New to the site… bronchiectasis, Pseudomonas and Tobramycin

@mffox Welcome to Mayo Connect, where I see you have already found your way to the MAC & Bronchiectasis support group.
Although I am not one who has been on Tobramycin repeatedly, I know that some of out members have done so, maybe @irenea8 or others can answer for you.
Or you can navigate to the group:
https://connect.mayoclinic.org/group/mac-bronchiectasis/
Then use the "search discussions" box to find discussions about Tobramycin.

Wow to 1997. You did not mention Bronchiectasis but assume you have it! Wow to your age and weight and yet your exercise routine. I can only manage 20 minutes on a flat treadmill and I am 75 and weigh 99. Did you just do the IV Ceftazadine one time and have improvement that lasted? Often we hear that Pseudo only really improves after using inhaled Toby. But many people do not tolerate it so you are very fortunate indeed and your improvement is wonderful. I also have colonized Pseudomonas but mine is chronic infection. I also cough up what you describe at around 4 plus ounces a day. I tried the Toby inhaled but only managed to use 5 times (literally meaning 2.5 days). For me it decreased urine output so I stopped. It can in rare cases damage your kidneys. I also lost my voice totally but could have lived with that. If you keep using it eventually you could develop resistance. Some Drs. will rotate it with Cayston to prevent the resistance. But Cayston is usually approved only for CF patients. If your Dr goes to bat it might get approved. Otherwise it is prohibitively expensive. There is also Colistin inhalation as an alternative. But not sure what coverage that requires. The nice thing about Toby is that part B medicare covers it! Anyway I hear of some people using it for years and not developing resistance yet.

@irenea8
Thank you for commenting, Irene. Yes, the bronchiectasis has been evident all these years, although in the early years the focus was on MAC. I’m not sure when I first heard the term bronchiectasis.
After the Levaquin quit having any effect I just upped my activity and increased efforts to clear the junk out of the lungs. I finally agreed to Ceftazadine in summer 2023. I saw great improvement, but not as impressive or lasting as I’m getting with Tobra. Ceftaz. is every 8 hours for 3 weeks…. Requiring an IV line with all the associated hassle (and I can’t swim with an IV). Repeated the Ceftaz summer ‘24 and in May and Oct ‘25. I spend winters in clean, dry air in southern AZ, hiking in the desert, summers in humidity in Minneapolis. And a pulmonologist in each place, an infectious Disease doc in MN. It’s complicated!
I’m hoping I can continue to tolerate the Tobra, and forge ahead with my use-it-or-lose it approach. I’m not planning to live to 90, but want to stay active til close to the end.

@mffox I have not had BE or Intercellular very long. Intercellular Low Load since 2023 and on watchful waiting.
You may not be planning of living to 90 but considering overall how long you have done well since 1997.....you might just do that.
I am 83 and nine months in and...."somewhat' ....concerned I will live until 90 or even beyond. Somewhat concerned for various reasons...living alone, responsibilities of a house and concern for all the reasons we know about all senior type communities and then there are the finances in general even though at this time the financial is fine. We keep hearing....you don't want to live a long life and run out of money. For sure we don't want to run out of money for all the reasons we know, especially being single or becoming single.

I noticed that you mentioned lie on your back, I take it you just mean when doing the backstroke. I take it you don't mean lie on my back to sleep???
Barbara

@blm1007blm1007
I’ve recently been on my back at the end of yoga class without difficulty. ( my long-time yoga teacher was so excited!). Haven’t tried sleeping that way…. I’m so used to sleeping on my tummy that it seems weird to flip over. I should attempt it.
I understand your concerns about aging…. Every one I know is weighing all those issues.

@sueinmn
Hi, Sue. I have been in the group for a few years. The info given has been do helpful. In my beachtown respiratory therapists interaction and education of the actual pulmlnologists are lacking. Thrre is little follow through beyond diagnosises. I have demonstrated the use of equiptment and brands to explore from my Denver experience and this site’s invaluable discussions.
Now I have a friend who has moved on to another level of equiptment needs that I have no knowledge of. My question is
“ Is there an oxygen concentrator that can go to 10 and gives a continuous flow?”

@mffox I asked because we are told to sleep on a wedge on our left side and wondered if that is what you do or not.? I think the reason is to protect ourselves from the possibility of acid coming up at night, especially if we have LPR or GORD or GERD.
Barbara

@dee65 I'm sorry to say that information is not in my realm of experience.
May I suggest that you go to the Lung Health group and start a discussion with just that title? I'm sure you will find people there experienced with oxygen concentrators.

@dee65
Oxygen concentrators typically deliver flow rates between 1 and 10 Liters Per Minute (LPM) of concentrated oxygen. Maximum output depends on the type of unit:
Stationary Home Concentrators: These plug-in machines generally go up to 5 LPM, though "high-flow" stationary models (like the Invacare Platinum 10) go up to 10 LPM.
If you require higher oxygen flow rates exceeding 6 LPM, you may need to use specialized equipment like a high-flow nasal cannula. Because these machines separate oxygen from room air, you should also check the manual as output limits can shift at high elevations.