My friend is doing pretty well.
Her old doctor came in while we were there...he's retired now, and is busy hiking all over the world...he was so funny b/c he said just what I'd been thinking (but it sounds so much better when coming from an MD instead of me, the MD disliker)...he made mention of how he had to make sure that the UWMC wasn't, and I quote, "trying to kill you like before".
Ayep.
And they kinda are! She has had to toe the line for years, since getting onto the transplant list...appointments like crazy, tests, tubes everywhere, bone scans, shots (even though she has no spleen AND takes immunosuppressive drugs they seem absolutely mystified that she doesn't mount a defense and continues to not make antibodies...you would REALLY think they would be SMARTER than that and stop jabbing her OR JUST TAKE HER OFF THE IMMUNOSUPPRESSIVE DRUGS if they want her to have an immune response but of course that would kill her), she can't drink, she can't be around anyone if they are smoking anything naughty (an issue with her ex husband) etc etc etc...one toe over their line and you are OUT of their program, no liver for you!....
But now she's had a transplant and everyone has DISAPPEARED.
They are talking about discharging her on Tuesday, and they haven't taught her care team how to take her blood pressure, which they will have to do at home every 3 hours and log it. Her "team" doesn't have a phone number or name for the transplant coordinator...or at least they didn't until I cornered a nurse who was more interested in saying goodbye to some other patient than help a CURRENT patient.
They told her before 11am that they would be doing "ATG" at noon...after being directly asked "what on earth is that", by sister (who has NEVER asked that sort of thing before, yay sister!), we were told that it's an immunoglobulin treatment that's part of the anti-rejection routine...part of the "pre-med" for it is Tylenol...well my friend had a headache all morning, despite being on Dilaudid (which is, I've google-found-out, stronger than morphine!)...part of that is I'm SURE b/c they had her on glucose AND insulin until last night, but then didn't start giving her juice or a popsicle until nearly noon today...makes sense she had a headache, yes? So they told her that the juice etc would help, but to let them know if it continued...she's very "I want nurses to be happy and not troubled by me" so she WILL suffer and that's why she *has to be* surrounded by people who will speak for her and speak UP for her.
The headache continued...then she strangely told a nurse it was gone, but as soon as the nurse turned her back she started massaging her temples and forehead again...we asked if she was SURE her headache was gone, the nurse turned and said "I thought it was still there from your expression" and went to get permission to do the tylenol part of the ATG right then.
So that was at 1.
And as we were cornering the other nurse at 2, we had to wait until she was done talking to the pharmacy, b/c the ATG hadn't yet arrived. Over 2 hours later for something that is absolutely vital for her
life.
This is why she has to have people with her.
The nurse we cornered walked in at one point, just as Friend had clicked more dilaudid. She can handle HUGE quantities of that stuff but it also hits her like a speeding Mac truck, but the nurse started asking her something *important*. Friend mumbled something and we answered for her...I brought up the "question" of had Friend just clicked more medicine, and the nurse said "oh I thought I heard her do that"...and all I can think is "then WHY are you asking important questions as she nods off??????"
Anyway...Friend needs people to speak up for her but not make a big deal out of it. If she asks for ice, just go GET her ice, don't complain about them not bringing ice (that's friend's job, to complain about that). If she needs a popsicle, get her one. If she needs tylenol, go get them to give her one, don't just complain about it in front of her. Etc.
And as much as I complain when I am allowed to, I am that go-to person for her. I'm good at it.
She has now told me to come by whenever I wanted to. If I want to come by in the middle of the night, I am officially allowed to. I am going there tomorrow in the morning morning. I have now bought a notebook. I am leaving it there. People are to write questions they have and the answers they get. I will write what is new for her (like she got the catheter out today, is on dilaudid not morphine, had a tylenol at 1, that sort of thing) and leave the notebook there just so everyone knows what is going on. Because Friend doesn't remember from moment to moment what is going on, and canNOT be expected to remember everything or, frankly, anything!
I'm also getting phone numbers if I can, and finding out about the classes for her care team, and even if I have to bar the door, we're not letting her get discharged on Tuesday unless everyone is absolutely ready for it! Dagnabit!
AND her fabulous nice great boyfriend WAS NOT THERE this morning, though he said he would be!!!! And has a business trip from Thurs to Tues, but hasn't told people about it (I know about it b/c we were all going on a trip over Easter weekend (not anymore of course) and it was brought up in that conversation).
When we walked in, an hour or more later than we expected to be, I could tell Friend was upset...a little while later I apologized for being late and that it hurt her feelings so much, and she was astonished that I knew her feelings since she hadn't said anything. I just said "I could see it in your face, I know you were sad being alone"...I think that's what helped her remember what a help I am in those situations, 'cuz she can't hide stuff from me.
patting self on back
I'm going tomorrow morning and am settling in. Might bring blankets and stake out some space on the floor or somethin'. Hubby and son will hold down the fort at home. I have 48 hours (more, if anyone calls me back up there tonight) and I'm going to help out.
Warm and humid is bad enough. I hate the humidity of Florida. 
< --- me after all that soy, I will be stoked for an hour then nap attack.
