postop visit at 10 wks

[junosand]

reply to golfnut - 2

toughing it out in my case probably caused 3 extra days in the hospital, to belabor the point; make sure you get some sleep, DEEP MEANINGFUL sleep, not restless 10 minutes at a time; if you don't then you are insufficiently drugged; in any case, but especially if you are in a room without outside windows as i was, keep yourself oriented to day and night; keep up with what time it is; ask for lights on all day, lights off at night

if possible, have a family member or trusted friend at your bedside 24/7 to be your advocate

try to get out of there as quickly as you can; hospitals are actually dangerous places for infection and the inactivity and lack of control are soul destroying; if you aren't confident enough to go home, you can stay at the Parkway Hotel for another few days, a week, or as long as you want (attached to the hospital by indoor walkway) and rehab as did LisaB in more comfort and freedom; with the prescriptions, you can do your own pain management

to get out quickly, as kelly told me, get moving as soon as you can; when the PT person shows up the next day and tells you that you can stand up and take a few steps, you won't believe it (i didn't) but you CAN; don't refuse this, TRY it, at least;
this piece of success was the only high point of my hospitalization other than leaving;
after this, walking around the floor was easy; i did it much more often than asked, it didn't hurt and it was nice just to get out of that damn bed

the other discharge metrics are eating and pooping; you will have absolutely no appetite but when the tray come you just force yourself to put something down; they will stuff you with laxatives (in my case 3 different ones) to take care of the rest

i will be very anxious to hear how you do; it will probably take weeks after getting home before you feel up to posting and we will all understand this; if you have any other specific questions before your surgery, feel free to ask on the forum or by private message

[golfnut]

Thanks for not sugar coating it. I don't think I would be opposed to going to rehab. or the Parkway Hotel, but do I have any say in the decision as to when I would be ready to leave the hospital and if I could go home, rehab., or the hotel? Fortunately, Waterloo, IL is only 30 miles away, but would not want to go home prematurely and end up in ER. I will definitely try whatever is asked of me.
Thanks so much.

[Jacque's Mom]

Medications in Hospitall

"I don't think they took into account how habituated i was to start with from the 40 mgs of oxycodone i had been on daily for over a year preop (percoset 10/325 4 times a day)".

JUNOSAND: this was a huge concern of mine as I have been in pain management for eight years and have been on 10 mg of Methadone twice a day for the eight years, along with Celebrex, which I am now off of. My concern was how are they going to get my pain under control if I'm already on a narcotic for so many years and prior to surgery. In September I had an appointment with Dr. Boachie, and he said he wanted me off the Methadone. I called my pain mgmt doctor immediately, and he didn't think it was nec'y so he called Dr. B. and they came to the conclusion that I should stay on it. Dr. Wang, Pain Mgmt at HSS, is a very good friend of my pain mgmt doctor so that was great. They spoke a few times prior to surgery, and he visited me twice a day for the entire stay I was there to make sure I was okay with my pain level. In order to get my pain under control they did the following: They increased the pump medicine (don't ask me to what, I have no idea), and after that was disconnected, increased my Methodone to three times a day, and added 10 mg Oxycodone 2 tablets every 4 hours. That seemed to do the trick. Oh I knew when the next dose should be coming, but they really got my pain level under control. Now that I'm home, I am on the Methadone three times a day and the Oxy I am taking it every six hours or so and NOT waking myself up during the night to take it. This is just the last few nights I've been doing this and it's been working. I know that once I am off the Oxy, then the fun begins getting off the Methadone that I've been on for so long. I'm a little anxious about it, but have complete confidence in my pain mgmt doctor. He's a wonderful, caring person. I realize it will take some time for me to be off of it completely, but that's okay with me. It's been such a long journey, what's a few more months when I know what the outcome will be.

It goes to show, every person is different in their recovery process, but in the long run hopefully everyone has a successful outcome. I wish everyone the best. LYNN

[junosand]

reply to golfnut - 3 & jacque's mom

i would let them know that you WANT to leave as soon as able; since carbondale IL is only 100 miles from STL, i went straight home; the Parkway is another option for those who live far away or not sure; you have the absolute right to leave at ANY time (maybe AMA = against medical advice) but it's doubtful you will have any disagreement with them; if so, it's a negotiation with you getting the final say

which segues into jacque's mom's post, i.e. i should have discussed the pain management in detail with kelly beforehand; i assumed they had so much experience with pain that it wasn't necessary; wrong

[golfnut]

Junosand,
How can I get a pain management Dr.? I get the feeling that Kelly is the one in charge and sweet as she is when I have expressed my concern about too much or not enough pain meds., she says that everyone is different. I know that is true, however, I don't have any experience with pain meds and it worries me.

[Heidiv2]

Golfnut,
I definitely think that you should call and start with Kelly at Dr. Lenke's reain management. Push for them to address it prior to surgery. Also, keep a loved one at your side 24/7 for the first few days to advocate for you/ keep track of when things are due, be there when the doc visits (5-6am if Kelly hasn't told you yet-wasn't that right Junosand?). I agree with Junosand that I expected the famous BJH to have a "pain management team" and they really just had residents on call (which they did call for changes for me) but the dilaudid in the PCA the first few days didn't really help me as much as when they took me off it and started the percocet, oxycodone, flexeril and valium orally on a schedule. The dilaudid made me feel weird but didn't take away my pain as much. Of course, I didn't realize this until they switched me over.