1. < MAC & Bronchiectasis
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Remembering KateMN - losing a virtual friend hurts too

Posted by Colleen Young, Connect Director @colleenyoung, Aug 11, 2017

On August 4th our dear mentor, Katherine left us. Her son, Scott, sends this message that she wanted to share with you.

I HAVE A PAINTING .. IT SAYS .. “TO TRAVEL IS TO LIVE”. THE FUN OF RESEARCHING .. PLANNING .. TRAVELING IS GONE FOREVER FROM MY LIFE. HOWEVER I HAVE BEEN BLESSED TO TRAVEL SINCE MY 50’S TO ALL THE CONTINENTS BUT ANTARCTICA .. MY FAVORITE COUNTRIES .. MANY TIMES. IF MY FUTURE HELD GAZING OUT AT THE MEDITERRANEAN SEA FROM OUR BELOVED ITALIAN AMALFI COAST .. YES! I WOULD GRAB IT WITH BOTH HANDS!

MY SPIRITUALITY AND BELIEF SYSTEM .. NONE OF US KNOW WHAT IS ON THE “OTHER SIDE” BE WE CHRISTIAN, BUDDHIST, JEW, HINDU, MUSLIM OR WHATEVER FAITH .. UNTIL WE “PASS OVER”. THEN AND ONLY THEN WILL WE TRULY KNOW WHAT IS ON THE “OTHER SIDE” .. DESPITE THE DESTRUCTION RELIGION HAS WROUGHT ON PLANET EARTH. BUT I HAVE EVERY CONFIDENCE THAT AS I “PASS OVER” I AM GOING TO BE MET BY GRANDMOTHER BENNETT AND GRANDMOTHER HUNNICUTT WITH THEIR LOVING HANDS TO HELP ME “PASS OVER”. THIS I BELIEVE.

*I WAS TOLD MANY YEARS AGO THAT IN REALITY “EACH OF US IS THE STAR OF OUR OWN SHOW” .. MEANING THAT EACH OF US GO ON IN TIME WITH OUR OWN LIVES .. SO I WANT EACH OF YOU TO QUICKLY BE ” THE STAR OF OUR OWN SHOW” .. LIVING YOUR LIFE AS WELL AS I DID WILL BE YOUR BEST TRIBUTE TO ME!

I HAVE HAD A FULL LIFE. I HAVE A LIFE I CAN FEEL PROUD OF. I HAVE LIVED LIFE ETHICALLY .. LOVINGLY. I RAISED ONE SON THAT I AM VERY PROUD OF AND ONE SON THAT HAS RISEN ABOVE MANY DIFFICULTIES IN HIS LIFE THAT I AM ALSO PROUD OF. I HAD A VERY SUCCESSFUL CAREER IN AN ERA IN WHICH IT WAS VERY DIFFICULT FOR WOMEN TO SUCCEED .. ALLOWING ME TO ACCUMULATE A PORTFOLIO SUFFICIENT TO ESTABLISH A SCHOLARSHIP AT THE U OF MONTANA IN A SUBSTANTIAL AMOUNT FOR GIRLS FROM MY BACKGROUND. I TRAVEL EVERY CONTINENT BUT ANTARCTICA .. FAVORITE COUNTRIES MANY TIMES OVER .. ONE OF MY FAVORITE PIECES OF ART SAYS “TO TRAVEL IS TO LIVE” .. THAT SAYS IT ALL! THIS SAID .. I HAVE LIVED WELL .. LOVED WELL. IT IS NOW TIME. GOOD BYE.

KATHERINE

KateMN

Katherine -- Wife, Mother, Grandmother, Mentor

Back in 2011 @katemn posted a simple message on Connect with “I am new to Mayo online .. I was hoping to find others…” That single post has grown to establish an incredibly supportive and knowledge community of people helping each other live well with MAC and bronchiectasis. Katherine’s relentless trumpeting of the message “knowledge is learning to advocate for yourself. Knowledge is taking back the power over your health care” will forever remain with all the members of the MAC group and continue to echo throughout Connect. Her presence and words will continue to comfort, educate and strengthen to the community.

Thank you forever, Katherine.

Dear members, I invite you to share your thoughts about Katherine here. How did she support you?

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

colapyrus | @colapyrus | Aug 16, 2017

I just wanted to give my condolences to Katherine's family and to the Connect family. Katherine was there to steer many of us toward taking our health into our own hands and fighting for 2nd opinions from experts and getting the medical attention we needed. She was a pro at saying the right thing to so many people especially the newcomers but doing it with love and grace. I admire her willingness to give of herself even when she was fighting her own battles. She was a wonderful lady and will be missed greatly! And now, thank you to the mentors for carrying on where she left off. Jan

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 17, 2017
In reply to @tdrell "Dear Windwalker Terri and everyone else....I have been reading in toto all of the postings/tributes ....in..." + (show)
@tdrell

Dear Windwalker Terri and everyone else....I have been reading in toto all of the postings/tributes ....in order...for our dearest departed Katherine.( I really do not have a focused system for accessing the connect site and only saw a brief posting when Katherine left us...not the tributes nor cause of death. So now all the pieces are put together re the loss) and all the wonderful comments left about Katherine are PERFECT.
The group needs to know....it is obvious that Katherine ( and no doubt Colleen) chose the perfect person as her sucessor in Terri Windwalker.
Example:Here she is...in pain from banging her body thanks to a bifocal caused misstep, she continues to be meticulous , compassionate, and articulate with all of us.
So....as we struggle with all the evils in our bodies, we forge ahead ...as Katherine and now Terri inspire and encourage us to do.
A reminder that I will be attending NJH NTM annual workshop for Patients/families on October 21 in Denver. Get questions ready as you think of them...so I can ask the experts. Last I checked speakers were not listed.
Dearest Katherine....your legacy continues.
Tdrell aka Terri

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@tdrell Thank you for the kind words Terri, I found them uplifting as I don't feel so hot today. Want to be or not; I consider you my 'right hand gal'. You have responded to 'newbies' when I have been abscent, and you have been wonderful (and @ling123 too) with researching things to help us all understand better. I am grateful for the contributions. - Terri M.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 17, 2017
In reply to @tdrell "Dear Windwalker Terri and everyone else....I have been reading in toto all of the postings/tributes ....in..." + (show)
@tdrell

Dear Windwalker Terri and everyone else....I have been reading in toto all of the postings/tributes ....in order...for our dearest departed Katherine.( I really do not have a focused system for accessing the connect site and only saw a brief posting when Katherine left us...not the tributes nor cause of death. So now all the pieces are put together re the loss) and all the wonderful comments left about Katherine are PERFECT.
The group needs to know....it is obvious that Katherine ( and no doubt Colleen) chose the perfect person as her sucessor in Terri Windwalker.
Example:Here she is...in pain from banging her body thanks to a bifocal caused misstep, she continues to be meticulous , compassionate, and articulate with all of us.
So....as we struggle with all the evils in our bodies, we forge ahead ...as Katherine and now Terri inspire and encourage us to do.
A reminder that I will be attending NJH NTM annual workshop for Patients/families on October 21 in Denver. Get questions ready as you think of them...so I can ask the experts. Last I checked speakers were not listed.
Dearest Katherine....your legacy continues.
Tdrell aka Terri

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@tdrell Terri, Oh how I wish I was going to Denver with you! I do have a question for you to ask while there. Please ask why is theret a big divide among physicians on how to treat this disease. My doctor thinks it's 'Old School" to automatically put people on the BIG THREE, some frown on prophylactic alternating treatment w/antibiotics to ward off MAC and Pseudomonas. My guess is the answer you will get is "Every case is different, blah, blah blah...." and while that is true, we are talking about first time diagnosis, and the fact that some drs poo-poo ideas right off the bat on how to properly treat. Tell them, this is all very confusing. I will try to think of more questions as well.

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unicorn | @unicorn | Aug 18, 2017
In reply to @windwalker "By now, most of you have received the news that our fearless mentor, Katherine has passed..." + (show)
@windwalker

By now, most of you have received the news that our fearless mentor, Katherine has passed away. I feel certain this news has rocked the world of many of you; as it did mine. Some people have private messaged me wondering if she had succmbed finally to her bronchicstasis or MAC or pseudomonas. NO, she did not. Our condition is manageable. She contracted two more particularly nasty bugs of which were resistant to all antibiotics. I have been in touch with her son, Scott. He and I both believe she picked those bugs up when she was spending nights in the ICU with her husband and on many other trips with him in the hospital. These two particular ones are mostly acquired from hospital settings. They are super-bugs. When you hear of hospitalized people dying from pneumonia; this is what this super-bug is. I will give you the names of the bacteria for those of you that want to look it up. They are: Klebsiella pneumonia and Serratia Marcescens. These two are especially dangerous to people like us that are immunocompromised and have weakened or damaged lungs. We are the types that it likes to attack. People like us rarely survive this kind of infection. For the most part, they are antibiotic resistant. I am sharing this with you so that you know to avoid hospitals and convalescent homes whenever possible. Those can be dangerous places for us. I have a rule: I do not visit people in the hospital. I politely explain to them why I can't. We all thought the world of Katherine and prayed that she went peacefully. Her son confirmed that she did, she went in her sleep. Her interment and ceremony to celebrate her life will be on Sept. 2 at 2:00. If you can, I'd like for all of us to take pause at that time and honor her. I will post a reminder as that date gets closer. Hugs to all of you, Terri M.

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Wow, shocked! I had only been on the forum a few weeks before she died but just figured it out. Helpful, even in death. She was so positive with me, I was pretty lost before all the knowledge from this forum. i'm one of the lucky ones that coughs up tons of blood, terrifying, until I found out not alone. Goodbye Katherine, You helped me a lot and were very kind. xoxo Christa

REPLY
tdrell | @tdrell | Aug 18, 2017
In reply to @ling123 "@heathert Good point. I didn't have a chance to look further into the two super bugs..." + (show)
@ling123

@heathert Good point. I didn't have a chance to look further into the two super bugs that Terri listed in her posting when I first read it. Now that you have mentioned it, I did more reading. Now it's getting scary. When I first learned that the bacteria that cause MAC do not coexist with the bacteria that produce pink slime, I was relieved. But now it seems that we could be getting both into our body and one or both could become lethal. It seems to me that both of these are ubiquitous. It is probably impossible to avoid coming in contact with them.

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Heathert and Ling123 and all,,,,be thinking of questions for the "experts" and sending to me....we have two months to go...last year they had a panel of the speakers and we could ask our questions and they would decide who had the expertise to answer. I asked if they could ever envision having any type of vaccine to protect the vulnerable from NTM....Dr Daley of NJH said NO.....like it was impossible....hours later l recalled that there is a type of protection for TB....NTM"s cousin....BCG....used in some other countries ...l believe at birth. I guess one of the differences though is that there are 171 minimum of the NTM bugs versus the tuberculosis mycobacterium. tdrell

REPLY
tdrell | @tdrell | Aug 18, 2017
In reply to @tdrell "Dear Windwalker Terri and everyone else....I have been reading in toto all of the postings/tributes ....in..." + (show)
@tdrell

Dear Windwalker Terri and everyone else....I have been reading in toto all of the postings/tributes ....in order...for our dearest departed Katherine.( I really do not have a focused system for accessing the connect site and only saw a brief posting when Katherine left us...not the tributes nor cause of death. So now all the pieces are put together re the loss) and all the wonderful comments left about Katherine are PERFECT.
The group needs to know....it is obvious that Katherine ( and no doubt Colleen) chose the perfect person as her sucessor in Terri Windwalker.
Example:Here she is...in pain from banging her body thanks to a bifocal caused misstep, she continues to be meticulous , compassionate, and articulate with all of us.
So....as we struggle with all the evils in our bodies, we forge ahead ...as Katherine and now Terri inspire and encourage us to do.
A reminder that I will be attending NJH NTM annual workshop for Patients/families on October 21 in Denver. Get questions ready as you think of them...so I can ask the experts. Last I checked speakers were not listed.
Dearest Katherine....your legacy continues.
Tdrell aka Terri

Jump to this post

Windwalker aka Terri l hope the limbs and sore spots are slightly better today....am sending the white light your way....and a reminder to BE CAREFUL .....which is a laugh from the person in 1992 while dressing in bedroom in a hurry put two legs into one Jean leg ....fell...broke my ankle.....25 years later chums tell me that they think of my klutzville when they are in a hurry and putting on slacks..
you are too kind and soooo thoughtful...am sure Ling123 all others agree.
tdrell aka terri

REPLY
tdrell | @tdrell | Aug 18, 2017
In reply to @tdrell "Dear Windwalker Terri and everyone else....I have been reading in toto all of the postings/tributes ....in..." + (show)
@tdrell

Dear Windwalker Terri and everyone else....I have been reading in toto all of the postings/tributes ....in order...for our dearest departed Katherine.( I really do not have a focused system for accessing the connect site and only saw a brief posting when Katherine left us...not the tributes nor cause of death. So now all the pieces are put together re the loss) and all the wonderful comments left about Katherine are PERFECT.
The group needs to know....it is obvious that Katherine ( and no doubt Colleen) chose the perfect person as her sucessor in Terri Windwalker.
Example:Here she is...in pain from banging her body thanks to a bifocal caused misstep, she continues to be meticulous , compassionate, and articulate with all of us.
So....as we struggle with all the evils in our bodies, we forge ahead ...as Katherine and now Terri inspire and encourage us to do.
A reminder that I will be attending NJH NTM annual workshop for Patients/families on October 21 in Denver. Get questions ready as you think of them...so I can ask the experts. Last I checked speakers were not listed.
Dearest Katherine....your legacy continues.
Tdrell aka Terri

Jump to this post

windwalker...printed out and will go into workshop folder...tdrell

REPLY
ling123 | @ling123 | Aug 18, 2017
In reply to @tdrell "Dear Windwalker Terri and everyone else....I have been reading in toto all of the postings/tributes ....in..." + (show)
@tdrell

Dear Windwalker Terri and everyone else....I have been reading in toto all of the postings/tributes ....in order...for our dearest departed Katherine.( I really do not have a focused system for accessing the connect site and only saw a brief posting when Katherine left us...not the tributes nor cause of death. So now all the pieces are put together re the loss) and all the wonderful comments left about Katherine are PERFECT.
The group needs to know....it is obvious that Katherine ( and no doubt Colleen) chose the perfect person as her sucessor in Terri Windwalker.
Example:Here she is...in pain from banging her body thanks to a bifocal caused misstep, she continues to be meticulous , compassionate, and articulate with all of us.
So....as we struggle with all the evils in our bodies, we forge ahead ...as Katherine and now Terri inspire and encourage us to do.
A reminder that I will be attending NJH NTM annual workshop for Patients/families on October 21 in Denver. Get questions ready as you think of them...so I can ask the experts. Last I checked speakers were not listed.
Dearest Katherine....your legacy continues.
Tdrell aka Terri

Jump to this post

@tdrell Ha, ha.... I was laughing out loud when I tried to picture you putting two legs into one pant leg because I can so relate because I'm a klutz myself. My husband's favorite line, "I'm amazed you are still standing after all the accidents you've had over the years". Although I have not graduated to your level yet, I wouldn't be surprised that one day my klutzness would end up killing me before my Bronchiectasis even begins to try.

And, yes, I totally agree with you that @windwalker Terri M is a great mentor and a very kind person, and a thoughtful friend. You are probably the sickest of all of us in this group (not counting Katherine). Yet you are still in here everyday trying to help, to comfort and to encourage others. Not enough can be said about our gratitude and respect for you, Terri.

REPLY
heathert | @heathert | Aug 18, 2017
In reply to @ling123 "@heathert Good point. I didn't have a chance to look further into the two super bugs..." + (show)
@ling123

@heathert Good point. I didn't have a chance to look further into the two super bugs that Terri listed in her posting when I first read it. Now that you have mentioned it, I did more reading. Now it's getting scary. When I first learned that the bacteria that cause MAC do not coexist with the bacteria that produce pink slime, I was relieved. But now it seems that we could be getting both into our body and one or both could become lethal. It seems to me that both of these are ubiquitous. It is probably impossible to avoid coming in contact with them.

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Hi @tdrell, I have just posted about a pseud vaccine , have a read, and also about breaking down biofilms, all going on here in NZ only 1.5hrs away from me.
I will get some questions ready, thanks for thinking of all of us .Heather

REPLY
tdrell | @tdrell | Aug 18, 2017
In reply to @ling123 "@heathert Good point. I didn't have a chance to look further into the two super bugs..." + (show)
@ling123

@heathert Good point. I didn't have a chance to look further into the two super bugs that Terri listed in her posting when I first read it. Now that you have mentioned it, I did more reading. Now it's getting scary. When I first learned that the bacteria that cause MAC do not coexist with the bacteria that produce pink slime, I was relieved. But now it seems that we could be getting both into our body and one or both could become lethal. It seems to me that both of these are ubiquitous. It is probably impossible to avoid coming in contact with them.

Jump to this post

Heathert....exciting ...reading what you wrote re vaccine for pseuodo !!! And about biofilms...will await at your convenience questions for workshop...we still have 2 months!!! Take care .tdrell.

REPLY
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