I was at work today and have had a couple of conversations with my workmates about my knee and my concerns regarding when or if I can get it sorted. The pain is constant now and I have been advised that I need a full knee replacement.
Now, I only saw my Orthopaedic Surgeon a week or two ago and he sent a referral in to the hospital for me to be put on the waitlist for a knee operation. He appeared to indicate that I could expect a letter soon from the hospital saying I had an appointment to discuss the possibility of having the operation to replace my knee. When I spoke with him, he seemed to infer that I should only have to wait a few weeks to a month before I was seen. After that he said it might be a couple of weeks, to months before I had the operation.
The other day I rang the hospital waitlist people to try to find out when I might be able to have my operation. The person who answered my call stated that I had only had my referral in for about two weeks and that it was much too early to have any kind of answer. She also said that I would probably not receive an appointment to discuss the possibility of an operation and from there go on the waitlist for knee surgery for at least six months. After that time, I was told there would probably be a six month wait period before I could have the operation. So there I was after expecting a much quicker answer to my referral and possibly an operation soon, being told that basically not much of anything would happen for a year. Certainly not the best news!
My colleague heard me on the phone and asked me if I was OK. I told her it looked like I would have to wait at least a year. I started to get upset and she offered to take me for a coffee so that I could have someone to talk to and also get myself together before I had to go back to work.
I went home at the end of the day and I was in tears telling my husband that I would probably have to wait a year. With the constant pain I am experiencing, I don’t know if I can cope with continued pain for 12 months! We started talking about options and whether we could find the money if need be to pay for the operation ourselves. With cost being an estimated $30,000 for the operation, that sort of money just isn’t something we can find easily – if at all – so I’m not sure what we can do.
I was talking about it at one stage with some of my workmates and they chided me, saying ‘you’ve only been on the list a couple of weeks!’ and ‘my husband had to wait years’ etc, etc. I get that. I really do. I get that people think I am unrealistic and that I shouldn’t expect to get my operation in any less time and that others are waiting too.
The thing that they don’t appear to understand is that I have Parkinson’s! It is a fact that people with Parkinson’s should exercise regularly and have a good workout several times a week, to keep the Parkinson’s under control. While I have this incredibly sore knee, I basically can’t even walk around the block without significant pain. I can’t ride my bike. I can’t go for walks with my husband. Or run around with my grandchildren. Basically, I can’t do much of anything that involves standing or walking!
My big worry is that because of the impact on my mobility of this knee issue, that my Parkinson’s will progress more rapidly and I will be declining in my mobility much sooner than I should. My Parkinson’s does not currently cause me any mobility issues, but how long can I not be active for before the Parkinson’s deterioration kicks in due to the fact that I can’t really exercise? That is my biggest fear! I know it may sound selfish and I know that there are others waiting for knee operations, but this is starting to seriously affect my mental health and wellbeing. I can’t cope with the idea of this constant pain but more importantly it will be so upsetting if my Parkinson’s speeds up because I am not able to do the exercise needed to keep it under control.
Simple things that I would normally do to manage my Parkinson’s symptoms I can’t do right now. One is the Parkies exercises. Most of them involve some form of lunging and I can’t do that at the moment. The other thing – which is pretty basic – is that I usually try to ensure I swing my left arm as I walk. This is the Parkies affected arm. The problem is, I have to hold my walking stick in my right hand and my work folder in the other hand and that means I don’t have my left arm free to be able to ensure that I swing it. If I stop swinging my arm, that will be a deterioration that is directly caused by my knee situation. I have to carry things and I only have the option of using my walking stick in my right hand and so I have no option but to hold things in my left – my Parkies affected left – so this is a concern for me.
Not sure where to go from here, but will try to get my GP and my specialist on board and hopefully they might be able to do something to help.
I really hope so. 😦
My journey with Parkinsons 