A Night in Hospital with CPAP

[RocketGirl]

So I ended up spending the weekend in the hospital after going to the ER with chest pain on Saturday. That story is still unfolding and I won't bother anyone here with it, but I thought I'd share some cpap-related observations of my experience. The "Message" part is just my take on learning from the experience.

1. Because this started with a visit to the Emergency Room, I did not have my machine with me, and I live alone so there was no one to fetch it for me. I explained this to the ER physician who said no problem, the hospital would provide one until I was discharged. I saw him write this down. (I had also informed other ER personnel that I am a cpap user, so that was also on my record.)

2. I was given a medication that is notorious for causing severe headache. They warned me about this in advance, but felt it was necessary, and they said they'd also provide me with something for the headache. When the initial ER physician rotated off and a new one arrived, she did not notice the cpap notification and prescribed morphine for the pain. (It was really severe pain). I told the nurse that based on past experience, I would likely need immediate breathing support if they gave me it. The nurse canceled the morphine order, and put in a call to the doctor for a substitute. The substitute turned out to be Tylenol, which did nothing for the headache but at least I kept breathing. Message: do not rely on the very busy ER people to always notice everything on your chart.

3. I was moved out of ER and to a hospital room at about 11pm. The Respiratory Technician appeared at 3:30 am. Message: Hospitals are full of people who are probably sicker than you are, and the hospital triages for truly urgent needs first. If you are breathing, aren't bleeding, and aren't currently in cardiac emergency even if they think you're at risk for one, your turn will come after those who are.

4. The Respiratory Technician did his best to find me a mask I could tolerate. The first three were physically painful because he really didn't understand how to fit a mask. But he did find a set of nasal pillows for me eventually; however, he assembled the headgear upside down and didn't realize it even though the straps were going across my eyes. (I just waited until he left, and fixed it.) Message: Resp Techs in hospital may not be all that familiar with cpap gear, but they will do their best to be helpful.

5. The hospital cpap machine itself did not have humidification or warmth, so the air flow was pretty uncomfortable. My nasal passages got very sore very quickly, and I could only tolerate it for a couple of hours. The hospital air was also extremely dry. I asked about that, and the nurse explained that it is deliberate, that keeping humidity down keeps bacteria and mold down too. Message: given the need to keep humidity low, hospital-provided cpap may not be anywhere near as comfortable as our machines at home.

6. Given the reason I was there in the first place, I was afraid to fall asleep without cpap. It was a source of anxiety surprising in its strength. Message: Heck, I'm not sure what the message is on this one. Does cpap engender a component of emotional dependency, or am I just realistic in understanding that my body needs it? I don't know! Your mileage may vary.

Overall, if I sound like I'm bending over backwards to give the hospital folks the benefit of the doubt while relating delays and mishaps, it's because I am. Long ago and far away I had certifications as an Emergency Medical Technician. I understand triage and I understand that these people are not omnicient - but they are very, very good and doing their level best. Because I know the codes, I know that there was a person dying in a room down the hall from me. I was not that person, and am grateful that I was not, and it is right that that person claimed more of their energy and attention than I did. But it did mean that I had to be on guard for mishaps, and assertive about what I really genuinely needed (and I had to know the difference between what I needed, and what I wanted).

But also overall, I really want to say that our little home machines with our own masks, fitted to us, are so much preferable to what the hospital can provide. I know it's been advocated in other threads to take your own equipment. My circumstances meant I landed there without my machine, but for anyone who can: definitely, positively, take your own equipment with you if at all possible.

[jnk]

Sorry you had to go through all of that.

Thanks for the post--very valuable info in that experience.

Please "bother" us with the rest of the unfolding story when and if you are ready and in a position to do so.

[newyorknative]

I am very dependant on my cpap. I would (for psychological/emotional reasons) find it very difficult to sleep without my machine and would probably not sleep all night as a result. Gary


[quote="RocketGirl"]So I ended up spending the weekend in the hospital after going to the ER with chest pain on Saturday. That story is still unfolding and I won't bother anyone here with it, but I thought I'd share some cpap-related observations of my experience. The "Message" part is just my take on learning from the experience.




6. Given the reason I was there in the first place, I was afraid to fall asleep without cpap. It was a source of anxiety surprising in its strength. Message: Heck, I'm not sure what the message is on this one. Does cpap engender a component of emotional dependency, or am I just realistic in understanding that my body needs it? I don't know! Your mileage may vary.

quote]

[hades161]

I agree on the being afraid to sleep without my Apap gear. I simply can not sleep without it. It's now so ingrained that the last time I went out of the house and ended up staying over at my brother's (he got to drunk to drive) I stayed up all night and waited most of the day for him to wake up and get sober. I can't lay down and breath comfortably and no way can I sleep that way. I honestly think that if something happened and I couldn't use my gear for a few days that I wouldn't sleep at all, I would end up sitting in a chair popping in and out of being sorta awake but not.

[redjoe]

Wow, you really got stuck between a rock and a hard place. I'm sorry you had so much trouble, and hope you never have a repeat performance.

[Otter]

5. The hospital cpap machine itself did not have humidification or warmth, so the air flow was pretty uncomfortable. My nasal passages got very sore very quickly, and I could only tolerate it for a couple of hours. The hospital air was also extremely dry. I asked about that, and the nurse explained that it is deliberate, that keeping humidity down keeps bacteria and mold down too. Message: given the need to keep humidity low, hospital-provided cpap may not be anywhere near as comfortable as our machines at home.

I question whether the rather remote danger of infection from a properly maintained CPAP humidifier outweighs the danger of infection from cracked nasal passages or an immune system weakened by lack of sleep or hypoxia.

I hope you are feeling much better and are home to stay.

[Sheriff Buford]

I have a list of "Cpap Equipment to Take to the Hospital" taped up on the mirror where I Keep my cpap supplies. I have reviewed it with my spouse, and she knows what to do.

Rocketgirl: sorry for your ordeal.

Sheriff

[Janknitz]

Sorry for your ordeal--I hope things are on the mend.

I think it's a good reminder to us all:

1. If you are single and live alone, designate a trusted friend who has a key and can go into your home and get the machine for you under such a circumstance. Better yet, designate two, because chances are the first person you designate will be away in Europe when you need him or her.

2. If you are married or live with others TEACH that person how to pack up the CPAP, particularly that the humidifer must be emptied BEFORE moving the machine (teach HOW to empty the humidifier), and include a checklist in the packing case so that you are sure to get each and every piece of equipment you need. No good having a CPAP machine if the cord or the hose is left behind.

3. If you have the time and forethought, TAKE your CPAP with you to the ER, because you never know . . .

[BlackSpinner]

Given the reason I was there in the first place, I was afraid to fall asleep without cpap. It was a source of anxiety surprising in its strength. Message: Heck, I'm not sure what the message is on this one. Does cpap engender a component of emotional dependency, or am I just realistic in understanding that my body needs it? I don't know! Your mileage may vary.

I ended up in ER last winter and felt the same way. Mainly because as soon as I dropped off my SPO2 dropped like a brick off the side of a building. I was shocked how fast it went below 79% just dozing off and i woke up choking. With all the antihistamines in my system it was hard to stay awake but after that first shocking drop I was wired.

I knew I wasn't staying in the hospital so I just sent for my daughter to come and accompany me home but if I was I would have sent her for my cpap machine.

[HoseCrusher]

Wow, a trip to the ER not only involves life threatening situations, but you have to be creative also. I am glad to hear that your creative juices were flowing enough to figure things out.

You survived!!!

I hope you never need to go back.

[nanwilson]

I have my spare machine and a complete set of what I would need sitting beside my bed in a clear plastic container. taped to the front of the container is a large piece (8 1/2 x 11) white paper which is typed in big red letters
..... EMERGENCY EQUIPMENT CPAP MACHINE..
TAKE THIS BOX WITH YOU
Also typed on the piece of paper is a list of my meds and the phone numbers of my daughter and granddaughter.
I am prepared...yes, I have been taken to the ER in the ambulance twice, and yes, my box went with me, the emergency tech noticed it right away and placed it on the foot of the gurnery for my trip to the ER.
Hope you are doing better and home with a good diagnosis.
Cheers
Nan

[Shellie_p]

Sorry for your ordeal--I hope things are on the mend.

I think it's a good reminder to us all:

1. If you are single and live alone, designate a trusted friend who has a key and can go into your home and get the machine for you under such a circumstance. Better yet, designate two, because chances are the first person you designate will be away in Europe when you need him or her.

2. If you are married or live with others TEACH that person how to pack up the CPAP, particularly that the humidifer must be emptied BEFORE moving the machine (teach HOW to empty the humidifier), and include a checklist in the packing case so that you are sure to get each and every piece of equipment you need. No good having a CPAP machine if the cord or the hose is left behind.

3. If you have the time and forethought, TAKE your CPAP with you to the ER, because you never know . . .

Excelent advice, I have a backup machine & mask, always ready to go, just grab up the bag and go. As this has happened to me a few times now, I find that also if i take my machine with me to the ER they don't tend to keep me as long. lol. I even took stickers, printed with my name on them and one that says. WATER CHAMBER(in red Bold letters) EMPTY BEFORE MOVING! cause once they changed my rooms after a procedure and the nurse who retrieved my cpap and clothes just stuffed it into a bag with water still in the humidifier. Thankfully it didn't damage it, cause at that time I didn't have a backup.
I also keep a couple of 20oz bottles of distilled water in the bag cause I've had nurses look at you like your nuts if you ask for water for your humidifier.

[jmcanzo]

Only problem is some hospital will not allow your home equipment in. I work in a hospital and have talked to one of our Resp therapist, The hospital I work at USED to allow home equipment, but had to change the rules and NOT allow it anymore. She told me the main reason was the home machines were so filthy, that nobody wanted to mess with them. So they now have a rule of NO home machines. She even showed me the extra new machines the hospital purchased, so they would have enough available.

[hades161]

Sorry but my machine is never Filthy and if I found that I couldn't use my Equipment I would insist on leaving ASAP and be transferred or released to a different hospital. To me it seems as though its just one more thing they will want to charge you for.

There also is no way to know what hospital gear has been exposed too. With my gear its my germs from my controlled environment. I know only I have used it, I know who has touched it, and I know my gear works. With 80,000 deaths a year in Hospitals from Nosocomial Infections alone ( http://silver.neep.wisc.edu/~lakes/iatrogenic.pdf ) I don't think my gear is more risky then hospital gear and they wouldn't even have to touch it as I would prefer them NOT too.

[jenn1270]

This thread has been a great reminder to me of what I need to pack for my husbands hospital stay for back surgery in a few weeks. I talked to one of the RTs who works in my end of the hospital and he said their policy was to use the patients since it is set up for them already. He said they would supply the distilled water so I won't have to take it.

Does anyone have any suggestions for to label it?

Jenn