Prior to the appointment I had been sent a number of emails outlining what I could expect from the visit to clinic. I was told to expect it to take up to seven hours as I would have to meet with a panel of experts in their fields that were part of the team that did the operation and together they would assess my suitability.
I was also to sit a mini-psych test with the resident psychologist to see if I was mentally prepared for such a big operation.
I had been contacted by Dr Al Muderis briefly and he had said while he would need to wait to see x-rays he didn’t think the fact I was a through-knee amputee would be a problem (phew) as he said he could simply amputee my leg higher. He told me this was often a concern for candidates, as they were not prepared to lose any more of their leg.
I gulped when I heard this. While I didn’t like the idea of losing more of my leg myself, I figured I didn’t really have much to lose. I was already missing a leg, so would missing a few more centimetres really make much difference? Besides there are very few people in my life that see me with my leg off so I knew realistically it wouldn’t make a difference but I was still a little worried.
He also told me he was very selective with those he operated on.
Despite the phone call and emails there was nothing that could have prepared my parents and myself for the intensity of that appointment. As cliché as it sounds it was an afternoon riding an emotional roller coaster of dizzyingly highs and terrifying lows.
My parents picked me up from the airport and as we turned the corner to the clinic at Macquarie Uni Hospital, standing outside was a fit looking guy in his mid-twenties wearing a prosthetic leg. Without gawking too much I tried to suss out whether he had had the osseointegration surgery done or not. I determined he most likely had and tried not to stare as he opened the door and walked in. He still walked with a slight limb but his gait was far smoother and more effortless than I had seen on most other amputees.
Sitting in the chairs in the waiting room, I felt the tingles of nerves squirm in my stomach. I tried to remain calm and relaxed in front of my parents and attempted to read the magazine in my hand but I could barely concentrate and the pictures swam in front my eyes. In just a few hours I would know my fate. For the month or so of waiting for the appointment I had dared not invite in the shards of excitement as I knew that if I wasn’t accepted for this surgery or if it was far too expensive than I would be beyond shattered.
We were ushered into another room without much explanation. There were several other people seated, amputees and their partners. There was an old guy in the corner talking about wheelchair sport and what appeared like a nurse with a clipboard but nothing was said to us nor were we introduced. We sat there in confused silence as we listened to the others talk. I noticed Mitch (the guy who had been out the front of the clinic when we arrived) in the corner and there was another lady that looked like she had maybe at the procedure done as well.
Finally the nurse introduced herself and Mitch and asked us if we had any questions about the operation for him.
“How easy was it to learn to walk again after the operation?” I asked tentatively.
I had envisioned quite a lengthy process involving parallel bars and frustration like you see in movies where a character has had a bad accident and has to learn to walk again.
“Not long at all,” he replied to my relief.
“You already know how to walk so it’s just a matter of readjusting.”
He told us he had lost his leg in an accident and had been quite fit prior. After this operation he was back in the gym he managed within a week or so and just getting on with things.
We later learn’t that Mitch went too hard too soon and tore his thigh muscle on the leg in which the metal rod had been implanted.
Months later I also discovered that neither the walking process nor the operation was quite as simple and easy as Mitch had first made out.
In the brochure I had found I had only seen pictures of guys who had had the surgery and their new prosthetic legs were uncovered. I know a lot of guys don’t mind having their hardware, so to speak, on display but as a girl I have always wanted my leg to blend in as much as possible and so I wear a foam and stocking cover over the metal.
I nervously asked Mitch if the same would be possible with the new leg. A pretty blonde girl sitting next to me in a wheelchair smiled at me and said she had been wondering the same thing.
Without meaning to sound vain I was quite pleased to discover that this wouldn’t be a problem.
Before we had much of a chance to ask anything further we were ushered into another room where seven doctors sat perched in various positions around the room.
It started off awkwardly when they confused my Mum for my sister and my Dad for my boyfriend. Turning to my coping mechanism of laughing and joking in nervous uncomfortable situations I made a joke which seemed to only fill the room with more awkwardness.
Dr Al Muderis introduced himself and the others in the room. There was the psychologist, physio, two prosthetists, an orthopedic doctor and a visiting doctor learning about the new operation. Then wham! We were straight into it. It was like a panel interview on speed where you felt like you had none of the answers. It was crowded and overwhelming. Questions were fired from all directions.
They asked me about my leg, how I coped with it, my level of activity. I mentioned I had lost some weight so it was fitting particularly badly at the moment.
The physio responded to that with “ah so you have quite a bit of saggy and excess skin on your stump then?” I was taken aback by this seemingly bizarre question. Had she never seen someone who has lost weight?
They seemed particularly interested in the fact that I was born with the birth defect Tibial Hemimelia and when I mentioned about my thumb operation they swarmed like a flock of hungry birds to assess my arm. One asked about my radius to which I couldn’t answer which sent them into an almost frenzy as they grabbed at my arm to determine if indeed I did have a radius.
Or at least I think that was what they were doing, they were speaking over me using so much medical jargon they could have been discussing to meet up for dinner afterwards and I wouldn’t have known.
Mum and Dad stood a little uneasily in the corner and I could see the stress in their faces.
Then one of the doctors ordered me to take my pants off so they could look at my leg. There was no ‘sorry this might be a little uncomfortable for you’ nor was there any averting of the eyes as I stood on the step next to the examination bed and stripped.
Again I laughed and made a joke about putting on some music for me to strip to. They simply stared at me like I was an alien speaking another language. I was like a bad comedian on crack, I couldn’t help but fire joke after nervous joke.
I guess it was a case of if you don’t laugh you will cry which is pretty much how I could some up the entire appointment.
They gathered around my stump, peering at it, moving it this way and that, all the while muttering about its performance.
Then came the heavy stuff.
Dr Al Muderis sat in front of us, an intensity in his eyes.
“We like to only do this operation on people where it will make a huge difference in their life,” he said.
“You’ve had this leg all your life and you seem to be coping very well and are highly functioning.”
I felt a flush of hot indignation. “I have it just as tough,” I wanted to yell.
“You don’t know the pain and discomfort I live with daily. Just because I choose to get on with my life as best I can and not sit and cry in a wheelchair in a dark room everyday. Just because I refuse to constantly complain and feel sorry for myself, that doesn’t mean I am no less deserving,” I wanted to add.
But I held my tongue for the time being.
He went on.
“I could make your life worse.”
It was like a punch to the heart, I could feel it quicken.
The look of terror on Mum’s face when he said this made me sick to the stomach.
He explained the biggest risk with the surgery was the risk of infection which was quite high especially after the second stage.
He continued to tell us about a bodybuilder he had only just operated on eight days ago who was still bleeding after some complications.
“I’m so worried about him,” he said with a casual heaviness.
I was taken aback by his honesty but appreciated it all the same. That didn’t mean it still wasn’t scary as hell.
“You could die,” he added solemnly.
He explained he had performed 15 surgeries in Australia and there had been 120 worldwide but out of all those only one said they regretted it (he didn’t say why this was) the rest said they would do it again in a heartbeat.
He also explained that due to the risk of infection because after the second stage the wound never quite closes (much like a piecing I believe) I would never be able to swim in a public pool again. It might not sound like much but I felt the disappointment heavy in my stomach. Ever since I have been a kid I have loved to swim and without wanting to sound like a bragger, I have always been quite good at it. It is the only physical activity where my leg doesn’t get in the way and I can often out swim many able bodied people. To never be able to swim in a pool again was quite a blow. But in the scheme of things I wasn’t going to sacrifice the chance at a better life for a few laps in the pool.
Then it was time for my consult with the psychologist.
Now I wasn’t stupid I knew he would be looking to see if I would be mentally prepared for this operation and damned if I was to show him anything else. Despite having just been told I could die from the operation I buried my fears and uneasiness and painted my face with a winning confident smile.
He started the session with a joke; “this session is just to see if you are crazy or not,” he said with a smile, his pen poised above his sheet of paper.
“Tell me about your leg,” he began.
I didn’t know where to start. I told him I had had it since birth but I tried to not let it get in the way of life. I still go out, still go to the gym still do everything as normally as possible.
“You seem to like exercise, why?” He continued.
This seemed like a strange question but I went with it, figured it had something to do with how I felt about my body perhaps.
I can feel the tears well up behind my eyes when talking about how much this operation would improve my life but I refuse to let him see me cry. Ice cubes, ice cubes I mentally thought to keep the tears at bay.
After the operation there will a piece of metal rod that will forever stick out of my stump and he asks me about how this would affect my body image and how I would feel about myself.
I don’t verbalise it but it does worry me slightly. But the way I see it, the only person who really will be seeing my stump is my future partner and it’s not like at the moment I have a perfect body anyway.
Then the craziest question of all.
“You’re parents seem worried. What do you think they are worried about?”
I was stunned. He had been in the same room where only a few minutes ago Dr Al Muderis had said he could make my life worse and I could die. What did he think my parents were worried about?
I so badly wanted to say sarcastically, “oh Mum wants to cook lamb tonight but is worried we won’t get home in time.” But I worried he might chalk this answer up to me being crazy so I bite my tongue and give him the straight response.
“Oh probably just when the doctor said he could make my life worse and their daughter is about to have this massive operation and will be in pain,” I respond.
“Hmm yeah,” he says nodding.
Then it’s off for x-rays. On the way Mum and I are in the toilets and I start laughing uncontrollably. She asks me what could possibly be so funny and I only laugh harder. From the doctors mistaking Dad for my boyfriend, the crazy psych and the stripping incident, it’s all too funny and we are nearly on the floor crying with laughter. I think everyone is just hiding their nerves but suddenly it all just seems ridiculously funny.
I’m not a particularly religious person but during the CT I pray a little prayer and I feel a sense of peace descend upon me. What will be will be and it is all in God’s hands and I just have to be ok with that. I can’t help but think of a quote I heard Katy Perry say in a recent interview, “rejection is God’s protection.” But I hope that there is no rejection all the same.
The x-ray guy keeps referring to my stump as ‘it’ which is slightly irritating and keeps asking me if I have ever dislocated my hip. I tell him that as part of my birth defect I had to have an operation where the socket of my hip had to be scraped out so the ball joint would fit in better. He keeps asking more questions about it which I think is a little odd but figure it’s been an odd kind of day.
Back in the office this time there are only three other doctors and Dr Al Muderis. He puts the x-rays up on the lit screen and I feel like I am waiting for year 12 exam results. One of the doctors even makes that joke.
The first thought that runs through my head is one of relief that my bones don’t look fat. Ridiculous I know.
It seems the doctors are also interested in my bone size and begin discussing my bone diameter with a sense of concern. I think I hear them say I have no femur head nor a hip.
Then Dr Al Muderis turns to me and asks if am experiencing great pain in my hip.
He seems surprised when with a slightly puzzled look on my face I tell him I don’t.
He then informs me that regardless of whether I have this operation or not I will almost certainly need a hip replacement in the future. This is what struck me most about the whole appointment, I had never thought of the possible further complications that might come from my leg. Perhaps naively I had simply thought I had one leg and that was my lot in life. That was it, deal with it.
He presses his hands together in front of his face.
“You have no hip,” he says matter of factly.
I am stunned. I feel like I have been winded. What? How could I have possibly have not known this? I knew I didn’t have a great hip but I had no idea that I was completely missing the entire joint.
Mum looks just as stunned, seems she had missed the memo also. Later Dad tells me he knew this and just assumed we did too.
“If you have this operation you will most likely get hip pain,” Dr Al Muderis continues.
“And you will probably need a hip replacement. But that is easily done. If you don’t have this operation you will have crippling back pain later in life. It is a matter of swapping back pain for hip pain.”
Once again the back problems down the track had never even crossed my mind. I am stunned.
Later Dad told me this was the clincher for him in deciding I should have the operation. While hip pain can be easily fixed with a hip replacement, back pain is largely unpreventable.
They tell me I am a candidate but are careful not to actually say I should have the operation. They want it to be an informed decision I make on my own. Mum is desperate for them to say one way or another whether they think I should go through with it but this is not to be, it has to be up to me.
I have a quick discussion with my parents in the waiting room and without a moment of thought I say with certainty I want the operation. I can feel a flicker of doubt lapping at the corner of my mind but I brush it aside. I am terrified but I know I have to be strong and make the tough decision without giving in to any doubts or second thoughts. As big as the process and as scary as it sounds it will change my life dramatically and how could I live with myself passing up that opportunity. I would be foolish to let my fears hold me back. One of the doctors had said with the new leg I would be able to feel the floor and this alone boggles my mind and floods me with excitement.
Now the only factor that stands in the way is the cost. Still nothing has been said about this and I am terrified that my dream might be impossibly expensive. My parents have already said that money wouldn’t be an issue, as they would simply remortgage the house and do whatever it would take. When they told me this I was flooded with gratitude and floored by their matter of fact attitude that they would without a second thought do this for me to make my life better. I had choked back my tears.
We are ushered in to the office of Dr Al Muderis’s surgical nurse and she immediately starts thumbing through her diary and says, “well we can book you in for October 17.”
She looks up at us expectantly.
This is only three months away.
Dad had said in the waiting room it might be better to wait till the new year but there doesn’t seem any point. I am strong in my convictions and I tell her to go ahead and book it. She says she could have booked us in sooner but because of my small femur size the part will have to be custom made in Germany and the German factories close down for a couple of weeks during their summer.
She explains the operation is done in two stages. Prior to the first stage I won’t be able to wear my leg and there will be six weeks between the two stages to allow for the bone to fuse. Add in the four or so weeks in hospital and I’m looking at a total of four months off work. I won’t be able to look after myself so I will need to move home. Luckily my parents live in Sydney so it will suit all of my appointments.
Dad prepares me that I may have to resign if I want the operation. This terrifies me, I love my job, but this operation will change my life. How can I possibly pass that up?
Still nothing has been said about the cost and there are butterflies of nerves marching up a storm in my stomach. When the nurse leaves the room I take a sneaky peek at her iPad that lists the fees. They look ok and relief washes over me like melted honey.
All up it will cost about $35,000. The price of new car.
Driving home that night we are all mentally, physically and emotionally drained and exhausted. I have a ball of nerves in my stomach but also fireworks of excitement.
Mum and Dad say the whole experience gave them flashbacks to when I was a baby and they had to visit countless specialists about my leg where the doctors constantly spoke over their heads in medical jargon that they couldn’t understand but sounded highly scary for their little girl.
I’m not so much afraid of the surgery itself; it’s the four months away from my life that worries me the most. Missing work, friends, live gigs. Fear of people forgetting me and their lives simply going on. I fear I will slip into depression during this time as I will be so bored and isolated. I am also afraid of what work is going to say and have to prepare myself for either option. I know that they would want to give me the time off but whether they can afford to financially is another story.
I also worry about not wearing my leg before the operation and am concerned about dislocating my left knee again or having any kind of accident before the operation.
I see my flatmate’s name flash up on my phone and I feel so drained I don’t know if I can speak to him. But once I start talking I can’t stop and it all comes flooding out in a giant rush.
He is one of only a couple of people I had told about my appointment; to everyone else I just said I was flying to Sydney for a specialist appointment. I hadn’t wanted to say anything till I knew for certainty that I could have the operation. I didn’t want to return crushed and having to answer a bunch of unwanted questions.
That night as I drifted off to sleep it didn’t feel real at all.