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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
I am new to Mayo online .. I was hoping to find others with .. MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and/or BRONCHIECTASIS. I found only 1 thread on mycobacterium accidently under the catagory "Lungs". I'm hoping by starting a subject matter directly related to MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) I may find others out there!
I was diagnosed by a sputum culture August 2007 (but the culture result was accidentally misfiled until 2008!) with MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) and BRONCHIECTASIS. I am now on 5 antibiotics. Working with Dr. Timothy Aksamit at Rochester Mayo Clinic .. he is a saint to have put up with me this long! I was terrified of the treatment . started the first antibiotic September 3, 2011 ... am now on all 5 antibiotics for 18 mos to 2 years. Am delighted at the very bearable side effects!
I wrote on the 1 thread I found: If you google NON-TUBERCULOUS MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) you will learn a LOT about the disease. But PLEASE do NOT get scared about all the things you read .. that is what I did and nearly refused to do the treatment until after a 2nd Micomacterium was discovered! Educate yourself for "due diligence" .. but take it all with a grain of salt .. you are NOT necessarily going to have all the terrible side effects of the antibiotics! Good luck to you!
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January 2017 Update
One of our great Connect Members .. @Paula_MAC2007 .. had a wonderfully helpful idea that I wanted to share! Her idea .. as you read through the pages to gather information on our shared disease of MAC you can develop a personal "file cabinet" for future reference without the necessity of reading all the pages again!
If you have the "MS Word" program on your computer:
- Document Title Example: Mayo Clinic Connect MAI/MAC Information
- Then develop different categories that make sense to you such as: Heath Aids .. Videos .. Healthy Living .. Positive Thinking .. Baseline Testing and Regular Testing .. Antibiotics ..
Tips for
- As you read the pages .. copy/paste/save things of interest into that MS Word document under your preferred categories for future reference.
Then as you want to refer back to something in the future .. YEAH! You have now created your own personal "file cabinet" on MAC/MAI! Go to it!
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HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
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@tdrell Hi Terri! I am inviting you to share some non-disease related tidbits if you'd like to share. I would like to know what keeps you jazzed. Do you still the adorable pup that you are holding in your picture? Can visit at: https://connect.mayoclinic.org/discussion/we-are-so-much-more-than-our-disease/ -Terri M.
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1 Reaction@suzie2017 Hi Suzie. Is your husband doing the nebulized saline (sodium chloride)? It would help a great deal. If he is not on that, have him ask his doctor about it. It will help thin the secretions and bring them up.
@suzie2017 It sounds like you are right on track with what you prepare for your husband. I love chili and have been meaning to make some. You just inspired me to do so. I guess not all rehabs provide the nutritionist. The one where I live does. I used to come across good recipes for putting on weight when I'd search the Living with COPD websites. I have a feeling that once his infection is under control; he will be able to put the weight back on. That is how it happened for me anyway. So....your son is there visiting you this weekend? How nice! I am sure that is a real spirit booster for you both. I am feeling great this weekend, thank you. I attended a small wedding on Friday, went to the beach, and planted some veggies in the garden. Did you all get out with your son? TTYL, Terri
@toni68 Hi Toni Ann. I am so sorry that I did not get back to you sooner. (Issues with scrambled messages) Anyway, you don't have to contribute helpful input. You are welcome to just share your experiences and get support here. That is terrible that you sustained brain injuries through no fault of your own; but tragically from a drunk driver. Do you want to share anything? -Terri
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1 Reaction@flib Good morning. I was just reading over older posts so that I can follow-up on some folks. Gee, that is certainly good to know about the energy drinks and vitamin B. You may want to look into using gingsing as an energy booster. Ask your doctor if that would be ok before you do. I use it when I know I have a long day or function to attend. It gives stamina without jitters etc. If you decide to use it, take it in the morning or only drink 1/2 vial; or else you may be awake all night.
@suzie2017 Good morning Suzie. I was just reading over past posts and noticed that you wrote that when you checkef your husband's oxygen; it was at 80! I don't know if you or he was told; but one should be on oxygen when it dips to 88%. It sounds like he needs to be frequently monitored. If he is allowed to drop below 88 for various durations; it can cause organ damage. I can just imagine the relief he must have felt getting some air. -Hugs Terri
You are absolutely right and yes, we are aware of the seriousness of low oxygen. The 80 reading was right after he got up in the morning and walked out to the kitchen. He was confused and a little wobbly. I got him on oxygen right away. It is surprising but he does not need oxygen at night. He seems to rest very comfortably and breaths shallow but very easy. Once he gets up, he normally needs it pretty quickly. We keep the portable oxygen in the bedroom just in case he might need it during the night and the larger unit in the living area. He is still getting pain in his pelvic area and his lower back. Kidney problems crossed my mind but the blood work looked fine regarding kidneys. His pelvic area was x-rayed a few months ago and nothing was found. His pain comes and goes but only at night. Once he lays down in bed, it goes away - very strange. He will be having another cat scan in the next 10 days of his lungs. Hope you are having a nice weekend. Thank you again for your good suggestions.
Yes, it helps a bit. I do it twice a day. Going to bed is easier as I'm not getting up as often to cough. I also started 4life factor and ginseng and royal honey. The latter just yesterday so I'll let you know how that works for me. My biggest problem is weakness.
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1 Reaction@flib I hope the ginsing helps. I had the weakness going on too for awhile. I still cannot open jars etc., and I used to be the go-to person for that! From what I have read, some antibiotics can cause weakness. I read that Cipro is one of them and that is what I take. I had been working with small hand weights and it helps. Today, I am starting back with yoga at 1:30. I found out how important it is to keep your limbs strong. In the past few weeks; I had a pinched nerve in my back, and the only way to move around was counting on my arms and legs. If you don't own small hand weights, you can use cans of soup or something and exercise in your chair.
@suzie2017 Hey Suzie, has your husband had an over-night pulse-ox test done? That is where he would sleep with a pulse ox strapped to his finger and it records all night? That test is to check to see if he is dropping in the middle of the night. I have had it done twice and I have to sleep with oxygen. Mine drops to like 84 for five mins at a time in the night. If he has not had the over-night test, it might be a good idea. (especially with the collapsed lung.) Will you please tell your hubby that I said hello and that I am thinking of him and hope he feels better soon. Thank you. Terri