Today all of the physios and occupational therapists were back at work so it was a busy day.
The day started of with the cancellation of my home visit with the occupational therapist, which wasn't completely surprising as I commented in a post a couple of days ago. I haven't started with stairs and I need to get up seven before I can actually get into the house. I thought she still might have gone to check things out but apparently that is only needed if major changes need to be made. This started of the cascade of tears, even though I knew I couldn't go and for a little while longer while I explained why I am so upset about the whole thing.
I've always been a fan of keeping someone's expectations low and then over delivering so that they are thrilled by the improved time line. It doesn't work like that in hospitals. I will have missed two check out dates on Friday and this makes me feel like failure even though logically I know that the dates were unlikely to be met by any bilateral especially given the holiday period. (The second one might have been possible if it weren't for all of the public holidays) I was also down because no one could tell me what my interim goals are. I want to see progress and have something to measure by.
I need to know that something is happening and be involved with my own recovery plan. This can be the little things that change in my rehab program like adding in side stepping or marching or getting dressed without my husband's assistance or whatever, just so I know what the progression by smaller more achievable goals that I can take pride in what I have accomplished and used it as a means to stay positive and focused on the development path. I also need to know about what needs to be done at home before I get there. I need to regain control of my situation and have things to take charge of rather than being so reliant on others to sort things out for me. I don't like that and I don't think it is good for me. It makes sense to me and I don't understand why there isn't more patient involvement in the recovery process. I believe that ownership really is a big part of maximising the returns of the process. I mean where would I be now without the 'prehab' or without the second gym session each day, both things that I have done or pushed for myself that haven't been requested of me? Scary to think that I might not even be where I am now. How many more weeks in here would I be looking at?
In my gym sessions today we started on crutches. They aren't the easiest things to master, mostly because I am completely uncoordinated. This has absolutely nothing to do with the surgery. It usually takes time for my brain to figure out things like this the first time. I was a little wobbly and I think that I am going to need a fair bit of practice to be confident that I am not going to fall on my face but I am a little more positive about the whole thing than I was yesterday. I think that because things were starting to drag out so much longer than I thought they would I was starting to get a little afraid of how difficult things would be and maybe that I wasn't strong enough and I would end up injured. I think this links back to my earlier comments about involvement. If I know the path, I can deal with it. When I don't know what the hell is going on and what I'm going to do I end up dwelling on what I can't do and making it a much bigger issue that it probably is. I'm not sure if I am just a control freak with issues, or whether this is normal in the situation that I'm in now.
I needed a nap after this mornings session and woke up reasonably refreshed. This makes me happy for the sole reason that I have worked to capacity and had accomplished a lot more today. I went back down in the afternoon and had another go at it all and am tired again now so hopefully I should sleep well.
The OT came back again this afternoon and went through what she thinks the plan should be to work towards going home. She's pretty much in tune with what I think it realistic, as in the end of next week, and has started to plan to work with me to achieve that goal. We will be covering more functional things like actually getting by day today at home without having so much assistance with things like meals and being in an environment that isn't completely accessible.
I feel like we might actually be getting somewhere now.
Showing posts with label Patient Advocacy. Show all posts
Showing posts with label Patient Advocacy. Show all posts
Wednesday, April 27, 2011
Tuesday, April 26, 2011
18 Days Post Op: Bad Advice
I've had a rant in the past about being your own advocate. I was on that warpath again this morning after a 2:00am argument with a nurse, who told me to do something that clearly violates the 'Bilateral Hip Precautions' sign that sits on top of my bed. I could have done what she instructed me to do which some people would I guess but I didn't. It was bad advice and I wasn't going to take any risks with my new hips.
Basically she wasn't fit enough to assist me to get my feet in and out of bed and was trying to get me to put the stronger right foot under the left to move it off the bed. (I really don't require a great deal of assistance, it's down to gentle guiding as I am holding most of my weight now - at best guess from my best helper, when I'm tired it would be lucky to be a kilo and a half of weight). What she wanted me to do was in clear violation of the hip precautions as I am not to cross either foot past the mid-line. I have been given at least a dozen worksheets with pictures with large crosses through them that have people with crossed legs just in case I don't quite understand the concept. This shouldn't be anything new to this woman as this ward is for rehab and there are always hips being done here. Maybe there is only one bilateral a year, but even so, it's pretty clear as to what I shouldn't be doing. I said I wasn't allowed to do that and was given a bit of a sigh and at three am, I was silently screaming profanities in my head. If it hadn't of been the middle of the night and had my brain been in gear I might have been a little more eloquent about the issue than 'I'm not allowed' to at least explain, but in the middle of the night when you've just woken up and you need to pee, reason and alertness usually isn't present.
There is a reason for the precautions - it's to reduce the risk of dislocation. It's not just because I don't want to do it. I just don't want to end up back in surgery and starting this whole process again. I don't think my mental health could handle that.
Getting back into bed I had a minor panic and a 'you've pushed them too close together (my feet)' before we'd even got halfway there. I received a rather stern lecture about how I should do it so that she didn't have to so so much to assist with my feet in future. The way I have been doing it is fine with other nurses, wards-men and exactly as I was instructed by the physios but apparently that was too freaking difficult for her and I got told how her way was better because I'm too hard on the nurses. (almost a direct quote - it's better for nurses health if I can do it properly - though I have to wonder why the wardies prefer the physios way if it was physically harder - so I'm not sure what the go is other than she was a cranky ass who was physically unfit for the physical requirements of assisting patients) Not good for my mental health at the moment to be spoken to like that. I know that I am unreasonably fragile, but come on, she was unreasonably stupid and mean. I think that I would have been in better condition than her pre-op which really does make me question how she manages to do the job when there are people in this ward that require more assistance than I do. I guess she doesn't normally get the hard cases and probably wouldn't have answered the buzzer for me last night if my regular nurse hadn't been on her break. I didn't realise this though and when I awoke again at 5:45am and needed to get up to go again, I tried to fall back asleep until shift change so I could get someone else to help me out. When you start to think about needing to go though, it really makes it difficult to get back to sleep. I lasted about ten minutes, by which stage I thought my bladder might explode and I couldn't possibly wait another half hour, I buzzed again. It wasn't even as though I could even attempt to do it myself as the rails on the side of the bed were up and you can't put those down when you are actually in the bed. The nice nurse arrived and I nearly cried in relief. She assisted me out and commented on how much better I was getting and that I was almost doing it all on my own now. After getting back in bed, I passed out with relief, feeling a bit better about myself and my progress again. I had prided myself on becoming low maintenance to the nurses, it was something that showed how much I had progressed. I don't need that much assistance anymore, just in and out of bed, teds and meds and these things don't really take too long in comparison to higher dependency patients. Somedays it seems that the better you get at looking after yourself the more you get shafted (it's not just the gym, its now the grumbles at requiring one assist - even though my chart still says two assist).
The whole situation highlights once again how you need to understand what is happening to you and what treatment you require to ensure that the right processes are followed. Speak up if you think that something is wrong. People do make mistakes, it isn't always ignorance, stupidity or laziness where errors occur. If you know what should be going on around you there is an extra person there to pick up an error before it can occur. Disaster can easily be averted if you know yourself and your treatment and stick up for yourself.
I should note that on the whole, the nursing staff are excellent. There have been a couple of moments like this with one or two that really change the whole experience. It's a shame that poor organisation and a few people really unsuited to the job taint a group of truly extraordinary people.
Basically she wasn't fit enough to assist me to get my feet in and out of bed and was trying to get me to put the stronger right foot under the left to move it off the bed. (I really don't require a great deal of assistance, it's down to gentle guiding as I am holding most of my weight now - at best guess from my best helper, when I'm tired it would be lucky to be a kilo and a half of weight). What she wanted me to do was in clear violation of the hip precautions as I am not to cross either foot past the mid-line. I have been given at least a dozen worksheets with pictures with large crosses through them that have people with crossed legs just in case I don't quite understand the concept. This shouldn't be anything new to this woman as this ward is for rehab and there are always hips being done here. Maybe there is only one bilateral a year, but even so, it's pretty clear as to what I shouldn't be doing. I said I wasn't allowed to do that and was given a bit of a sigh and at three am, I was silently screaming profanities in my head. If it hadn't of been the middle of the night and had my brain been in gear I might have been a little more eloquent about the issue than 'I'm not allowed' to at least explain, but in the middle of the night when you've just woken up and you need to pee, reason and alertness usually isn't present.
There is a reason for the precautions - it's to reduce the risk of dislocation. It's not just because I don't want to do it. I just don't want to end up back in surgery and starting this whole process again. I don't think my mental health could handle that.
Getting back into bed I had a minor panic and a 'you've pushed them too close together (my feet)' before we'd even got halfway there. I received a rather stern lecture about how I should do it so that she didn't have to so so much to assist with my feet in future. The way I have been doing it is fine with other nurses, wards-men and exactly as I was instructed by the physios but apparently that was too freaking difficult for her and I got told how her way was better because I'm too hard on the nurses. (almost a direct quote - it's better for nurses health if I can do it properly - though I have to wonder why the wardies prefer the physios way if it was physically harder - so I'm not sure what the go is other than she was a cranky ass who was physically unfit for the physical requirements of assisting patients) Not good for my mental health at the moment to be spoken to like that. I know that I am unreasonably fragile, but come on, she was unreasonably stupid and mean. I think that I would have been in better condition than her pre-op which really does make me question how she manages to do the job when there are people in this ward that require more assistance than I do. I guess she doesn't normally get the hard cases and probably wouldn't have answered the buzzer for me last night if my regular nurse hadn't been on her break. I didn't realise this though and when I awoke again at 5:45am and needed to get up to go again, I tried to fall back asleep until shift change so I could get someone else to help me out. When you start to think about needing to go though, it really makes it difficult to get back to sleep. I lasted about ten minutes, by which stage I thought my bladder might explode and I couldn't possibly wait another half hour, I buzzed again. It wasn't even as though I could even attempt to do it myself as the rails on the side of the bed were up and you can't put those down when you are actually in the bed. The nice nurse arrived and I nearly cried in relief. She assisted me out and commented on how much better I was getting and that I was almost doing it all on my own now. After getting back in bed, I passed out with relief, feeling a bit better about myself and my progress again. I had prided myself on becoming low maintenance to the nurses, it was something that showed how much I had progressed. I don't need that much assistance anymore, just in and out of bed, teds and meds and these things don't really take too long in comparison to higher dependency patients. Somedays it seems that the better you get at looking after yourself the more you get shafted (it's not just the gym, its now the grumbles at requiring one assist - even though my chart still says two assist).
The whole situation highlights once again how you need to understand what is happening to you and what treatment you require to ensure that the right processes are followed. Speak up if you think that something is wrong. People do make mistakes, it isn't always ignorance, stupidity or laziness where errors occur. If you know what should be going on around you there is an extra person there to pick up an error before it can occur. Disaster can easily be averted if you know yourself and your treatment and stick up for yourself.
I should note that on the whole, the nursing staff are excellent. There have been a couple of moments like this with one or two that really change the whole experience. It's a shame that poor organisation and a few people really unsuited to the job taint a group of truly extraordinary people.
Saturday, April 2, 2011
Take Charge
I came across this article that was posted on the Arthritis Queensland twitter account:
Health system failing people with arthritis
The article talks about people suffering with arthritis due to the condition not being diagnosed in a timely manner and consequently the patient not being treated appropriately. The full report that the article references is located here.
Whilst I understand how this happens, people need to realise that they need to be their own advocates and if they aren't happy with a brush off or the answer that they have been given they are entitled to seek a second opinion and a third, a fourth or however many it takes to get an answer.
Doctors are human too and can't possibly know everything about everything. If you don't like to question your doctor, you don't have to. Find another one. You don't even have to tell the doctor that you are going to get another opinion. They don't need to know. If you go to a doctor that you don't gel with (or flat out hate which has actually happened to me once), just don't go back, no explanation is required, chances are they won't even follow up with you to ask why you didn't come back. I have tried out lots of doctors of all kinds and the ones I never went back to never called me to find out why I didn't go back.
If your GP suggests that it might be arthritis and sends you off to a rheumatologist, you don't even have to settle for the first one that you see. Get information, ask other health professionals, talk to the Arthritis foundation and see if they have any information days coming up (like this one next Saturday in Brisbane). Find someone that you think you can work with, someone that you can trust, someone with whom you can have open discussion with.
This is the information age. There is a wealth of information out there. Be educated. Understand what quality information is and don't assume that if it is published that it is true. I'm not suggesting diagnosis by Google but be aware and understand the process, the tests, the diagnosis, the medication and self management so that you can live the best possible life that you can.
Health system failing people with arthritis
The article talks about people suffering with arthritis due to the condition not being diagnosed in a timely manner and consequently the patient not being treated appropriately. The full report that the article references is located here.
Whilst I understand how this happens, people need to realise that they need to be their own advocates and if they aren't happy with a brush off or the answer that they have been given they are entitled to seek a second opinion and a third, a fourth or however many it takes to get an answer.
Doctors are human too and can't possibly know everything about everything. If you don't like to question your doctor, you don't have to. Find another one. You don't even have to tell the doctor that you are going to get another opinion. They don't need to know. If you go to a doctor that you don't gel with (or flat out hate which has actually happened to me once), just don't go back, no explanation is required, chances are they won't even follow up with you to ask why you didn't come back. I have tried out lots of doctors of all kinds and the ones I never went back to never called me to find out why I didn't go back.
If your GP suggests that it might be arthritis and sends you off to a rheumatologist, you don't even have to settle for the first one that you see. Get information, ask other health professionals, talk to the Arthritis foundation and see if they have any information days coming up (like this one next Saturday in Brisbane). Find someone that you think you can work with, someone that you can trust, someone with whom you can have open discussion with.
This is the information age. There is a wealth of information out there. Be educated. Understand what quality information is and don't assume that if it is published that it is true. I'm not suggesting diagnosis by Google but be aware and understand the process, the tests, the diagnosis, the medication and self management so that you can live the best possible life that you can.
Subscribe to:
Posts (Atom)