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
Thanks, David!
-
Like -
Helpful -
Hug
2 ReactionsJen, you know you have a special place in my heart .. that I have followed your journey from the beginning .. was SO concerned when I didn't hear from you after your last posts. You KNOW you are now in the right place .. that you have returned home to Connect at last .. that our caring Community will be there for you on the rest of your journey just as it was in the past. You just have to stick with us now that you have returned!
I found Ben by following your Facebook page .. Jen .. he sounds like one heck of a guy .. you give him a hug for me and tell him I think he is just great! From Momma .. couples counseling is an EXCELLENT idea .. but he is a really good Dad .. AND he has stuck with you though "sickness and in health" .. give the guy a break?! One piece of advice I would give you .. my husband and I say "Our kids love us .. our grandkids love us .. but at 3 in the morning .. it is just you and ME Babe!". ALL marriages have their ups and downs .. you just have to tough it out in the downs .. ESPECIALLY ages 45 to 55 .. but in the end .. NOBODY will share all the memories with you like Ben will .. just how cute your daughter was when she was waddling around in diapers at age 2 .. just think of all the memories you have shared .. don't lose all those years. Give each other a break .. count to ten .. go back and remember WHY you fell in love with each other .. reach back to the happy times. You CAN find them again. I'm rooting for you!
Jen, I have read through the various posts from our Members .. I really can't add any additional words of wisdom .. merely second their good advice. ESPECIALLY the advice that TOMORROW you make the DEFINITE decision to grab that oxygen tank and walk just ONE block! Then add ¼ block as you are able! Jen, this is coming from MOMMA! Who gives a flying leap if ANYONE looks at you funny with you walking with your oxygen tank!! Jen, WHO DO YOU ALLOW TO GIVE YOU OPINIONS OF YOURSELF????? YOU are the ONLY one who KNOWS WHO YOU ARE!! Phooey on anyone/everyone who give you a funny look .. who gives a darn! ALL you should be concentrating on is getting healthier .. increasing your lung function!! THAT IS ALL! By darn if @windwalker, Terri with her lungs waiting for a double heart transplant .. goes to the gym with HER oxygen tank .. who are you and me to worry about "looks"?! NOPE!!
Also Jen, have you purchased and are USING? If not .. GET IT!!: from my File Cabinet
Expand-A-Lung Breathing Fitness Exerciser http://www.expand-a-lung.com https://www.youtube.com/watch?v=p7FAFY4PsQY PURCHASE: https://smile.amazon.com/Expand-A-Lung-Breathing-Fitness-Exerciser/dp/B00JWTRA5I/ref=sr_1_1_a_it?s=digital-text&ie=UTF8&qid=1496000894&sr=8-1&keywords=Expand-A-Lung+Breathing+Fitness+Exerciser Read the reviews and how to use at https://www.amazon.com/Expand-A-Lung-Breathing-Fitness-Exerciser/dp/B00JWTRA5I
https://bronchiectasisnewstoday.com/2017/01/10/aerobika-device-shows-promise-treating-bronchiectasis-copd-exacerbations/?utm_source=BRO+E-mail+List&utm_campaign=198910888f-RSS_WEEKLY_EMAIL_CAMPAIGN&utm_medium=email&utm_term=0_d9df0e1c03-198910888f-71558577
Jen, sending you a Big Hug and glad to see you back! Katherine
-
Like -
Helpful -
Hug
1 ReactionOh @jentaylor what alot for you to get your head around,I really feel for you. You have already proved the doctors wrong by 8 years and if you can get your head in the right place you can carry on doing so. Dont know if you have tried meditation, but it is really amazing and can help you with this. I have heard that Dr Askamat is a great doctor, but maby you he needs to send you for a up to date ct scan now for him to review rather thasn going by past scans. I wish there were doctors who specialised in everything that could sort it all out for you at once. Please take care and keep in touch, sending you hugs and well wishes.
-
Like -
Helpful -
Hug
2 Reactions@jennifernicole, you asked "Can anyone share what evidence of MAC/MAI on a cat scan includes?". Evidence of MAC/MAI? A scan is not direct evidence, I believe, since you need tissue/mucous from your lungs to be 'evidence'.
Here's my story, when I was diagnosed 9-10 years ago. I had a chest x-ray that was not good, my fabulous young internist immediately sent me for a CAT scan. It too was not good & alarmed her - I had 4 nodules on one lung and a scattering of something in the other; if I recall correctly, several were the size of the first joint on my thumb. Within 3-4 days I was in to see a pulmonologist. We spent an hour talking about me, my lifestyle & uneventful health history, and looking at my CAT scans. He said "I see women like you every day that have scans that look like this, and they have lung cancer." I was an administrator at a local university, and I think the doctors took that to mean give me all the information I could ever want – also, I asked tons of questions. Based on my lifestyle and unusual symptoms, after an hour of discussion he said it could be 4-5 different things that are showing up in the scans. A few days later, I had a lung biopsy of tissue and mucous from areas of my lung -- the only way to determine it was not cancer. The pulmonologist called me that evening to say one specimen was growing bacteria like crazy (a very good sign, we felt); but any malignancy diagnosis would be a few days to come. Since then, over the past 9-10 years, I've had one more bronchoscopy and 2 lung lavages (washes). So I believe CAT scans are a diagnostic tool and can show symptoms of something -- and after an affirmative diagnosis, CAT scans can measure increase/decrease in size of the nodules or lesions, etc.
Just my 2 cents worth.
Paula
-
Like -
Helpful -
Hug
5 ReactionsDear dear Jen Taylor.....I am sending the white light right now to you so that you get a smattering of hope and a pinch of energy!!!
Feeling discouraged /down is a totally appropriate feeling for what you have been going thru these years.....and added to the mixture is the unknown of the future. It is sooooo good you feel comfortable with us and can express how you are feeling!!! I speak for myself...and probably many others in the group...when I say we not only sympathize but totally empathize with You!!! Our dear Katherine would I am sure direct you to do something soothing .....music...a movie etc and a big pat on your back for amazing problem solving and seeking for the best route for optimum care!
Tdrell
-
Like -
Helpful -
Hug
2 ReactionsJen Taylor and Paula....to add to the comments re Drs not agreeing re treating MAC ....I have had sort of same experience with Drs disagreeing....I had to find a new Pulmonologist locally....he refused to agree wth NJH 's decision not to treat me with antibiotics . The new one agrees with NJH. I am still amazed that the ID Dr that I was sent to by former pulmonologist would have begun me on the 3 antibiotics within one minute of meeting me....she had begun to write out prescriptions til I said " wait...I am going to NJH "
I must also add that when I compare the details of 3 different chest CAT scan reports ....10 years ago....1.5 years ago and then this past January . The one done at NJH contained 10x more info/interpretations as well as guidelines for future scanning!! The person reading the scan at NJH had by his name"Certified in thoracic reading" ...maybe this is the difference? Regular radiologists vs further specializing in body areas.tdrell
-
Like -
Helpful -
Hug
2 ReactionsTdrell, Thanks for that info! Is it too much trouble to locate the guidelines given for future scanning so we can share those with our doctors? I was planning on asking my doc to order a CT scan for me to compare with earlier ones when I go back in the next 4 - 6 weeks and would like to have that information before calling if you still have it. Thanks so much! Linda
-
Like -
Helpful -
Hug
1 ReactionLindam272.... I am out of town til mid week....when I get home I will try to locate the comments. On the NJH CT scan.
I have had varying sized nodules from 10 years ago which at that time according to the Fleischner ...sp ...guide did not require follow up. The guide was printed right on the report and can be googled ( This subject was brought up awhile ago on this site)
So please await more from me.tdrell
-
Like -
Helpful -
Hug
2 Reactions@tdrell, it's rather unsettling that your ID doc wanted to begin you on the 3 antibiotics upon meeting you, and that you had experience with two other pulmonologists who didn't agree on treatment. If one is asymptomatic, it makes it all the more difficult.
To further add to your comments about "Drs not agreeing re treating MAC", that's one reason I'd love to see a NATIONAL REGISTRY ... where every state in the USA needed to report on each patient who contracted NTM, which species/type, symptoms, and treatment. The NTM conference had a speaker who collects and analyzes NTM data, which is so limited and based on Medicare claims. Yikes! Just imagine how much useful information each state registry could provide.
Re. NJH providing better details and interpretations of your CAT scans, I think that's for several reasons: NTM is a disease they specialize in, but also that they knew what you were coming there for and what to look for. Perhaps 5 or 10 years ago, their details would not have been so 'sharp'. Today, more scans are being given everywhere for other things and so the medical community is discovering more NTM. Yep, it is very important to have scans or x-rays read by a radiologist who is extremely familiar with that particular part of the body. Hope you are doing well these days.
Paula
-
Like -
Helpful -
Hug
4 ReactionsHello Jen, I know how you feel. Just hanging in there it will get better. whenever you feel frustrated and needs somebody to talk to, you can phone me. I will put my ph. number on your private message. We are all going through this situations scared and don't know what to do. You are not wrong about getting the treatment instead of waiting to get worse but if nothing shows on your CT scan maybe you have MAC but not active or colonizing. Think positive and have faith, I know that is hard to do but try. To make you feel better I will tell you about myself. I have been on 3 meds for 12 months now and I saw Dr. 2 week ago and did a CT scan and show a new nodules on my lower right lung. I was upset and told my Dr. that means the meds are not working. I was fine 3 months ago before this. I don't know what to do. Anyway, I will pray for you and try to think about something else besides our disease. God shower you with his Blessing. Always Cila.
-
Like -
Helpful -
Hug
2 Reactions