Well, I went to Stanford for the Pre-transplant evaluation. The trip did not turn out like I had planned. It was supposed to be four days of testing with me returning home on Friday. I was planning on giving a full run down on the pre-transplant testing process when I returned home. That has been postponed for now.
Things did not go as predicted. The first couple of day went fine. I was feeling pretty good. Not run-a-marathon good. But walk around without gasping good. By Wednesday night I was vomiting. Thursday I was sent to the ER with a fever of 102.4F and a heart rate of 145 bpm.
It was a little intimidating being sent to a hospital that I am unfamiliar with. I am used to going to a hospital where my doctor has pull. He's the type who will meet his patients in the ER and start issuing orders for patient care right away. So not having him there had me a bit anxious. I didn't know how the doctors were going to be.
Since I was in Palo Alto, I was sent to the Stanford ER, not the UC Davis ER. The ER staff was very good and worked hard to diffuse a stressful situation. I was sent to the Peds section of the ER since the peds doctor was the ER dr who was familiar with CF. They had a flat screen TV in the room with movies. In the hall was a cabinet with stuffed animals and colouring books (it was locked of course). I was sent for X-Rays, Ultrasounds, and blood work to find out what was going on. By evening, I had stabilized and was sent to a private room on the Cardiac ward for observation.
I was nervous about being sent to a floor, since quality of care seems to change according to the ward you are on when it comes to being in UC Davis. So I wasn't too sure about Stanford Hospital.
The care on the Cardiac ward was great. Someone came to check on me regularly, and call lights were answered in a timely manner. I was very satisfied with my care on the Cardiac Ward.
Friday evening I was moved to Stanford's CF ward (where I am currently). Yes, Stanford has a CF ward. Davis doesn't even have that. And CFers get offered two massages a week during their stay! Pretty cool. So far I have not been disappointed by the quality of care provided by the staff. If my nurse is unavailable to answer my call an assistant comes in to handle my needs.
I actually have a view from my window. Not just some bare walls and some wires. I can see trees, grass, and sky. From the Cardiac ward I could see the fountains. I have a flat screen TV in the room. The resolution isn't top notch, but it is better than other TVs I have seen during my many hospital stays. Patients are provided with Movies on Demand, internet access, games, and cable all from the TV provided. Pretty nice set up.
RTs don't complain when you ask for manual CPT. And they don't complain about how much time your treatment takes to complete. Treatments only occur during waking hours unless you really need a night treatment. That's more of a doctor decision than an RT one. It is kind of nice being able to sleep through the night though.
Housekeeping asks your permission before coming in to clean. It's not like I'm going to say, "no," I like having clean room, it's just nice having someone ask before invading my privacy.
The staff always knock before entering. It gives a small feeling of control over my environment.
The doctors seem competent. They don't act stuck up. And they definitely don't act like the Dr. House. But they keep that boundary between doctor and patient, which I find frustrating. They don't act arrogant about it, but they have this idea that I should listen to whatever they decide without my own input. So it's a little annoying.
I did insist that the Stanford doctors keep my own doctor in the loop. He knows my record and what's the best course of care for me. If they don't want to truly listen to me, I hope that they listen to him. Else they will end up finding out how much of a problem patient I can be.
Monday, I will be doing a PFT. Hopefully, it'll turn out well and I'll be allowed to go home. While I have been treated quite well here, I would rather be somewhere familiar. Besides, I miss my dog.
Sunday, April 18, 2010
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