What do you know now, that you wished you knew back then?

Andrew Fairbairn, WA Peer Support Program Coordinator and left below knee amputee from Perth, chats with some of Limbs 4 Life’s National Amputee Advisory Council (NAAC) members to find out their experiences of what they wish they knew before their amputation journey.

Lyn Johnson, National Council Member, Tasmania:

The one thing I really wanted was to be able to speak to another amputee. I had a two-day gap from when it was decided that I would be having an amputation, until the day of the operation and I really wanted to use that time to speak to someone who would understand. Unfortunately, I didn’t get that opportunity. I wasn’t able to get any advice from doctors. Not even the orthopaedic oncologist was able to help me out. After I had my amputation, I wanted to know how long it would take after the surgery to get a prosthesis. I also wanted to know what the cost of a prosthesis would be. I think the points that I have outlined are relevant to most people facing amputation.

Ren Gallet, National Council Member, Victoria:

I lost my leg in 1965, when I was living in the U.K. I literally had no guidance or support at all. In 1965 there were no computers, so social media like Facebook and support organisations like Limbs 4 Life would never have existed. It was a totally different world. I was sent home two weeks after surgery with no rehabilitation and no physiotherapy.

I previously worked as a prosthetic technician, so having a background in prosthetics, I can see things have changed a lot. When I had my amputation, the only choice for prosthetic limbs were limbs made from wood or aluminium. Everything has changed and mostly for the better. People now have access to arms, feet and knees which are very responsive. The other benefit is that amputees can trial different kinds of prosthetic components and work out which devices can best meet their needs.

There are obviously many things I wish I knew prior to amputation but on the top of my list would have to be meeting someone who had been an amputee for a number of years. That way, all my other questions would be answered by that person. It makes so much sense to me now, why we do what we do in providing peer support with Limbs 4 Life.

Sara Shams, National Council Member, Queensland:

My journey in the amputee and disability community began at a very early age. My disability was congenital (I was born without tibia’s/shinbones) and the amputations of my fibulas (smaller bone of the outer side of the leg) occurred when I was very young.

From the perspective of a child living with limb loss, I really wish I knew that wearing my prosthetic legs and learning to use them would NOT hinder any activities such as playing sport especially now with the advancements in active prosthesis.

As a bilateral amputee, I will say that in my early days I wish I knew that prosthetics are hard to learn to use, but worth it in the long run. I have found that I don’t need to wear my legs all the time and, yes, I am different and that is absolutely okay.

Looking back, the one thing I wish I knew is that I am not alone in my experience. This was a big one when I was growing up. These days, social media is a great resource for sharing and learning, but when I was little, there wasn't much community and connection between amputees, and I often felt alone/isolated.

Priscilla Sutton, National Council Member, Australian Capital Territory:

As an active and long-term amputee, the one thing I wish I had done prior to my amputation was prepare my body better - with glute exercises and core strength building. Preparation is so important because you really need your bum to walk, and your core to balance, and to help avoid falls so it’s important that those areas are toned. It’s never too late for members of our community to work on these kinds of exercises as they are extremely important! I highly recommend seeing an exercise physiologist to help get you on the right track.

Richard McCarthy, First Nations Peoples Representative:
This is a difficult one for me, mainly because I didn't really have a choice. It was losing the lower leg or die. There was no choice at the time. I had very little chance to learn anything. But I will say, I wish I had I known about Limbs 4 Life and the Peer Support Program prior to my amputation, but I did not find out about it until 4 months after my amputation.

In terms of mental health, I definitely wish I'd known the impact of grief and loss and how that would affect me especially in the first 12 months. I also wish I'd had a better understanding of how NDIS actually works. Perhaps I should say how much easier my life would be, without having to worry about having a disability. My life has changed considerably, however somehow, I feel I am now a better person than I was before.

Peter Stringer, National Council Member, South Australia:

Having had a below knee amputation and then going back to have the other leg amputated, I wish I knew that I had the strength and ability in the beginning to carry on and the ability to ask for help when I needed to.

Going from a single below knee to a bilateral below knee amputee completely changed my perspective. My biggest concern was I wouldn’t be able to drive again and that’s something that I should have ask about prior to having my second amputation. Asking about driving would have saved a lot of worry and concern.

As a trained Limbs 4 Life Peer Support Volunteer for several years, I wish I had known that there was this amazing support system in place. I am now volunteering to help others on their amputee journey and find it very rewarding.

Andrew Fairbairn, National Council Member, Western Australia:

Personally, I elected to have my leg amputated as a way of getting rid of the pain, ongoing infections, and trips to hospital to try and fix it. I did a lot of my own research prior to my surgery and was, or so I thought, well prepared for the journey. I was lucky enough to have a mentor who is a left above knee amputee and very skilled in the understanding of human condition. He walked me through the whole process and continues to assist me whenever I need help.

For information or advice about going through an amputation, or to speak to a trained peer support volunteer, please contact Limbs 4 Life today.