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Sat, Aug 24 12:56pm · Starting Arikayce - nervous in MAC & Bronchiectasis

Thanks for asking for an update. I started Arikayce on a Tuesday in July and all went well, just some coughing and more shortness of breath than my usual for a couple of hours. After Saturday's treatment (#5), I had extreme shortness of breath which didn't stop so I skipped Sunday and contacted my doctor on Monday. She said to stop until I was breathing better and we would take it from there. Pseudomonas and two other nasty bacteria had shown up in my June culture and my doctor said that Arikayce would take care of them as well as MAC.

It took about a month to get back to my normal no so great breathing. When I saw my doctor on August 14, she had amazing news for me. She said that the June culture showed no MAC growth for 9 weeks! OMG! That would be before I even started Arikayce. It's interesting that the June and July reports that I get through Mychart said MAC but she gets a lot more information with charts and other graphics that I can see on her computer screen. Also, she has a Fellow who was with us for the appointment and they were both beaming at me! And there might be a difference between Mychart which only says MAC and her report which say no MAC growth. in any case, Azithromycin and Ethmabutol (I couldn't tolerate Rifampin) worked for me in just a couple of months – started in March 3x per week! If only, I didn't have other organisms growing in my lungs!

She told me to resume the Arikayce but 3x a week, stop the saline which irritates my chronic bronchitis airways and she cut Azithromyin to 250 3x a week from 500, to ease the toilet problems I have (had colon cancer surgery almost 4 years ago and I'm missing almost a foot of colon, almost 2 feet of intestines and the valve between them – a story for another day -lol).

I'm doing the Azithro and Ethambutol on M/W/Fri so I decided to do the Arikayce on T/Th/Sat to attack the bacteria with something every day except Sunday. Everything went okay until this morning. I woke up with horrible thick constant mucus – like Lucy in the candy factory. It wouldn't stop even after I used the vest and Aerobika and had breakfast. The mucus is on my vocal cords as well and I have the croaky, laryngitis, wet deep voice like when I had a cold and it settled in my lungs.

But I haven't used Arikayce since Thursday so is that causing this? I don't think this is the same as the Arikayce loss of voice some of you had but please let me know if I'm going to lose my voice completely. I plan to continue the Arikayce today.

One more piece of news in this very long post (sorry). I just received the results of the August 14 sputum sample and there is no mention of the 3 bacteria that came up in the previous samples. To be honest, since I received the email in June telling me there was a new test result and I saw the pseudomonas, klebsiella pneumonia and cocci and bacilli in the report, my heart pounds each time I get an email telling me there is a new test result. I had a bronchoscopy on July 1 and there were 8 cultures from the lavage and biopsies. It is SCARY. But, I THINK the failure of mention of these nasties today is good news. (It says there is lots of MOLD!!!!! UGH)

Oh, one more thing. Amakicin is the antibiotic which prior to Arikayce reached MAC through an iv or by being inhaled with another drug – I think saline, maybe Albuterol. Arikayce combines Amakicin with liposome through a special nebulizer. Liposome causes the Amakicin particles to be so small that they can get through MAC's protective shell.

I hope you are able to take Arikayce with no trouble. It is the best drug available right now for NTM.


Thu, Aug 1 11:47am · Water at freshwater lake in MAC & Bronchiectasis

I'm glad the money came through and hope you have no issues with the treatment and it works for you. Enjoy your fun with family! Rita

Wed, Jul 31 5:51pm · Water at freshwater lake in MAC & Bronchiectasis

Thank's for asking, Sounder. The training went great but I was short of breath and I had lots of gunk to cough up after each treatment.
I was doing it in the afternoon and by bedtime I was ok – until the fifth treatment which was on Saturday. I couldn't get my breathing to settle down and couldn"t stop coughing up gunk. Sunday, I realized I was having an exacerbation of my chronic bronchitis or bronchiectasis or both.
My breathing was so bad that I could barely make it to the kitchen and I stopped Arikayce as well as my airway clearance treatments. I sent a note to my doctor and she called me. She told me to hold off on the Arikayce and to concentrate on getting my breathing back to what is normal for me. Then, we would decide what to do. Maybe Arikayce 3
per week or maybe something else. Ten says later, I'm just about back to where
I was and I plan to send s note to the doctor tomorrow. I have an appointment for another ctscan and with her on 8/14. She may want me to wait to see her before
trying it again.

I am tremendously disappointed!

Sun, Jul 28 12:21pm · Water at freshwater lake in MAC & Bronchiectasis

MAC, Pseudomonas and other bacteria are everywhere and everyone inhales it just as everyone inhales other "things" in the air. If you smell it, you are inhaling it – some good smells like popcorn, chocolate (yum), perfume and some bad like smoke, diesel and garbage. Healthy lungs have great filters but those of us with lung diseases, such as bronchiectasis, get rid of most of the junk, but sometimes can't get rid of all of the bacteria. The bacteria can colonize in the mucus trapped in our blocked airways causing the disease.

As for swimming, I'm not sure how water containing any bacteria gets in the lungs because we don't breathe in the water. I think bacteria, like that flesh eating horror, gets in the body through a wound of some sort. I would check with my doctor before putting any part of my body in water that has not been treated. Even then, I read somewhere that chlorination does not kill MAC. I do go into the pool at my health club to take water aerobics but do not go in the pool if I have a wound.

Mon, Jul 22 10:31am · Your Tips on How to Get Off to the Best Start with a New Specialist in Visiting Mayo Clinic

I recently changed my lung treatment from a pulmonologist I had been seeing at Northwestern to one at University of Chicago. This is what I learned about medical records and first appointments:

1. Doctors can access your test results on line through an Epic program. If you have a number of tests wrt the relevant condition, I recommend taking a list of the test dates to save the doctor time spent scrolling through multiple test results.

2. Doctor's notes are not available online so you need to obtain them. Frankly if I had seen my former pulmonologist"s notes re my many appointments with her, I would have left her practice long ago. She wrote that most of every appointment was spent on counseling. That"s how she saw my questions re why she was ordering frequent ct scans although the radiologist reported there may be an infection but no sputum tests and whether a newer drug was better for me than the ones I was taking. Sigh.

I used to take my questions on paper but now I have a notes app on my phone. I sometimes stop in the waiting room on the way out and write the answers before I forget what s/he said.

3. While ct scan reports are available online the actual ct scan needs to be put on a disc. Specialists like to go over the actual scan and will put your disc contents into your records for future reference.

4. I hope this doesn't sound crass but doctors are only paid for the time with you. Any fax or letter will most likely be weeded out by his nurse or assistant. The doctor knows you are there because you want help with your medical condition – a condition he or she is very interested in hence the years of specialty training.

That"s all I can think of right now. Hope it helps and good luck on your appointment.

Thu, Jul 18 3:32pm · Starting Arikayce - nervous in MAC & Bronchiectasis

Thank you Angie. I started Tuesday and so far my voice is fine. Do you remember how long it was before you noticed any problem with your voice?

Mon, Jul 15 5:42pm · Starting Arikayce - nervous in MAC & Bronchiectasis

Hi Terri. I am 76 and was a teacher – a career open to women back then. At age 40, I went to law school and practiced law until I retired due to health issues.

While I traveled outside of the U.S. when I was younger, the last foreign country trip I can remember was in the 1990's.


Sun, Jul 14 5:11pm · Starting Arikayce - nervous in MAC & Bronchiectasis

My doctor gave me a titers test of my antibodies (immunity) and found that, despite having both pneumonia shots, I do not have many antibodies that I should have. She gave me another pneumonia shot and told me that we would repeat the test for antibodies in six weeks at my next appointment. If I am still low in antibodies she said we would do an infusion.

I don't know if the lack of natural antibodies is why I have so many different bacteria but I'm glad my doctor is looking into it. Then of course, there"s bronchiectasis which creates an ideal environment for these nasty beasties to flourish.