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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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Excellent question. Also, is their a legal issue about notifying employers when you are in a service care industry - teaching, nursing etc.
Happy to see you back Katherine!
So glad you had a nice vacation!<br><br>I have two appointments scheduled now...one with an infectious disease specialist (in one week) and one with a respiratory specialist (still 6 weeks away but I am also on the cancellation list). I really want to get in before I head to my step-daughter's wedding out of the country in early October, so that I know if there are any precautions I need to take while travelling. The worst part for me is not knowing whether I have a mycobacterial infection or not, and also not knowing how bad my bronchiectasis is because sometimes I can't tell if my shortness of breath is allergy related, stress related, bronchiectasis related or all of the above! [??]<br><br>I have also had another symptom that is concerning me and I wonder if anyone else has had it...about 3 or 4 times I have suddenly felt like i stop breathing...not sure if i actually do, if my heart skips a bit, or what is going on. Has anyone had this feeling?<br><br>Thanks for checking in on us.<br><br>Fran<br><br><br>
I am at the same phase as you are. Good luck to both of us! I did have some concern last weekend when I couldn't catch my breath after trying to mow a push mower. It's not the first time. I wasn't sure I could get in the house and I live alone. Another factor was that I had caught a "bug" from my students and am now on strong antibiotics which make a huge difference. Hope this is something you can resolve. Best, Kathryn
Do you use oxygen? I went to Europe last year and needed portable O2 on the plane. I also had a pulse oximeter. I was 2 months on the medicine. I was only using O2 at night at home at that time. Not required anymore at all. I was fine until I had to get up and get settled again.
Elaine
Hi Katherine...good to have you "back" with us!! I am hanging in as the saying goes.Visiting daughter in Denver and thus able to attend the all day workshop at National Jewish for clients of NTM. Amazing for sure and it was video taped and will be posted on line in a few weeks. The microbiologist really stressed cleaning our pulmonary equipment frequently...am thinking of your new item you mentioned.
I am in process to being seen there.at NJ..they have the requested notes CDs etc the liaison who accumulates them emailed this morning they have what they need so
Matter of their team reviewing and making an appt for me to be seen. I checked at workshop with one of the Drs...she said probably mid October...meanwhile she said to keep appt with local Infectious Disease Dr.
As irony would have it..I discovered last nite via an automatic email that somehow my appt on October 4 with local ID Dr was changed to sept 21 while we r still in Denver....I sent a quasi nasty note to the doctors electronic mail box and this
Morning got an e mail response that I had been called to reschedule the oct 4 appt since Dr would be out of town on October 4th. Hence the appt on sept 21?
My options were to take a chance on the 4th that she would be back or an appt on October 11
So I called and spoke to the (overworked) receptionist "NOBODY called me" I started her Monday morning with. We went around in circles with me in frustration saying "hey look...I just spent a day at a workshop learning what a menace the organism that is in my lung is...and it was discovered in July so I am anxious to be seen.
We left it that she would ask the nurses to see if I could get in next week and they would get back to me. I am not holding my breath.
Welcome to one of many challenges to NTM...the medical systems..thanks for letting me ventilate. And welcome back again.
Welcome back and glad that you had a good holiday. I feel like I actually have some pretty good news. My ID ordered a CT scan of my chest before my last appointment with him which was about 2 weeks ago. He said that the scan showed that I have no nodules or cavities and that my lungs look good. He and my pulmonologist reviewed my chart and CT scan, and agreed not to start any treatment for MAC at this time, based on the scan and also because I really don't have any symptoms. They did, however, agree that my pulmo doc will treat my bronchiectasis and the pulmo doc feels that by treating it, that may be all the treatment I will need. I have an appt with the pulmo doc on this Thursday, so am keeping my fingers crossed that he will get me started on the treatment and that I get some relief from the chronic cough and shortness of breath, which really are my only symptoms.
In the meantime, last Friday I had a heart catheterization as I have to have an aortic valve replacement in the next few weeks. I was diagnosed with aortic stenosis sometime ago, and have the cardio doc has been watching it with echocardiograms yearly. Because of this, it is sometimes difficult to tell if the shortness of breath is caused from the bronch or the stenosis.
I feel very encouraged and also fortunate that I am not going through the many symptoms and difficult treatment that many of you are having to endure, but please know that my thoughts and prayers are with each and every one of you. Also, I will continue to pray that a better, more modern treatment and hopefully cure will be discovered very soon. Linda (mimi68)
@justjanet - you ask if NTM or MAC is contagious. I've always been told it was NOT contagious and I acted accordingly.
Per the NTM Info & Research Center: "Nontuberculous mycobacteria are not considered to be communicable person to person."
https://www.ntminfo.org/faq/other-questions/am-i-contagious
Paula
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1 ReactionSound like you had a great time, except for the coughing. I have had a Barium Swallow. I am scheduled for a Endoscopy soon. Still have that awful cough, I am surprise my husband haven't left me. It really bother me at night. Glad you had a safe trip.
Teresa, hmmm .. what a journey you have been on! I am SO glad you are getting a second opinion. For me .. if for no other reason it gives a peace of mind .. plus it just may add to your storehouse of knowledge .. every little tidbit helps in the decision making process. I have found that picking the "right" doctor is just essential in the journey .. not just in the actual procedure but also in the recovery process. If you have a caring doctor that you have confidence in .. makes the whole thing SO much easier!
In the medical journey I have been on with both myself and my husband .. I have seen both sides. A genius doctor that my husband saw that invented a certain procedure that I felt was an absolute JERK .. and I could hardly stand to be in the same room with him .. to a WONDERFUL oncologist for my husband that we think the world of! Plus of course my own Pulmonologist that is the warmest .. loveliest doctor I could ever have asked for on my MAC/MAI journey. That said .. I am confident you will choose wisely not only for skill but someone you feel comfortable with who will answer whatever questions or concerns you have .. UNTIL YOU are comfortable with what the future holds!
I was just thinking .. since I have not had surgery .. I have not kept the information in my head .. but I know I have read various things on ways/methods/things that help recover better from surgery. Why not do some googling in advance and figure out some things that might help you .. I just did just one thing and came up with: http://www.surgerysupplements.com/how-to-enhance-post-surgery-recovery/
.. I'm not saying this one is good or bad. Just that there might be ways for you to prepare yourself mentally and physically for a surgery.
SO glad you let me know how you are doing .. please keep me posted on what is going on. Plus it would be helpful to others if you find some things that are helpful to you in your journey preparing for your surgery. We are all in this together! Hugs to you! Katherine
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1 ReactionHi Lisa, good to hear from you! You are being SO pro active in your having your doctors consulting with each other .. that is SO great! Since you are doing this excellent idea .. if I was in your shoes .. I would just sit back and rely on their judgment. In my understanding .. decisions on MAC/MAI is like putting together a big puzzle. Basing it on the CT scans/Xrays/breathing tests .. all those kinds of things .. PLUS just plain asking you how you feel. Since you are feeling great plus doing such a good job of working out .. I'd just go with the flow .. attitude of gratitude that you are at the point you are!
Now to the shower .. COMPLICATED!! I hate to even say anything because it is so controversial. Dr. Aksamit said they just don't know .. a couple can take showers in the same showers for 20 years .. one gets MAC .. the other doesn't. So WHO knows! So I can ONLY speak for myself .. I have just now made the decision .. COSTLY .. that after a great deal of research I am going to invest in a monthly disposable shower head: Kleenpak™ Disposable Shower Head Filter .. http://www.pall.com/main/consumer-water/product.page?lid=gu7ucktu
If you decide you are interested despite the monthly cost .. I plan to deduct the cost on my tax return as a medical expense. If I am audited I will get a note from my Pulmonologist .. if it becomes an issue .. I at least feel I am trying to do my 'due diligence". Who knows if it will do any good or not .. even the doctors do not know for sure just how mycobacterium gets in our lungs! Here goes .. not in any definite pattern .. just notes from MANY emails with Christopher the Manager who I spoke to/emailed with who has to approve setting up the account before shipments can be made.
*we will ship only the (2) ea. KAQF42
*I give all homecare patients $60 ea. for shower filter. The list price is $96.20 ea. for KAQF42.
*Part#SHO1/2MV quick connect fitting @ $30 ea. (one-time purchase) for shower filter required
*the entire filter is inside the showerhead housing you see in the photos and the entire piece is replaced. The disconnect fitting screws into the end of the shower hose and then you just snap in the filter to the quick connect. No screwing in of the filter as it should just snap in.
*Please also ensure that you do not allow the showerhead/filter hang down on the hose to the floor as it may draw in air inside and cause it to airlock and then water cannot pass through. We did not discuss this on the phone but is also an issue if this happens besides the particulate/sediment in the water. You can use it while showering off of the hook but always hang it back up on the hook when done.
*We also have a Youtube video https://www.youtube.com/watch?v=j5bP3MBPqWk&sns=em that shows this shower filter.
*NOTE: The filter is validated to remove a gram negative bacteria, fungi, and parasites which would include NTM. Many other homecare patients use our product with much success.
*If you would like to set-up an account, please call our customer service at 877-367-7255 and tell them that you would like to be set-up as a homecare customer and you have been speaking to me. They should take down all of your information for set-up. Thanks, Christopher Connolly Manager, Hospital Water Americas +1-973-632-1920 (cell) chris_connolly@pall.com
Lisa, this is just something I am going to give a try to .. not endorsing! Again, thank you for checking in! Hugs to you! Katherine
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UPDATE
I have now been using the above noted shower head for some time. Due to some skin issues I cannot shower daily so do not intend to change the shower head monthly. Am going to watch for a variance in water flow (per a friend's advice .. plus common sense).
I like the water flow .. the handling of handle. I have the European hand held style rather than wall unit .. so it is working quite well .. I am very satisfied that if indeed there is a mycobacterium factor in showering .. I am doing my best in this area!