1. < MAC & Bronchiectasis

Finally a diagnosis, on 3 antibiotics, anyone else on oxygen at night?

Posted by josey1 @josey1, Jul 27, 2022

Hi, I wish I would have found this site years ago. I’ve been coughing for 16 yrs. Dr.s had no answer. X-ray, ct scans showed nodules but weren’t concerned. I was finally diagnosed with bronchietasis 3 yrs. ago and was RX’d Breo, ipratropium, aerobika, and 10% saline. The 10% saline hurt my lungs coughing so much. I had one positive sputum but for 2 1/2 years all further sputum samples were rejected because of too much mucus. Finally went to Stanford where they did induced sputum tests and 3 positive Tests later finally a diagnosis = MAC with bronchiectasis. I realized that the 10% saline was harder on my lungs than the induced mixture and asked for 7% which still makes me cough but doesn’t make me feel like vomiting. Why don’t doctors tell you more?

My blood oxygen level also falls to 82-84 at night. Is anyone else on oxygen?

I started the 3 antibiotic protocol for 12 months. I’m just exhausted all the time. I have absolutely no immunity left. I have a 1 1/2 yr grandson and I catch every bug he’s had so I’ve been sick all year. This is pretty depressing.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

josey1 | @josey1 | Jul 31, 2022
In reply to @raney "I was on oxygen at night for over a year up until about 6 weeks ago...." + (show)
@raney

I was on oxygen at night for over a year up until about 6 weeks ago. My oxygen was dropping in the low 80's at night and I had a dull headache every morning. The pulmonologist at UNC-Chapel Hill ordered a sleep study. I have sleep apnea. It was determined that I needed CPAP. Got the CPAP and am have not used oxygen since. Was afraid to let the oxygen concentrator go, so the doctor ordered all night pulse ox. That was completed a couple of days ago. However, my FitBit for the past 6 weeks has shown average oxygen each night to be anywhere from 92 to 95. So apparently the oxygen dropping was the Sleep Apnea. It will probably be a week or more before I hear the results of the overnight pulse ox.
7% Sodium Chloride: 3 percent which does not good at all. However, there are times when I have used the 7 percent and there is still a lot of mucus in my lungs and the 7 percent is beginning to burn. I mix 3% and 7% in the nebulize cup to make a 5 percent solution and that works to get even more mucus out of my lungs. I don't know whether a 5 % is made or not, but I make it by combining the 2 . It does not burn or make me cough but does work to get mucus up.

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Thank you for your comments.
My previous doctor put me on 10% saline which just hurt but did get the mucus up. I had to ask my new doctor to reduce it to the 7% and although it still gets the mucus up, I can still feel it in my chest after the treatment. I’ve gone from nebulizing 3 x a week to 2x daily. The mucus and this disease have definitely moved into high gear since the first of the year.
On oxygen at night, I did a sleep study and a 3 day blood oxygen monitor. I don’t have sleep apnea, I have hypoxemia where my blood drops to 82 while sleeping depriving my tissues and organs of oxygen they need.

REPLY
josey1 | @josey1 | Jul 31, 2022
In reply to @windwalker "Hello Josey. Yes! The three meds taken for MAC can affect your thyroid medication. You need..." + (show)
@windwalker

Hello Josey. Yes! The three meds taken for MAC can affect your thyroid medication. You need to talk to your dr about that. I feel badly that you are feeling depressed; I wish I could give you a big hug. Trust me, we have all been there. The more you learn and the treatment beats the mac infection down; you will feel better about things. Please keep reading through old posts from the DISCUSSION board; you will learn an incredible amount about living with mac and bronchiectasis. Like you, I went for 10 years going to 'the best pulmonologists' and none could diagnose me properly. It wasn't until 2013 when I went to Mayo that I got diagnosed, and my exacerbations under control. They were able to get the constant cough I had for 10 yrs to go away. Extreme fatigue comes with MAC as you know. I suffered from that for many years, but have more energy now. I still have my off days where all I do is rest on the sofa. I listen to my body; when it says I need rest, I do. Exercise is key, I walk a mile every day, and probably another mile in my house, (even on my sofa days). I have two dogs that need walking, so not doing it is not an option. Weight loss and muscle wasting can also occur, so it is very important to, at the very least, use stretchy armbands to keep your arms toned. There are leg exercises too that can be done while seated. You can do these while watching television. Now, I have never heard of steroids being a No-No for patients with bronchiectasis. I just came off of a five day run of them for a sciatic nerve problem. I felt like a totally normal, healthy human being on them, I wish I could stay on them, but I know that is not a healthy option. Were you on steroids long term?

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Hi Terri,
Sending you hugs and prayers as you walk this path. I have read some of your posts, thank you for sharing and guiding us as we walk this path with you.
On Steroids : Before the MAC diagnosis, 2 wks ago, I went ER because I was lost my voice and was finding it hard to breath even after using my oxygen, inhaler, neb, ProAir, aerobika, trilogy, nasal rinse, ipotropium etc. and the dr. gave me 2 breathing treatments and steroids. When my pulmonologist returned from vacation she yelled at me for taking steroids. Helen in the above comments states she learned from this site that steroids were bad for broncectasis. I haven’t researched this but need to.
I was also Rx’s 10% saline and after a year of absolutely hating the harshness of that asked my new dr. To change it to 7%. It’s easier but I’m nebulizing 2x a day now.
These diseases are getting worse very fast now after progressing slowly for so long

REPLY
1 reply
raney | @raney | Jul 31, 2022
In reply to @josey1 "Hi Terri, Sending you hugs and prayers as you walk this path. I have read some..." + (show)
@josey1

Hi Terri,
Sending you hugs and prayers as you walk this path. I have read some of your posts, thank you for sharing and guiding us as we walk this path with you.
On Steroids : Before the MAC diagnosis, 2 wks ago, I went ER because I was lost my voice and was finding it hard to breath even after using my oxygen, inhaler, neb, ProAir, aerobika, trilogy, nasal rinse, ipotropium etc. and the dr. gave me 2 breathing treatments and steroids. When my pulmonologist returned from vacation she yelled at me for taking steroids. Helen in the above comments states she learned from this site that steroids were bad for broncectasis. I haven’t researched this but need to.
I was also Rx’s 10% saline and after a year of absolutely hating the harshness of that asked my new dr. To change it to 7%. It’s easier but I’m nebulizing 2x a day now.
These diseases are getting worse very fast now after progressing slowly for so long

Jump to this post

For 2 or more years I krot telling myself that "tomorrow will be better!" But tomorrow never comes . Now I am telling myself s couple timex s day..
"I am so thankful that I can take care of my treatments and needs and don't need a care giver and I am living independently. That is a lot to be thankful for. Thinking God for all His blessings.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 1, 2022

Good morning Josey. This battle against mac and other infections associated with it can be long and grueling. You gotta be tough, that's for sure. If you click on my picture icon, you will see the treatment plan that worked for me. The dr that treated me with that plan has since retired, but he was a brilliant guy and was head of the Pulmonary Dept at Mayo. He believed that one should start with 'small guns' first and then, if they don't work, then go to the big three (antibiotics). I was fortunate that the two antibiotics that I was put on for only 10 days each month did the trick after one year. The drs that are there now, and drs I have seen elsewhere; do not believe, treat, or prescribe the way he did. All I can say is, I have tested negative since 2014 until a few months ago. (I tested positive for a small colony of MAC/MAI).I was fortunate that the meds I was on in 2013 helped to jump-start my own immunity defenses. I believe that the adherence to the twice a day saline nebulizing also contributed to getting me to a better level in wellness. I am being told by Mayo that I am nearing the time where I will need a lung transplant. I have another dr locally that disagrees with that. (This one believes it it years out until that day comes.) I don't want our group members to panic and think this will be their fate also, because it probably is not. I have rare things going on with no explanation. My CT scans show that the bronchiectasis is not bad enough to warrant my failing lung function, nor is the mac at a high enough level to be causing the drop in lung function. My lung function when measured, measures severely low, yet, I have not felt or breathed this well in many years. Go figure. Mayo has told me that whatever it is that is causing this; it is on the cellular level and they don't know what it is. I have been seeking second opinions at MUSC in Charleston. I do have a tiny hint for you before I go: something that always soothed me when I had a constant cough and tightness in my chest; was drinking 'Breathe Easy' tea by Traditional Medicines. I get it at Kroger's grocery store in the Natural food isle, not with the teas. Some grocery stores do have it, and put it in their tea section. It has many of the time tested Chinese root herbs that calmed my cough and opened up my airways. I hope that you can find good in this day and keep a positive attitude.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 1, 2022

Josey, I am not clear on what type of steroids your dr was against you taking. Was it the corticosteroid inhaler, like Spiriva? Or was it a short five day run of oral prednisone? Did she say WHY she was against you having it? Here is a trusted link from NIH on the subject, and I am sure there are plenty more. The article is a little bit of a long read, but maybe you can read through it while you are nebulizing your saline. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6494510/

REPLY
caontm | @caontm | Aug 2, 2022

I had a flare up in May and had high fever not responsive to antibiotics. Eventually I was put on steroids through IV to control inflammatory reaction. I waned steroid gradually over one month but when steroid usage isn’t enough the fever came back. I wonder if other people had similar experience.

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