My Total Knee Replacement (Knee Arthroplasty)

My early birthday present this year was a bionic knee. My surgeon will tell you very clearly it is NOT a bionic knee: the Australiam Orthopaedic Association clearly advises, “After knee replacement you cannot run, squat, kneel, crawl or play twisting, impact sports“. So not very bionic, but I like the idea.

Warnings re this article.

  1. It is long. Very long.
  2. Your experience may be very different. Each body is unique. That’s why the title includes “My”.
  3. I do try to inject some humour into the proceedings, otherwise it is a very dry topic.
  4. There are wound photos, but none of them are gory. I forgot to ask the team to take gory photos.
  5. This is written from the patient perspective (obviously) and no, not everyone gets praise (most do) – there are some bouquets and brickbats at the end.
  6. I do not name hospitals, doctors or medications.
  7. This article deals with the period of hospitalisation and rehab. I will write a second about being home (and continuing physio).

Background

We will call this knee Lennie (for left knee). Just to bring newer readers up to date with Lennie, back in 2014 it started being a little on the grumpy side. I had a Synvisc shot as an experiment and it worked well, but knee replacement was initially discussed back then. In October 2019 Lennie got really grumpy and I had fluid drained and a steroid shot. Temporary relief. By the end of January 2020, Lennie had me in hospital for five days. A cyst dissecting my popliteus muscle was discovered. At first it was thought that could be removed, but two eminently qualified orthopaedic surgeons said “No.” Mr T, the surgeon I went with, did explain a little more comprehensively. The view was the inflammation was so bad I’d simply develop more cysts. The time had come.

I was shocked. I had been expecting keyhole surgery to remove a cyst. NOW I was looking at rebuilding Lennie. Slightly more major event. Psychologically this was challenging for me – I WANTED to be able to manage the osteoarthritis (being careful here to distinguish from my psoriatic arthritis, different conditions) with exercise and strength and physiotherapy. Yet I had to admit this was not going to be a happening thing: Lennie was just a little too damaged. No matter what we did, Lennie would rage.

Once I made the decision, I was raring to go. Let’s get this show on the road. We had to time surgery around my drug trial injections. Surgery was booked for April 8, 2020.

Preparation

This is not surgery undertaken lightly, let me tell you! After the consult with Mr T to agree to let him cut out some of my bone and insert some metal and plastic bits and pieces I then had a schedule.

  • Consultation with a physician, Dr M
  • Blood and other tests
  • ECG
  • Visit with hospital staff re post-surgery planning
  • Another pre-op consultation with surgeon

Dr M’s job was to make sure I was healthy enough to survive surgery. He was also responsible for my post-operative welfare in hospital. I spent an hour with him, lovely guy, very thorough. Pulled prior medical tests from my various other specialists, including the cardiologist. More on THAT a little later – because I got a little surprise.

Dr M also ordered me to stop some medications I was on. This is very patient specific but I can tell any women of my age reading, it includes stopping (temporarily) HRT. Also verboten were anti-inflammatories. This is fun when you have a rather inflamed knee and are still trying to walk three kilometres a day and do exercises to keep your muscles “recovery ready”.

Then Covid happened and everything got cancelled. I did however still go and have the blood tests and ECG. The plus was I could go back on anti-inflammatories and HRT (temporarily)!

During this time my left ankle was becoming more and more painful until one morning I absolutely could not weight bear at all. I was convinced this was all tied in with Lennie’s misbehaviour, as from my January hospital excursion I had been unable to control that foot. Mr T was unconvinced, but I also did not explain to him (my patient oversight) the specific loss of foot control I was experiencing. The 4 second video below illustrates what I could NOT do with my left foot.

FINALLY and fortunately and I am forever grateful I GOT A NEW SURGERY DATE! May 20, 2020. Back off the anti-inflammatories and HRT. This however meant my knee was swollen and painful. My GP worked out a pain management regime so I could keep moving. As always, I was very nervous about this as I didn’t want to develop a tolerance to medications and have pain medications not be as effective as possible post-surgery. My GP assured me I wasn’t taking enough, or for long enough, for that to happen. By the last couple of days pre-surgery, I was in considerable pain and not a very happy person.

May 16 – not at the most swollen, but just a snap I sent to my daughter

Due to Covid, the hospital appointment mentioned earlier happened by phone. I also needed another (updated) lot of blood tests, which I had done at the hospital on May 8.

I had groceries delivered the day before surgery, changed the bed linen, did all the laundry and the dishes and cleaned the fridge. All I would need when arriving home was fresh milk and fresh fruit.

I was VERY happy to arrive at the hospital at 6 am on May 20, after starving myself from midnight.

Surgery Day

The very first thing I was required to do was have an antiseptic shower. I was first on the theatre list. The anaesthetist popped in to see me, the assistant surgeon dropped in, Mr T popped in to draw on my leg (the big black arrow from my ankle you will see in a later photo). I commented to him I’d love to watch the surgery. I think he was a bit surprised. His response was it was a worksite and I wouldn’t “want to hear all the swearing”. I figure I’d have talked too much anyway, asked too many questions: I’d have distracted them from the task at hand.

Dr M popped in at some stage, I forget exactly the sequence of events now, BUT he blithely informed me I was going to the HDU post-surgery. The conversation went a little like this.

Dr M: You’ll be going to the HDU post-surgery.
Me: What is the HDU?
Dr M: The High Dependency Unit
Me: WHY? I’m healthy as an ox, I just have a bung knee!
Dr. M: You have a nocturnal AV block.
Me: …………????????

I had no idea what a noctural AV block is, or that I actually had one. My recollection of my cardiological investigations was I was pretty damn good on the cardiovascular front, just every now and then my heart would miss a beat, nothing to worry about – I certainly don’t still see a cardiologist! Unless, it seems, you are having fairly major surgery. As I write I still do not know much about the mysterious nocturnal AV block, but I’ve been busy concentrating on my knee. I’ll find about the AV block later (that’s going to be delegated to my trusty GP).

By 7:30 am I’d seen four doctors, been drawn on and discovered I had something that was sending me to the HDU. I also mentioned to the surgeon and the anaesthetist that it had occurred to me I never research the anaesthetist, despite the number of surgeries I’ve had. Check out the surgeon, yes, but then just trust him/her to pick an anaesthetist that will keep me alive! I just found it interesting.

My daughter and I had agreed they would not visit on the day of surgery as I might be a bit “out of it”. As it turns out, the day of surgery I was fine, would have been a great day to visit! Day 1, when they did visit, I was “out of it”.

I woke up to be greeted by this.

Now when I say I could feel nothing, that’s exactly what I mean. Nothing! I could not move the leg at all, it was like a lead weight, seriously. It was also cocooned on a padded frame I did not take a photo of. Just holds the leg safely in position.

I thought if this is as bad as it gets, this is a walk in the park.

Mr T did pop in to see me and share with me the news that he had not been able to remove all the inflamed tissue as per his normal practice as that would have been just a bit too dangerous in my case. In my experience doctors use the word “dangerous” very sparingly so I’m guessing my knee was a little messy once it was opened up. Will find out more detail when I see him again in a couple of weeks.

Then My Glutes Went Crazy

At about 10 pm, so roughly ten to twelve hours post-surgery, I mentioned to the nurses that I was starting to feel pain and my glutes (the muscles in the buttocks) were spasming. This glute spasming thing had happened back in January too. Wasn’t fun in either January or May, let me tell you. I won’t go into all the detail of the next few hours, but those hours were not pleasant. The anaesthetist got a 4 am wake up call (although apparently he was already awake – do those guys ever sleep?). Dr M got in on the pain management act as well. I want to stress here, it really wasn’t the knee that was causing me the issues. It was everything else: the glutes and the ITB mainly (I’ll talk about the ITB later, at this point I didn’t separate the knee from the ITB pain, that dawned on me later in rehab).

The glute spasms came in waves, just as they had in January. Those wave peaks were intense. The great team did get it all under control fairly quickly, but the glutes continued to be an issue, reducing in severity over time, for nearly four weeks. In hospital the nurses would ask that great pain question “What is your pain on a scale of 1 to 10?” My answer would often be, “The knee is zero, the glutes are 6.”

I ended up with three drips in various locations on my right arm and I was on a cocktail of drugs Day 1 (surgery day is Day 0).

I’m an information technology person: we make ONE change at a time when troubleshooting. If that change doesn’t give the desired result, we roll it back, make another change, test. Rinse and repeat. When you have a patient in considerable pain, I can understand they don’t have the luxury of the time to try one drug, it doesn’t work, take it away, try another one, rinse and repeat. Hence the cocktail. To me, with my background, it was like “But which one worked/is working?” I’m a pain medication minimalist at the best of times, I make an exception for surgery, but I was staring at the IV pole in horror.

Yes, it was an unpleasant few hours but would not happen to every patient and was probably more specific to the state of my anatomy at the time. Nowhere in all the copious information are glute spasms mentioned as a possible post-surgery event! I’d got an extra five years out of the knee since surgery was first discussed, so I can’t complain too much if during that five years other tissues had suffered: shortened, tightened, etc due to coping with the damaged knee.

Preventing Blood Clots

Blood clot prevention is big these days! Compression stockings, daily injections of a blood-thinning agent and these intermittent pneumatic compression (IPC) sleeves. Apparently some people hate them, but I loved them. I would have stolen them if possible. Like a constant leg massage. The only problem was I would count the compressions. One leg was doing 17 before the rest between sequences, the other leg was only doing 5 compressions. Was something wrong, I wondered? Did I have faulty sleeves? As a patient, I expected them to do the same thing to both legs. No-one seemed to know, which worried me even more. They rebooted the pump, unplugged and replugged the connectors, still the same. I can’t remember now who did know the answer, but apparently these sleeves don’t work in unison, but have a pre-programmed variation. It is likely many patients would not sit there counting the compressions to compare, but of course, I did!

I still find it amusing that I had to stop anti-inflammatories before surgery because they thin the blood (don’t want us bleeding too much in theatre, after all) then as soon as surgery is over, we get blood-thinners daily!  I understand the logic and am very grateful for the level of care, but it still amuses me.

Dr M also gave me deep breathing and coughing exercises to do.

Day 2 Onwards

Day 2 it was suggested I go to rehab. By Day 2 I was feeling much better, but thought I’d be guided by the experts, so I agreed. I do live alone and thought perhaps this may be a wise choice. Transfer was scheduled for the coming Monday. The remainder of my hospital stay was reasonably uneventful. The glutes were kept under control, I gradually lost IV connections and started to move about. Had my first shower sitting in a chair (first time ever!). That was the only chair shower I had, all others were standing. Another issue was sleeping on my back. I have never been a person that sleeps on my back, but all of a sudden I was expected to. That was hard. My back didn’t like it overly either. As soon as I was able to sleep on my side using a myriad of carefully positioned pillows, I did.

I learnt how to hook my right foot under my left ankle and swing my still as heavy as lead leg up onto the bed. The monkey bars above the bed were a great assistance! You will of course note by then I had painted my nails!

Day 2 I also had an x-ray. Mobile x-rays are wonderful things, plus the lovely staff took photos of the x-rays for me. I could finally see IN my knee! I could see Mr T’s handiwork, even though I missed out on seeing it happen.

X-ray without moving from my bed!

The bubble wrap looking stuff is the dressing. But there it was – Lennie was replaced, no more angry knee. Yes, my patella got some attention as part of the whole deal, so it lights up as well. Apparently, yes, I will set off the airport metal detectors.

The actual knee itself looked pretty good, if somewhat swollen (as is to be expected). And there is the aforementioned big arrow the surgeon drew on my leg before it all started.

BEST OF ALL? I discovered I had control of my foot again! I could move it as demonstrated in the little video above! The nurses were a bit mystified at my excitement, but I was ecstatic. I had control of my foot back!

I swapped between a walker and crutches for a couple of days as I have to say the walker was convenient for hanging clothes and towels on moving from bed to bathroom. Other times I would use the crutches. I had little exercises to do in bed to start stretching and bending the knee.

Day 4 I was feeling pretty chipper, but was still in a nightdress. Still no haircut either.

Off to Rehab

Day 5 was off to rehab day. I got dressed!!! All by myself! The last IV connection came out and off in the ambulance I went (very squishy ambulance, just as an observation).

Rehab is mostly about physiotherapy, moving, functionality. The monkey bars are gone, for a start, as was the walker (although I’d not used that for a few days by then). I ended up with the start of abrasions on my elbows from dragging myself up the bed, so we had to cover my elbows at one stage to protect the skin. I did learn to use my hands more than my elbows, which helped!

Unfortunately, the glutes decided to spasm badly again once I reached rehab. That was disappointing and frustrating. I missed a physio session due to the glutes. The whole pain management process started again, but this was about the glutes, not the knee.

They have a gym! First trip to the gym is in a wheelchair, but most after that on crutches (even if the physio followed me with a wheelchair “just in case”). Some physio sessions were in the room. For example, I’d go to the gym in the morning, then in the afternoon the physio would come to me.

It was in the gym I had my ITB epiphany. Refer back to the above section about the glutes going crazy. At that point, immediately post-op, I hadn’t differentiated between my knee (the operated bit) and the ITB. As a patient you are still a bit foggy from the anaesthesia, it is all in the same area, pain is pain at that point. But in the gym, six days later, your brain is working a lot better. I was doing one of the rehab exercises and realised it wasn’t the surgical site that was hurting, it was my ITB. It was painful and restricting my movement.

The physiotherapist and I had a chat about what we could do. The rehab hospital had a clinical massage therapist so we decided to give that a go. ONE treatment and the ITB pain was gone. I have no idea what he did, but it was fantastic! He also worked on the glutes a bit too. I had two treatments with him. My own physio, now four weeks later, is still working on those areas for me.

I’d have a heat pack on my glutes and an ice pack on my knee. The knee wasn’t necessarily painful, the ice was more preventative and to help with the swelling.

The goal for release from rehab is knee flexion (bend) of 90 degrees. I reached 93 degrees on Day 11 (post-surgery day count, that is). That was also the day I found myself in the bathroom with no crutches – I’d just got off the chair and wandered into the bathroom. Hmmm, I thought to myself, perhaps I’d better get Mr T’s OK, because I don’t think this is the first time I’ve done this in the last couple of days. Mr T’s office said that was fine, I was close enough to two weeks. I could “potter about” without crutches or walking stick. I promised not to go to the supermarket (just yet) without crutches.

By the very next day, my knee flexion was 105 degrees. Day 14 I finally came home! Now, almost a month after surgery, I am walking about 3,000 steps a day and my flexion is 125 degrees (as of Tuesday this week) – more on that in Episode II.

I had an appointment to see my surgeon on Day 13, but because I was in rehab we agreed the rehab doctors could review me and so that appointment was cancelled. In hindsight, I wish I’d gone to that appointment, just for information and post-op guidance.

Bouquets and Brickbats

Mostly I have bouquets. Just three small brickbats. Overall the care and staff were fantastic.

Surgeon – wonderful work. What more can I say? Fantastic.

Physician, anaesthetist, assistant surgeon – as far as I can tell, all did a great job! Sorry about the 4 am wake-up call.

Physiotherapists – terrific. They were really encouraging, understanding and supportive.

Nurses – all bar one night nurse were wonderful.

Food – some was great, some was not so great, but hey, it isn’t a restaurant. I was happy to get home to a higher protein diet though.

Pillows – terrible. Next time I am taking my own pillows into hospital IF that is allowed (it occurs to me maybe that would be considered an infection risk).

One rehab night nurse – I was not impressed. Towards the end of my stay I avoided calling her at all costs. HOWEVER, given the number of wonderful nurses over the 14 days, I think only one being not as helpful as I would have liked was not too bad really.

Release Process – oh, OK, discharge. I was sent home with various medications, two of them were pain medications. I was released just before a long weekend, so I was thankful for the coverage. It occurred to me over the weekend I had been given NO instructions how to get off these things. Remember I’m the pain medication minimalist – BUT I was also aware I’d had pretty invasive surgery, I didn’t want to change anything on a long weekend and cause a pain episode. Off to my GP I went to find out what I could stop taking and when. We stopped the slow release, kept some instant release up our sleeves IF necessary. I was happy. On reflection, I feel not enough information was given to me on discharge about the medications. Really, a small complaint very easily rectified by a visit to my GP.

Telehealth – Let Us Keep This Innovation!

The Covid-19 pandemic has brought sadness and pain globally: job loses, businesses closing, the high death toll in many parts of the world. The loss of family members, colleagues and friends is devastating for those affected, irrespective of the death toll of any given country.

One positive that has emerged is telehealth. In Australia telehealth was already available in certain regional areas: during the pandemic it has become widespread. The Guardian published a very good article from the perspective of the medical profession, “The genie is out of the bottle: telehealth points way for Australia post pandemic“.  Here I present my perspective as a patient.

Telehealth is fantastic! Especially for me and I suspect for many other chronic illness patients who see a collection of doctors. Apart from the obvious Covid-19 related benefits of limiting unnecessary contact and thereby maintaining isolation, there are other benefits.

  • Many chronic illnesses have a tendency to flare, meaning even without Covid-19 travel to and from a medical clinic can be an unpredictable physical challenge.
  • In situations like my current one, awaiting total knee replacement surgery, the main focus has been pain management (I’m pretty healthy other than the knee). My GP has been wonderful, keeping in touch, ensuring I’m managing, reviewing the pain management plan, faxing prescriptions to the pharmacy when necessary.
  • My endocrinologist really doesn’t do much with me physically during my visits – observations such as weight, blood pressure and temperature I can provide (although she didn’t ask – this may be an area where some practitioners have to develop a bit of patient trust!). Aside from my description of my health, in my case at this point, it is mostly blood test results that drive decision making, plus an annual ultrasound of my thyroid. Telehealth worked perfectly and saved my travel time, fuel and parking costs. She emailed me a pathology request for my next appointment in July.
  • My psychologist used Zoom, which worked really well. Again, saved travel time, fuel and parking (although that parking location is free in my case). For me it was clinically no different to sitting in her rooms, yet I was in my slippers and had a coffee on hand!
  • Hospital pre-admission appointment for surgery. Yes, my surgery is actually happening, next week! While I was to have a face-to-face appointment at the hospital to go through pre and post surgery planning and preparation when my surgery was originally booked for April 8 (then all surgeries were cancelled due to Covid-19), I had that appointment by phone yesterday. It worked well, everything was achieved as it would have been in a face-to-face appointment, including my being able to confirm I can take nail polish in with me to apply post-surgery.
  • I can see benefits for working people too. A 15 minute phone consultation is a lot easier for a working person than taking several hours off work to go to the doctor. Let’s face it, it does take several hours: travel to the clinic can easily take 30 minutes or more, wait time (minimal if your doctor runs on time), consultation time, maybe a stop at a pharmacy, travel back to work depending on the time of day. I suggest most of us would not return to work after a 4 pm appointment, for example, or go to work before a 9 am appointment.

I have long-standing relationships with my doctors: I’m not sure I’d like to have an initial consultation with a new doctor by phone, although video conference may be fine. I’d prefer my GP and specialists used video and I think that will come in time.

Clearly telehealth doesn’t work for everything: my surgeon is not about to slice and dice me over the internet. The physician couldn’t do his pre-operative physical examination over the phone. I couldn’t get the ‘flu shot remotely.

For on-going management of existing conditions it works beautifully from this patient’s perspective.

There may be opportunities for people such as myself to assist patients with technology in their homes. I notice the article linked above mentions this:

Dr Chris Bollen, a GP in Adelaide who cares for many elderly people living in their own homes, has spent much time recently teaching patients to use FaceTime and other digital platforms. He is excited by the potential for telehealth to help support older people to live independently…

The article also points out that the current arrangements are planned to be temporary.

These temporary arrangements are due to end on 30 September, and the health minister Greg Hunt has flagged his support for their continuation, although many questions are yet to be answered about the rollout and impact of these services.

I hope teleheath stays. It also has environmental benefits which are discussed in the above article. It works for many situations, it is now proven. Let’s keep it.

A Clinical Trial – Patient Journey – Part V

Catching up?

Apart from draining trial participants of blood every visit, as I have mentioned before joints and entheses are assessed for improvement – or not.

For my first 26 weeks of the trial, the period we now suspect I was on placebo, there was no real change in my hands or feet. Other areas are assessed but for illustrative purposes, I am only going to talk about hands and feet. Many of the joints subject to assessment, such as hips and temporomandibular joints (TMJ), I have not had problems with, so not much point in talking about them!

Now if you don’t know how many joints are in your fingers and toes, let me tell you – quite a few! They test 28 total in the fingers and 20 total in the toes on my trial.

While my finger joints were never my major trouble spot, my feet were a different story. Every single joint would light up with pain when assessed. In some cases, big red siren type lights.

Four weeks ago there was certainly a reduction in the number of joints that lit up and most of the ones that did react to assessment, were as if the dimmer switch had been activated.

Today? Today only TWO toe joints lit up and even those were a faint glow. That is two out of 20!

The hands? Not one of the assessed joints lit up. NOT ONE! Yes, I am still splinting those two trigger fingers at night, but that is not a finger joint issue and they are also improving.

One of the other aspects I am very pleased about, given my past medication experiences, is NO SIDE EFFECTS! Obviously there can be clinical side effects from medications that I, as the patient, would not necessarily recognise, which is one of the reasons they take all that blood. Are my kidneys OK? Is my liver still happy? But from my day to day living experience I’m not having any side effects like I had with the four previous treatments I have been on.

From here on in, I only visit the research clinic once every twelve weeks. The hard part is over. I don’t expect to have any really news to share for the remainder of the trial, providing everything continues to go well. Yes, there is a possibility I could stop responding at some stage in the future, but I’ll cross that bridge if and when it happens.

That just leaves me with the problem knee, but there have been announcements this week surgery will be commencing again and joints are on the list so I am hopeful that will also be resolved ….. shortly. I’ve already been on the phone to my surgeon’s office, so I’m waiting for a date!

I am very happy with the results. I love the team at Emeritus Research, it really is like dropping in to see good friends. Very professional good friends: as a trial participant I feel very well cared for and valued. Great atmosphere. Just watch the coffee machine if you like flat whites, it can overflow!

Glute Bridges on the Dining Table

Finding new ways to do things in our #StayAtHome world is a must!

Situation

  • Bung knee (click for details)
  • Due to above, can’t get up off the floor!
  • Gyms are all closed
  • Live in an apartment (no space for gym benches)
  • Need to keep glutes activated (part of good knee support)

When I was able to go to the gym, I would ask one of the trainers to haul me up off the floor after my floor exercises. Now that is not possible.

Solution

While I probably could use a strategically placed chair to help myself get up off the floor, I have found a much easier solution. Use my dining table as a gym bench. The bed isn’t firm enough. Also works for sit-ups.

I can get on the dining table quite easily using a chair as a step up. Much easier to get down off the table than up off the floor!

Glute Bridges

As the name suggests, this exercise is to activate, tone, strengthen your glutes. Glutes are the muscles in your posterior. Maximus, medius, minimus. The minimus is under the medius.

Image Credit: Visible Body

Once you are safely perched on your dining table, place your legs as shown and lift your butt by squeezing your glutes. Keep your spine neutral. Hold for a count of 5, lower. Repeat.

Due to both my knee and the fact I was trying to take a photo at the same time as execution, my butt isn’t as far off the table as it could be!

Progressions (making it harder):

  • Move one leg further away from the body
  • Lift one leg off the surface altogether (this is not me at this time!)
Move one leg further away from the body

Getting On and Off the Table

  • Place a dining chair roughly where you would before sitting
  • Lean butt against/on edge of table, hold onto the back of the chair
  • Lift one foot onto chair, followed by other foot
  • Wiggle back on table.
  • To get off, reverse the above.

I’d film it if I could, but that’s a bit difficult to do by myself.

Of course, if you can do these on the floor, GO YOU!

My Personal Weight Management Under #StayAtHome

Yesterday I tweeted:

I did not expect the reaction! I promised to write in more detail what I am doing to achieve this, so here it is. I want to stress this is what works for me, given my current circumstances. It is really intended for people of similar age and in similarly physically challenging circumstances. While the #StayAtHome situation is common to most of us, of course the knee issue is an added complication. Unlike my recent short videos, this will be a long read, so buckle in folks!

Situation Summary

I have been in self-isolation since March 1. The gyms closed, the pools closed. I am a weight training person: suddenly I couldn’t even do upper body or hydrotherapy. The knee is preventing any lower body weights work or walking. I am also nearly 65. We all know as we get older it becomes harder to manage our weight than when we were 25.

I was terrified of gaining weight and making my knee pain worse. Due to several changes of medications and predisolone off and on over the period in question, I had gained a few kilos during late 2018/early 2019. I have been very successful in reversing that trend, especially once my clinical drug trial got underway, with the suggestion and support of my endocrinologist to adopt the philosophies of Dr Michael Mosley. I’d never known it was considered safe to eat 800 calories a day. I do now! Before you stop reading in horror, I’m not eating 800 calories a day now! But it is a damn good kick start to get you going and I do still apply the macro principles espoused by Dr Mosley.

Comfort Eating

Several responses to the above tweet raised the issue of comfort eating. This is an issue that is exacerbated by isolation, anxiety (e.g. about the current health crisis of Covid19) and boredom among other drivers. A chronic illness patient I know once said to me she stopped comfort eating when she realised she was “eating her pain” – and she didn’t just mean physical pain, she meant emotional pain as well. Once she had that epiphany she was able to stop. She looked for and found other ways to deal with her pain.

I find boredom can be an issue for me, especially when I can’t go to the gym or swim and I am locked away. For me, the recording (discussed below) helps immensely. I can see what I’m eating instantly.

I have no great solution for comfort eating, I am sorry, as it is a bit out of my field of expertise. I would suggest perhaps consulting a psychologist if it is impacting your weight management efforts. Mental health is a critical factor and if you have a chronic illness, in Australia you are entitled to a Mental Health Care Plan. Use it.

Understand Your BMR

Before we even look at food, my recommendation to anyone on a weight management journey is to understand your Basal Metabolic Rate (BMR). This is the number of calories your body burns being alive. Nothing else, just being alive. Our BMR drops as we age. This calculator at MyDr.com.au is the one I use: http://tools.mydr.com.au/tools/basal-energy-calculator

Pop in your details at various ages and you will see the BMR drop. Of course this is a average. If, like me, you are an avid weights person you will have more lean muscle mass and your BMR will be higher. Conversely, you may be on medications that actually reduce your BMR as a side effect. Even so, as a place to start, it is a good indication.

If you do no exercise and you eat more than your BMR, you will gain weight. There is more to it than that if we want to delve into the science, but for our purposes, it is that simple, really. Note well: exercise in this context includes NEAT!

Be very aware though, your current weight may drive your BMR reading up. If your BMR says 2,000 calories a day, you don’t want to be eating that if weight loss is your goal. Try putting your target weight into the calculator – work from that.

Net Calories

If I am exercising in my normal manner, I live by net calories. My calorie target for the day plus what I “earn” exercising less what I eat. When I cannot exercise “properly” as is the current case, I aim for less than my BMR. At the moment I aim for 1,200 calories a day or less, with the odd 800 calorie day thrown in for good measure.

When I fill up my car the fuel tank capacity limits how much I can put in. Unless the car burns the fuel, no more will fit. Humans are not limited in the same way – if we don’t burn it, we just expand to make room (store the fuel).

Record, Record, Record

I cannot stress strongly enough to record your food intake. If you are anything like me, you forget that snack you had at 10 am. Or you don’t realise that SMALL muffin you grabbed en route home from the pharmacy was actually 530 calories! I use My Fitness Pal, there is Cronometer and various other apps out there. Find one that you like.

Recording means measuring. Get food scales. Measure.

Dietary Protein

My next tip is to look at your dietary protein. Are you eating enough protein? From talking to people I suggest many, especially older people living alone, are not eating enough protein. Without enough protein we can feel hungry and snack (usually on carb heavy stuff) unnecessarily.

My interest in dietary protein came about from my own experience. I noticed my protein levels had dropped when I reviewed my My Fitness Pal recording at one stage back in 2017. I was also in more pain from my psoriatic arthritis, although I wasn’t thinking of a causal link. I upped my protein for general health reasons and suddenly my pain levels dropped. Hmmmm, I thought. At the physiotherapist, I picked his brains, “Are you aware of any research around dietary protein and pain levels?”. No, he wasn’t aware of any so I came home and researched. This is one of the articles I found, which I rather like as it is succinct in stating the findings.

Effects of inflammation and/or inactivity on the need for dietary protein

Remember too that a 100 gram steak is NOT 100 grams of protein. It is about (depending on cut, quality, etc) 23 grams of protein. Know your protein sources.

Serving Sizes

All food packets have a recommended serving size. These are guidelines, not mandatory rules. Most bread packets have a serving size of two slices. I do not need two slices of bread under my omelette (see main photo above), I won’t burn that extra fuel.

My favourite high fibre muesli has a serving size of 45 grams. I have 35 grams with 160 grams of high protein yoghurt. I don’t miss the 10 grams, but over a week it adds up to less calories.

Adjust serving sizes to suit your circumstances. When I’m able to lift weights again, I’ll go back to 45 grams of muesli!

Ease of Preparation

Some people love cooking, others do not. Other people have physical challenges around standing chopping up vegetables, for example. Some of us have days where our medical conditions flare. Living alone can result in wastage as fresh vegetables go off before we use them. How I deal with this is frozen vegetables. No, I don’t find them particularly wonderfully cordon bleu – but they serve a purpose. Prepped, pre-measured, 2.5 minutes in the microwave. Here is one instance where I double the serve – as each bag contains two standard serves.

Another variety with chicken.

I’ve found this frozen spinach great for omelettes!

Two blocks of this (about 50 grams) with two eggs. I microwave it per the first half of the instructions, drain and pop in my non-stick pan for a minute or so, pour beaten eggs over. Cook. Greens and protein in one simple meal.

I stick to fresh salad vegetables such as lettuce, cucumber, mushrooms and tomato. They are easier to buy in “as needed” quantities. Of course, as I am in isolation and receiving grocery deliveries, that is more difficult. Another benefit to frozen vegetables at the moment as I’m not dependent on deliveries to have vegetables.

Meal Replacement

Eating the increased amount of protein as discussed above and keeping calories down can be a challenge. I was also told by a friend (I have NOT substantiated this) that in some cultures older people eat very little late in the day, but it makes sense, especially when there are reduced levels of activity.

I have been replacing most evening meals with a protein shake. This brand was recommended to me by a work colleague who is a amateur marathon runner. I chose this product.

I’ve tried various meal replacement shakes and work out protein shakes over the years, but I really do like this one as it is virtually all protein and suits my particular needs well at this time. Once I’m back in the gym, I’ll change to one of their “work out” formulated products and probably not use it as a meal replacement but as a work out supplement.

The cost is $2.13 a serve, which is cheaper than a steak! I buy the large container because it is cheaper per kilo and is delivery free.

Carbohydrates

You will notice not one photo of potatoes or rice. I am a very low carb, healthy fats, high protein eater. I do eat fresh fruit: bananas, peaches, apricots, apples, grapefruit, plums, mandarins. While sugar is the bane of my existence, as it is in everything, fruit has other health benefits. I do limit my intake to two pieces of fruit maximum a day.

Did you know there is 11 grams of sugar in a cup of milk? Anything low fat is often high/added sugar. I tend to triple check the sugar content of anything that is labelled “low fat”. The version that isn’t low fat may actually be better for you.

I found a great low carb, high protein bread that is really nice, highly recommend!

Watch out for “hidden” carbohydrates. This label is a classic example.

Knowing the calorie value of each macro (fats X 9, carbs and protein X 4) my mental arithmetic could not see where the 337 calories was coming from. See the red arrow? Yes, glycerol. 4.32 calories per gram. A whopping 14.3 grams! In the USA it is required it be included in the total carbohydrates. Not in Australia, it seems. Read labels, be aware of possible hidden stuff you don’t want.

Emergencies

Have healthy food you can prepare with no effort if necessary. This prevents grabbing something carb/sugar heavy. I keep four of these in the freezer for flare days. I like these ones, but everyone’s tastes are different. Find ones you like that you can have on hand for emergencies. These two are usually on special for $4.00 each, other varieties may be dearer.

I also have tinned salmon which requires no preparation or cooking. Never run out of eggs!

Treats

Yes, treats. Gotta have treats! At nearly 65 and not aiming to appear on the cover of Vogue anytime soon, I’m not going to be a martyr.

At the moment I am alternating between two treats I allow myself, ONE treat a day.

20 grams of this:

or 67 grams of this:

The 20 grams of chocolate is basically 50% sugar – not really a good choice, I’m eating 2 teaspoons of sugar. But we have to cut ourselves a little slack!

The ice cream (comes in chocolate too) is a much healthier choice as you can see from the label. This is a serving (on a bread and butter plate).

If I am out going to the doctor or the pharmacy I may well indulge in a skinny flat white and a sweet treat – but that would be once a week at the most. More likely once a month under our current #StayAtHome rules and doctors doing telehealth!

One-liners

  • Drink plenty of water – helps you feel full
  • Watch how many coffees you have – can be 50 calories an instant coffee (4 grams raw sugar)
  • Get enough sleep (lack of sleep affects cortisol levels)
  • Eat breakfast
  • Eat slowly (mindful eating is a thing)
  • Eat ice cream with a teaspoon
  • Use smaller plates, the meals I have pictured here are on my entree plates
  • No or at least very minimal alcohol – empty calories
  • No soft drinks (unless used as a small treat)

In Conclusion

I’m reiterating: this current regime of mine is for a particular set of circumstances: minimal activity, isolation, age, pending replacement knee surgery (so very important I not gain weight), pain management requires weight management.

This is certainly not how I eat when I am weight training three or four times a week and swimming two or three times a week. It would not be how I would eat if I was 25.

Some of my weight loss this last month will have been muscle, which concerns me, but there is little I can do about that at the moment.

ALWAYS check with your health care professional for your specific circumstances!

Please ask questions in the comments, as anything you are wondering about may be a question other readers have as well.

 

Looking After Your Shoulders While We #StayHomeStaySafe

My apologies for the colour quality! With all this self isolation, I am equipment restricted! I also apologise for confusing forearm and upper arm, but you get the drift!

Please note these little videos are meant as ideas and suggestions while we are all in isolation or quarantine at home.

Bear in mind I have not assessed you personally for the appropriateness of these exercises for you. Only attempt these if safe to do so.

A Clinical Trial – Patient Journey – Part IV

Catching up?

I last wrote in September about my clinical drug trial. So much has happened since! I did reach the conclusion, despite how good I felt by September, that I was on the placebo for the first 24 weeks. So why did I feel so good in September? To work that out we have to look at my specific treatment history. I’d failed three DMARDs when I started the drug trial and had just started a fourth DMARD. The rules of the trial were we could stay on up to two DMARDs during the trial.

Having adverse reactions to medications is not fun and while in each case I typically cite one prime adverse reaction, in reality there are probably other issues going on with the body as well.

Timing is the other factor in my case. Due to the adverse reactions to the DMARDs, by the time I started the trial my treatment regime had been a bit stop-start. To recap, November 2018 I stopped DMARD #2, did three month washout. Tried DMARD #3 in February 2019, but only lasted five weeks due to adverse reaction. Another small washout period, started DMARD #4, on a low introductory dose, in April 2019. By the time I started the drug trial in July 2019 I was really recovering from a lot of adverse reaction events and had not had continuous, effective treatment for almost eight months. It is therefore, to my mind, not surprising that I felt better in many ways! I was, if nothing else, recovering from the medications my body had not looked upon too favourably! When I wrote Part III (link above), I was also still on that low dose of DMARD #4 which may well have been having a positive effect on the psoriatic arthritis.

However, DMARD #4, like the previous three treatments, also resulted in an adverse event for me. My, shall we say, gastrointestinal activity started to go through the roof. I won’t go into details, I think you get the picture! It was not at all pleasant and worsened over time. After discussions with my gastroenterologist, rheumatologist and the research team we recorded yet another adverse event and I went off DMARD #4.

Around the same time the left knee, the topic of my last article, was starting to make its presence felt. I also developed trigger finger in late December and started splinting my fingers at night. I got different colours so I’d know which one was for which finger! These splints are from an great occupational therapist. So I had a few things going on.

While I could still fit my runners on, my feet were still slightly swollen. I developed a few clearly visible small nodules here and there: one on a pinky finger, one on a second toe and one on a big toe. These were new, small, and bothersome. The feature photo shows the finger one, completely gone now. The toe one below would now not be noticed by anyone else, I can just see where it was.

The joint assessment at my October trial visit still lit up all my toe joints and some finger joints. There really wasn’t any improvement in that joint assessment at all, even though I still felt better in many other ways as noted in my prior articles.

But what about the skin? Yes, it remained 100% clear. If I was on placebo AND off all DMARDs, wouldn’t my skin possibly flare? No, I don’t think so for the very simple reason my skin had never been a problem in the past, it came to the fore in a big way as a result of DMARD #2. Off that specific medication, my skin ultimately returned to normal. The timing just happened to coincide with the clinical trial. It was easy to look at my skin improvement and think, YAY, I got the good juice!

The bottom line is, by November/December 2019 I was saying to my doctors I think I’m on the placebo. If that was the case, then January 2, 2020 was to be my first active intervention injection. I certainly didn’t have long to wait!

After the January 2 injection, on the morning of January 16 I was vastly improved. I specifically noted the date in my symptom diary as I woke up feeling a switch had been flicked. I actually had to considerably tighten the laces on my runners! My feet had really shrunk! The trigger fingers had improved dramatically during the day. My shoulders, which had been grumpy, were also feeling better. Both knees were very good (bearing in mind the left one had had the rescue steroid shot in mid-November). I was very pleased. I was, if you like, now doubly improved!

Then we reached the end of January and the osteoarthritis in that left knee went haywire and I ended up in hospital (detailed in my immediately previous article).

I was therefore a week late getting my loading dose because my rheumatologist wouldn’t let me out of hospital to go and get it, even though I promised to come straight back! Also, due to the hospitalisation, the clinical trial medical monitor had to give clearance for me to continue on the drug trial. Clearance was granted, much to my relief!

I am due for my next injection in late April (injection every 12 weeks after the loading dose).

Aside from my osteoarthritic knee, my psoriatic arthritis is definitely improving. I am still splinting those two fingers at night but the hands are fine during the day. In fact the right hand is fine all the time now, just the one finger on the left hand is still an issue, but definitely improved. The small nodules I referred to above have almost disappeared and at the last two joint assessments, each time less joints have lit up. In fact, at this month’s assessment, I think from memory only two finger joints lit up (very slightly) and only about half my toe joints and even then they were much less painful than before. Shoulders are fine. Of course, my CRP was back up in early February (don’t have March results yet) but we’ve attributed that to the knee inflammation, which was pretty gross at the time.

Comorbidity makes things challenging. Like my CRP rising due to my osteoarthritic knee, even though my psoriatic arthritis is coming along nicely. Then there is the theoretical question of how much do osteo and psoriatic play together? I have this image of little psoriatic soldiers being sent on reconnaissance missions around my joints. They find the osteo damaged knees and the Sergeant-in-Charge decides it is a great place to attack where the defences are down! Not too sure what my doctors think of my visualisation but it amuses me! Obviously my knee didn’t get that bad or the cyst develop overnight – the aforementioned eight months of stop-start medications probably was a contributing factor and if I had been on placebo, the two conditions really had free range to play together.

One thing I am noticing is with the self-isolation required by Covid-19 AND the fact I can’t get out and walk due to the knee, I am missing my usual swimming and weight training. I’m doing remedial type exercises at home, but it is not the same as being in the gym. Medications don’t do everything, exercise is still a major part of condition management.

Oh, and STAY HOME: Social Distancing is critical!

Where Have I Been? I’m Glad You Asked!

I’ve been everywhere, man, as the song goes. In hospital, in MRI machines: all sorts of fun things.

I wrote last year about my right knee sending to me to the emergency department just before I started my clinical drug trial. It is important to emphasise here, I have two different forms of arthritis: psoriatic arthritis (for which I am on the drug trial) and osteoarthritis.

In 2014 my left knee got very grumpy. Total knee replacement was mentioned way back then, but we tried a Synvisc-One shot as a less invasive treatment. With that and the proper exercises, I got another five years out of that knee. However, it seems time is up. In October last year, after my right knee had recovered, the left knee went out in sympathy. Badly.

At Week 16 of the drug trial I was allowed an intervention: a steroid shot in the very cranky knee. I also had an MRI. This was November last year. Sitting in my GP’s office later, the conversation went like this.

GP (reading MRI report): “Hmmmm, Grade 4 osteo.”

Me: “How many grades are there?”

GP: “Four”

Me: “Oh”

Not exactly the best news, but we hypothesised that the flare in my right knee had increased the load on the left knee, so now it was reminding me to look after it – in no uncertain terms. The steroid shot, some exercise, I’d be fine. That was my thinking. All was progressing positively for about ten weeks after the steroid injection. I was thinking I could start activating Limberation again.

Then came Australia Day weekend (end of January for overseas readers). Friday I woke up, the knee was a little swollen and stiff. I went and did some hydrotherapy. Saturday it wasn’t any better so I went for a walk around the block to see if that would help. No. On Sunday, I had lunch, looked at the dishes and thought “I’ll just go the bathroom first.” As I stood up from the toilet, something at the back of my knee snapped or popped or did something. So painful I fell back onto the toilet. Sat there for a minute, thought, “OK, I can’t sit here forever, got to get up somehow.” So I very gingerly managed to get off the toilet. The excruciating pain of the pop had gone, but this was one very unhappy knee. And it got unhappier as time progressed. I took some panadol osteo – I may as well have taken jelly beans. By an hour later I decided hospital was the place to go.

The poor taxi driver was quite distressed, I think, because by the time we got to the hospital, I was in….. a lot of pain. The hospital staff got me out of the taxi, into a wheelchair and into triage. To cut a very long story short, I was admitted. Finally got the pain under control at 1 am Monday morning. I don’t think the nurses believed me, but I was adamant the pain was worse than when I woke from my hysterectomy. It wasn’t just the knee, but now my foot was excruciating and my glutes were spasming. Because it was a public holiday weekend I didn’t get my MRI (yes, another one, I am now dating the MRI machine) until the Wednesday morning.

You know that look doctors get when one of their patients has something interesting, unique? I recognised that look! My rheumatologist came into the ward, holding the results, with excited stars in his eyes. “I’ve never actually seen one of these myself”, he said. I don’t mind when they get all super excited because it means you are medically interesting!

The MRI showed, amongst other things, a cyst dissecting my popliteus muscle. Not a Bakers Cyst, I must emphasise. This is different. The idea at that point was we could perhaps remove the cyst with keyhole surgery. This was good news, as I didn’t (and don’t) want to get kicked off the drug trial for the other arthritis! Minimal is best, I was thinking. Here is an extract of the report if you are medically minded.

So off to see a surgeon. Surgeon was not happy that my quads weren’t working, I couldn’t flex my toes and my left foot was just one big blob of pins and needles. He also quickly killed the keyhole surgery idea. I needed a total knee replacement. This was a shock, not really something I was planning on. Surgeon sends me off for another MRI, this time of my lumbar spine to ensure my muscle weakness wasn’t coming from my spine. I was wheeled down to the MRI department to make an appointment and they very kindly fitted me in on the spot. Wonderful.

Next day the surgeon rang me. They found a cyst on my spine too, so now I needed to have electrophysiology testing. Off to see a neurosurgeon. Now, dear reader, over the years I’ve had a lot of medical poking, prodding, needles, tests, monitors – but electrophysiology testing would have to be my least favourite. Interesting to be sure, but not so pleasant. You know that old saying, there’s a fine line between pleasure and pain? No, just no. Honestly, it isn’t terribly painful, but it certainly is not pleasant. The second part, where they stick needles in the muscles is not nearly as bad as the first part (but then again, needles never worry me). However, all good, the cyst in my back is not a concern, too small and not in the usually problematic location, not causing any issues. Mind you, he hadn’t seen a cyst in that spot before. Why was I not surprised?

I was still a bit stunned about the whole total knee replacement thing though. So I sought a second opinion. Same advice, total knee replacement required. This surgeon did explain the situation in a way I was better able to understand the problem. In his opinion, the inflammation from the osteoarthritis, with maybe some assistance from dear friend psoriatic arthritis, was causing the cyst. The cyst isn’t in a particularly good position to try removal safely and in his opinion unless we fixed the knee, even if they did remove the cyst, I’d just get more cysts. Great. Not.

Then I had to decide which surgeon to go with. In the meantime, what else was going on? We were, by that stage, in early March. Covid-19 was ramping up around the world. I decided to go with the second surgeon, Mr T, and surgery was duly booked for April 8. I needed a pre-operative health assessment by a physician, the knee components had to be ordered, then another pre-op with Mr T and a rehabilitation prep session with the hospital. All were booked, I was good to go. I had the pre-op health assessment and was sent off from that for a raft of tests (blood, ECG etc).

Then on Sunday, March 22 I got a call from Mr T (my pre-op with him was for the following day). Please don’t come in. Shortly thereafter, of course, all surgery was cancelled.

Consequently, I am now in limbo. A bung knee that has somewhat settled since the end of January hospitalisation, but only if I am careful. I’ve worked out I should do about 2,500 steps a day, in small time blocks, evenly spread throughout the day. Too much activity, knee swells. Too little, knee seizes. I can get around the house now without the walking stick, but for excursions to the supermarket I need the stick.

On top of that, I am self-isolating because I am on an immunosupressive medication.

When surgery will start up again is an unknown at this point: all depends on our containment/management of Covid-19. The surgeon will call as soon as they know. So I wait.

My next article will be about my clinical trial progress, which is going very well (although there is a twist to the story). It was a toss up whether to write about the knee or the clinical trial first!

Oh, and STAY HOME: Social Distancing is critical!