Connect
(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!
++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
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!
Like
Helpful
HugInterested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
Connect
Hi @jentaylor I'm sure no one here thinks you're asking for pity! We're all on this same road, just at different points. I always say, "A burden shared, is a burden lightened." (I'm not sure if I made that quote up or I read it somewhere and it stuck with me! Lol) But in any case, I believe the more people we share our burdens with the more people we have offering prayers for us. I hope and pray you find answers soon and can receive the treatment that helps you.
-
Like -
Helpful -
Hug
3 ReactionsPlease All .. jump in and help .. support Jen in all the loving caring ways I know our Community is capable of .. I know you can do it!! Hugs to All! Katherine
Jen, I CANNOT tell you just HOW glad I am to hear from you .. I have been SOOOO worried about you .. my final plea to your husband was my cry in the dark .. truthfully I was afraid you had passed away and we would never even know about it. I do not have words to say to tell you how badly I feel about all you have been through .. all I can tell you is you know I care from all that has been in the past .. I will just keep sending you positive energy and hugs. I will try to write more later but know I am thinking of you. Many Hugs! Katherine
-
Like -
Helpful -
Hug
1 ReactionHi @ginak, I love that saying of "sharing burdens"...it does certainly "lighten" the heaviness of our burdens when we share it with others. I also believe in the power of prayer, how ever that may look like for people of all religions or without religion. The private school that my daughter attends (on a scholarship) is Quaker & they say, "I hold you in the light". Like I said I agree with you, the more prayers, the better! Thank you for reframing this idea of me feeling like I'm coming across as having self-pity which holds me back from sharing with others. You have made me feel much better about sharing...thank you!
-
Like -
Helpful -
Hug
4 ReactionsHi @colleenyoung, thank you for taking the time to read all of my feelings & validating that "it's ok"! I felt such heaviness while writing it & I just didn't have it in me to organize my thoughts & like you said, I felt good to just "dump". I often (well pretty much always) hold back from expressing my feelings, especially fear. I do this especially with my family because they tell me that they can't handle the fear themselves. I have a couple of friends I can go to (via phone, or texts since they live far away). So, pretty much I only speak of my feelings when I'm in my therapy sessions. Therapy is such an awesome, safe place to feel my feelings & know that it's ok...she is a great therapist that I've been going to for a long time so she knows me so well! I see her 2 days a week. It finally dawned on me to try & reach out to you all on Connect. When I'm depressed & scared, I withdrawal. I'm trying to get past that, fight that, by reaching out to you all. So thank you for your responses. It means SO much, really!!! It's also really helpful to hear your responses/educated opinion on waiting to treat until it's seen on a CT Scan. Thank you, @colleenyoung
-
Like -
Helpful -
Hug
3 ReactionsOh, sweetest Katherine, you are so dear!!! You hold a special place in my heart! While at Mayo, I went into respiratory failure & ended up in the hospital. I was on my on in the hospital, scared & alone. I was then discharged & continued with the Mayo expierence. It was such a trying visit & I was simply overwhelmed! I learned SO much about what's going on with me & wow, it's craziness! How could do much be wrong!?!?! And how do I manage all of this?!? I need so many interventions! I'm apparently at a great risk to have a coronary event in the near future. I'm apprently the "perfect storm" as they phrased it. I didn't know that I had the dystolic dysfunction, stage 1 heart failure. I learmed I have bronchomalacia in addition to the bronchiectasis along with retaining carbon dioxide & alveoli hypoventilation. Of course I have the hypogammaglobulinanemia which means I'm deficient in IgG for which IVIG (IV infusion of antibodies) every two weeks.
It's too much for me to handle! Then since coming home, for whatever unkown reason, my previously controlled blood sugar, now is uncontrolled even with high doses of insulin! I'm talking about my fasting blood sugar this morning 279 today!!!! And while at Mayo, we discovered that my pulse ox has been as low as 71% which meant is still means that I need to be wearing oxygen! I HATE wearing oxygen! Everybody looks at you, wondering what's wrong with me, especially since I'm s relatively young age (42). It's just a huge sign to me, that I'm "sick"! I don't want to be "sick"!!!!!
I just haven't had it in me to share my feelings or what all is wrong with anyone...I'm just now feeling the strength to share with others including my own family & friends. Ben & I started marriage counseling so that I could talk about my fear in a safe place with my husband with the help of a therapist.
I truly apologize @katemn, for being so distant & leaving you to wonder & worry. It's not right of me to do this to my friends. I'm trying to compose a summary of all that I learned at Mayo to post on my gofundme update page. So many people helped me to get to Mayo & I feel terrible that I haven't let them know the result of the trip. I'm working on it now. So much came from the trip & it's SO much to explain it all... I know it's not necessary but there are many that genuinely care & they want to know because they care.
Thank you, Katherine for being so genuine & caring! And thank you for asking others for help to support me! You are great!!!! Much love, Jen
-
Like -
Helpful -
Hug
2 ReactionsMy heart goes out to you. What you are doing seems to be keeping you alive, so that's one positive note. Keep doctoring and seek patience. shalom!
DAvid
-
Like -
Helpful -
Hug
3 Reactions@jentaylor Hello Jen,
I can hear the discouragement in your posting, and I’m sorry for your situation. It’s one thing to ‘maybe’ have a diagnosis, or when several doctors disagree … but it’s quite another when you feel really crummy for such a long time! You have my sympathies.
Reinforced at the NTM conference last week was this -- that doctors don’t agree on things, especially on NTM (of which MAC is only one) – they don’t agree on whether to treat, or how to treat, or even how to diagnosis it. Heck, there isn’t even a CDC or NIH standard ‘approved’ drug for treatment! We are still using the ‘old’ TB drugs to treat NTM/MAC. I tell myself to remember this the ‘practice’ of medicine, after all. That’s one thing that makes this disease so confusing and frustrating to patients. There’s not one set of universal standards. Or even two sets!
I can only offer you my sympathies and offer what I would do if I were you in regard to NTM/MAC. Since you’ve seen your local pulmonologist as well as Dr. Askamit, I would follow his lead. Dr. Askamit doesn’t feel its right to start on the drugs, probably because your CAT scan doesn’t show evidence of NTM/MAC. Unless you are really ill from NTM/MAC and have manifestations of it, then I’d follow his advice and keep going for follow-up care to see what’s happening to your lungs. The drugs are very powerful, for some people the treatment is worse than the disease. And it’s unknown what the drugs will do to our bodies long-term or will we become resistant to them. NTM/MAC does go away in some people without treatment. That’s the head-scratcher. Why? Lots of things to think about.
Another thought … opening up your lungs and strengthening them is something each patient should try to do. That’s something I wasn’t real keen to hear 10 years ago when finally diagnosed. I’m a software developer, working at a computer 10-12 hrs a day, and I wasn’t much of an exerciser but painfully began walking every day. Little steps at first. It was difficult since I couldn’t walk a block due to lack of lung function. Your weight may be an impediment, at least at first -- but ask your doctor if you could try to walk one block each day and build up your lungs. Then over time try to increase the distance and time. If you keep with it, it will make you feel better. Women on this blog with NTM/MAC will attest to that!
Best wishes to you. Let us know how you are doing over the next weeks, as you go forward.
Paula
-
Like -
Helpful -
Hug
3 Reactions@josephene, you write you've "been on 3 big meds for 12mths with no radiology improvement..anyone else experienced this?" Yes, me. This is not unusual, rather quite common I think. Were you ill 12 months ago before going on the drugs? And how do you feel now compared to 12 months ago? That's what doctors will also consider.
-
Like -
Helpful -
Hug
2 Reactions@lindam272, @windwalker & others --
RE the benefits of exercise ... 10 years ago when my pulmonolgist told me to start walking and doing Pilates or Yoga each week, I thought he was crazy. I could barely do this '6 minute walk' with a nurse each week I saw him. I was so into 'mental exercise' -- I developed computer software all day -- and now physical exercise? And getting into the 'tight' pants and tops to exercise made me laugh! Hah, not me! Boy did I learn from that! I started slowly at my Employer's employee wellness class with 2 older people (our other co-workers in the class were in their 20s or 30s). We laughed and laughed since it was obvious we struggled, but didn't care. Today I try to take a Pilates and/or Yoga class 5-6 days a week (sometimes both in the same day), and walk each day. It has made a HUGE difference to my lungs (only one lung is working well now) and to my overall well being.
Yippee to @windwalker for doing cardio each week!! What an accomplishment! And it's fabulous that @lindam272 has joined the Y with it's Silver Sneakers. This is the part of managing and getting well having NTM/MAC that doctors' cannot charge an office visit for, or that drugs companies don't get paid for. This is the part we can do for ourselves.
Blessings to all. The benefits of exercise . . . keep moving, as much as each of us is able to do!
Paula
-
Like -
Helpful -
Hug
1 ReactionMany of the people posting on here seem to know more that some of the doctors I have encountered. Can anyone share what evidence of MAC/MAI on a cat scan includes? Is it nodules, ground glasz opacities, tree in bud (all things on my report but not sure if that is consistant). I was diagnosed witj MAI through lavage washings but i don't know if it is the reason I am having issues or whether whatever issues i have been having made me vulnerable to the MAI ...
-
Like -
Helpful -
Hug
1 Reaction