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MAC: Just how well do nebs work, anyway?
Good afternoon,
Like many of you, as I sit with my "pipe" in my mouth for seemingly endless hours, I often wonder "Does all of this do any good? How deeply is this penetrating into my lungs since most of my bronchiectasis is in the lower lobes?"
Let me tell you a little story about my past few weeks...
On Fathers' Day, I started coughing like BT (before treatment), my lungs hurt, no energy, ... I looked at my trusty green machine and realized it was lonely - I hadn't used it for a few days. So back to faithful daily use, and it helped a little, but the darn cough was getting to be 24/7, so off I went to the doc. She changed my neb (temporarily) to DuoNeb to try to open my lungs better, stopped saline to calm the irritation and ordered a few days of steroid too. Boy, the junk really started to come out!
Then I restarted the saline, and just like I remembered from my early use, every cough was like licking the salt off my Margarita glass. But the cough is 90% gone, my O2 sats are almost (my) normal, and the fatigue is almost gone. This morning I realized that yesterday's saline vial wasn't used, oops, it had fallen on the floor. Then I ran off to do errands & chores.
GROSS ALERT!
When I started to cough, I was STILL bringing up a ton of mucus (after 48 hours) and it still tasted like salt.
Since 7% saline has been shown to inhibit or stop the growth of MAC bacteria, I find that VERY happy news - it means that salty fluid stays down there, bathing our lungs, even if we occasionally forget or get lazy (not that I'm recommending that...)
Perhaps that's why those of us routinely using hypertonic saline are having fewer exacerbations, and why I didn't end up as sick as I have in the past.
What has your experience been?
Sue
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I am an apartment dweller and have been one my entire life so gardening has not ever been on my agenda. The bending over comment was made when Dr Huitt was discussing whether ntm patients should garden. I believe she had a graphic showing someone bending to plant something from a kneeling position.
I'm glad you are able to participate in an activity you enjoy so much.
With the emphasis on GERD being a component of Bronchiectasis, the bending in question is bending so far that the esophagus is below the stomach - like bending to pick paper off the floor. Kneeling and leaning forward alleviates that concern. And it is better for the body.
My ID doctor is more concerned about what one might be inhaling from the soil - like more NTM and other pathogens.
That is why he says a conditional "yes" - with a mask.
Sue
Hemoptysis led to my diagnosis of bronchiectasis & MAC almost 4 yrs ago. My first pulmonologist didn’t appear concerned unless the amount was significant. Usually my cough would produce bright red blood & some clots. This might happen several times in a day or over the course of a few days, then not happen for weeks. It was more than 2 yrs post diagnosis before airway clearance was suggested & this resulted from my ongoing concern about the hemoptysis. The incidents became more frequent-every 2-3 wks-& my Dr. suggested antibiotics. She had me consult with an infectious disease Dr. who did not think my general health warranted treatment. I saw them both in early June fully expecting hemoptysis to occur any day, but my last incident was mid May. Since then only light blood in a couple of coughs while nebulizing. Early in my use of the 7%, I did stop it when my throat became irritated & I coughed up blood. Fortunately this did not last for me as I became used to the 7%. I hope this helps you. Take care Linda
I think she was talking about problems caused by anatomy because the esophagus is along our backs and the windpipe is in the front. I recall she had recommendations for dealing with this. I think she disagrees with your doctor about soil being the issue but if you have a chance watch it and hear what she has to say. I may be remembering wrong.
Nodules are deemed to be evidence of infection, but must be confirmed with a sputum culture. If active MAC is being monitored, shrinking indicates lessening degree of infection, growingnodules, or development of cavities, means the infection is increasing.
Sue
I know there is disagreement among doctors as to source of infection, but as I am unmedicated at this point, I try to avoid as many vectors as reasonably possible while still living my life.
Sue
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2 ReactionsThank you. I have nodules at base of each lower lobe but with last CT Scan they were unchanged. Had no idea what it meant. With Covid pulmonologist are so busy.
I agree Raney, all the medical personnel are very busy now, but that is not a very good long-term excuse, in my opinion. It only takes a few sentences in an email to explain what it means, and whether there is cause for concern, or just continue monitoring. They have to write it into your patient record anyway, so it could be sent to you as well.
In the past 2 months, I have been seen in3 different health networks, in the ER, by my PCP, gastro, gastro nurse, nuclear med, surgeon, hand doc and had surgery. In addition, I had a mammogram and EKG. In EVERY case, there has been an explanation filed and shared with me, by each doc or their staff, on every test and procedure.
I think if I were in your place, I would become more insistent about getting information communicated to me by the doc or their staff. Sometimes a few phone calls will lead them to do a better job at communicating.
Sue
I changed pulmonologist and PCP 10 months ago because they were not sharing or explaining and some of the things I could not see on the electronic medical record. I mentioned the issue with the pulmonologist practice that I switched to. Nothing has been posted in the patient portal of the electronic medical record since Feb. I FINALLY had them to mail the summary for CT scan and still waiting on final results of last sputum. I contacted UNC-Chapel Hill this past Friday for an appointment there ASAP. Hope to hear back this week.
I watched the GERD webinar by Dr. Huitt this morning. I learned so much!! I have the head elevated 6 inches on blocks, plus I have slept on my RIGHT side for YEARS due to spurs on vertebrae on left. She says the HOB should be elevated 45 degree and the NEVER lay on right side in order to prevent acid and bacteria from getting into lungs. Tonight I will sleep in my recliner.
I am going to be searching for an adjustable bed.