[akita]

@launch,

> developed A-Fib and Racing heart conditions. She has very labored breathing and they've had to put her on a Bi-Pap machine to help with breathing, which is drying her out a lot. (I recommended they add a humidfier if able, but, they're checking on that now).

i am sleep apnoe patient and used to sleep with a cpap-machine in the night. as i went to hospital for transplantation they advised me not to take my own machine to the ward because they had their own advice in case i would need some breathing help.

What they showed to me was not helpful. Although the device was said to have the same adjustments as mine regarding pressure, i was not able to cope with it. I think it was a sort of standard machine used for many patients and constellations, but not adapted to the very special needs of such a patient. I guess these can checked only in a sleep laboratory with special tests leading to a profound knowledge of the breathing problems of this patient.

In my case there would have been a sleep laboratory in the same hospital, but the transplantation unit had no cooperation-status with this laboratory. Additionally these laboratories seem to be full occupied for months by ambulant patients and actually not able to adjust to the very special conditions of a hematologic patients..

I agree with you that a humidifier would be very recommended in this situation Another problem regarding these advices in a hospital setting is that the sterilisation procedure is complicated and the flexible tubes must be renewed often. So finally we agreed that i would take my own cpap-machine to the hospital and would clean it by my own. This did not work, because they brought the wrong equipment to the hospital and i also could not use that. Ok, i could have ordered a new mask if necessary.

The normal "private" home devices in CPAP and BI-PAP are different regarding the possibility of adding oxygene, but it is possible to order such extra devices from the company which provides the cpap-machine. So i did. It was a complicated procedure involving the insurance which hat to give a permission for that.. In the hospital they have their special oxygene devices coming out of the walls, but not fitting together with my private device. So it is necessary to check the oxigene device for the privately provided machine also privately.

Another problem could be the wrong choice of breathing mask. Most people use a mask only covering the nose whereas the mouth is closed by a sort of belt. I first had this sort of mask, causing problems to me. My pulmologist had not checked that i have special abnormalities "Muschelhypertrophie" in my upper breathing system, so that i would have needed a full-face mask (which i have now). Many people have this Hypertrophy that causes normally no problems except in these special states of emergency when they are given a breathing machine. Perhaps it could help Suzannes mother checking if she has actually only a nose -mask and would need a fullface one for optimal breathing.. Doctors seemingly dont know that this sort of problem exists (This was not only my pulmologist). i have learned about these specialities only in a CPAP - Patients forum and that helped me to go to the right hospital department to get a proper additional diagnosis. In short time it could be difficult to check all this circumstances.

Its better for a patient in risk of breathing problems to check his/devices before entering hospital according to the advice of the pulmologist...and also to check the hygienical provisions that have to be made in the case you would really need the device in the hospital setting. For me it was finally not really necessary, i could sleep anyway..

Perhaps it would help in this situation to try to contact the sleep laboratory in this hospital, if existent, for some consultation/help. I did not have the impression that the hematologists in my situation were really competent using the device they had at the station.

Suzanne`s mother seems to be in very difficult situation. Hopefully, her state will become better again. Including her and the family in some prayer could really help!!

Regards,

Margarete
So finally