(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

@irene5 Thanks Irene, now that you say cystic fibrosis I am sure that is what this child had. It's all vague to me but I remember what they had to do and it just really hit me. I am so fortunate that my two never had health problems unless you consider ADD and ADHD to be health problems. They both had to deal with that.
JK

Yes, cystic fibrosis is sad for a child to deal with since it doesn't go away. On another note ADD and ADHD isn't easy either. I wrote a thirty page paper on that when I was doing my Masters in education. One of our ten has it. He was like six all rolled up into one - I used to tell my husband " one of us is leaving, and it's not me!" As an adult he is a wonderful husband and father (of seven) and head of special ed in a Connecticut school system. And I thank the good God every day for his sweet wife!

@irene5 It was difficult at times. My son had the typical impulsiveness and that was tough. He struggled in school despite being above average in intelligence. My husband was very opposed to medication so he never was on anything until his junior year in HS! At that point he himself was amazed. He told me he could never learn in class and had to try to at home in the evening but now he could pay attention and was able to learn. He went off the meds in college and once again struggled. I suspect he ceased them because he was drinking a bit and he is very cautious about that type of thing. We knew if we could push, pull, shove him through college he would do well and he is how a VP of a staffing firm.
My daughter is very bright and in school learned to compensate somewhat but still did not get the grades she should have gotten. She constantly walked out of places leaving clothes, her purse, and whatever behind. Her head was in the clouds which I understand is pretty typical for girls with ADD. She too is doing well now though, thankfully.
So many people think ADD is just something fake to make excuses but I knew it was not. I myself did not get the grades in HS and college that I should have, I used to fall asleep in lecture halls, but back then they said I was lazy or an underachiever which of course made me feel very inadequate.
JK

So glad things turned out well. School is a difficult environment for ADD/ADHD children. The good God blessed me with my son so I would be a better teacher for those "special" friends.

@mariposa .. Andree, Welcome! So glad you found us .. you are in the right place! BUT I am absolutely shocked beyond disbelief .. what has happened to you has to be considered malpractice! If you spend some time reading the past pages of our Main Forum you will find that UNFORTUNATELY MANY of our members have had poor medical care .. some have had wonderful care .. BUT you will learn that YOU must be your OWN best advocate! That "Knowledge is Power" .. and that YOU must take charge of your health care. That NO ONE else is going to care as much about your body as you do .. so read and LEARN!! Since you are in such a tough situation .. right now .. I have attempted to answer as many of your concerns as I can .. please feel free to come back with any further questions you have after reading past pages .. we will be here for you in this tough time. Sending you a hug! Katherine
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Some thoughts: you said " Respiratory specialist who gave me a prescription to analyze my sputum, unfortunately I can no longer bring even a tiny amount for a test." Andree, when this happens you can request what is called a Bronchoscopy. After what you have been through .. I would ABSOLUTELY request this WITH "MYCOBACTERIUM SUSCEPTIBILITY PANEL TESTING" to make DARN sure your doctor prescribes the proper antibiotics that WILL work against the mycobacterium you are diagnosed with!

From My File Cabinet:
BRONCHOSCOPY .. BRONCH WASHINGS EXPLAINATION: The significance of bronchoscopy for the diagnosis of Mycobacterium avium complex (MAC) pulmonary disease. https://www.ncbi.nlm.nih.gov/pubmed/11402614

From Member windwalker, Terri Bronch Washings are done by a procedure called a 'bronchioscope'. You will be sedated, hopefully with a twilight anesthesia, a tube inserted down your throat and into your lungs. The Dr will squirt a small amount of saline into the lungs. They remove the liquid and send it to a lab. The liquid they bring up from your lungs contains all kinds of info. They will lab test it for various organisms, inflammation cells, and other abnormal things. They may snip a tiny piece of your lung while down there to biopsy it. They did mine that way.

ANTIBIOTIC .. MYCOBACTERIUM SUSCEPTIBILITY PANEL TESTING *testing and therefore should provide—or should ensure—access to susceptibility testing of MTBC against the full panel of primary antituberculous drugs, as well as against secondary drugs, when indicated. * Currently, universally accepted guidelines concerning the indications for susceptibility testing of MAC do not exist. However, investigators who have extensive experience with MAC have recommended that the following isolates be tested

Susceptibility Testing for Mycobacteria http://www.mayomedicallaboratories.com/interpretive-guide/?alpha=A&unit_code=34805 http://cid.oxfordjournals.org/content/31/5/1209.full http://www.mmmig.nl/static/filebank/d073522b5602729078139d641a4cf987/antimicrobial-susceptibility-testing-drug-resistance-mechanisms-and-therapy-of-infections-with-nontuberculous-mycobacteria.pdf

SOME GOOD RESOURCES ON BRONCHIECTASIS:
BRONCHIETASIS-SYMPTOMS OF Symptoms of bronchiectasis http://www.nhs.uk/Conditions/Bronchiectasis/Pages/Symptoms.aspx
BRONCHIETASIS-BREATHING VIDEO WONDERFUL INFO FROM M.D. Dr. William Girard of University of Texas Health
https://www.youtube.com/watch?v=bOFfckWv7Js
AND GOOD RESOURCES
https://www.chss.org.uk/documents/2013/08/c4_bronchiectasis-pdf.pdf http://bronchiectasis.com.au/bronchiectasis

You said " he is mentioning previous hemoptysis which I have no idea what that is. I will have to check Dr Google!"
From my File Cabinet:
BLOOD/BLEEDING- BRONCHIECTASIS Coughing up of blood (hemoptysis) is common because the damaged airway walls are fragile and have increased numbers of blood vessels. Hemoptysis may be the first or only symptom of Bronchiectasis. you said "I noticed a blood in my sputum I got alarmed again" .. I can only tell you .. the first time I spoke with my Mayo doctor about coughing up blood .. he REALLY did not react much at all .. his response "What was the quantity .. a quarter cup .. a tablespoon .. a teaspoon?" Hmmm! Mine was merely at different times a blood clot perhaps the size of less than a dime .. and/or the sputum MIXED with blood .. NEVER the quantity he was speaking of! So my question to you is judge by the quantity of blood and the frequency. Then evaluate from some of the information I am going to give you below from my File Cabinet. Keep us posted .. let us know what your thoughts are after you have evaluated. Hope you find this helpful! Hugs to you! Katherine From Member @colapyrus, Jan I have also had hemoptysis (Hemoptysis is the coughing up of blood or blood-stained mucus from the bronchi, larynx, trachea, or lungs) – several times this past year. It usually lasts about 15 minutes and then stops on its own. When I was at NJH in May they said it will stop about 80% of the time on its own and 20% of the time you need some help. In my case I was told to lie on my right side (because my bronchiectasis is in my right middle lobe)

You said " very dry mouth" .. these item may or may not help you .. but
From my File Cabinet:
DRY MOUTH Due to dry mouth I use Biotene toothpaste, Dry Mouth Oral Rinse and Oral Health Xylimelts at night https://smile.amazon.com/Orahealth-Xylimelts-Mints-80-Count-Boxes/dp/B001A40M1M/ref=sr_1_2_s_it?s=hpc&ie=UTF8&qid=1484006212&sr=1-2&keywords=Oral+Health+Xylimelts

If you chose to come to Mayo Clinic: Canadian Citizen As a Canadian citizen, here are some frequently asked questions for patients from Canada, including what to bring and how Mayo would work with your provincial plan http://www.mayoclinic.org/canada/faq http://www.catie.ca/fact-sheets/infections/mycobacterium-avium-complex-mac

@contentandwell, hope all is well, what you saw is postural drainage with percussion. In nursing school we were taught to do that to patents after surgery to prevent pneumonia. There is a young couple on utube called "the frey life", she has cystic fibrosis and they document their life. She has cf bronchiectasis, we have non-cf bronciectasis. Her cf affects her other organs too so she has a lot of problems but she is so upbeat and full of life and hope and faith. They're a joy to watch and you will be hooked. Shes in the hospital alot and he is right there by her side helping. They were waiting on her lab results to find out what kind of NTM she had on top of her psuedomonis and fungal infection. She was loosing so much wait they put a feeding tub in her nose but her constant coughing wouldnt alow it to stay in. She was also meeing with a transplant team for her lungs. She is so upbeat and happy inspite of her situation. Everyone should go to utube and search for "the frey life". I have learned alot from them. Warning, you might get hooked.
Stay stong!
Becky

@irene5 My son and daughter were never diagnosed because my husband was opposed so they both did the best they could. My son had a teacher in first grade who was not like you at all. She had two very bright sons, then had two more about 7 or 8 years later. She had just come back from leave when she had my son in 1st grade. She could not deal with him at all and his confidence really took a hit. She would send "sad grams" to me almost every day with inane things like saying he spoke in the hallway! He always had more trouble on days when they had no outdoor recess.
JK

I was diagnosed at Mayo's almost 3 years ago with bronchiectasis. Would like to join the group. Please tell me where to go to do this. My doctor is Dr. Teng Moua in Rochester Thank you -- Jan Todd, Havana, Ks

I am truly sorry!

I'm Jan Todd, Havana, Ks -- and I was diagnosed at Mayo's almost three years ago with bronchiectasis. I'm 76 years old -- never smoked. Had coughed for 2 years and sat up at night because I could not lie down. Had seen 7 doctors -- many specialists -- no diagnosis -- lost a lot of weight -- thought I was going to die. My doctor is Teng Moua in Rochester and he's helped me tremendously. Would love to join the group. Initially there was MAC bacteria in sputum testing done in Rochester but after following his suggestions, there has been none show up for over a year. Crossing my fingers. Don't know why not, but I sure hope it continues. Please tell me how and where I can join this group? Thank you -- Jan