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@jula73

I am a 73-year-old female with a recent diagnosis of MAC along with a history of 34 years of severe rheumatoid arthritis. I also have osteoporosis, osteoarthritis, GERD and a neuromuscular disease called CMT (Charcot Marie Tooth Disease). I also live with scoliosis which can be one of the symptoms of CMT and for which I had corrective surgery 11 years ago. My MAC diagnosis came about a month ago. I am not on treatment yet except for an inhaler. I have been reading many of the messages posted here and am learning quite a bit. One thing I have not noticed is mention of loss of voice or raspy voice. My voice has gotten raspy in the past when I have had sinus infections. I do not believe I have sinus trouble presently but my voice has been getting worse since the beginning of this year. I am trying to drink extra fluids but I am beginning to worry about losing my voice totally. I'm looking for suggestions. I am going to be scheduled for a bronchoscopy sometimes soon. I am a former LPN who worked on a postop surgical floor, in nursing homes and for many years as an occupational health nurse.

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Replies to "I am a 73-year-old female with a recent diagnosis of MAC along with a history of..."

Hi Julia, I am 74 -year female named Andrée,I also have been diagnosed with bronchiectasis and pseudomonas around May 2016 . I only found out about 3 months ago while looking through my files since my Dr retired and the new Dr was not interested in paper work but works only on the internet.
I was given all my paperwork and discovered this report from the lung specialist. I must explain that I live in Vancouver BC and that I was seeing a clinic Dr for approximately 8 years , the lady was very busy and obviously forgot to read it or mention it to me.
I kept getting bronchitis infections from fall 2016 and was treated with ciprofloxacin 750 mg.

Since I was leaving for Florida for a length of time in January, the specialist had given me about three repeats of this prescription.
When I arrived in Florida, I had already started to have a very raspy voice and it continues to this day.
I now assume that it must be also due to the three inhalers that I now use twice a day. I also get a very dry mouth and I have to drink lots of water and juice in order to alleviate these symptoms.

I finally had to come back home to Canada earlier than I planned because the antibiotics where not doing the job.When I saw the GP on my return and explained my situation she said that I had taken way too many antibiotics and sent me on my way with nothing.
I became so sick in bed by this time with a horrible sinus infection along with more bronchitis. I was spitting and blowing my nose with secretions...so much so that I slept with my box of Kleenex in the bed.
I started to become short of breath and went to the Emergency Hospital, they gave me another inhaler along with some IV.
I went home and my GP called the next day and prescribed Amoxiclan on Feb 17th.

This GP retired finally in April and that's when I found the report in my files. I am was extremely upset to read this report in my files.
I had never heard of these terms "Bronchiectasis " and "Pseudomonas " as I read this report, I see also he is mentioning previous hemoptysis which I have no idea what that is. I will have to check Dr Google!

Since this incident,I am somewhat better but I have a lot less energy, I have a new Respiratory specialist who gave me a prescription to analyze my sputum,unfortunately I can no longer bring even a tiny amount for a test.
My voice is very raspy and I have no idea when this my normal voice will come back.
I found this Mayo clinic forum and I am very thankful that I can read about other people's experiences as I try to educate myself to my new situation. Thank you for listening to me, I wish everyone the very best. Andree

Andree: What a horrible time you have had! Seems like no one really cared about you. Hemoptysis is caughing up blood, or bloody sputum. Some of us get that. I hope they test you for mycobacterial disease, actually, you should insist on it. We all have bronchiectasis and most have MAC or MAI along with it. Others on the site will talk to you about pseudomonas and what they were prescribed. Sounds like you have to start over and figure out exactly what is going on. Read all on this site. We all have the same stuff and can suggest what to ask the doctors. xoxo Christa

@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


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

Thank you very much for your reply Christa,
It's very heartwarming and also comforting to be in touch with people who understand
What I am going through. I will read a lot of the material and educate myself about this new health challenge that I am facing. Thank you for your explanation about Hemoptsis, luckily I only had that for a short time and this problem has not showed up again.
All I can say to you is that now that I found this wonderful group I am here to stay.
Thank you for my first response Christa!

Hugs, Andree

Dear Katherine,
Thank you for your wonderful response and welcome. I must tell you that your site with all your knowledge has brought my panic level way down. To hear that there are so many people and mostly women who have the symptoms and that I can identify with all of you gives so much more security.

You have given me a wealth of information and I really appreciate the Dr's explanation of what Bronchiectasis is all about.
You will get a laugh with this...I did , my new Respiratory Specialist is trying to push one inhaler product over another that was given to me ny new GP . I know for sure that he must be getting something from this company, also I requested a lung Physiothrapist in order to help me produce some mucus for lab testing, well his secretary sent me to a "Sports Phisiotherary clinic which is situated on the first floor of their office building.
I went there and the receptionist had no idea what I was asking for!,

I also asked for the Alpha 1 blood test and while I was at the lab, I asked them if they knew about a lung therapist. The girl sent me to an office a few doors away that does physiotherapy and they have a contact for what kind of therapist that I am looking for.

I also asked for a community respiratory program that is available in my area. I have an appointment tomorrow morning and will keep you posted if you are interested.

One more thing, I have made the decision to move from the Pacific Northwest back to Montreal which is my hometown. It may sound weird because the winters are snowy and cold back there but it is a lot drier than Vancouver where the humidity in the winter penetrates the buildings and besides the lungs promblems it brings on ,there is also the arthritis which becomes much worse.

I also plan to spend the winter months down south ,most probably Florida. I imagine that this will help to.

Many hugs to you Katherine,

Andree

@mariposa, Andree .. you go Girl! Didn't I tell you "Knowledge is Power"! You read the back pages AND stick with us .. AND frankly .. you will probably end up knowing MORE than MANY doctors and respiratory therapists know! Why? Because we have such a wonderful community of caring people that come back when they learn new things and share their knowledge .. PLUS then pass on to Newcomers .. EVEN if they are just ONE STEP ahead of them on their journey! Why? Because we have ALL learned that "giving back" is all a part of our own healing process! I am so happy for you. Just keep learning .. and trusting your inner wisdom! Hugs! Katherine

@mariposa .. Andree and @unicorn, Christa, I don't want to take you back to a dark place .. JUST want to tell you just HOW VERY proud I am of you!! You are SUCH an example of our Community of caring loving Members who come to our Forum just terrified .. take the time to read the back pages .. understand that TRULY "Knowledge IS Power" .. then DOES become their own best Advocate .. THEN makes a HUGE effort to "PLAY it forward" give back by helping our other Members .. ESPECIALLY watching for Newcomers! Christa, I really want to thank you for being YOU .. AND being such a valuable member of our Community! A Big Hug to you! Katherine
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(remember back to your posting on June 10 .. I went back BECAUSE I remembered how scared you were .. you posted "My name is Christa, I have a child’s glee about life, so I am a Unicorn. I have a nice life on the beach so it is not depression, I am not depressed. It is just FEAR, plain and simple fear.")

@mariposa Andree, I get the below newsletter (National Jewish Health <info@njhealth.org>) and it made me think of you .. thought I'd add it to our Forum .. thought it was interesting .. MANY of us with Bronchiectasis were FIRST inaccurately diagnosed with asthma .. so I googled "DO WEATHER PATTERNS AFFECT BRONCHIECTASIS AND ASTHMA THE SAME" .. got "Types of obstructive lung disease include; asthma, bronchiectasis" .. so it confirmed my suspicion that both are affected by the same weather! So the below is interesting to see the geographic effects on our health! Hugs! Katherine
https://www.nationaljewish.org/health-insights/health-infographics/best-and-worst-cities-for-asthma

Thanks Katherine xoxo

Hi @mariposa, I would like to add my welcome and also introduce you to fellow Canadians who are members of the Connect MAC group. Please meet @megan123 @teresaml @daviseyes @joanney and @tessie. They may be able to help with advice specific to finding a MAC specialist in Canada and dealing with the climate there.