Friday, May 9, 2014

O Happy Day

I started today with great hope for a 10:30 "discharge meeting" which went horribly wrong. I thought we'd talk about the details of my departure and I had written down questions in a notebook, but instead they said I couldn't be discharged without a sleep study, and the sleep study took at least one week to set up.

When I was at Lennox Hill, they wanted me to wear a c-pap (if that's how to spell it) machine as one of the doctors thought I had sleep apnea. It made me claustrophobic and I could not do it. So I refused the machine. The c-pap directive followed me here and they said in this meeting that they can't discharge me without a sleep study for the cpap (which has sat in my closet here for 5 weeks)... the respiratory therapist says she does not think I have sleep apnea, and neither do I. 

I was in a Catch 22 -- either I stay an extra week plus and get the sleep study and you all know I am  really at the end of my emotional stamina here... honest to god. I can't just accept the cpap which I'd be willing to do -- I'd even buy the blanking machine to get out of here, but the machine to take home needs a prescription and they can't do a prescription without a sleep study.  

If I leave "AMA" (against medical advice), I am cut off from everything, including prescriptions, the walker I was taking home and home care. I don't care about the walker as I could buy my own. I care slightly more about home care (meaning PT) but I am confident that I can live independently. Plus I have tremendous support of people who will stay with me. The thing I can't live without is the prescriptions. Mainly high blood pressure kind of things -- and I do NOT have a primary care doctor to write the scrips because of the affordable care act my insurance was canceled so I started a new insurance in January so I have not yet gotten a primary care physician. 

I was caught in the teeth of the medical bureaucracy. the head of PT could only give me high grades and I had been told I had exceeded all goals they had for me and medically all my numbers are good. Luckily, I had another visit with the psychologist -- again I really like her -- and she is on my side and I said I am unwilling at this point to just accept that I had to stay here 2 to 3 more weeks.
The social worker was supposed to tell me this afternoon if they could substitute some kind of pulmonary test for the sleep test and she hadn't shown up by 4. So I had the nurse contact her, and she said she'd talk to me before she left. I was absolutely despondent.
I had decided that I was not going to do anything until I heard what the social worker said. I planned to call my health insurance company and tell them -- so odd to be on the side of the health insurance crooks! Or as my sister said, "{name of health insurance company} would tell them to throw your butt out."

The social worker came by to say they realized that the cpap "had been discontinued" which means I CAN go home on Friday, with prescriptions, with a walker, with home care, with one exception. I have one remaining bedsore which measures 1.1 by 2.2 centimeters. I have to appoint a "wound care specialist" who can be a family member or friend. I named Phil.
Ok, here's where it gets bizarre. Phil has to come for wound care training. I called him and told him I have good news and bad news. The good news is that I am going home on Friday... Ok, so the bad? I said, "You are my wound care specialist and you have to have training."
I know I'll be paying for this for a long time in teasing. Phil was going to come home with me anyway for the weekend and help me get settled. I asked if Phil had to file reports or sign things or anything and the answer is no, just have training. It didn't occur to me that his training might be on my real butt. I told him that if the price I pay to get out of here is mooning him, I'm willing to pay the price. And here I thought I had no dignity left, but we keep finding new depths to deny me dignity.
I am planning on going home in an ambulette which means I sit in a wheelchair and they raise it and lower it into a van. I chose that as the no-worry solution. I could take a regular car service but I worry about getting in and out of a car. My sister and her husband said they'd drive me home, but they have a mini-van. Easy to get out of (swing your legs around and stand up) but harder to get in. Or I could be "medically transported" which means on a stretcher in an ambulance which is big bucks. Hal told me he'd pay for the ambulette and I found this great company and called for an estimate... it's $345 plus $50 to use their wheelchair. So I am grateful for that.
I can taste that egg drop soup now! Please say a prayer or whatever you do that no snags develop and Friday remains my day of freedom. If I physically could click my heels, I would. I can not wait to be home. Something is really wrong with this system.


Melissa said...

Amen sister! You need to write about this when it is all over!! Friday is on the horizon and it's beautiful!

Mary Jones said...

Yay! Yay! Yay!

The system is a mess, I agree. And you should write about it and possibly open some eyes.

I have sleep apnea and have had a CPAP machine for about 5 years...and I don't go anywhere without it. I suspect that my sleep apnea played a part in the two atrial fib incidents I've had, so my CPAP is my friend.

It takes some getting used to wearing the mask and it's not very romantic, but I do sleep much better. if there's a chance you have sleep apnea, I'd recommend being a different time and place. Sleep apnea causes high blood pressure and lots of other health issues because your organs aren't getting a good supply of oxygen.

Okay, enough of the "lecture." I'm so happy to hear you are going home soon!