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Thu, Jul 27 9:23pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Dear All, I saw my Mayo doctor yesterday. Based on that appointment I notified Colleen that I would like to resign effective immediately as Volunteer Mentor of the ” MAC & Bronchiectasis Mayo Connect”. I feel @windwalker Terri is working very hard currently as well as all the wonderful members jumping in to help her keep the Forum alive and well.

I want to thank All Members for a wonderful experience .. it has been one of the most rewarding volunteer efforts of my life. I received MUCH more than I ever gave. I feel very comfortable departing as any Newcomer has been given instructions in https://connect.mayoclinic.org/discussion/file-cabinet-information-from-katherine/

to find any knowledge/wisdom that I may have been able to impart while I was the Volunteer Mentor. As new information becomes available .. Terri and the others will add it to the Forum. I have every confidence that the MAC & Bronchiectasis Mayo Connect will be alive and well just as long as it is needed!

Farewell to all .. thank you for the opportunity to serve you. I am sending Big Hugs and positive energy! Katherine

Mon, Jul 24 6:51pm · FILE CABINET INFORMATION .. FROM KATHERINE

Dear All, the thought just occured to me .. I just remembered that hidden away in my File Cabinet I had a little trick given to me by Colleen that I used frequently that could help those of you that are looking for posts from me that were in my File Cabinet .. I am going to post it below. I am not doing great … not sure really why .. going to Mayo Clinic 7/26 but frankly do not hold out great hope. Do not feel I should still feel this way after 2 cycles of Tobramycin. But who knows .. one day at a time. Hugs to all. Katherine

MAYO FORUM~FINDING MESSAGES-2017
Optimizing your MESSAGE search on Connect

https://connect.mayoclinic.org/discussion/tip-optimizing-your-search-prowess-on-connect/

TO SEE A LOG OF @katemn PREVIOUS POSTS and to find her File Cabinet Posts: Here’s how:
1. Click on @katemn (click her photo in the upper right corner (pull down menu.. and select “view”)
2. Scroll down the page until the header “Activity by katemn, Volunteer Mentor @katemn” There you will see all the messages she has posted in reverse chronological order. This is also helpful if you want to cut and paste something that she said before and need to repeat it. (such as File Cabinet)

FROM COLLEEN:
1. Go to the magnifying glass at the top of Mayo Connect. This is the search bar.

https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=28

2. Enter your search term. For example “Parkinson” (Note that I use the root of the word, rather than Parkinson’s or Parkinsons. Using the root of a word will return results that include variations with s or ‘s)
3. Click enter. This will return an overwhelming number of messages. So the next step will help you easily scan the results for all mentions of Parkinson’s.
4. Press Ctrl + F on your keyboard.
5. Enter the same search term in the field that pops up. Click enter.
This will highlight every mention of your search term in yellow and give you the number of instances that it appears in the search results so you can scan for them quickly.
The red circles show: The search term I put into the field that appears in the top right when I press Ctrl+F 1 of 66 means that the search term appears 66 times on this page. The search term is highlighted in yellow each time it is mentioned.

Sometimes I will use the Ctrl +F to cross reference with a second term. For example, if I want to find discussions related to “Parkinson’s and mental health” I first search for Parkinson and then use Ctrl + F to find all mentions of a variety of terms related to mental health, one at a time, like “depression” or “mood” or “sad” or “overwhelmed” etc. You can see how this might be helpful for variations in spelling or different terms. Let us know if you have good search tips to add.

Sun, Jul 16 8:00pm · Have Bronchiectasis, recently diagnosed with pseumonas. in MAC & Bronchiectasis

Dear All, as many of you know .. I am battling three bacteria .. PSEUDOMONAS AERUGINOSA, KLEBSIELLA and SERRATIA   .  Right now I am not doing well with the enemy! I  am quite ill.  I contacted Colleen and requested a Leave of Absence as your Volunteer Mentor until I regain some strength. I ask that you ALL take loving care with each other .. support each other as I know you will .. BUT ESPECIALLY watch for Newcomers and help them as YOU have been helped.  You know so well how scary those beginning steps are .. support them along that journey .. they SO need it!  REMEMBER .. you ONLY need to be ONE baby step ahead of a Newcomer to support them!  DO IT! You will note @windwalker Terri with but 44% lung capacity tries her VERY best to always jump in to help me any time I’m not doing well .. can any of us do less? Support each other .. please do!

You needn’t send me caring and hug posts .. truthfully I am not going to be on Connect till I feel better  .. I am going to concentrate on rest and regaining some energy.  BUT I will FEEL your positive energy and hugs .. every single one of them!  Till I am better .. I am sending EACH of you a Big Hug!  Katherine

Sat, Jul 15 12:14am · Have Bronchiectasis, recently diagnosed with pseumonas. in MAC & Bronchiectasis

@auntnanny, Jan, REMEMBER .. we are ALL about “Due Diligence” .. of COURSE you should seek out a “second opinion” about a lab! Call the best hospital in town and ask WHERE do THEY send their lab work? Don’t take no for an answer .. be persistent! Ask around .. you have to be your OWN best advocate Girlfriend! When you have FOUND the lab you want to go to .. you THEN have to contact your doctor to have him send the ORDER to that PARTICULAR LAB. Go for it! Hugs! Katherinne

Fri, Jul 14 11:54pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@auntnanny, Jan, We have a very dear friend who has a form of ALS who is a lifelong musician .. worked his way through law school as a sax player. As his lung capacity diminished he was determined to continue with his jazz band AND enhance his lung capacity .. sure enough .. he took up the harmonica AND has maintained as much of his lung capacity as possible with daily harmonica practice! So the below really caught my eye! Thought you might enjoy it! Katherine

Modern Healthcare, Meet the Harmonicats: Using musical therapy for COPD, “Play three verses of ‘Oh! Susanna’ and call me in the morning.” That could become a common “prescription” pulmonary specialists pass on to their patients as “harmonica therapy” for chronic obstructive pulmonary disease starts to take hold. Harmonicas have been used to improve lung function at hospitals across the country, including the Mayo Clinic, Jacksonville, Fla.; El Camino Hospital, Mountain View, Calif.; Seton Medical Center, Austin, Texas; and Advocate Christ Medical Center near the South Side of Chicago—an area that’s produced some legendary blues harmonica players.

Fri, Jul 14 11:14pm · Have Bronchiectasis, recently diagnosed with pseumonas. in MAC & Bronchiectasis

@auntnanny, Jan, you seem very comfortable with Dr Moua at Mayo .. but you do seem very concerned. Each of us has the right to a second opinion to feel serene .. you said: ” lady in Colorado Springs (retired schoolteacher) who uses National Jewish and feels that are by far the best place to be.” If you feel the need for a good second opinion NJH is an excellent place to get it. Hugs to you! Katherine

From my File Cabinet:
JEWISH NATIONAL HEALTH https://www.nationaljewish.org/treatment-programs/directory/ntm
Member @128128terry11t, Q National Jewish: how long (approximately) does it take to get in once you have sent the records and the sputum sample? A I believe that once they check your insurance and make certain that all is okay, it was about 5 weeks or so for me. If your schedule is flexible, you could ask that if they have a cancellation to let you know and you might be able to get in sooner. Don’t be afraid to call them and ask that question; they are extremely kind and professional. I really like my Dr. Drummond.

FINANCIAL You will have an excellent experience please call the number on the site to see if you financially could go to NJH……for the first 50 years of their existence….1898 til 1958 they did not charge clients..I am on Medicare….they accepted it fully….3 months after my trip….l have yet to see a bill….they have a separate person who works out the financial part of the visit prior. I know it sounds too good to be true….but it is there to help people. l beg you to contact them to check

From member @tdrell, Terri : At National Jewish Health last week, all I did was show my Medicare card then my supplement card……no other mention of $/payments. I could focus my energy on the rigorous tests without worry about paying for pricey tests….especially as they were added.

Member @beatitnow ..my doctor is Dr. Castro at Barnes Jewish Hospital. The phone number is 314-454-8917

Fri, Jul 14 11:03pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@lindam272, Linda, my guess would be those greenish rubberish parts I see .. probably give out in time? I guess we need to use indelible marker to date them! Thanks Linda! Hugs! Katherine