Hello! Cases vary from individual to individual. I have seen some abscessus patients do ok over time; others with multiple antibiotics over the long term haul.

I was also 39 when symptoms started.... Do not believe everything you read online since mostly the worse case scenarios have been published.

Is there a support group in your area?

Is it please for you to attend the bronchiectasis/Ntm conference in DC on July 14th?

Hi Ksmiles123, I sent a private message as well. Your reply means so much right now. We want to believe that everything can be OK. I would like to hear more about what "OK" looks like, vs. the worse case scenarios that I've been reading too much on. We have two small children and it's just devastating to think what this disease may do to my wife, and impact on our children. Thanks.

rplaset, sorry to hear about your wife's diagnosis. I would imagine that this is a scary time for your family, but know that you are not alone. If you have any specific questions or are looking for specific information that you haven't been able to find, feel free to post your questions on the Questions/Answers page for maximum exposure. There are several resources here and on the NTM Info & Research website (linked below) that you may find useful. We'll be thinking of your family - please keep us posted.

https://www.ntminfo.org/

Just asking also has your wife had the Alpha 1 blood test? I will post some info for anyone interested in testing. Everyone with a lung disease should have this Alpha 1 test.

https://www.geneticcopdtest.com/en/order-free-alph...

Hello! A few patients had minimal symptoms for a decade or more. Others are have been on multiple ongoing antibiotics and have had greater challenges. Again, it varies greatly amongst patients.

Follow up care and taking every possible preventative measure is so important.

I also had a 1 year old when I was diagnosed. I know how terribly frightening this can be for you and your family.

We are here for you to educate and support you in this journey.

Please review the Insight Manaul on the NTM Info&Research website. Many articles and videos are also posted on that site.

Let us know if you have specific questions after reviewing these materials

Hi rplaset.

There is little doubt that the journey you find yourselves on has a lot of confusion and negativity surrounding it. In a nutshell, it’s a rollercoaster ride. With confusion over what’s best and what’s not, where treatment and reinfection are concerned. The very word “ Abscessus” is enough to make you cringe let’s face it. I am a lot older than your lovely wife. I was 57, now 59 when I was told I had Bronchiectasis and Abscessus in the same mouthful. My world came crashing down. Like you, I turned to the net for information. Like others before have said. You dont the hear too many positive stories. There are many out there though, keep searching. I had 8 months of treatment last year. 20 weeks of IV meds including. Imipenin,amikacin,tigecycline and a oral drug, clofazimine. For the last 3 months I used LAI. I’ve had 2 bronchoscopies and am culture negative to both. Unfortunately radiologically I remain unchanged. That’s ok though, for me it’s about feeling better and staying that way. So there’s one positive story for you. I can only imagine how difficult this is not only for your wife, but yourself as well with young children. There is a lot of information out there. Gather it,sift through it, the good and the bad, absorb it. This is a great forum, with many willing to help at anytime. As hard as this is try not to let it overwhelm you. We can’t change it, but we can change how we deal with it. I wish you and your wife and family all the best and hope in some tiny way this may have helped you.

Lea

Lea,

Yes, so well put into words. We cannot change what has happened, but how we deal with it is if essence.

We can continue to educate and support one another on this journey

I was diagnosed with NTM/ Absessus 1 year ago. It was discovered when I had a CT scan after a minor car accident. I have almost no symptoms. I am using an Aerobika to keep my airways clear. This really helps. After reading about NTM I decided to go to a center that sees a lot of NTM. I went to National Jewish Health In Denver. I received a lot of education on how to live with the disease. I feel like I am being handled by docs with great expertise. I have been told that surgery may be an option for me to remove the lobe of my lung which is non functioning. They said that removing it can limit the spread of the disease and give me a better chance. When I first read about the medicines that are taken in conjunction with the surgery, I was afraid. My doctors assured me that they are very vigilant and that they will monitor side effects. I am more positive about having surgery than I was in the beginning. I am a nurse practitioner and my husband reminds me to trust the doctors who have been doing this for 30 years so I am trying to do that.

I have not taken any treatments yet and my doc is monitoring me closely with sputums and CTs.

Lindy,

You are in very good hands. Glad that you are asymptomatic thus far.

There is little published about the outcomes of surgeries to date.

Are you able to attend the conference in DC

Rplaset,

Hello! I am so glad to read that you have a plan in place. Knowledge, knowing the steps needed to be taken lessen the angst when dealing with a new diagnosis.

I am so glad that your wife was diagnosed early. In the interim, Please ask any questions which we may be able to assist you with.

Wishing you the very, very best!

Kati

Rplaset,

Hello! I am so glad to read that you have a plan in place. Knowledge, knowing the steps needed to be taken lessen the angst when dealing with a new diagnosis.

I am so glad that your wife was diagnosed early. In the interim, Please ask any questions which we may be able to assist you with.

Wishing you the very, very best!

Kati

Rplaset,

Hello! I am so glad to read that you have a plan in place. Knowledge, knowing the steps needed to be taken will lessen the angst associated with dealing with a new diagnosis.

I am so glad that your wife was diagnosed early. In the interim, please ask any questions which we may be able to assist you with.

Wishing you the very, very best!

Katie

raplaset,

You asked for positive stories to counterbalance all the bad ones. Here's mine.

I am 68 and was diagnosed with bronchiectasis a year ago along with a positive test for mycobacterium abscessus after a bronchoscopy. Testing showed my abscessus is resistant to all oral antibiotics.

Even though I only recently got diagnosed, I've had coughing issues going back to my 30s. For years my cough was believed to be allergies or cough variant asthma. In my 60s, my coughing became much worse causing me to seek additional medical treatment. Only after getting a chest X-Ray did I get referred to a pulmonologist who did a CT-Scan and bronchoscopy which produced my diagnosis.

I've been lucky as I only had occasional coughing bouts until I reached my early 60s. Also, my mild bronchiectasis is dry which means I don't have to do all the airway clearance procedures needed to keep mucus manageable (but it does mean I can't produce a sputum sample). My dry bronchiectasis also means I have not experienced the frequent lung infections that others mention.

My current symptoms are coughing, shortness of breath, and occasional fatigue. My current treatment is Asmanex and Benzonatate which have controlled my cough symptoms so that I only use Albuterol (rescue inhaler) 2-3 times a week. I use nasal saline to reduce mucus draining down my throat. I sleep on my side and wear a sweatshirt over my night clothes to keep my chest warm which seems to reduce night coughing. I also stay up-to-date on all vaccinations.

Because of my concerns about radiation, I've resisted follow-up CT-Scans and my pulmonologist is okay with that as long as I'm feeling good. My pulmonologist and I revisit doing a CT-Scan every 6 months in case things change.

Hello ! Welcome to the site! Thank you for sharing your story. So glad that it is a positive one- that you are able to manage your symptoms well.

positive story....i was diagnosed with abscessus in 2004. I have been managing it with IV, inhaled and oral antibiotics. (IVs the entire time). I just came off of a 3 year “drug holiday“ and started the drugs again. in my case stable is the goal and as long as it’s stable life is good. just wanted to say that long term management doesn’t have to control your life......i’ve travelled around the world hauling all my meds (IVs included) and never missed out. there is a learning curve but you figure out work arounds. there were some rough times but they passed. i’m thankful to have a treatment that, to date, keeps me stable.

Rplaset,

Hello! Thank you for the update. I am so glad to read that your wife is tolerating the medications.

Yes, the time factor of a year may sound very long; however , you are in great hands with DrA and the one year will pass by .

Many of us were who on two years of medications and never thought we would get through it. However, time did pass by, we got through it and are doing much better.

Preventive measures will need be in place going forward.

Support, education, encouragement are so important during this time period. I wish you and your family the very, very best.

Hi there! I was diagnosed with Bronchiectasis and MAC in April. I am a wellness coach and now have a very important client—-me!! One of my biggest challenges is not getting down. I handle this with a combination of walking with intermittent jogging, Pilates, yoga, dancing, weight training, meditating and an energy practice called Jin Shin Jyutsu. I try to keep active and if I’m not feeling well, I just tell myself “ do something “. Sometimes I just put on Michael Jackson ( yup- I’m in my 60s :)) and take a walk. Well, actually I dance a bit while walking but I live in New York City so anything goes. Fresh air and getting out of my tiny NYC apartment often are the answer.

I hope this helps. I know there are people who don’t feel well and find exercise difficult. Especially if it is not something they have done in the past. My suggestion is to think of it as movement- ope your chest and back and focus on your breath. And, why not a little disco or rap or country to make it fun?

Macfit,

Hello! Thank you for your honesty and inspiration. Yes, I think that many of us experience “ down days” when we are physically unable to accomplish what our minds would like to do.

I agree that exercise really helps both mentally and physically.

You made me chuckle with your music selection; I feel the same way re: inspirational music. I put on the Ultimate Party Survival CD last week just to assist me with necessary activities. Other inspirational music includes Rocky, Louie Armstrong- It’s a Wonderful World , Gloria Gainor-“ I Will Survive”, plus her other inspirational songs , such as “ Right on Time”. The list goes on...

We must all share and inspire one another to make the best of each and every day.😀

Macfit,

You are welcome! Yes, Aretha’s music is very inspirational. I hope that you are doing ok. We all can benefit from regular health coaching Enjoy your weekend!

Macfit,

Yes, clearing our airways- even when we are not up to it is key.

Pushing ourselves to exercise regularly is of upmost importance for clearance and our emotional health.

Thank you for the reminder. There are days when we are not up to being compliant since we are not feeling up to par.

We all need to be reminded , encouraged and to remain compliant.

I have great news to share! My wife’s 2-month CT showed market improvement today! 75% of the bronchiectasis resolved, including the cavity. She’s only got mild disease left at this time. It looks like the meds are working! So far, sputum is negative too.

This is such a relief. We know we’re not out of the woods yet, but after fearing the worst with M. Abscessus, we are finally feeling hopeful that she has a chance to beat it

Hello! Yahoo!!! I am soo happy to read that your wife is doing well after a short period of treatment!! This news made my day brighter! Treatment outcomes vary from patient to patient

Hi, my name is Nancy Soucy and I am leader of the ECFL NTM Support group in Florida. I myself was dx with Abscessus in 2003 when I was in my mid 40s. Such a scary time. I had to find a dr who even knew anything NTM and still was not treated correctly. I admitted myself to National Jewish Hospital in Denver and started a journey of dealing with NTM in my life. We got on the correct antibiotics and my healing began. It took two years of treatments to get clear. I tolerated the drugs very well and continued to live my life normally including playing golf with a PICC line in my arm for two years! I really belive a good positive outlook goes a long way. I found over the years of dealing with this disease, several things helped me greatly. Forging ahead with positive mindset. Keeping all followup appts with dr. Exercise! even if it’s just a walk around the block everyday. ask your dr about airway clearance, like the Vest or Acapella which have helped me keep my lungs in better shape. Consider enrolling in a clinical study. I have been in a few studies and continue to this day. My NTM disease has gone into “remission” quite a few times and becomes active. I have been on many different treatment plans over the years including lung resection. I am one of those that keep getting new infections. I forge on. i am blessed to have the ability to enjoy life and family and friends despite this disease. You can too! Stand strong and keep the faith!

I've had Bronchiectasis for about 3 yrs. now, struggling with non-productive coughing, most recent CT Scan showed quite a bit of blockage rt. lung and swollen lymph gland center where lung divides. (I'm fortunate in that a small adenocarcinoma was discovered and I had a lobectomy of lower rt. lung in 2013 at age 69 with no ca repeat or growth - Thank God.)
Too soon for any test results from yesterday's procedure, but I can say that I'm feeling 100% better in re: coughing/breathing - not a pleasant initial response yesterday, but MUCH better today. I would hope for your wife to have little symptoms and excellent care!

I've had Bronchiectasis for about 3 yrs. now, struggling with non-productive coughing, most recent CT Scan showed quite a bit of blockage rt. lung and swollen lymph gland center where lung divides. (I'm fortunate in that a small adenocarcinoma was discovered and I had a lobectomy of lower rt. lung in 2013 at age 69 with no ca repeat or growth - Thank God.)
Too soon for any test results from yesterday's procedure, but I can say that I'm feeling 100% better in re: coughing/breathing - not a pleasant initial response yesterday, but MUCH better today. I would hope for your wife to have little symptoms and excellent care!

I've had Bronchiectasis for about 3 yrs. now, struggling with non-productive coughing, most recent CT Scan showed quite a bit of blockage rt. lung and swollen lymph gland center where lung divides. (I'm fortunate in that a small adenocarcinoma was discovered and I had a lobectomy of lower rt. lung in 2013 at age 69 with no ca repeat or growth - Thank God.)
Too soon for any test results from yesterday's procedure, but I can say that I'm feeling 100% better in re: coughing/breathing - not a pleasant initial response yesterday, but MUCH better today. I would hope for your wife to have little symptoms and excellent care!

I've had Bronchiectasis for about 3 yrs. now, struggling with non-productive coughing, most recent CT Scan showed quite a bit of blockage rt. lung and swollen lymph gland center where lung divides. (I'm fortunate in that a small adenocarcinoma was discovered and I had a lobectomy of lower rt. lung in 2013 at age 69 with no ca repeat or growth - Thank God.)
Too soon for any test results from yesterday's procedure, but I can say that I'm feeling 100% better in re: coughing/breathing - not a pleasant initial response yesterday, but MUCH better today. I would hope for your wife to have little symptoms and excellent care!

I've had Bronchiectasis for about 3 yrs. now, struggling with non-productive coughing, most recent CT Scan showed quite a bit of blockage rt. lung and swollen lymph gland center where lung divides. (I'm fortunate in that a small adenocarcinoma was discovered and I had a lobectomy of lower rt. lung in 2013 at age 69 with no ca repeat or growth - Thank God.)
Too soon for any test results from yesterday's procedure, but I can say that I'm feeling 100% better in re: coughing/breathing - not a pleasant initial response yesterday, but MUCH better today. I would hope for your wife to have little symptoms and excellent care!

I've had Bronchiectasis for about 3 yrs. now, struggling with non-productive coughing, most recent CT Scan showed quite a bit of blockage rt. lung and swollen lymph gland center where lung divides. (I'm fortunate in that a small adenocarcinoma was discovered and I had a lobectomy of lower rt. lung in 2013 at age 69 with no ca repeat or growth - Thank God.)
Too soon for any test results from yesterday's procedure, but I can say that I'm feeling 100% better in re: coughing/breathing - not a pleasant initial response yesterday, but MUCH better today. I would hope for your wife to have little symptoms and excellent care!

I've had Bronchiectasis for about 3 yrs. now, struggling with non-productive coughing, most recent CT Scan showed quite a bit of blockage rt. lung and swollen lymph gland center where lung divides. (I'm fortunate in that a small adenocarcinoma was discovered and I had a lobectomy of lower rt. lung in 2013 at age 69 with no ca repeat or growth - Thank God.)
Too soon for any test results from yesterday's procedure, but I can say that I'm feeling 100% better in re: coughing/breathing - not a pleasant initial response yesterday, but MUCH better today. I would hope for your wife to have little symptoms and excellent care!

I've had Bronchiectasis for about 3 yrs. now, struggling with non-productive coughing, most recent CT Scan showed quite a bit of blockage rt. lung and swollen lymph gland center where lung divides. (I'm fortunate in that a small adenocarcinoma was discovered and I had a lobectomy of lower rt. lung in 2013 at age 69 with no ca repeat or growth - Thank God.)
Too soon for any test results from yesterday's procedure, but I can say that I'm feeling 100% better in re: coughing/breathing - not a pleasant initial response yesterday, but MUCH better today. I would hope for your wife to have little symptoms and excellent care!

I've had Bronchiectasis for about 3 yrs. now, struggling with non-productive coughing, most recent CT Scan showed quite a bit of blockage rt. lung and swollen lymph gland center where lung divides. (I'm fortunate in that a small adenocarcinoma was discovered and I had a lobectomy of lower rt. lung in 2013 at age 69 with no ca repeat or growth - Thank God.)
Too soon for any test results from yesterday's procedure, but I can say that I'm feeling 100% better in re: coughing/breathing - not a pleasant initial response yesterday, but MUCH better today. I would hope for your wife to have little symptoms and excellent care!

I've had Bronchiectasis for about 3 yrs. now, struggling with non-productive coughing, most recent CT Scan showed quite a bit of blockage rt. lung and swollen lymph gland center where lung divides. (I'm fortunate in that a small adenocarcinoma was discovered and I had a lobectomy of lower rt. lung in 2013 at age 69 with no ca repeat or growth - Thank God.)
Too soon for any test results from yesterday's procedure, but I can say that I'm feeling 100% better in re: coughing/breathing - not a pleasant initial response yesterday, but MUCH better today. I would hope for your wife to have little symptoms and excellent care!

I've had Bronchiectasis for about 3 yrs. now, struggling with non-productive coughing, most recent CT Scan showed quite a bit of blockage rt. lung and swollen lymph gland center where lung divides. (I'm fortunate in that a small adenocarcinoma was discovered and I had a lobectomy of lower rt. lung in 2013 at age 69 with no ca repeat or growth - Thank God.)
Too soon for any test results from yesterday's procedure, but I can say that I'm feeling 100% better in re: coughing/breathing - not a pleasant initial response yesterday, but MUCH better today. I would hope for your wife to have little symptoms and excellent care!

I've had Bronchiectasis for about 3 yrs. now, struggling with non-productive coughing, most recent CT Scan showed quite a bit of blockage rt. lung and swollen lymph gland center where lung divides. (I'm fortunate in that a small adenocarcinoma was discovered and I had a lobectomy of lower rt. lung in 2013 at age 69 with no ca repeat or growth - Thank God.)
Too soon for any test results from yesterday's procedure, but I can say that I'm feeling 100% better in re: coughing/breathing - not a pleasant initial response yesterday, but MUCH better today. I would hope for your wife to have little symptoms and excellent care!

I've had Bronchiectasis for about 3 yrs. now, struggling with non-productive coughing, most recent CT Scan showed quite a bit of blockage rt. lung and swollen lymph gland center where lung divides. (I'm fortunate in that a small adenocarcinoma was discovered and I had a lobectomy of lower rt. lung in 2013 at age 69 with no ca repeat or growth - Thank God.)
Too soon for any test results from yesterday's procedure, but I can say that I'm feeling 100% better in re: coughing/breathing - not a pleasant initial response yesterday, but MUCH better today. I would hope for your wife to have little symptoms and excellent care!

I've had Bronchiectasis for about 3 yrs. now, struggling with non-productive coughing, most recent CT Scan showed quite a bit of blockage rt. lung and swollen lymph gland center where lung divides. (I'm fortunate in that a small adenocarcinoma was discovered and I had a lobectomy of lower rt. lung in 2013 at age 69 with no ca repeat or growth - Thank God.)
Too soon for any test results from yesterday's procedure, but I can say that I'm feeling 100% better in re: coughing/breathing - not a pleasant initial response yesterday, but MUCH better today. I would hope for your wife to have little symptoms and excellent care!

I've had Bronchiectasis for about 3 yrs. now, struggling with non-productive coughing, most recent CT Scan showed quite a bit of blockage rt. lung and swollen lymph gland center where lung divides. (I'm fortunate in that a small adenocarcinoma was discovered and I had a lobectomy of lower rt. lung in 2013 at age 69 with no ca repeat or growth - Thank God.)
Too soon for any test results from yesterday's procedure, but I can say that I'm feeling 100% better in re: coughing/breathing - not a pleasant initial response yesterday, but MUCH better today. I would hope for your wife to have little symptoms and excellent care!

I've had Bronchiectasis for about 3 yrs. now, struggling with non-productive coughing, most recent CT Scan showed quite a bit of blockage rt. lung and swollen lymph gland center where lung divides. (I'm fortunate in that a small adenocarcinoma was discovered and I had a lobectomy of lower rt. lung in 2013 at age 69 with no ca repeat or growth - Thank God.)
Too soon for any test results from yesterday's procedure, but I can say that I'm feeling 100% better in re: coughing/breathing - not a pleasant initial response yesterday, but MUCH better today. I would hope for your wife to have little symptoms and excellent care!

I've had Bronchiectasis for about 3 yrs. now, struggling with non-productive coughing, most recent CT Scan showed quite a bit of blockage rt. lung and swollen lymph gland center where lung divides. (I'm fortunate in that a small adenocarcinoma was discovered and I had a lobectomy of lower rt. lung in 2013 at age 69 with no ca repeat or growth - Thank God.)
Too soon for any test results from yesterday's procedure, but I can say that I'm feeling 100% better in re: coughing/breathing - not a pleasant initial response yesterday, but MUCH better today. I would hope for your wife to have little symptoms and excellent care!

I've had Bronchiectasis for about 3 yrs. now, struggling with non-productive coughing, most recent CT Scan showed quite a bit of blockage rt. lung and swollen lymph gland center where lung divides. (I'm fortunate in that a small adenocarcinoma was discovered and I had a lobectomy of lower rt. lung in 2013 at age 69 with no ca repeat or growth - Thank God.)
Too soon for any test results from yesterday's procedure, but I can say that I'm feeling 100% better in re: coughing/breathing - not a pleasant initial response yesterday, but MUCH better today. I would hope for your wife to have little symptoms and excellent care!

I've had Bronchiectasis for about 3 yrs. now, struggling with non-productive coughing, most recent CT Scan showed quite a bit of blockage rt. lung and swollen lymph gland center where lung divides. (I'm fortunate in that a small adenocarcinoma was discovered and I had a lobectomy of lower rt. lung in 2013 at age 69 with no ca repeat or growth - Thank God.)
Too soon for any test results from yesterday's procedure, but I can say that I'm feeling 100% better in re: coughing/breathing - not a pleasant initial response yesterday, but MUCH better today. I would hope for your wife to have little symptoms and excellent care!

I've had Bronchiectasis for about 3 yrs. now, struggling with non-productive coughing, most recent CT Scan showed quite a bit of blockage rt. lung and swollen lymph gland center where lung divides. (I'm fortunate in that a small adenocarcinoma was discovered and I had a lobectomy of lower rt. lung in 2013 at age 69 with no ca repeat or growth - Thank God.)
Too soon for any test results from yesterday's procedure, but I can say that I'm feeling 100% better in re: coughing/breathing - not a pleasant initial response yesterday, but MUCH better today. I would hope for your wife to have little symptoms and excellent care!

I've had Bronchiectasis for about 3 yrs. now, struggling with non-productive coughing, most recent CT Scan showed quite a bit of blockage rt. lung and swollen lymph gland center where lung divides. (I'm fortunate in that a small adenocarcinoma was discovered and I had a lobectomy of lower rt. lung in 2013 at age 69 with no ca repeat or growth - Thank God.)
Too soon for any test results from yesterday's procedure, but I can say that I'm feeling 100% better in re: coughing/breathing - not a pleasant initial response yesterday, but MUCH better today. I would hope for your wife to have little symptoms and excellent care!

I've had Bronchiectasis for about 3 yrs. now, struggling with non-productive coughing, most recent CT Scan showed quite a bit of blockage rt. lung and swollen lymph gland center where lung divides. (I'm fortunate in that a small adenocarcinoma was discovered and I had a lobectomy of lower rt. lung in 2013 at age 69 with no ca repeat or growth - Thank God.)
Too soon for any test results from yesterday's procedure, but I can say that I'm feeling 100% better in re: coughing/breathing - not a pleasant initial response yesterday, but MUCH better today. I would hope for your wife to have little symptoms and excellent care!

I've had Bronchiectasis for about 3 yrs. now, struggling with non-productive coughing, most recent CT Scan showed quite a bit of blockage rt. lung and swollen lymph gland center where lung divides. (I'm fortunate in that a small adenocarcinoma was discovered and I had a lobectomy of lower rt. lung in 2013 at age 69 with no ca repeat or growth - Thank God.)
Too soon for any test results from yesterday's procedure, but I can say that I'm feeling 100% better in re: coughing/breathing - not a pleasant initial response yesterday, but MUCH better today. I would hope for your wife to have little symptoms and excellent care!