Help Kirstie to move to a wheelchair adapted home

Hi, my name is Kirstie, and I’m fundraising to enable me to move to a wheelchair accessible home.

Short version!

In July this year I was admitted to hospital as an emergency case. I had very severe foot infections in both feet, caused through complications of my diabetes, and although I didn’t know it then, it had turned to sepsis. If I’d waited another day or two, it’s almost certain I wouldn’t be here to write this.

After ten days of high strength intravenous antibiotics, five surgeries and two blood transfusions I had both legs amputated below the knee. I spent a month in hospital, and have just completed my eighth week in a rehabilitation unit, with the prospect of going home next week.

I will eventually get prosthetic legs and go through the process of learning to walk again, but as you’ll read below, I’ve lost the only home I’ve ever known, having lived there since 1981, as well as my job of over 30 years - oh, and my lower legs, mustn’t forget those! I’m grateful to be here and definitely have a new appreciation for life, but there are lots of new complications to navigate!

The reason I’m asking for your help is that we currently live in a council flat - it’s on the first floor (second floor if you’re American) and has no lift. This means I can only enter or leave if I’m carried up or down two flights of stairs. Once indoors I can’t move between rooms because the doorways are too narrow for a wheelchair to get through, and the rooms won’t accommodate a wheelchair either, except the living room.

I’ve got a hospital bed and a commode now, and will be ‘micro living’ in the living room until the council are able to find a property for us. That could take months, or it could be weeks.

To put it in a nutshell - my mum in on a basic state pension and I’m on my basic pay. We don’t have any savings and we didn’t plan on moving, or on the endless list of aids and appliances I will need. So, I’m asking for your help.

What we will spend funds on

Times are hard for many of us at the moment, and I’m unbelievably grateful for anything you feel able to contribute. I hate even asking, but a few people have expressed a desire to help, and I’ve been told that when people want to help, I should put pride aside and let them. For once, I’m doing just that.

If you can’t donate, or even if you can, please share this on your social media channels.

I’ll update at leat weekly, with how my journey is going, and more often when there’s news.

With grateful thanks for even reading this (the even longer version follows!),

Kirstie

—————————-

The long version

I’m Kirstie, I’m 46, and I’ve lived with Type 2 diabetes since 2004. Over the years, despite living as healthily as possible my diabetes has steadily progressed and caused damage to my sight, my feet and circulatory system. I’ve been fully insulin dependent for several years now, and have had ten laser eye surgeries and ten foot/leg operations in the past eight years.

There’s the background, which brings me to where I am now. On July 9th 2022, after experiencing pain for several months, and spending the previous week in bed becoming steadily worse, I was admitted to Royal Sussex County Hospital, as an emergency case. Both feet were obviously infected, with the right one beginning to turn purple and black in places. I was feverish, had been sick multiple times a day for the past week, and hadn’t managed more than half a slice of toast in a week - not that it stayed down. I was hot/cold, and by that day, had started talking and texting complete gibberish. I had no idea what day it was, and apparently I asked my mum whether it was bedtime three times before 10am. The paramedics were shocked at the state of me and couldn’t believe I’d been working until six days previous, let alone walking around on my feet.

When I got up to the hospital and had been triaged, cannulated and started on fluids and intravenous antibiotics, I saw a consultant vascular surgeon. His initial assessment was that I needed surgery as a priority and that the foot infections were ‘very bad’. He warned me that I would never walk on my left foot again, as a minimum, that I was almost certainly going to lose the right leg below the knee, that I had a DVT in the right leg and that I was at very high risk of either losing both legs, or having a stroke/and or heart attack on the operating table, and quite possible never waking up.

I signed the consent forms for surgery and potential amputations below the knee, though initially they hoped to just incise both feet and drain the infections, hoping that and the high strength antibiotics would buy enough time maybe ‘get away’ with further surgery to amputate my right foot.

I had the first surgeries to clean and drain the infection in both feet/legs the next day, and it was a further nine days before the next surgeries. They were to clean and debride the left foot, and maybe to amputate if necessary, and to amputate the right leg at below knee level.

In the days leading up to the next operations. I went through the surgery preparation four times in five days. Each time I had to be nil by mouth from midnight, wait most of the day to be taken down to theatre, only to be told there was an emergency case and my surgery would not happen that day. It was draining, mentally, emotionally and physically. My blood sugar levels were all over the place because of the repetitive ‘nil by mouth’ orders only to then find I was allowed to eat after all, by which time I was hypo, feeling sick and just wanting them to get on with it. I was also in severe pain from the incisions in my feet and legs - an inch or more deep, multiple inches long and left open to drain, with dressings changed - agonisingly - every day. Morphine became my best friend!

On Tuesday 19th July, I finally had the next surgery, during which they amputated my right leg below the knee, and cleaned out and debrided my left foot. The next day a surgeon was at my bedside shortly after 8am to tell me that the right leg needed to be amputated above the knee because the pus from the infection was as far up as the knee joint. They also needed to amputate the left leg below the knee. They would have done both of these during surgery, but hadn’t got consent from me for anything more. I spent the morning breaking the news to my mum and getting my head around it, still groggy from the anaesthetic. Then, at midday, the surgeon was back, along with the surgeon who had operated the previoys evening. They looked at my right leg -stump- and conferred, then said they thought that when I went back to theatre yo have the left amputation performed, they could give the right stump a thorough flush and clean, and leave it as below knee. By this point I didn’t know if I was coming or going …

The next few days passed slowly. I’d begun to adjust to the idea that I was now going to be a double - or ‘bilateral’ - amputee and just wanted the second one done. I’d had two surgeries on each leg by now with another, more invasive one to come on the left leg. I was spending a lot of time being told my surgery would happen, going through the ‘nil by mouth’ rigmarole, gowning up and waiting to be taken to theatre, then being told it was called and having to wait another day, so I was still having hypos and my blood sugar and emotions were all over the place. Now that I had had one amputation I was confined to bed, unable even to go to the toilet, so I had a catheter, a drip for fluids, one for insulin, and I had to use a bedpan and be washed by nurses. I had no dignity, no privacy, no peace and quiet, and at that point as far as I was concerned, no future.

On Friday 22nd July my left leg was amputated below the knee, so at least I now had an almost matching pair!

I spent two more weeks in hospital, and thanks to a *lot* of internet research, and encouragement from my mum, friends and family, and the nursing staff, I began to realise that my life wasn’t over.

It will be dramatically different, but once I’m fully healed, and have my prosthetic legs, have learned to walk again, and have my wheelchair and maybe a mobility scooter, I’ll be able to get mobile and independent again. I’ll be able to go shopping, go on holiday and generally do most of the things I did in the days when I had legs.

I spent a month in hospital, and have now been at a rehabilitation unit

After 41 years, we have to move from our lovely three bedroom town centre flat, because it’s first floor without a lift, and the rooms and doorways are too small to use a wheelchair. This has been the hardest thing to deal with for me. We’re waiting for the council to allocate us a new home but not only will it only be two bedrooms, meaning I’ll lose my craft room, but it may well not even be in Lewes.

I also can’t return to my job, where I’ve worked for 30 years, as there are four flights of stairs to the staff canteen, the toilets and the locker room.

So, in one fell swoop I’ve lost my legs, and (for now) my independence and mobility, my job, and my home.

I hate asking for help, but I’ve realised that I need it right now. We will need to pay for the move itself - removals, electrician to disconnect the cooler and reconnect it at the new place, wheelchair suitable flooring throughout, window coverings etc. I also need certain mobility aids and medical supplies which aren’t supplied by the NHS. If we don’t move, I’ll be confined to the living room because you can’t get a wheelchair through the door. We can’t move unless we can pay for everything, but it wasn’t in our plans and I’m now on basic pay, while my mum is on a state pension. Any help received would be used *only* for these reasons - moving, medical equipment and nothing else.

If you’ve read this far, thank you. If you can’t, or don’t want to donate, please consider sharing this on your social media pages, and if you are able to donate - thank you from the bottom of my heart, but please still share!

I will aim to post an update every week, and definitely when there’s news to share as well.

Thank you for reading!

Kirstie