Use and cleaning CPAP post transplant (BMT)

@lag630, I'm wondering what in particular you are concerned regarding using the CPAP after your husband's bone marrow transplant. Might you be worried about infection?

Yes. The moist environment and all. Is this equipment that should be swabbed with 90% ETOH?

This is a really good question! Your husband will be very susceptible to bacteria and fungal infections so this machine and all the tubing will have to be scrupulously clean. I’m just thinking out loud, your husband is already immunocompromised with his health and the meds he’s on and so far this hasn’t been a problem for him health wise.
So whatever he’s doing to keep it clean seems to be working ok. Swabbing with 90% ETOH will certainly disinfect the surfaces it touches and is a good idea.

But I also know he can’t possibly be the only BMT patient who’s potentially had this issue come up. So my suggestion is that when you’re both in for a meeting with the transplant team, ask for their opinion. Or you can send a message through your husband’s portal to a nurse coordinator of his health team. They’re really great with fielding questions and concerns.

How is your husband maintaining his machine now to avoid bacterial growth?

Soapy water and rinse. Yes I will use the patient portal and reach out to the nurse. If they tell give me a protocol for cleaning CPAP post BMT, I will share the info.

After a little more research and picking the brain of one of fellow mentors, @johnbishop, who has first hand knowledge of CPAP machines, I found that there are some very effective CPAP cleaners on the market that will sanitize the machines/parts with a high degree of efficacy in killing and preventing growth of bacteria.
One product called SoClean seems to be the front runner in the business.
https://www.soclean.com/soclean3/product-category/sale
It uses ultraviolet light to kill the bacteria on all surfaces, assuring clean and germ free breathing. This is the same process used at Mayo with their sanitizing Robot who comes into rooms after a patient is discharged. It disinfects the entire room with the ultraviolet light.
There is also a conversation on the Connect forum you might find of interest. -- What is your CPAP Cleaning Routine?: https://connect.mayoclinic.org/discussion/cpap-cleaning-routine/

When your husband has his pre-transplant educational classes he will (you both will, as his caregiver) have a lot of information tossed your way for avoiding infections.
Cleveland Clinic, another reputable transplant clinic, has really good information online on prevention-post transplant. While it doesn’t specifically cover CPAP machines it gives a comprehensive guide to staying safe, what to avoid such as room humidifiers, and common things we might overlook. Where I stayed for my 100+ days, the first thing I ask housekeeping for was a new shower curtain liner in my bathroom. They were great in accommodating my request.
https://my.clevelandclinic.org/health/diseases/4511-bone-marrow-transplant-preventing-infections
Have you looked into one of the disinfecting machines for your husbands CPAP?

We did try one ( I think it was SoClean) a few years ago but he didn't like it; I don't remember why. The links you suggest are very helpful. Thank you! I'll check with nurse to see if vinegar/soap &distilled water will be sufficient.

You might want to check this Facebook Group of CPAP users. A lot of the research on CPAP occurred at the University of Sydney in Australia and ResMed (AU company) is one of the leaders in the field. Everyone seems to have adjustments in use. Generally, they advise to wash the mask and tank at least once a week in a mild detergent. Others wash the mask every day to get rid of oils. But there are even sterilization machines which I think is overkill. https://www.facebook.com/groups/cpapreviews

They told me to clean it like before. I clean my mask and mask pillow, hose an d humidifier with baby shampoo daily. I replace filters weekly. Use distilled water in tank. Once bottle has been open for a week zI start a new one. Not using my machine at the moment due to nausea

I understand your concern. I am liver transplant Oct 2020. I have used CPAP for several years. Before LT I had one pulmonary nodule. Now , I have multiple. I have gone through several test to determine the cause of the increase in nodules. I am suspicious of the cpap . Yes, I have tried to keep in clean; however, I know I am susceptible to infections. There have been a few times where my sinuses were infected as well as I have had covid 2x. The nodules increase started before I had covid so I can't blame that entirely.
I am scheduled to see a lung nodule specialist next week. I have been seeing a pulmonologist who has done CTs and a bronchoscopy which did not reveal an answer; however, it did rule out some things.
I am extra careful with cleaning cpap, but I still think all the moisture every night causes issues. My water chamber each morning is almost completely empty.
I would love to try an appliance!

Yay Lori. Post pancreas transplant Cheryl weighing in here. I’ve used CPAP for years. Mine recommended regularly cleaning all the parts with hot water and dish soap. Rubbing alcohol was not recommended because it would break down the plastic parts. Then So Clean came along and my husband and I started using that. It is a separate machine to put your gear into clean daily. There was some issue with it and a small adapter piece of equipment was designed to connect the hose to before putting the gear in the So Clean for daily cleaning. (I has to be disconnected from that adapter before reattaching it to the CPAP before use). So Clean also makes disinfecting wipes (much like pop up baby wipes) that can be used to wipe down your gear. We have found that this stuff has been very helpful in keeping our equipment clean and dry ready to use as needed.