hurt because I wanted them to know it was so difficult for me. But they would often get upset and say mom why are you always sick and that hurt so bad. But it took about 3 years for them to understand it’s not me it’s the disease, and they know now I am going through a lot and they now support me all the way. They wanted me to just go out and enjoy life and I was always tired. But it took a long time but they do now. As for my husband he is one of the most wonderful man and he’s with me in everything I go through. Every doctor’s appointment and really supports me. It will get easier as you go. I wish you were close to Florida Jacksonville Mayo Clinic, it’s the best experience I had with doctors since I got Mac and all the other bacterial infections I’m fighting. The doctors are really great. But I’m sure there’s a Mayo that’s closer to you. I wish you all the best and hope that you will find the best doctor to work with you. Rita

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@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?

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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)

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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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