(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Melissa, great news about the UNC Pulmonary Clinic!! Just finding the right docs can make you feel better. I find it strange that the VA docs you've seen have you trying to cough up sputum 'on demand'! Very difficult to do, unless you are in the heavy throws of MAC.

Katemn, my Pulmonologist too encourages exercise to build up lung strength. But I'd like to see these docs get in the practice of telling patients about several exercises they can do -- not the aerobics type that aren't so recommended when you get 'older', but exercises that are sustaining for a lifetime -- Pilates, Yoga, etc. In past years, I'd cough and cough when I did Pilates and I've just told my instructor it's good that I'm coughing, means I'm opening up my lungs. This winter I have hardly coughed . . . wonder if it's because I am engaged in Pilates or Yoga or Barre almost each day. I recently retired from 50 hr work weeks.
Boy, Katemn, Kettle Bells can really put your body out of whack, if you aren't used to this type of exercise.

Best wishes to everyone on this blog . . . keep us posted on how you are doing. I think I'm in my 9th year of being diagnosed with MAC (after 2 yrs of misdiagnosis), and feeling fabulous!

Thank you Paula for your response!<br />
I had just purchased a Palates video and now I am even more determined to be disciplined about using it! Plus I do have the Aerobika and an Elyptical exerciser. Also I am convinced to go beyond my county knowing the importance of finding a better, more informed Doctor ( esp. after hearing what Melissa has been through). I guess I was just concerned about what to do in an emergency/ urgent situation But shy of relocating, I suppose you have to hope for the best and get to the specialist as soon as possible. I am actually thinking That it wouldn't be a bad idea to have my MAC Dr.'s name & contact info (also NJH contact info) on a medical bracelet or anklet. ??<br />
It is VERY good news to hear you are feeling better. I've been blindsided with this diagnosis and even more so with the prognosis of MAC Just trying to wrap my head around it and do any and everything to beat it. Sure appreciate your encouraging words<br />
To All: Prayers for strength and courage and blessings to all who are in this struggle <br />
<br />

Hi Paula,
You are so right .. that darn Kettle Ball really irritated a nerve in my back. But the result is that I now better understand why I had such bad back pain with all my coughing. I really thought it was damage to my SI joint.

Last week I went to an Ortho Doctor .. he took an Xray .. put me on a "Medrol" steroid 6 day pack to calm down the inflammation .. it GREATLY relieved the pain. Then today the 1st day of physical therapy .. she was really great! Gave me 2 pages of lower back exercises to do daily. Turns out it is NOT SI .. it is the usual L4-L5 lower back issues. Basically part of the aging process I think!

BUT by strengthening the muscles around the spine it will better support the spine and I fully expect the pain to improve. By wearing my SI belt my pain level was VERY bearable prior to my experience with the Kettle Ball. She also encouraged me to get back to my exercise routine of Nordic Track and yoga in addition to these lower back exercises

Paula, I agree with you .. I am sure I have been coughing more because I have not been exercising due to the back pain .. I am back to joining you with the exercise!. Let's forge forward toward healthy living!

Lainey,
Good for you in the exercise area .. keep it up!

In terms of a medical emergency. I found the best info on MAI/MAC and
put it into a WORD Document. Then included it in the below memory stick to educate any health professional who was unaware of just what MAI/MAC was.

I was given the below idea years ago by a nurse. Because we travel a lot, I
did the below for me (and my husband).

PREPARATION:
1.Gather all medical information and type into a Word Document. Separate the medical information by HEADINGS:

a. BASIS ID INFO INCLUDING INSURANCE INFO/EMERGENCY CONTACT
INFO/PRIMARY DOCTOR
b. OUR INFO including phone numbers, home address
c. BLOOD TYPE
d. MEDICATIONS CURRENTLY TAKING: name/dosage/when taken/what taken for
e. OVER THE COUNTER TAKEN: (name and dosage)
f. OK: WORKS FOR ME: (listing various drugs that work for me (name and dosage) ie Antibiotic/Anti inflammatory/Pain Medication/Pulmonary
g. ALLERGIES/SIDE AFFECTS TO DRUGS (name and dosage)
h. HEALTH ISSUES: name of issue and date diagnosed
i. SURGERIES: name of surgery and date of surgery
j. VACCINATIONS/IMMUNIZATIONS : type and date done
k. LAST DERMATOLOGY FULL BODY SKIN EXAM:
l. LAST COLONOCOPY:
m. LAST EYE EXAM: 03/15
n. LAST DEXA:
o. DOCTORS: name/(fax # indicated) (various doctors I see)

2. THEN THE MOST IMPORTANT THING THE NURSE TOLD ME! You transfer the information from your Word Document to a memory stick and CARRY it in your purse!! I thought that was just brilliant!!

I have since that time updated that Word Document with each prescription change or medical change, printed it out and taken it to EVERY doctor appointment. Every hospital situation.

They are blown away! I tell them they can keep the print out and they just LOVE having all that up to date data! The truth is once you get it on your computer it is a piece of cake to just update it as you go.

I hope the above makes sense to you. If not, please feel free to question me! I know it has really helped me immensely both in traveling and in running my husband to the Emergency Room that is the first thing I grab -- my Word Document and my Memory Stick that has even our Living Wills on it!

Hi Paula,
Yes I agree. What makes it worse is that they would not accept my sputum that I cough up on my own first thing in the morning. When I went in yesterday to the Army hospital to produce their third requested sample, I brought a sputum sample with me coughed up just an hour before (in a sterile cup given to me from UNC) that they would not accept. So I endured another twenty minutes of deep breathing of the saline solution and coughing in the watchful eyes of the technician... I was terrified to see that I began coughing up bright red patches of bloody sputum....

My lungs were burning and my ribs have been hurting so bad from the forced coughing at WAMC (in addition to my regular coughing) plus the two breathing tests. I told the Army technician that I do not trust them for making me go through the forced/induced sputum tests three days in a row and not accepting my first morning sputum cultures for sampling (she just raised an eyebrow).

One more thing, in review of my UNC visit notes, the doctored changed by diagnosis from MAC to Mycobacterium avium-intracellulare infection... A different species of M. avium... I will gather more clarity on this as time passes.

May the Force be with YOU all.

Melissa

Hello Melissa,
My pulmonologist has given me a sterile container to use to collect sputum, and then to drop it off at the nearby lab for analysis the same day that I provide the sputum. I've only needed to do this once; he usually depends on other tools as to how I am doing. Also, I learned that MAC or it's other species are extremely difficult to differentiate. I retired from a university recently. Two years ago, a student in the clinical laboratory science program -- those are the technicians who analyze our specimens -- did her senior research on MAC and its closely related 'offshoots' (avium-intracellulare and other close infections). I went to her presentation before the Health Science professors, and learned it takes very specialized equipment and time to differentiate between MAC complex and other diseases. So most pulmonologists diagnose people with MAC until there can be a further differentiation. But I believe the treatment is the same (similar to TB).
Your situation, Melissa, is rather involved, due to the VA limitations and other extenuating issues. Please keep us updated.

Hello Katemn,
Glad you're learning about keeping your body strong and injury-free. Yep, as we get older we need to find what works for each of us. Strengthening the muscles around our spines so extremely important -- for all kinds of balance issues and to keep our backs strong to support our torso. Best wishes!

Paula

Am I the only person whose Pulmonologist has me using a nebulizer with saline solution twice a day? He says it's important to keep the lungs clean. I have recently discovered that, when I exercise more than 5 minutes, my blood oxygen plummets. I have a diagnosis of MAC (from a surgical lung biopsy) and bronchiectasis. <br />
Thanks!<br />
<br />

Paula, really interesting info on the difficulty of differentiating MAC .. I again feel blessed to be going to Mayo Clinic where this is not an issue. But to be fair .. my Minneapolis Pulmonologist sent my sputum culture just to I think a "regular" lab .. came back as MAI/MAC .. then sent me to an Infectious Disease Specialist .. that lead me to finding a MAI/MAC specialist which was Dr. Aksamit at Mayo Clinic. So perhaps being in a larger city helps in getting to a lab that will diagnose MAC first thing?

Hello, I am new to this site. I was diagnosed with MAI about a year ago after a bronchoscopy to figure out the nodular growths in my lungs. At that time I did not have symptoms but the nodules in my lungs tested positive. My pulmonary Dr. recommended not to start any antibiotic treatment since I was symptom free, but to continue to monitor it with bi-annual CT chest scans. Since my last appointment, I have started to have bronchial symptoms. I'm due for my next CT scan but wanted to get a second opinion. I was excited to hear about Dr. Timothy Aksamit at Mayo so I'm trying to get an appointment with him; however, they said he doesn't have any openings as far out as May (and they don't schedule out any farther). They suggested I see the Nurse Practictioner, who is overseen by Dr. Aksamit. I am more inclined to wait for him to directly be my Dr. since he is the one recommended (and I live 90 minutes away from Mayo). I don't mind driving if I can see him directly. If I can't get in with him, does anyone know of one who specializes in MAI in the Twin Cities? Philomena

Welcome Philomena,<br />
I can only speak for myself .. BUT I personally would wait to see Dr.<br />
Aksamit .. for me he "walks on water"! With your situation I would ONLY<br />
see him. I just went for my latest check up last week and discussed how<br />
"famous and popular" he is now and how difficult it is to get into him. We<br />
agreed that IF I am not having symptoms .. but merely a check up .. I would<br />
see one of his associates: Dr. Jeremy Clain or Dr. Megan. Dulohery.<br />
<br />
That said .... I may be speaking out of line .. BUT if I was you I would<br />
call again .. ask for "Wendy" .. she works directly with Dr. Aksamit ..<br />
tell you spoke with Katherine Fink another patient and I spoke so highly of<br />
Dr. Aksamit you do not want to see anyone but him. THEN ask her if she<br />
could put you on a "Cancellation List" .. OR PLEASE keep you in mind if<br />
something comes up. Then make an appointment for ASAP with Dr. Aksamit ..<br />
but MAYBE Wendy MIGHT be able to fit you in if something happens. Tell<br />
them you need a CT scan per your current doctor so that can be set up.<br />
<br />
Then get a copy of EVERY record .. test etc to take with you to Mayo so<br />
they have that baseline to determine any changes.<br />
<br />
This is just my opinion. But Dr. Aksamit is the absolute guru of our<br />
disease!* Very best of luck .. and welcome to this Forum!*<br />
*Katherine*<br />