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  • Kimberley 2:35 AM on May 26, 2012 Permalink | Reply
    Tags: bacterial infection, , , UTI   

    Right… That’s the Real Reason 

    I have a bacterial infection that is not being treated and I’m 99.99% the UTI I had a little while ago either didn’t go away or I have another one. I just had another catheter done because I really don’t feel well and only had 50 mLs.

    The reason I’m feeling like this has nothing to do with either of the infections though according to one of the nurses. I’m feeling sick because I ‘shouldn’t be drinking soft drinks ‘ (I drank a small cup full of Root Beer today) and because I’m ‘sleeping in the days and not at night’ because my sleep schedule is fooled up.

    It doesn’t matter that I’m tortured at night when it’s quiet here with thoughts of what is happening to my body, how much worse it can get, how no one is helping me etc. or that I hurt too much to sleep. It also doesn’t matter that lately I’m too scared to sleep at night because when I do I wake up unable to breathe in because the spasms are crushing me. In the day time there are always nurses coming into my room for things, but at night I am left alone. When I wake up because a spasm is squeezing me so violently I can’t breathe and I ring for a nurse (who can’t do anything about it anyway) there is usually a long wait.

    How can I sleep with all of this on my mind? Why doesn’t anyone understand?

  • Kimberley 1:29 AM on May 26, 2012 Permalink | Reply
    Tags: , , ,   

    A Very Close Call 

    I just came extremely close to an ambulance being called to take me to emerg.  After over two hours and three lots of attempts three nurses were finally able to do a catheter.  No wonder I was feeling so horrible. I had 950 mLs!

    I’m getting my Suprapubic catheter on June 4th, so here’s hoping it doesn’t get worse in the next nine days!

  • Kimberley 10:39 AM on May 25, 2012 Permalink | Reply
    Tags: ,   

    A Date for the Surgery! 

    I have a date for the Suprapubic Catheter placement.  The surgery is booked for June 4th.  We are still waiting to hear back about the details, like what time the OR is booked for etc.

  • Kimberley 11:43 PM on May 19, 2012 Permalink | Reply
    Tags: ,   

    What Is a Suprapubic Catheter? 

    If you read my last entry, you know that in the very near future (the next couple of weeks) I will be having surgery to have a Suprapubic catheter placed.  I thought I would share a video that William created that explains a bit more about what a Suprapubic catheter is, and shows us his.  He is a C5/C6 quadriplegic (I’m a C6).

    • Chloe 4:11 PM on May 21, 2012 Permalink | Reply

      Good video. I have a friend, complete T9 paraplegia, who has used a suprapubic catheter for all of the two decades I have known him. He recently declined a Mitrofanoff, because the suprapubic works so well.

  • Kimberley 8:01 PM on May 19, 2012 Permalink | Reply
    Tags: , , , , , , , , , , , , , Suprapubic Cystostomy, , ,   

    The Suprapubic Catheter Surgery is Going to Happen! 

    I’ve been meaning to write about the Urology appointment I had on Tuesday, May 15th but I just haven’t had the energy between the UTI I’ve had, taking Gravol every six hours and the spasms.  If you remember a post I did a while ago, I talked about how the doctor here told me that the Urologist wouldn’t be doing any surgery or anything else about me not being able to do catheters.  The Chief of Staff finally got involved, and he put in a consult himself for me to speak to my Urologist myself and that appointment finally happened on what was supposed to be my discharge date, Tuesday, May 15th.

    The nurses managed to do a catheter after breakfast and helped me get dressed, put my brace on and got me up into my wheelchair so I could take Duke out before the GoBus arrived.  This was the first appointment I used the bus for.  An ambulance picked me up all of the other times I had to go to the hospital for various appointments, tests etc.  I went outside with Duke and my escort, who also happens to be one of his favorite nurses came down and met us a short time later.

    While we waited she walked around a grassy fenced in area near the patio with Duke.  It was a really nice, warm day.  We didn’t realize until we were about halfway to the hospital that we were on the wrong bus!  GoBus is a door-to-door service, and it turns out the driver was suppose to pick up another patient and another bus was suppose to pick us up!  Usually the driver asks who you are, or I ask if the bus is for me.  This time no one asked anyone!  It worked out well though because my appointment was earlier than the other patient’s and they weren’t around when the bus came.

    When we arrived I let Duke sniff around some grass outside in the shade while the nurse went in and registered me, then we went to the Urology clinic to wait.  Now, something you should understand about this nurse is that she always comes in and talks to Duke in a high pitched baby voice when he’s not working.  He ‘talks’ back to her, and they have fun playing around.  As we waited, every time they made eye-contact Duke would start to whine a bit.  He sounded exactly like the squeaky door that led to the clinics, so I told him to be ‘quite’ more times than I needed to!  He protested his ‘friend’ not paying attention to him by laying down and cuddling with her foot.  I have to say the two of them were pretty much on their best behavior though lol!

    The nurse stayed outside when I went into the appointment, which is a good thing because there is only one big room, and it definitely wasn’t the one I was in!  The nurse who showed me to the room had to move two chairs out of the way just so I could fit.  Duke decided that he would lay down and patiently wait now that his ‘friend’ wasn’t with him.

    The Urologist came in a short time later and we discussed different options in detail.  Apparently he was told that I was having ‘a bit of difficulty doing catheters’ on my own, not that it took up to five nurses to do them, if they could pry my legs open enough to do them at all.  He was especially taken aback when he found out that I’ve gone up to twenty three hours at a time between cathing because it just couldn’t be done!  It seems the doctor from the rehab just didn’t give him all the information.

    After discussing the fact that something needs to be done he said that he would do a Suprapubic Cystostomy, which will create an opening to my bladder just above my pubic bone.  A catheter will be left in and it can either drain into a variety of bags, or can be pugged and unplugged whenever needed.  This is being done because we don’t have the time to plan for and do any of the other options right now.  He said his main concern right now (obviously besides allowing me to pee) is to get me into my apartment and not a nursing home!

    This surgery is going to be scheduled as soon as he can.  He had to speak to the Anesthesiologists first because he wasn’t sure if they would be comfortable with putting me under general anesthesia because of my spasms and breathing issues, but when the patient care coordinator came in to see me on Friday evening she read some of his reply and after discussing it they didn’t want to do a local anesthetic because of my spasms, and have decided to take me to the OR and do general anesthesia.  He’s in the OR on Mondays, but this Monday is a holiday (Victoria Day), so it looks like it might be the next week instead (providing the nurses can continue to do caths until then).

    My Urologist is going to refer me to another Urologists who has a lot of experience doing other, more permanent surgeries, but he is going to soon be away for six months.  He deals mostly with Pediatrics, but also has experience doing surgeries on adults.  Then we will talk about other options so I will be able to do in and out caths through either my belly button, or through the same hole as will be created during the first surgery.  These other surgeries are a lot more involved (they are pretty major, invasive surgeries).

    For now, the suprapubic catheter will allow me to pee and although we know my TLSO (back brace) will interfere with it and I might not be able to wear it unless it can be modified in some way, it’s something that has to be done.

    I left the appointment feeling very relieved!  I don’t like the thoughts of surgery, but I’d rather have it done than not done at this point.  Not having it done is the only thing that’s stopping me from moving into the condo I got recently.  The equipment still has to be sorted out, home care workers still have to be trained (and some more possibly found), but those are all things that are being worked on.

    It was warmer when we got outside.  The nurse helped me take my zip up fleece off and I tilted back and relaxed in the blazing sun outside the hospital as she took Duke around a patch of grass like she promised him.  A woman stopped by to ask if Duke was ‘the dog from the Miller Centre’ (this happens often) and we all chatted until the bus came.  She was more than a bit disappointed because she was getting a different GoBus than us and wouldn’t get to ride with Duke!

    We got back just after lunch, and I took Duke over by the Veteran’s building to pee and ended up spending a long time out on the front step of the rehab chatting with Terry Kelly‘s aunt.  You never know who you are going to meet around here!  She’s very nice.  I was gone so long one of the nurses said that she was just talking about me as I was going back to my room.

    Within no time at all the manager came into my room to see how my appointment had gone.  The day before she had asked me what I was going to do after the 15th (the next day) because it was supposed to be my discharge date.  When I explained that the Urologist was going to do the suprapubic catheter surgery she responded by letting out a very high pitched ‘oh!’ and quickly leaving!   Needless to say, she didn’t seem to pleased that her excuse for stuffing me in a nursing home was gone!  I told her and the social worker that they were wasting their time filling out the paperwork without my permission, but just as I told her they were breaking the law by not allowing Duke, my guide/service dog to stay and work with me and I wouldn’t stop until he was here, she didn’t listen…

    • Ellen 9:02 PM on May 19, 2012 Permalink | Reply

      I am SO glad to hear this! It’s about time (way past it actually). Finally, someone with a brain and actual human feelings has listened and done something in a positive direction to get you back to some kind of independence again. Two by the sounds of it I am hoping. I have to wonder though what it was that got the Chief of Staff involved.

      • Kim & Duke 10:23 PM on May 19, 2012 Permalink | Reply

        Thank you Ellen! I knew my Urologist would do something if he knew what things were like. The problem was the doctor here spoke to him and obviously left some very important details out. I can tell you what got the chief of staff involved. The regular doctor here thought she could get him in here and he would back her up so I would back down, give up and go the nursing home route.

        She got him in after I planned on going to the emergency dept. at the hospital to have a doctor there see me. At the time (and up to now) it took four to five nurses to pry my legs open enough to do a cath. This causes spasms to shoot up through my body and it feels like someone is ripping my insides out, I can’t breathe and I spasm so much it’s impossible to even get the catheter in at times (or the spasms pinches it off if it is in). It’s gotten worse since then. Now this happens, plus I have bruises all over my thighs from nurses’ fingers and scratches from the catheter trays because my legs can’t be forced open enough for the trays to fit. More times than not, they just have to give up and try again later. They have instructions to deal with Autonomic Dysreflexia after it happens and can’t do anything to prevent it (besides trying to do a catheter).

        After telling me that if I did go to emerg I wouldn’t be allowed to bring my charts with me, no one would be allowed to go with me (although I’m not allowed to go anywhere alone because it’s deemed too dangerous) and that they would both say it was against medical advice I said I was going anyway.

        That’s when the chief of staff said what if they spoke to the Urologist and got another consult? Once I told him that’s all I had been asking for for months and that the doctor who got him to come see me (and who was also standing in the room) said that it wasn’t going to happen because she wouldn’t allow it they went away and he came back a few minutes later telling me that he had put a consult in!

        So, by trying to get him to back her up he really saw what she was doing and I got what I needed. To say her plan backfired would be quite an understatement!

        • Ellen 7:13 PM on May 20, 2012 Permalink | Reply

          heheh I so love it when stupid people shoot themself in the foot – with a shotgun. 🙂

    • Chloe 4:01 PM on May 21, 2012 Permalink | Reply

      Hope this all goes well. Should be possible to drill a hole through the TLSO, right?

  • Kimberley 4:12 PM on May 7, 2012 Permalink | Reply
    Tags: , , , , , , , , ,   

    No News Yet… 

    It’s been ten days since the last Ethics Committee meeting regarding my lack of care, and I still haven’t heard anything about what happened there, or what’s being done about the situation I am in.  The Psychologist stopped by my room earlier today and asked if it was OK for her to talk to a pastoral care person who wanted to talk to her about me.  I trust her, so I said it was fine.  Neither of us are quite sure what it’s about.  The Ethics Committee person also works in pastoral care, so maybe both things are connected in some way.  She said she would try to find out more about the results of the meeting for me too.

    Other than that, it still takes three to five nurses to get my catheters done because of my muscle tightness and spasms and instead of treating the spasms or letting someone else treat them, or even doing surgery that will allow me to do my own catheters again, the papers to go to a nursing home are being filled out against my will.  This is how Eastern Health deals with medical issues.

    Today I slept mostly because  I was awake until after 4AM feeling horrible because the spasms are wreaking havoc on my bowel program.  Something that use to take about twenty minutes has turned into an hour an a half long process (if it works at all).  I also managed to take Duke out for a walk around the parking lots before supper.  I can’t sit up for long because my hip has issues.

    Will the doctor see me tomorrow when she does rounds?  We will see.  She’s suppose to, but she skips me often (like last week).  If I find out more about the results of the meeting I will post an update.  I’ve given up all hope that Eastern Health will somehow grow some common sense.  At this point, I just hope I can survive to get out of here and find a doctor who cares enough to sign a referral paper so the doctor in BC can help me.

    • Chloe 4:52 PM on May 7, 2012 Permalink | Reply

      It’s looking like getting out of that place is the only possible avenue to receiving appropriate health care. Unbelievable!

      • Ellen 7:27 PM on May 9, 2012 Permalink | Reply

        If they don’t kill her first. That’s what really scares me here. With the way they are going it could happen.

  • Kimberley 8:50 AM on April 29, 2012 Permalink | Reply
    Tags: , , , , , Mitrofanoff, , patient rights, Psychology, , ,   

    The Surgery I Need to Survive Is Not Going to Happen 

    At 3:30AM the nurses were finally able to do another catheter.  I haven’t been drinking much at all, partly because it hurts so much to swallow now, but mostly because I know if liquid goes into my body, it has to come out somehow.  I had 800 mLs, which is a lot for me (I usually have around 200 mLs), but the last catheter was done at 8:30AM yesterday.  That’s a 19 hour gap.  This has been an ongoing issue since last Thursday.  The doctor knows about it, and so does the Urologist, but neither of them are doing anything to resolve the problem.  Why would I expect them to when they let it get to this point without doing anything to help?

    So, now it takes two to four nurses to pull my legs apart barely enough to fit their hand between my thighs to do a catheter.  This causes spasms to continue up into my torso (I can feel the ones that happen inside me there) and leaves me not only in excruciating pain, but also unable to breathe as the spasms ravage my diaphragm.  I have barely eaten anything in a week because swallowing hurts so much and as mentioned above, I only drink enough to keep the headaches caused by dehydration at bay.  It also hurts to breathe, but that’s something you absolutely have to do to live.

    Almost two years ago, when I started having issues with being able to open my legs up enough to cath the same Urologist sat down with me in his office and we discussed my options.  After explaining to him how indwelling catheters (catheters that stay in all the time) are ripped out with the balloon still inflated after mere hours of staying in causing bleeding and leaving me peeing constantly for about a week after, he said that it wasn’t worth the damage it was doing and that it was no longer even an option.  Of course this all made sense.

    He explained that the out of all the options a Mitrofanoff made the most sense. It’s a surgery where part of my bowel would be used (your appendix is usually used, but I don’t have mine) to create an opening from my bladder to my belly button or to an area on my abdomen. I could then do catheters through this newly created hole (or stoma). While he was doing the surgery, he would also take another section of my bowel and enlarge my bladder so it could hold more. This way I could cath less often, and the chance of urine backing up into my kidneys is diminished. This was something to think about and plan for in the future when it got to the point where I was having a lot of difficulty with catheterizations.

    Well, now it’s well beyond that point and my doctor here wants me to have an indwelling catheter put in even after I explained the how it rips out when I spasm. She claims to have spoken to my Urologist and claims that he will not do the surgery because of the complications that could be caused by the spasms when using general anesthesia. I never got to speak to my Urologist myself. I still think it’s rather odd that he suddenly changed his mind and agrees with whatever the doctor here is saying. She has a way with making every other doctor agree with her and getting her own way, no matter if it’s best for the patient or not.

    I would still like to know why I wasn’t able to have a conversation with my Urologist and why I can’t , being of sound mind evaluate all the options and decide what’s best for me. Don’t I have the right to outweigh the benefits and risks for each option and if I see fit accept the risks of the surgery if that is the option that is best for me? What ever happened to patient rights around here?!

    According to the doctor, I ‘made the choice to die’ because I won’t let her put an indwelling catheter in (just so it can be forcefully ripped out of my body within a couple of hours and the nurses can continually keep trying to put another one back in) and because I refuse to take medication that causes me to lose the ability to use my arms and makes me so groggy I can’t even safely move around my environment or work with Duke. (This happens with a small dosage that doesn’t do anything whatsoever for the spasms it is supposed to treat.) It’s back to the same old ‘do it my way, or I will make your life a living hell’ routine that this doctor reverts to frequently.

    When asked what happens when it gets to the point where the nurses can’t open my legs enough to empty my bladder at all, she said that after I get Autonomic Dysreflexia (which is a life threatening condition), then an ambulance would be called and I would be taken to Emergency and have surgery to do an emergency Suprapubic catheter. This surgery would involve using part of my bowel (without properly cleaning it out), no bladder augmentation and having a catheter stay in. This would mean that I wouldn’t be able to wear the brace I finally recently got after waiting seven years for! Isn’t it better to plan for and prepare for a surgery that is much needed and the best option and do it right instead of doing a complete hack job because of an emergency situation when it could be prevented?! Will I even make it to the hospital and into surgery if they wait for the AD to start?

    She said that if I wanted another opinion I had to find another Urologist and make an appointment with them myself. I told her I needed a regular doctors referral for that because a Urologist is a specialist and she just said ‘no’! I explained that the last time I had to have my regular doctor refer me, and she wasn’t having any part of the conversation.

    When I explained that I wasn’t ‘choosing’ to do anything, because I wasn’t actually given a ‘choice’ her temper just rose. When I explained that to make a ‘choice’ you need at least two options she just kept repeating that I was ‘choosing to die’ and in the end said ‘and I’m sorry you feel that way’ (about needing two things to make a choice) before storming out of my room in her usual fashion. Both the patient care coordinator and the Psychologist were in the room during all of this.

    During this whole ‘meeting’ the doctor also kept telling me that I would not be going to Vancouver for the surgeon there to fix my spasms, and that no doctor in the entire province would be referring me! I didn’t even mention Vancouver as I was more concerned about the whole cathing issue.

    When she left, I found a list of Urologists and spoke to a very nice secretary at one of the Urology offices at the hospital and after explaining the situation to her she said I would definitely need a referral and wished me the best of luck. The problem is as long as I’m here in rehab, the doctor I mentioned above is considered my ‘family doctor’ and makes all of the decisions about my care (or lack of care). In order to get another family doctor I have to leave the rehab, but I can’t leave until the cathing situation is sorted out because the home care agency can’t work with me if I need so many people in order to do a catheter! The rehab’s solution to this is to put me in a nursing home, even though I finally found an accessible condo, signed a years lease, got the home care sorted out (mostly) and the only reason for the nursing home would be because no one is willing to do the surgery I need (or to allow the doctor who can fix my spasms to do so)!

    This is why the Ethics Committee meeting was held on Friday.  Let’s hope some common sense comes out of it!

    • shay 11:20 AM on April 29, 2012 Permalink | Reply

      Interestingly enough, a few week ago I came across a video that covered a successful bladder reconstruction surgery that was conducted at UCLA, which is where I receive my care (thankfully). I don’t know you at all, but I’ve loosely followed your story over the past few months, and I really hope that you get the care and the surgery that you need. Here’s a link to the video. Good luck to you…

    • Chloe 5:04 PM on May 3, 2012 Permalink | Reply

      Somehow I just have faith that you will find a way to get all the surgeries you need, not just to survive but also to regain your independence. Perhaps it’s simply that I believe in your persistence and determination never to give up. I wish I could do more than fill the role of cheerleader!

      Thank you for posting that video, Shay. That seemed like a very positive outcome.

  • Kimberley 9:36 AM on April 27, 2012 Permalink | Reply  

    Yet Another Ethics Committee Meeting 

    There’s an Ethics Committee meeting at 2PM today about how my ‘dr.’ here is not allowing anyone to treat my spasms and about her and my urologist not doing the surgery I need. (Without it, it’s literally a death sentence.)

    This is the 3rd time since I’ve been here that the Ethics Committee has had to get involved to force the doctors and management of the rehab to allow me even my basic patient and human rights…

    • Ellen 9:12 PM on April 28, 2012 Permalink | Reply

      Have you heard any results from this meeting yet?

      • Kim & Duke 5:20 AM on April 29, 2012 Permalink | Reply

        No Ellen, not yet. The ‘Committee’ seems to be one guy who will go home and write up his ‘suggestions’ and bring them back. This is, of course after only meeting with the people who are causing all of these problems and not myself. I’ll be sure to update things when I know more. Hopefully I’ll have good news for once!

  • Kimberley 5:06 PM on April 12, 2012 Permalink | Reply
    Tags: , ,   

    The Home Care Part of the Plan is Falling Into Place 

    I contacted another home care agency today called Compassion Home Care.  The person I spoke to left me feeling very hopeful that they could get someone for the hours I needed (30.5 hrs per day), and I told her that I had a meeting with my social worker about 45 minutes later and we could call her back to go into more detail about my needs and the care plan.

    After discussing things in length with her, I feel really confident that things are going to work out well!  She was extremely nice and friendly and answered all of the questions I had.  They are all about working out what works best for their clients instead of their clients having to work around what best suits them and I’m really glad I found them.

    Next week the girl I was speaking to is going to come meet with me, along with their head nurse and maybe another girl.  We will go over a rough care plan (she said it will be about three months before everything settles down and gets tweaked into something that works best), and once the home care workers are found they will come in and do training.

    There is still a lot left to do before I can be discharged (including getting all of my equipment), so that won’t be for a while yet, but this is another piece of the puzzle that seems to have fallen into place!

    • Chloe 5:34 PM on April 12, 2012 Permalink | Reply

      It is always heartening for me to see things moving forwards with you, even though there are setbacks once in a while.

  • Kimberley 10:52 PM on April 2, 2012 Permalink | Reply
    Tags: , , , , , , , ,   

    My 300th Day in Rehab 

    My 300th day of rehab is nearing an end.  I didn’t realize I had reached this mark until one of my favorite nurses mentioned it this morning as she was doing my vitals.  It didn’t surprise me.  I knew I was nearing a year (it’s been 338 days if the hospital stay is included), and the time has been dragging on.

    I got a phone call from the real estate agent just before lunch asking when I could sign the lease for the condo I looked at a while ago.  He said he could come by for me to sign it if I wanted him to and we agreed to meet him here at 1PM.  To mark my 300th day in rehab, I signed a lease to a beautiful condo in a part of the city that is close quite a few amenities!  Now the only thing left to do is wait for everyone else involved to get their act together and get all of the home care and equipment sorted out so I can actually move in…

    Shortly after the real estate guy left, the physiotherapist came in to do some post-Botox stretching.  He still doesn’t notice a difference and keeps commenting on how unbelievably tight and spasmy my muscles are.  I’m noticing that my back is starting to relax though.  The replacement part of the brace that was ruined should have been here today too, but it didn’t show up.  Hopefully it will be here soon.  Let’s hope it works out well this time around!

    So to end off the night, Duke and I had a cuddle and although I’m tired I know I will end up spending more time browsing the internet and watching TV or a movie until I’m too tired to function again.  That’s just a given…  Then I guess it’s on to day 301 (or 339)…

    • Chloe 1:50 PM on April 3, 2012 Permalink | Reply

      Aw, the photo of you and Duke together totally melts my heart. The two of you are so beautiful and loving.

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