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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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Thanks Terri for the information about the conference on May 19 - I will go online and get more info... if I do decide to and can attend, I will let you and the group know as it would be great to meet up with anyone who goes who is in our group. Let's keep in touch on this. Pamela
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1 ReactionIndeed Pamela, although I'm in Toronto Ontario, I think it would be great to attend. The agenda certainly is full. I found: https://www.ntminfo.org/images/media/News/conference_flyer.pdf
thanks! Tes.
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2 Reactions@pamelasc1 - Pamela, this webpage lists lots of interesting things, including the conference in Washington, DC. It's not a Mayo Clinioc conference, it's put on by the NTM Info & Research, Inc. - Paula
https://connect.mayoclinic.org/group/mac-bronchiectasis/?tab=discussionsConference info is here . . .
2017 NTM & Bronchiectasis Physician/Patient Conference.
Join us at a day-long CME-accredited conference on nontuberculous mycobacterial (NTM) lung disease and bronchiectasis, on Friday, May 19, 2017 at Georgetown University in Washington, D.C.
Sessions will cover a range of important topics on these two diseases taught by key opinion leaders from around the world, and the day will also feature Patient and Industry Panel Discussions.
Registration is FREE and breakfast and lunch will be provided. Space is limited so register early to reserve your spot!
Click here to register for the conference!
http://campaign.r20.constantcontact.com/render?m=1101618704496&ca=a3bfadb1-a1c9-412a-9f55-a293ef414355Click here to view the agenda and faculty.
https://www.ntminfo.org/images/media/News/conference_flyer.pdf-
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1 ReactionHi Terri, Pamela, Tessie, and Paula, I just checked it out .. that would have been SO interesting .. and fun to catch up with everyone as a group but that is my granddaughter's college graduation festivities! We have had plane tickets for six months. If anyone attends be sure to bring back lots of notes and good information to our Forum! Hugs to all! Katherine
Pamela, Tessie, Paula, Terri - I registered but have to determine if I can afford to fly out from AZ. It would cost me over $1,000 between plane fare, hotel for a night and cab fare. Plus I have to pay someone to watch my dogs & cats while gone. Praying about it and will make a decision soon. Will let you know once I decide. Thanks for the info! Linda
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1 ReactionHi, it's Jen, the newer member! I read someone's post regarding the 1 day conference in DC on May 19th. I live only 3 1/2hrs away so my husband can tag along & do the driving. I wanted to make sure you all to know that the registration is FREE!!! And since it starts at 8:30am, I booked a room at the Days Inn on Connecticut Ave. it is the Northwest side of town which is where Georgetown University is located. I must say, I don't know how nice the hotel is but it's the best deal I could get & it has good ratings by Trip Advisor who I trust. The rate is $189+tax. That is nearly 1/2 of the rate that the Conferamce set aside a group of rooms at the Marriott which was VERY expensive! Someone mentioned that if anyone else was going, we could meet up in DC & say hello or have dinner together! I to copy the link & post it here but it isn't working for me! Here's the name to look up: NTM/Bronchiectasis Physician/Patient Conference 2017
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1 Reaction@jentaylor Hi Jen, I think this is just so great! You will come back to our Forum with all kinds of notes and information to share! Can't wait to hear all about it .. but I will be a proud Grammy watching my final little one walk across that stage getting her college diploma! Both wonderful events! Keep good notes to share! Hugs! Katherine
Hi all, I wanted to reply that I have never gone to Mayo but have always wanted to. When I was acutely ill & not expected to live, I looked into Mayo to do their 5-7 day workup exam which hopefully leads up to a diagnosis or gives us enough info to move forward with. But when I called, I needed to pay the money out of pocket in advance. I currently have Highmark BCBS & I'm on Medicare, medical disability. I'm not sure what their financial policy is now. I went ahead & went to Mayo's web page & clicked on "appointment request". It's says they will contact me within three business days. I reviewed the financial assistance form & feel confident that my case might apply to be given assistance. The income on our taxes records seems like we should have enough money to pay but the money I spend every month on medical expenses & such, completely deplete our $ for the month (after paying bils). I am an RN & worked for 12 years before getting ill. I miss having an identity other than a "sick woman". I also miss the income. But it's just not possible to work nor do we have confidence that I will ever be able to return work again due to my undiagnosed lung condition & cvid (common variable immuno deficiency).
I found flights from State College, PA to Mayo for $352 R/T! I think that's a great deal. Still would need to pay for a hotel but after reading all of your posts & Katherine's kind reply, I feel driven that I must be seen by physician at Mayo!!! Some how, someday!!! I just have! I don't mind starting treatment Mon/tomorrow but I still want to be evaluate at Mayo!
Since tomorrow is day #1 for starting abt (antibiotics) I'm wondering what the best schedule is for taking the abt. I look through the posts & it sounds like: take all three together at bedtime (2 hrs after eating) on M, W & F. Please, please correct me if this is not correct! I still need to purchase probiotics. I may have to start the abt without the probiotics until I can get them.
This MAC/bronchiectasis diagnoses came after a long & arduous 10 years of being so ill. It's a bit overwhelming but I think with your support, speaking from what you know to be true, I think I can better do this more so now, than before I stumbled upon your group. I am feeling so thankful!
If anybody thinks hearing more of my background might be helpful, let me know. I certainly don't want to bore anyone. Nor do I want to make it seem like I feel sorry for myself & need to tell everyone. Because I've been so ill for so long & I don't have a lung disgnoses, people don't know how to react & I'm sure it seems almost made up. It is very easy to question how somebody is so sick for so long without a diagnosis?!? It makes no sense!
My poor 12 year old daughter, Emma, is emotional scared because of my illness. It started when she was 3 yrs old. I had to stay in the hospital for months at a time. She would visit, crawl into my bed with me & want to stay there. Then she would eventually have to go home & she would cry so hard & I could hear her cry all the way down the hallway. She than became mute from all of the trauma. At age 5 we sat her down to prepare her for my impending stealth. Then somehow, I made it through!!! It's been a long tough & sad road for her. She has really struggled & still does. 2 weeks ago she was talking about hurting herself. She started therapy & medication & I think it seems to be helping some. I pray & pray & pray for her! I think if I didn't have her in my life, I would have given up years ago. But because she is here, counting on me, depending on her mom, I fight like crazy to stay alive. I have hope which is the only way that I get by.
My relationship with my husband is so strained from the illness. For 5 years he was my caregiver & since then we have never reverted to an actual married couple. It's very difficult. All my relationships are alteremed because of my illness. It really sucks!!!
I would love to see a Mayo specialist first but that could take a while before I actually get an appointment, if I can, & I worry about delaying treatment because of reading people's experiences of what happens when you wait to treat it or if it was not diagnoses until much later into the disease. My lung diseas has not been MAC all along. But I'm sure it's the reason I have gotten sicker again & in was in the hospital in May & September & declining. Anyway...I've gone on long enough. Sorry this post is SO long! I tend to always have something to talk about or learn about!
Again, I can't say this enough, thank you so much for being a support & a guidance & a listening ear along with providing great first hand information! ~Jen 🙂
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2 Reactions<br><br><br><br><br>Great! I registered already.<br> <br><br>
<br><br><br><br><br>Will do Kathrine!<br> <br><br>
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