Getting started on my story...

I am a mid 50's year old woman with vibrant red hair. My partner Peter and I live in a small rural area of Central Hawke's Bay in New Zealand. We have a lively puppy (Lewis), many hens and guinea fowl and we spend a lot of time tending our trees and lifestyle block.

View of our land in summer

I work from home as a health sector consultant. I have a policy and management background and have been working in the health sector since the 1980s.  My particular health interests are in health consumer engagement (back in the 1990's I was involved in the follow up of the Cartwright Inquiry, the development of the Health and Disability Commissioner's Act and the  Code of Health and Disability Services Consumers' Rights, and the development of the Stronger Consumer Voices and Consumer Collaboration of Aotearoa). So I am really interested in finding ways for health consumers to be actively involved in managing their care and making informed decisions. In former jobs I have been involved in the regulation of  health professional bodies (both as a policy adviser and as a registrar of a number of allied health professions), so I know a lot about the importance of quality improvement and professional standards.

I have also spent the last 15 years involved in developing, promoting and implementing evidence-based guidelines. In NZ I was the first Chief Executive of the New Zealand Guidelines Group and I was also one of the founders of the Guidelines International Network. 

Most of the work I now do is providing advice on evidence-based guidelines, implementation of evidence and health quality improvement.
When I am not working, I love to spend time with my dog, cook inventive food (including making my own cheese) and hanging out with my chickens.
I also have osteoarthritis in my knees. 

I have decided to write this blog as a way or recording my experiences as an informed health consumer embarking on a total knee replacement. I hope that some of the information I have collected and some of my experiences will be of assistance to other people considering how to manage their knee pain.

Knee replacements are pretty major surgery - and so I have no work commitments for the next three months - my only commitment is to my recovery from surgery and becoming "bionic". I feel vibrant and energetic - I just need a new knee to feel awesome. 

I have a family history of osteoarthritis (OA) of the knees and I have over the last few decades also had a number of falls and twists that have caused a degree of pain in my knees.  To manage the pain I have been working on the two most effective things I am told that a person with osteoarthritis of the knees should do - lose weight (About 5 years ago I lost 25kg and I have lost 10kg in the last few months) and exercise.

About 5 years ago I went to see a very nice Hawkes's Bay orthopaedic surgeon for advice about my knees. He reported that I had OA in both knees (worse in the Right than the Left) and we agreed on a management plan based around pain medication, physical activity and ongoing weight loss.

That approached worked reasonably well for a few years and meant that I was able to do most things (not always with grace and elegance) but I could still walk our dog Morse, go to the gym, help around the farm and go about my work and social activities. 

Morse

I have been managing my knee pain and discomfort reasonably well for the last five years or so - but this last eighteen months has been really hard.

The more I exercised the sorer my knees got....(yes - I was doing exercises that are recommended for OA)...so sore that most nights I couldn't sleep without writhing from the discomfort of the exercise. Going for dog walks was ok - mostly because my very old dog was just as doddery as I was. So when my old dog Morse died this time last year it was a bit of a relief as I didn't have to go out on walks. 

My trusty bike 

Without my old friend Morse, I took up cycling and started cycling the bike trails around Hawke's Bay. It is such a beautiful region of New Zealand and the trails are usually flat and safe and travel through vineyards and orchards and swoop along the coast. Cycling was a great way to get around and made me feel active and strong. But pretty soon it got so that a 35km/ 2 hour bike ride would take two or three days to recover from. This was due in part to the fact that my right knee won't straighten and so I can't easily push down on the pedals.





Over the last 8 months or so, even "normal" everyday things have started to be a challenge. For example:

• I find I can't stand and talk to people for more than a minute or two. It is pretty embarrassing - people like chatting while standing up - especially at conferences and business meetings where I have most of my interactions with clients. In the past I have been invited to give presentations at conferences and workshops. Last year I had to give a series of presentations of up to 20 minutes a time - standing at a lectern in front of an audience. I was too proud to take along my walking stick or to ask for a chair - choosing instead to increase the doses of painkillers and grin and bear my way through. Not being able to stand for any length of time also makes it hard to go out and pitch for work - a rather critical activity for someone like me who is self employed. I also tend to avoid social occasions that involve lots of chatting and eating standing up or going to the Races or bars.

• Waiting in queues and international travelling is hell - if I have to stand still for any length of time my knees seize up and I can't move...so waiting at the bank when the computer system crashes - or waiting at Immigration at an international airport have become heroic activities.  Just last week I was caught up in a line at the post office and when I got up to the counter the nice guy behind the window casually asked "how are you today?"  He was pretty shocked when he could see I was barely holding back my tears because I felt so sore and uncomfortable and had I had broken out into a ghastly sweat. The sweating is also a bad look when you are standing in front of an Immigration Officer at an Airport!! 

• I absolutely love cooking - but now I find that my cooking has gone way-downhill - I don't have the patience to do anything complex. Cooking for a dinner party is a huge effort. I have to sit on a stool in the kitchen to look after something cooking on the stove top. I have to sit to do most of the food preparation like peeling potatoes, grating cheese and drying the dishes. I now understand what my mother went through when I was a teenager when she had osteoarthritis. For several years all our meals were burnt. I regret now that I didn't understand then what she was going through and what an epic effort she made to continue to cook while in pain.

• My walking has become very limited. When I walk, my knee bones grind and creak. It is hard for me to walk up and downstairs without holding onto a rail or the wall.  Despite being fairly fit (I have been going to the gym or swimming pool most days of the week for the last three years) I find I can only walk about 1km.  Last year Peter and I decided we couldn't live without a dog in our lives - so along came a new puppy, Lewis.  

  

  Lewis

  Lewis , a Long haired Weimaraner, is incredibly large and exuberant and he loves to walk and play - so Pete has primary responsibility for walking him for about 3 hours a day.  My fabulous physio friend, Vanessa, has advised me to use walking poles (and to lift my knees to the clouds when I am walking) and this makes dog walking a lot more manageable. However it is really interesting to watch people's expressions subtly change when they see the sticks in my hands. From my point of view the sticks are fantastic - they give me "lift-off" - a boost that my knees can't produce - and I can highly recommend them for anyone with sore knees.   My difficulty walking has also severely hampered one of life's idle pleasures - window shopping. Thank goodness for the internet as most of my family got Christmas gifts I was able to order online rather than things I would usually have scoured the shops to find. I also tend to go shopping in places where they have shopping trolleys so I have something to hold onto (so this might explain why I tend to frequent only Briscoes and supermarkets).

Other things I will briefly mention that I find hard include:

• the pain in my right knee exacerbates my right ankle (which also has some arthritis). This means I use my left knee - which is also arthritic - has to work more and it becomes sore. With two sore knees and a sore swollen ankle - I tend to use my hips to move - and this means that I now have a sore right hip... I don't even want to ask if that hip is arthritic!!!
• not being able to sleep through the night
• not being able to sit down on a toilet seat without carefully lowering myself down by holding onto the walls
• having my knees seize when I am bending over - eg putting wood on the fire. This causes me to lose balance and fall forward (eg onto the firebox)
• forgetting to take my pain meds. Peter finds this very hard too!!! Not only is it painful - I find it hard to keep a civil tongue in my head. I need to take my pain meds 4 times a day - and if my timing is interrupted or I forget then it takes a day to get back into a tolerable state.

In May 2015, I decided something had to change. I made an appointment with my Wellington based GP and asked her to refer me to a Hawke's Bay orthopaedic surgeon for a review of my knees. The nice guy I went to back in 2011 was on an extended holiday so I made a booking to see another knee specialist (recommended by friends) to ask him about my knee management options.

Being a bit of an enthusiast for evidence-based practice and informed consent - I spent about a month preparing for the appointment, going through Cochrane reviews, decision aids, evidence-based guidelines and journal articles to find out the most likely range of options to discuss at the consult. (I will write a separate blog with links to the information I accessed).

The questions I had prepared were:

1. Has the OA in my knee/s progressed too far to manage by non-surgical means?Are both knees equally affected? 
2. What is happening with my ankle? Is the OA able to be re-mediated? 
3. Is my lumbering gait going to impact on my hips and ankles? 

Are any of these Non- Surgical options viable for my knees?

•       Improving analgesia
•       Ways of reducing inflammation – do I have a Baker’s cyst? If so, can this be drained?
•        Cortisone
•        Weightloss and targeted physical activity /physiotherapy. If exercise what is the best type of exercise – duration and intensity?
•        Prolotherapy
•        PRP – platelet rich plasma injections
•        Hyaluronic acid – visco-supplementation
•        Braces/ strapping

If require I surgery, what are the best options?

•         Implant of a load absorber eg KineSpring Implant?
•        Partial knee replacement/ TKR?
•        Partial resurfacing?
•        Osteotomy?

If surgery is recommended, how many of these types of operations do you do annually?

• What are your revision rates and how do they compare with others?
• What is the satisfaction of your clients with reduction of pain after 6 months and mobility/ stability?

Well - that was a pretty abortive appointment. He didn't want to talk about the items on the list (I see you have been "googling" he observed!). He had two key points: 

• I am too young for a knee replacement - wait 10 years. He said I could only ever get two knee replacements and that younger people wore the implants out quicker than older people - so he preferred to operate on people over 65 years.
• Lose more weight. He advised the paleo diet (so immediately his credibility plummeted).

He said there was no additional pain relief that he could offer - that exercise would have no benefit and that I shouldn't darken his doorstep for another decade.

That was a pretty bleak encounter. So I got back onto the weight loss regime and got madder and madder. Actual I was furious, enraged and especially annoyed because a lot of what he was saying was wrong.  The data for knee replacement revisions only relates to older models of the implants. Every year there are newer improvements and modifications to the implants - but their longevity can't be proven because they haven't been in existence for many years. 

Not only was the surgeon unpleasant and wrong, he seemed to have no regard to my quality of life or the things that mattered to me.  

Documents I had read before the appointment advised that current approaches to pain management recommended interventions to improve tolerance for functional activity and quality of life.  His approach was not consistent with either the Australian Prescriber approach nor the NICE osteoarthrisits guidelines (which recommends a holistic approach to OA assessment and management  as well as pain management that could include paracetomol, topical NSAIDs and the addition of opiods if necessary. In my opinion, he would benefit from reading patient oriented information such as those published by the BMJ  on "What your Patient is Thinking".

I simply couldn't contemplate what my life would be like as my knees, hips and ankles degenerated over the next ten years. All I could see was a bleak vision with me becoming completely unable to move without assistance, we would have to move away from our small farm, I would be unable to work or to travel, I would have no money to afford the surgery in 10 year's time, I would have no social life and I would be a complete bitch to live with. He seemed to want to impose his view that it was worth me suffering while 54 for 10 years so that I could have a good quality of life when I was 65.

After being really mad (and depressed) for a few months and talking to some of my Australian buddies who have been doing some work on the evidence for OA of the knees, I decided I needed to get some further advice and booked another appointment with my GP.  I think I completely stuffed up her Monday morning appointment schedule - but during the course of that rather long and emotional consult we developed a new plan of attack: - increased analgesia (1000mg naprosyn pd, paracetamol and codeine as a backup) and weightloss...and then after a few months if that didn't improve things then referral to another specialist. The second opinion appointment was at the end of November 2015 in Wellington. 

The new orthopaedic surgeon was a completely different kind of person. (This time I selected the specialist after seeking the opinions of three different people - all of whom recommended him as someone they would trust to listen to me and to help with my knee pain. I was also pleased to see that he was a member of the NZ Joint Registry Board which signaled to me that he had a strong interest in quality improvement and safety issues). 

His first questions were about what I did for a job and what my issues were with my knees. He had read all of my notes in advance and he was not in any way dismissive about my questions.

In his view - my Right knee was never going to improve - it was about as bad as it could get. The difficulties with my right knee created the problems with my right ankle and hip and also my left knee. We talked through all of the non-surgical options but in the end he recommended a total knee replacement (TKR) of my right knee. And the surgery is scheduled for 29 January 2016.

Over the last months I have been following a "pre-hab" programme that my fab physio friend, Vanessa, has developed for me. It is mostly oriented around aqua-jogging and water based exercises along with other exercises designed to improve my posture and range of motion. Vanessa has also been great to talk to about pain management. 

....So ...Bring on the Total Knee Replacement!!

While it all seems a bit daunting right now with less than a week to surgery I thought I would use my time to start writing a blog about my experiences as I go through surgery and recovery.

Here are some of my goals once I have what I refer to as my "bionic" knee (You can tell I was a big fan of the $6m man back in the 70s )...

1. Walking with Peter and Lewis on the beach
2. Reducing my reliance on pain medications
3. Going on cycling and other adventures
4. Being able to help around the house - even though that will involve close contact with the vacuum cleaner and moving firewood!
5. Being able to travel and speak at conferences
6. Walking the streets and stairs of Venice (I am always astounded at how far you have to walk and how many steps there are in such a small and gorgeous city). I might even have more fun than I did when I was last there in 2012...watch this space