Last nite I got out of the hospital. I was laying in my hospital bed Monday nite and decided that enough was enough. My buddy Jim had told me more than a week ago that I would need to find the strength to be proactive and be my own ‘advocate’ for my care. Well on Monday as I was laying there amongst the beeping, lights, and activity in the hallway I decided that I was gonna walk out of the hospital Tuesday nite, no matter what. I Emailed Jim of my intentions right then and it was done.
I’m walking out of this hospital Tuesday nite.Now this decision didn’t just come out of the blue. On Sunday AM my attending physician told me I was responding well to the anti-viral medication, he was right I was finally starting to feel a bit better. He said he’d have to refer to the ID (Infectious Disease) docs to determine how many days we would need to continue the anti-viral therapy. My infection is in the meningis, which lines the brain and spinal cord, and the anti-viral must cross the blood brain barrier. Taking the anti-viral orally doesn’t produce enough levels to do this so I would have to continue the anti-viral, for as long as the ID docs say, through IV. That same Sunday AM the doc also let me know that this drug could be administered on an outpatient basis or at home using a PICC line. Even though I’d never heard of a PICC line I was starting to feel better already. If you’re interested a PICC line is used to (self) administer IV medication, see this
link for more.
In my mind then the only remaining questions were, how
long do I need the anti-viral medication and what is the process for getting it?
On Monday I discussed the PICC line with my (resident) physician and he indicated he wrote the order. Cool we were on our way. Well my sister and I waited at the hospital all afternoon and no PICC line, no people even talking about a PICC line. I asked, they said the order was written. I didn’t care about a freakin’ order, I cared about putting the damn line in my arm to my heart.
I am sure this frustration, along with getting better to the point where being in the hospital made me sick, is what drove my Monday nite line in the sand.
Well on Tuesday morning I began pushing for discharge. It was odd to me that they weren’t wanting me out, not because I was being an A-hole or anything but because I wasn’t really making them any money by sitting there and recovering. I could do that at home. Win Win. I get to be home and they make another bed available. Well this didn’t seem to be happening. Beginning at 7am I began asking,
“when will the PICC line be put in?”The more I asked, the more things started to happen.
I must pause here to point out I feel as if I am a very empowered individual, but laying there for days (weeks!) with an IV in you and feeling bad really castrated me. Only with Jim’s urging, along of course with my recovery and feeling better, was I able to insist and take control. I think this is a very important part of the healing process.
I’m walking out of this hospital tonite.The PICC line went in at 10:30am and we were ready to go. There was the matter of the blood clot (allegedly because I still don’t believe I have a clot. I’m sitting here staring down my blood thinners refusing to take them… for now).
Now we had to coordinate home nursing to bring the anti-viral meds and ‘teach’ me how to run them through the IV line.
This necessitated a lot of moving parts be brought together. Finance, discharge planning, home care, insurance, nurses, and other folks that I probably missed among the myriad of people stopping by the room.
I’m walking out of this hospital tonite.We ran into an insurance nitemare, I will blog this later, but finally got thru everything and around 6:30pm learned I would be able to go home after my 9pm anti-viral treatment (I need them every 8 hours through the 23rd and they take about an hour each).
I was dressed and ready to go as we administered this last treatment in the hospital and at around 11:15 I walked out of the hospital in the same clothes I arrived in on the late afternoon of July 4th. My sis and I had a real time trying to get my scripts filled, we left empty handed because of insurance issues I’ll detail later, but at that point I didn’t care. I was leaving.
I walked out and was in my truck by 11:27pm. For the first time in weeks I felt like I’d accomplished something.