Oh I usually hate these things but I suppose someone has to go first to get the ball rolling!

Hi everyone, I'm Bret and I am a Grant Writer at the COPD Foundation. I've been with the Foundation for almost a year and a half and I'm amazed by how much I have learned in such a short time, not only about COPD but bronchiectasis and NTM as well.

Interesting facts about me--I'm an avid golfer, although my score wouldn't show that! I have always been fascinated by politics so I love living in the Washington, DC area. I love all sports but am most passionate about baseball and my Boston Red Sox. Bring it on Vinny M, the Sox will reign supreme over your Yankees this year!

What a cool idea! I'm Kristen, I live in Washington, DC and work in the same office as Bret. I know better than to mess with Bret's love of the Red Sox. :)

Interesting facts: I went on a roller coaster for the first time when I was 41, I have religiously kept a daily diary for the past seven years (I wish it was longer!), I love reading about true crime and watching horror movies (Halloween is such a fun holiday!), and my favorite hobby is documenting travel through photography. So glad to know everyone here!

Hello everyone I am Kandy from South Dakota. Been sick most my life asthmatic overlapping copd, chronic bronchitis every year. Found I had bronchiectasis in 2014. Many end of life predictions starting at 10 yrs old. 1997 very sick told to get my affairs in order came home on oxygen. Been in hospital 2006 for strep pneumonia, 2015 exacerbation and this last Sept exacerbation they done a bronchcoscopy first for me. I just fight on as best I can.

I been advocating since 2009 beings many family members been asthmatic putting info in our papers and around the area. In 2013 some one told me to get hold of the Copd Foundation so I did. I received my title of Captain of South Dakota for advocacy in 2013. In October I write to our Governor and get the Proclamation making South Dakota Copd Awareness Month. Every year I have a copd event in my town. Write articles for papers in the area. As of now we have 3 captains for SD. I will have an event on Nov 3rd with our hospital bazaar. Also have a demo on our local radio station for November.. I put articles in the stores and at our local clinic. This year my daughters are helping me beings my health hasn't been good.I am admin in several support groups on FB and belong to several. Also 360social member.Wish me luck at the event!! I have been going to pulmonary rehab since 2012. Its 3 times a week not easy but I am there doing what helps me.

Hi everyone,

My name is Delia and I have been with the COPD Foundation since 2009. Some interesting facts about me:

- I am originally from Miami but I now live in Central Florida. Despite traveling a decent amount over the past few years, I have never seen snowfall in real life (crazy, I know)! Hopefully that will change soon! :)

- I have two Yorkies who run my world, but I wouldn't have it any other way. They're tiny dogs (4 to 5 lbs) but they have big personalities and are the sweetest munchkins once they warm up to you.

- Living in Central Florida allows for easy access to theme parks, so I often find myself wandering through Disney World admiring the magic!

Look forward to reading others' posts!

Hello Everyone! I am Elizabeth Benkert and I also work out of the COPD Foundation's DC office (with Bret, Kristen and Gretchen)! I work out of the Foundation's Research Department.

One of my favorite things to do in the city is visit Malcolm X Park (sometimes referred to as Meridian Hill park) on the weekends … I like to bring a "picnic" (i.e. lots of snacks!) and hammocks, invite friends or bring a good book, and enjoy some nature in the midst of one of the busier neighborhoods of the city (i.e. U street Corridor is just around the corner, think: Ben's Chili Bowl, Lincoln Theatre!).

As a younger professional, working with limited personal resources, I think its so important to find creative ways to transform the space(s) you are in and to build community - because we can always do more together!

I would love to hear how others find ways to transform the spaces accessible to them to create meaningful experiences for themselves or their communities?!

Kristen,

Yes, a daily diary for seven years is super impressive. I had started and stopped journaling many times. My intention was to use my entries to write a book years ago. I wanted to share my ups and downs along the way . I put that book on hold and journaling as well.

You now inspired me to get back to it.:))))

Hello everyone. I am Pam DeNardo and I work for the COPD Information Line and also work with Tracie and Jamie with Grassroots Advocacy. I was diagnosed with COPD in 1999 and have been speaking out since 2001. Mostly because a friend I met in Pulmonary Rehab told me to "turn that anger into advocacy" It worked and I tell others that all the time. It is gratifying and gets your mind off yourself.

I am originally from Chicago but call Fort Myers, FL "home" now. My favorite place is a blanket, some snacks and a book on the beach. One of the reasons I chose Florida to retire. Chicago winters cured me of snow, cold and wind.

I am also frequently on COPD360 and recognize some names on here. I am just learning of Bronch/MTN so am pleased this website is here. Best way to really learn is to go to the COPD Foundation's websites. Hope everyone has a great week!

Hello Everyone,

My name is Linda Mullin and I work for VCC Systems in doing the COPD Foundation Information Line. Being a patient and caregiver myself, have brought home the importance of helping others learn more through education and knowledge about our lung diseases.

Reaching out via my support group and state advocacy is utmost. It's vital to me, to let people know: "They are never alone, in this fight for breath!"

Hello Everyone,

My name is Karen Anzalone and I work for the COPD Information Line. I was a primary caregiver for my Dad and, I'm now a caregiver for my father-in-law. I live in NY and I am the Advocacy Captain for the state of New York. I wholeheartedly believe that "advocacy is key to raising COPD awareness" and, we need more caregivers to be involved with advocacy on all levels.

Favorite things to do--Traveling w/my son to all of his swim meets. Also, sporting my team pride for the NY Jets @ Metlife Stadium every other weekend.

Interesting facts--I'm a huge fan of Doo-Wop music and Motown!

My name is Patti and I am a caregiver working for the COPD Foundation's Information Line since October, 2011. It's a joy to work with a great group of agents that seek to provide the best customer service to every caller.

I have a passion for studying biblical prophecies -- identifying different symbols in scripture and their meanings leave me amazed. I enjoy cooking vegetarian foods/desserts and studying natural herbal remedies (working with Kombucha Scoby).

After reading the information about Bronch/NTM I have a better understanding, even though I'm still learning. Knowing I can refer callers to the Bronch/NTM 360Social website where they can be educated about their illness is a huge benefit.

It's a pleasure getting to know y'all!

Hi! I am happy to get the chance to introduce myself, my name is Brandon and I have the pleasure of working on the COPD Foundation Information Line and the Bronchiectasis and NTM Information Line. I have assisted patients and caregivers for close to 4 years with working on our Information Lines, and before that, I worked as a medical assistant as well as working in home health care and hospice.

I have been a caregiver for a parent with COPD and Alpha-1 Antitrypsin Deficiency, and I have a passion for photography and enjoy getting to spend time with my niece and nephews every chance I get. With working on the Information Line, it has given me the opportunity to help educate and offer support to members of our communities. I think it’s an understatement to say I love my job, this has been terrific having the chance to connect with and help patients and caregivers learn more about their lung health, and at times being a caring voice when members of our community reach out to us.

I can understand the feelings of isolation with a chronic disease, and truly hope we can help ease that with our online community here and through the Foundation’s Information Lines. I am grateful for the chance to meet such incredible people with our online communities, so many thanks to you!

Hi, My name is Claudya and I have worked on the COPD Foundation's information Line since June of 2015. Love being able to talk with other COPDers and be of service to them when I can. I've had the opportunity to chat with Patients suffering form Bronchietasis and or NTM, and have referred them to this site. Having a support group to help you is such a good thing.

I have had COPD since 2000 and am on oxygen ...I was a heavy smoker for years, I should have known better as my Mother passed away form COPD some 45 years ago.

I love to cook, and spend time with my Grandchildren . Thank God for them, they keep me on my toes, they are a great source of love. I have two of them here in Idaho, and two more in Quito, Ecuador...Another blessing is all the new technology today, thanks to that I can " face time " them and keep up with what they are up to. The altitude in Quito is very high, so I can't go there anymore (can't breath). They assure me that its no problem, as they love to come to the USA to shop anyway..

Take care and stay well

Hello everyone. My name is Made Pramana. I'm from Bali, Indonesia. I was diagnosed with Bronchiectasis on March 2014. I probably joined COPD360Social on September 2015. I am currently studying and doing my clerkship (clinical rotation) in hospital.

The exercise that I like to do is walking and do yoga. I am open in learning any kind of exercise.

I like to be involved in environmental activities. I joined mangrove conservation back in 2015. It was a good experience.

Happy to be here. Nice to meet you.

Hello all! My name is Anissa Lewis. I am fortunate to be able to work on the COPD Foundation Information Line as a patient associate. I have COPD and Alpha One Antitrypsin Deficiency so my COPD story literally began at birth. As a child most of my adult family members smoked (I have a picture of my grandpa leaning over me with a cigarette in his mouth while he fed me birthday cake on my first birthday!) So, of course, I started smoking at the age of 13. I began having breathing difficulty in 2008 (age 36) and was told I had a cardiac condition (which I did) but the doctors left it at that. It was not discovered that I had COPD & Alpha One until I saw a pulmonologist (familiar with Alpha One) three years later. By that time, I had already lost considerable lung function.

Everyone has their own burdens to bear so I try not to dwell on my own difficulties. I have endured much BUT have also overcome much. People who know me have said that I am "tough" and "show grit and determination" (among other things... lol!) I don't know about all that but I do know that my life has been changed and I am very grateful for all the difficulties I have endured because they have made me who I am today.

I am very glad to have this community and the resources on the Bronchiectasis and NTM Initiative page to learn more about it. It's very nice to meet everyone. Happy to be here! :D

Hi everyone! I'm just another COPD/NTM patient and I have no idea how I got either of those. I live in Wisconsin and work from home both writing and developing online training courses for a variety of corporate clients.

I despise grocery shopping, but I love to bake in the winter, and I rarely follow a recipe as written. I have always been interested in biology and medicine and originally wanted to be a veterinarian before discovering in college that I am terrible at memorizing! :)

Hello!My name is Katie Keating. I am a nurse, a patient and a patient advocate. I have been involved with NTM Info and Research since its infancy stages in 2002. I was a member of the NYC support group from 2002 until 2015 when I moved to PGH.

nd Street library in NYC to research via microfiche articles on NTM since there were so few published on line at that time.I had never heard of NTM, was very sick at the time and desperate to find answers.I went for many consultations at different hospitals in the NJ/NY/PA areas in attempts to find a cure. I have been a patient at both National Jewish in Denver and NIH in Maryland.

I have attended almost every NTM conference since 2002; lobbied in Washington starting back in 2006 and other have been involved with other efforts involving the FDA.

I am so passionate about educating others on NTM since it took years of trial, error, discussions with other members of the NYC support group to figure out answers to many questions we shared and pieces of this puzzle. I desire to provide you with knowledge which will improve your QOL now and not have to wait for years to figure out things which many of us had to do.

Lessening your frustrations by getting the right information is one of my goals.

I may post items which you may question why I would be posting such information.However, over time new patients will realize the importance of such posts.Every patient has to be viewed biopsychosocially since this disorder impacts so much more than our lungs in our chest.

Please post questions at any time.If I do not know the answer, I will research or forward to the team to research.I truly know how challenging this chronic disorder can be.I hope that you will get more engaged on this site over time. I want you to sense an ongoing feeling of community support- we are here for you.

Delia,

Thank you so much for your kind words. I am passionate about assisting others on this journey. Have a pleasant weekend.

Merry,

Yes, your career sounds very interesting, diversified.

I hope that you are feeling ok. We share commonalities re: our NTM timeframe-@40 y.o.....

Have a pleasant weekend.

Hi All,

My name is Tracie, and I work at the COPD Foundation in the DC office on grassroots advocacy, and engage with our volunteers! Favorite place is a tough one, I love being outdoors, and any chance I get to hike, and camp I am there :) This year I visited Yellowstone National Park and it was so beautiful, although I think my favorite place would be my parents house in New Hampshire, because it brings back a lot of great family memories!

Some of my hobbies include biking, dogs (I am pretty obsessed with my beagle and doodle), reading, hiking, swimming, and museums! I love learning and am always looking for new ways to challenge myself!

So nice to meet you all virtually :)

I am a retired 8th grade English teacher (40 years of teaching in private girls’ school) who was diagnosed with bronchiecstasis after coughing up blood two years ago. I live with my 87-year-old husband in a house we bought in 1972 in Rockville, MD. He had a stroke this year and is relearning to walk. His mind is usually ok, but he does have some occasional delusions. I’m thankful they’re harmless ones. Now he requires 24/7 care that is costing us a fortune, but I doubt I’m well-enough myself to care for him myself, even at night since he gets up for the bathroom and tries to walk without his walker putting him in danger of falling. I would lose some sleep if I took the night-duty, and I see to need my sleep more then ever.

The brochiestasis has caused me to give up, at least for now, something that has meant a lot to me over the last six years, and that is my twice a year trips to Honduras with Hope for Honduran Children, an organization run by my close friend, unaffiliiated with any religion or other charitable orgaization. I have about 15 “adopted” grandsons there who say they pray for me every day, miss me, and love me. I desperately want to get back there, and not just to help them and be their “Abuela,” but because I feel so loved there.

I also enjoy and need the intellectual stimulation I get from taking classes at the Osher Lifetime Learning facility, that is part of American University in Washington, D.C. We call it OLLI for short. The other participants are smart and interesting, so I enjoy our discussions.I also love learning new things. I am not a very good speaker of Spanish, so that is usually one of the classes I take. I also enjoy the literature classes there as well as the writing practice.

I would love to meet others with similar diagnoses to share hints on how to live with this illness, as well as to support one another. I would also enjoy going to restaurants, movies, and concerts, etc. with similarly afflicted individuals.

Emee,

Hello! Welcome to the site. I hope that you get to connect with other members who reside in the Rockville area so that you may meet face to face.

Did you check out the NTM Information and Research site to see if there are support groups in your area?

There are approximately 103 questions posted on this site thus far for you to review. Let us know if you have other specific questions.

Kati

Hi, I'm Bridget. I tried to post on here 2 years ago but something was wrong so I gave up. I decided to try it again.

My pulmonologist recommended I join this group. I work with a group of people that get together most every year (not this year of course) for a meet and greet. Last year, my pulmonologist was so kind to come do a question and answer to the whole group. He used his Saturday to do this and we all gained insight in the Bronchiectasis world.

I was diagnosed with Bronchiectasis when I was looking for help for an NTM infection. I was able to get into a study drug program but had to drop out due to an exacerbation. I went home from the hospital on oxygen. After six more months of trying to treat the NTM I was told I needed to go to National Jewish in Denver, CO.

To make along story short, I had ARDS in 1999, and had to learn to walk again because I was on a paralytic drug for 6-7 weeks. We think this is when I developed the NTM. It went untreated until 2012 so the NTM had time to do some real damage to my lungs. Nat'l Jewish had to remove my upper left lobe but I have been infection free since 2014.

I like to help others understand their disease and how to treat it. The reason I went untreated for 13 years is because doctors did not know what was wrong with me and treated me for various things. I knew nobody who had what I had and I felt alone. I lived alone and had to deal with my condition myself.

I don't want anyone to go through this alone anymore.

Thank you for listening to me.

Bridget,

Hello! Welcome back to the site. I am so happy that you attempted to learn to navigate the site again.

I am sorry to read of the challenges that you have been through. You can make a difference in the lives of others by logging in on a regular basis and letting others read that you finally got the help you needed. I also felt all alone when first diagnosed,18 years ago. This venue and the web has changed things dramatically since then.

I look forward to reading your posts again. Have a pleasant evening.:) Katie