There is currently so much going on with me at the moment that no one wants to hear. Also, people within my life really do not understand what I went through in 2022, nor what I continue to go through to this day, which is now 822 days post-op since the BKA.
I have been a drug addict for around 7 years now, since the time I began on Endone for pain and leg issues. This was whilst I was still homeless and ended up in Mona Vale District Hopistal back in February of 2018. I was discharged from Mona Vale Hospital on the 9th of May 2018 and moved into the Central Coast Coast Shelter Men’s Program (Coimba). There was already talk of amputation of my leg back in 2018, but they were able to save it. Even though from this point forward I would need to use a walking stick to get through my day-to-day life.
In April or May of 2021, I had my little toe on my left foot amputated. I was informed by my Vascular Surgical Team (VST) in Central Coast Local Health District Hospital (CCLHD – Gosford, NSW, Australia) that within a year I would lose my big toe on my left foot. At this stage no one really understood what was to happen nearly a year later.
In 2022, I had a diabetic ulcer on the left side of my left foot, and also a wound over the ankle bone. No matter the type or amount of antibiotics my GP prescribed for months trying to get on top of it, nothing worked. A swab of the wound show that the infection in my foot was resistant to nearly everything. The wound was being dressed every second day. Over a period of 48 hours the main ulcer began getting a black line around the outside of the wound. This was concerning. I took a couple of pictures from different angles and sent them through to my GP. She called me no longer after coming into work that morning and informed me that I needed to go to hospital urgently. She believed the only thing left to do was me be admitted to hospital for several days, have a PICC line inserted and be hit hard with IV antibiotics. My GP also knew how much I hated going to the hospital so she would never suggest I go unless it was an emergency.
I contacted my Support Worker from Coimba and informed him I needed to go to hospital. When he hears that from me, he knows its urgent and not anything minor. He told me to pack my bag, and he would be there in 30 minutes to take me to the CCLHD and would stay with me until we knew exactly what they would do.
I attended the CCLHD on the 27th of May 2022, they were expecting me as my GP had already been in touch with my VST. No PICC line was inserted at this time as they were able to get a stable canula inserted and working. I was admitted and waited in the Emergency Department for many hours before being transferred to the ward.
The next morning, 28th of May 2022, I was informed I was going into surgery. I was prepped for surgery and taken up to the operating room. This day was going to be the beginning of the major changes of my life. They amputated my little toe of my left foot. A few days later on the 31st of May 2022 I was again informed early morning I was being prepped for surgery again. This time they amputated my next toe. That night my VST came and visited me in my single room on the ward. The news was going to devast me and change my life forever.
My VST informed me they have been trying to save my left leg. But they had failed and needed to do a below knee amputation (BKA). The infection has spread too far up the leg and this was the only way to save my life. I informed Ellen (my Vascular Registrar – who had known me for many years) to get me the consent form to sign now for the BKA or when the day came I would either not be there or would not sign it. They had planned for surgery for the BKA to be done in two weeks as I had already had two amputations over a few days and my body needed time to recover.
Blood tests and a bone scan on the 5th of June 2022 didn’t have good results from the blood tests. But nothing has changed at this stage as the bone scan results hadn’t yet come back.
At 6.30am the next morning (6th of June 2022) my nurse came in and said she needed to prep me for surgery as I was being taken up in half an hour. As she had just woke me up, I was a little stunned as I wasn’t expecting surgery for my BKA for another week. What I later found out is the bone scan results showed the infection inside my left leg was spreading further up the leg quicker than it was before.
I began to panic and get very anxious. I was given an injection to calm me down and also given my pain medication. Roughly 30 minutes later I was taken up to the operating room, my mind racing through everything as it all was now becoming too real and happening really fast.
There were a few issues during surgery meaning my surgery took a lot longer than expected. That night I woke up in my room and feel out of bed as my mind hadn’t registered that I had earlier that day had a BKA. I was helped back into bed, and I looked down and my left leg below the knee wasn’t there. I had all these wires and machines on me now and all I saw around the stump below my left leg was all bandages, and a lot of them.
After a total of 18 weeks and 6 days in hospital I was finally discharged to my forever home. It is something I had been waiting for over 4 1/2 years for. It is sad that it took having a BKA before I got it was sad. But at least I now have it.
There have been so many issues with support workers from various companies, as well as issues with certain companies themselves. I am at the moment debating on whether I am going to post my experiences and name these companies. I haven’t made a decision on this yet, but if I do it will be in a separate post and maybe even a post per company, there is totally enough information to post experiences about each of these companies.
I’ve had support workers steal pain medication, which was caught on my security camera. I’ve had workers abuse and try to claim more funding then allowed through my National Disability Insurance Scheme (NDIS) plan. There have also been many other issues, which I might go into in a later post (as it will be another lengthy post).
A recent respite period for 5 days and 6 nights to Port Macquarie, NSW, Australia (my hometown where I was born) turned to shit from Day 1. Many issues occurred during this respite period which is now under further investigations, with some already being completed and action taken (can’t go into detail right now as this is now a Police matter).
I am in the middle of dealing with a new CoS company (well back to my previous level 2 CoS that knows me very well) and support company. We have a new worker booked in for my Friday shift this week (being tomorrow) and another worker possibly booked in for my next Tuesday shift, which I am hoping I might be able to get to the pool either this coming Tuesday or the one after, this will all depend on the worker they have in mind and when I see his profile if I feel he might be a good fit for this shift and my needs.
This post has been 3 days in the making, so I am going to end it here and start another post in the next day or two to continue on with other matters, like the current issues that are occurring with my right leg. Hopefully they can get on top of this soon so I don’t lose that leg also, I don’t think I could handle that situation if it was to arrive so soon after the amputation of my left leg. So that is all for now and I will post again soon.
Thank you for your patience with me not posting much as of late, this is changing, but I have so much happening at the moment that to be honest blog posts are a low priority issue for me right now.
