← Return to (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS

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@katemn

Pamela, I reposted this is MAC & Bronchiectasis as I saw it under “Harmonica Therapy”

Posted by @pamelasc1, 1 hour ago
This is just a general question to the group: I will be ending my 18 months of being on the meds for MAC end of April. I do cough some, but infrequently and do not bring up much of anything. How am I going to get a sputum sample? Before, I had no trouble with that as I was coughing all the time. I just began using a nebulizer in the AM to see if that would bring up stuff, but so far it has not. If I can not get it myself, will I have to have a bronchoscopy? I dread that as I had it done once, but that was years ago and they used no sedative or anything! Maybe it is less invasive now? Can anyone suggest all the ways to bring up sputum? Before stopping the meds, I do want to know if the MAC has been beaten back. Thanks, Pamela

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Replies to "Pamela, I reposted this is MAC & Bronchiectasis as I saw it under "Harmonica Therapy" Posted..."

Thank you Katherine – by the way, can you send me any links that have info on the harmonica therapy – I can not find your original email and want to learn more. Pamela

WHAT??!! Bronchs are done under general anesthesia…any doc who does anything else is not a good one. I’m about to have my second…worse thing i experienced was feeling drowsy the rest of the day until the anesthesia was out of my system.

@pamelasc1, Pamela and Boomer, for me personally I threw up 24 to 48 hours after general anesthesia .. so in speaking to a wonderful anesthesiologist he spent time explaining to me that with “twilight sleep” there is a spectrum .. say 1 to 10. Ten being taking me as deep as general anesthesia. That with a careful anesthesiologist I could be taken as deeply as necessary with “twilight sleep” without the horrific vomiting. After speaking with him I have NEVER had general anesthesia again! I now have on my medical record when going into a hospital/same day surgery the statement: I have a compromised respiratory system with MAI and Cylindrical Bronchiectasis being treated by Mayo Clinic. * *WORKS FOR ME: *Anesthetic: Conscious Sedation: Diprovan and Zofran worked VERY effectively. Also works: Anzimet/Versed

Now, this is just me .. but wanted to let you know there are options that YOU as a patient can fight for. As we get older there are ALWAYS potential side effects to general anesthesia .. I just refuse to take any more chances than necessary! Hugs to All! Katherine

Yes, Katherine, there are definitely anesthesia options. I am very sensitive to anesthesia and am treated with kid gloves whenever I have to go to sleep for a procedure. We are our best advocates on that one too – given the fact our lungs are already compromised, and especially if it isn’t written in our chart about anesthesia difficulty. Irene

@irene5 Irene, you are SO right! No one knows our bodies as well as we do .. and if we don’t advocate for ourselves who will?! A few years ago a what I consider an arrogant anesthesiologist who I feared was not listening to me .. I didn’t listen to my gut feeling and request a different doctor! He “took” me down too quickly .. my blood pressure plummeted .. they had to quickly cancel the procedure and send me home to have to come back a second time. ALL because some doctor thought he was god and would not listen to what I KNEW worked for MY body .. AND I did not listen to my gut feeling. Lesson learned. I now have that on my medical information so any other anesthesiologist KNOWS not to take me down so quickly!

I would recommend good medical records on your computer that you can update/print out and take with you to every medical appointment is one of the best things I have ever done for myself and for my husband! I have yet to have a doctor or medical secy not be VERY impressed with my print out .. I do the headings in one color etc to make things stand out :

WITH THE HEADINGS: At the top I start with all legal info-including insurance policies and numbers-emergency contact-has Health Care Directive/hen current meds/hen over the counter/Surgeries with dates/Health Issues with date diagnosed/Various Vaccinations-Last Eye-Hearing-Dexa-Skin Exam etc with date/meds that DO work for me/med allergies-side effects/list of all doctors with their fax numbers/vitamins currently taking. It does take a bit of work to get this info into a Word document .. but then all you have to do is update it as you go. Then a quick print out before an appointment and you’re ready to go! I have found it is good to print out 2 copies .. the doctor always seems to like to read from one and ask questions .. I like the 2nd copy because I can’t always remember everything .. nice to refer to! If my husband goes to the hospital I print out 6 or 7 copies. Then I hand one to EVERY doctor that comes in .. they seem to LOVE it .. in one document they can see what it takes precious minutes to find in a computer! Hope the above helps someone! Hugs to all! Katherine

I had a bronch done in 2005 without anesthesia or calming drugs. It was a
nightmarish thing to go through. I was unaware at that time that you needed to
be given something before this procedure. The dr had two male assistants
hold me down. I swore I’d rather die than go through that again. Have learned
since, that it was performed improperly.
 

@windwalker,Terri, I am SOOO sorry this happened to you .. so very wrong. Not ONE of our Mayo Connect Forum members will EVER have this happen to them .. BECAUSE thankfully we have all educated each other to what is right .. AND what is wrong. Thank heavens for this our community! Again, Terri, I am sorry .. try to banish this ugly memory from your life and replace it with “happy”! Hugs to you! Katherine

God bless America! I can’t even imagine such a thing. That must have been horrid! So sorry!

@windwalker, Terri, I was just thinking .. IF their SORRY excuse was your lungs couldn’t handle going under a full anesthesia .. ok .. then if you have read my previous post with my experiences with it .. a GOOD anesthesiologist can take you “down” ENOUGH with what is called “twilight anesthesia” where a GOOD doctor can take you down just as far as you need to go. ASK FOR IT!! I do EVERY SINGLE time .. I was told I could have it except as I recall if an internal organ was involved. Just that doctors PREFER that you be KNOCKED OUT!! Hugs! Katherine

Good grief! Sounds like malpractice to me, Terri. Here is a question for you all – I was just getting ready to make some Crystal Light and went to reach for the faucet to fill the container with tap water and stopped myself midstream. Clearly, tap water is no longer something that I want in my system. Can’t use the water from the refrigerator dispenser either. So can I assume that powdered drinks are no longer anything that I can have? Was just diagnosed in December. Linda

I talked to the Mayo about it, they said I should have been put in
twighlight. I had a gut feeling that dr was out to be cruel on purpose. I will
never let that happen again.
 

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