Oxygen and dryness

Hi @irenea8, So sorry to hear this. You must feel like you've been through the wringer. I don't have experience with this but it seems to me that what you are doing with the water sounds reasonable. That or boiling the water first.

Be kind to yourself. I've read that for every 1 day in the hospital it takes 1 week to recover. Hopefully, the increasing daily sunlight will help to buoy your spirits and energy. When I had walking pneumonia in December I bought an incentive spirometer from Amazon, which was useful in practicing deep breaths with a visual aid for feedback.

Thanks for the input Scoop! I am glad I have the LifeStraw and hope it is a good plan. The hospital stay was really not bad at all. Maybe because it is a special unit just for Pulmonary infections and BE etc. and also because I was just so sick it was a big relief. They have a great Pulmonary Rehab that work on you and they bring you your nebbing. Great and very accommodating staff that let you sleep at night or neb when you want etc. Food was decent and I was starving after treatment began with OX and Mero. I almost did not want to leave. The IV injection was just twice a day and had almost 0 side effects. I started to get twinges of colitis at the end of it so I stopped at 11 days instead of 12. The oxygen made me feel SO MUCH better. My stats were (wait for it) in the 60's when I was admitted. Now in the 90's on OX. My infection was pretty severe. My kidneys were shutting down and I never realized it was from low Ox that had been going on. It will be interesting to see if I can get off of the OX or not. This was my first actual treatment for Pseudo so the response was good. Hope it lasts for some time.

Wow, you sounds like you are in good hands with that hospital nearby. Great that you got meds by IV. SpO2 in 60s oh my. Good thing you got to the hospital for treatment. I always worry about becoming septic without treatment from a bad infection. Hope you get some relief from the pseudo. Take care!

U of IA hospitals and clinics specialty pulmonary dept (deals with CF, BE, Pulmo infections and such. Feel very fortunate to have it so near by. IV is the way to go for serious infection or at least that was my experience.

Irenea8. Oh you went through a lot and it looks like the infection is gone. Do you have support at home so that you get stronger? No matter how fine the hospital stay is, you are always exhausted.
Ps. How did you learn it was pseudomonas infection and is U of IA university of Iowa?

The Pseudomonas is knocked back and infection symptoms are gone for now. My Pseudomonas was discovered some years back but we do not know for sure how long I have had it. At least I have had it since around 2022? The infection from it and perhaps other bacterias had gotten very bad. It is chronic mucoid strain and they tell me I will always have it. I can only hope it stays knocked back for a long period of time. One must remain very vigilant with routines etc. I have great support at home! U of IA is Iowa. It is a teaching hospital.

@irenea8 so glad you are back home and feeling better. I agree with running the distilled water through the life pitcher (or boiling as scoop suggests). I was recently in pulmonary rehab and many started the program on oxygen and improved enough through the program to go off or use only intermittently. If you can get yourself into an out patient pulmonary rehab program I would recommend that for you. They have oxygen and are constantly measuring vitals etc so it is a very safe space to build up lung capacity and strength (which helps lung capacity go farther).

Just as a note regarding our local Pulmonary Rehap and something to think about before entering a rehab facility.
The local pulmonary rehap here does not require anyone to wear a mask and I'm thinking they should know what they are doing and if that is O.K. so I somewhat did not give it another thought. Not good. I understand NYU does require masks in pulmonary rehap per a patient that read my story here on Mayo about my local hospital pulmonary rehab and what followed for me. I had not had Covid since the beginning of the announcement until my three visits to the local rehab in 2024. I masked, mask, in all other public facilities and do to this day.

True I don't know for sure if it did happen there but that was the only thing I did totally different in four years, since the announcement of Covid. I went on the suggestion of a Nurse Practitioner who meant well but may not have known they do not mask in this hospital pulmonary rehab.
P.S. As a concerned person I made my call to the head person in the Rehap Facility and also the Administrator of the Department to give my facts and thoughts. Needless to say nothing they said made good common sense or sense at all, to me any way.
Barbara

When I read the suggestion my first thought was even if we do have Pulmo rehab in my town I would never go during flu season etc. or anytime if they do not mask. I am very cautious about such things normally. So I agree Barbara! Thanks

@blm1007blm1007 @irenea8 I masked the entire 7 weeks I was in pulmonary rehab. Some other patients did, some did not. All the rehab nurses did but I don’t think it was required. I mask indoors when in public, period. I started with the onset of Covid, long before I was diagnosed with BE/NTM, and never stopped. I have never had Covid (knock on wood) and have not had a single respiratory illness (other than recent BE/NTM diagnosis) since I started masking. I suspect that is why I am largely asymptomatic. I also work out at a gym regularly, again masked the entire time. No one is masked anywhere, but I have stayed healthy wearing my mask (KN-95 or N-95). My rehab nurses taught me about this great product that goes inside the mask to keep it off your face which I find really helpful when working out at the gym in my mask. Without it, when the intensity level goes high it can feel challenging to breath in the mask, but I am working pretty hard at this point, not sure that is an issue for everyone. Bottom line: masking has kept me incredibly healthy and because of this I could care less what anyone says about it or whether others are doing it. I mask, period.