Re: [QUAD-L] Mitrofanoff Procedure

[Stacy Harim]

I don't blame those of you that are quads to fear going into the hospital.  When I left the critical care unit after a month, I was still unable to move or talk.  I even had C.N.A. sit with me because I couldn't push the call button.  I often woke up to find her asleep or not in the room.  Unfortunatly I didn't know what was going on around me enough to complain b/c I wasn't really sure why she was there.  I look back now and realize what was going on that I wasn't aware of at the time.  Anyhow, I got some pressure sores that weren't very pretty.  I didn't fall completely but I did fall in between the bed rail and the bed while being turned to get cleaned up.  I couldn't talk so I wasn’t able to direct my care.  Hopkins is supposed to be one of the best hospitals, but I guess that means only has some of the best doctor's.    When I was finally able to start talking, I was able to speak up. When I got to rehab at Hopkins, they gave me a really good air mattress so turning me wasn’t an issue.  When I got into the next rehab facility I wasn't on an air mattress anymore.  Every time I woke up in the same position I was in as when I fell asleep, I started complaining.  It still wasn't working.  I asked for the nurse supervisor and it worked for a little while. I ended up complaining to my therapists, they in turn complained and finally there was a sheet to be signed next to my bed that the aides has to initial every time they came in to turn me.  The complaining and finally able to direct my own care freed me of problems.  A lot of the aides weren't crazy about me because they wanted to do things there own way, but hey, it's my body.    I am very fortunate and able to move my upper body so my fear is over now.  I know this time when I go in the hospital, I am taking my alarm clock with me so I don't have to count on the nurses to wake me up to turn or whatever.  I have learned my lesson.   Sorry for the story book, Stacy ----- Original Message ----- From: Lori Michaelson To: Quad Sent: Wednesday, December 29, 2004 2:44 PM Subject: Re: [QUAD-L] Mitrofanoff Procedure I seem to be getting more infections every year.  Unsure if you guys keep track of WHAT BUG you've had but I just had a culture result show "Proteus" (sp?).  My initial symptom was fever (always is).  The Dr first had me on Amoxicillin.   After 7 days I had a follow-up lab test despite no fever.  But major sediment.  The office called saying they were not going to put me on an antibiodic for, ya know, resistance.  Which I totally agree with.  Bladders with foleys are usually colonized with E-coli or others.  I was going to go ahead with their decision.   But hubby insisted I call back & ask WHAT was growing.  With my hubby knowing microbiology and bad bugs ... when he found out it was proteus he insisted I be on something immediately.  There are 4 bad bugs that microbiologists call THE BIG FOUR as they're deadly.  Salmonella, Shigalla, Pseudemonas (certain strain) and Proteus.   I was put on a new antibiodic and it cleared stuff up.   I'm afraid to have surgery or go into hospitals because of all the fuck-ups on me already and recent stories of Dr fuck-ups close to home (family, friends, acquaintences).   Lori  -------Original Message-------   From: Stacy Harim Date: 12/28/04 15:38:39 To: B. Kimberlin; quad; River Wolfe Subject: Re: [QUAD-L] Mitrofanoff Procedure   The down side of the suprapubic is having to still wear the bed/leg bag.  I want to rid that all together.  Also I am not concerned with my hospital stay this time.  When I was a quad and unable to turn myself, I had a few but since I am able to turn myself, even though I just sleep on a different side each night which works, I don't have any fears of pressure problems.   Stacy ----- Original Message ----- From: River Wolfe To: B. Kimberlin ; quad Sent: Tuesday, December 28, 2004 5:32 PM Subject: Re: [QUAD-L] Mitrofanoff Procedure hi, I have seriously considered this surgery, as an indwelling foley in the meatus is so troublesome over time. I also really would like to swim, mithrofanoff is the only thing aside from intermittent cathing through meatus, that will allow me to swim (according to my Dr.). After some serious consideration, I am choosing to have a superpubic instead. My partner doesn't qualify for "family leave" to care for me while in the hosp and recovering at home, so we can't even consider the possibility that she could get time off. I don't relish the idea of having my internal organs messed with unless absolutely necessary. Not to mention being in the hospital for 10 days. Ironically, hospital care is the most dangerous care there is for us. No turning help, BP assistance is poor, infection is twice as likely...blah blah. They just don't have the time or concern that family members have, and that we need. My opinion, you choose what's right for you. River On Dec 28, 2004, at 5:05 PM, B. Kimberlin wrote: The women I have known that have had this procedure took some time to recuperate fully.  You might want to consider the summer break. Billy Stacy Harim <[EMAIL PROTECTED]> wrote: I was supposed to get the surgery in January, but it doesn't look like the timing is going to work out.  I am thinking about spring break but still not sure.  I was told I would be in the hospital a week.   Stacy ----- Original Message ----- From: [EMAIL PROTECTED] To: quad-list@eskimo.com Sent: Tuesday, December 28, 2004 4:58 PM Subject: [QUAD-L] Mitrofanoff Procedure Thanks Liz for the update on this proceedure.  Having a doctor that has performed a number of these precedures instills more confidence in the consideration of having it done. W In a message dated 12/28/04 3:13:44 PM, [EMAIL PROTECTED] writes: << I am a c6 and use self contained caths.  I refer to them as pee-n-toss. I self cath through a stoma in my belly button.  There is no apparent "flap". it looks the same as it did before surgery.  I have some scarring but it has faded.  My doc used part of my intestine.  They also may use your appendix. Talk to your surgeon and tell him you want to talk to HIS patients that have had the procedure. It's a big surgery. At least 10 days in the hospital. >> Do you Yahoo!? The all-new My Yahoo! – What will yours do?