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My experiences with pressure sores: Living with a Spinal Cord Injury

My experiences with pressure sores: Living with a Spinal Cord Injury

Pressure sores (also known as pressure ulcers or bedsores) are injuries to the skin and underlying tissue, primarily caused by prolonged pressure on the skin. They can happen to anyone, but usually affect people confined to bed or who sit in a chair or wheelchair for long periods of time. Pressure sores can affect any part of the body that's put under pressure. They are most common on bony parts of the body, such as the heels, elbows, hips and base of the spine. They often develop gradually, but can sometimes form in a few hours.

After my RTC in 2008, pressure sores have always been a worry to me. If I develop one, it can result in weeks of pressure relief whilst it heals, which means long periods of time spent in bed, often missing out on things I had planned. I have found that times like this are not great for my mental health; I like to be able to get out and about and have interaction with others, so along with my team, we really try and minimise the risk of me developing one.

In 2012 I developed pressure sores on both of my legs where my bottom meets my thighs. We had a small family gathering for Father's Day at my parents' house, which I still remember not being able to fully be a part of as I had to be in bed on my side.

I remember that I was in a great deal of pain, so a GP came out to administer Oramorph (liquid Morphine). I don't remember this visit, but my parents have said that the medication did help me, although apparently, I didn't know who they were!

The District Nurses were coming out frequently to dress the wounds. They tried to use vac pac dressings (which is an active wound therapy as opposed to a dressing) on my leg wounds from my fasciotomy (a limb saving procedure) after I developed compartment syndrome from my accident (when your muscles fill with blood and they need to be cut to relieve pressure), but they wouldn't close.

To be able to help my pressure sores to heal, I was admitted to the spinal unit in Sheffield, which was the hospital I was admitted to after my accident. I was initially admitted into the intensive care unit as there wasn't a bed available in the Spinal unit, but they wanted me to be in Sheffield ready for when there was.

The only way I can describe it is that I was put in a coffin-like blow-up bed that was filled with sand so that I had absolutely no pressure on my wounds. Unfortunately, as I had to lay flat in the bed for pressure relief, I developed ventilator acquired pneumonia so I had to spend a few extra weeks in intensive care whilst I recovered. While in intensive care, though, I had an operation to remove all of the dead tissue from inside of my wounds ready for them to be stitched up again at a later date. This allowed for natural healing to take place.

When I had recovered from pneumonia, and there was a bed available in the spinal unit, I stayed for a few extra weeks until my wounds had healed a bit.

After eight long weeks, I was discharged and came home just in time for the anniversary of my accident on 11th August.

My routine had to change though once I was back home. I wasn't allowed to have showers as the seat on my shower chair was too hard and even sitting on it for 20 minutes wasn't good for my skin. I had to adapt and have bed baths instead. We found a blow-up sink which meant I could wash my hair whilst in bed as I'm not a fan of dry shampoo!

I also had to be very strict with the amount of time I was in my wheelchair or sat up in bed and had to choose to either have a 3-hour session in one go or two sessions of 2-hours. I would choose each day what to do, depending on what I had planned.

In 2016 I had an accident where I broke my tibia and fibula with a spiral fracture when my right foot was hit by a trolley in a garden centre and pushed right round to the right. I obviously couldn't see my foot and still remember my carers face as she tried to not look panicked for my benefit!

My parents (along with the rest of my family) were in Mexico at the time for my brother's wedding and were having a relaxing day on the beach when I called them to put an end to that! My dad offered to fly home straight away, but there was nothing he could do so they flew home as planned two days later.

If I was an able-bodied person (someone that can move) the doctors would have operated and reset the affected bones in place with screws, however in my case, the doctors said that I would need to have my leg potted from my toes up to the top of my thigh.

Of course, there was a risk with having a pot on that I would develop a pressure sore, and unfortunately, when I revisited the fracture clinic after a week, I had developed one in my heel. This resulted in me needing to go to the hospital every week for 12 months to have my pot reapplied and to check how the pressure sore was healing. As time went by, I also needed to have the dead skin removed, which encouraged new skin to grow underneath.
We did speak with the hospital around the impact of patients with an SCI having a pot applied and the risks of developing a pressure sore in the hope it would help decisions in the future. I understand that it is difficult when your local hospital isn't a specialist spinal injury hospital, and they won't see a lot of spinal injury patients, but hopefully, the more people like me speak about their experiences, we can work together with hospitals to make visits or admissions a positive experience for spinal injury patients.

After this accident, I found out that I have Osteoporosis which is very common among people who have had an SCI. I now have calci-chews every day and have a B12 injection every three months to help with my low bone density.

I broke my left leg two years before when I stood up for the first time using my standing wheelchair, which is another story, but over the last few years, there have been many jokes about how I'm the only person who's paralysed that can break both legs! I still find it funny when people look confused as to how I could break my bones when I am paralysed!

In 2018, I developed a pressure sore (which started like a friction sore) on the bony bit of my back where my spine sticks out. It started whilst using my exercise bike, which meant that my T-shirt would rub against the lining of my wheelchair. Unfortunately, it got to a point where my care team couldn't manage it, which can happen with a pressure sore, and the district nurses had to attend to do my dressings.

I was limited to getting out of bed and going out and about again. It was a long summer that year, so very warm and I had to spend six weeks having to do 22 hours a day side lying. I couldn't get out in the sun, I missed meeting up with people and doing my school talks. It wasn't a good time at all if I am honest.

So what have I learnt over the years and put in place to help prevent a pressure sore from developing?

  • I changed my wheelchair, and fortunately, my new one is much better pressure wise.
  • I have a foam boot that goes on my right foot to protect my heel in my shower chair as I have scarring from the pressure sore I developed from breaking my leg, making it an extremely sensitive area.
  • My team check the vulnerable areas of my body, especially my heels, elbows, back/spine and my bottom frequently and they also apply zero base which is a brilliant moisturising cream to help protect my vulnerable areas.
  • I have regular daily pressure relief.
  • We are in touch with the district nurses at the first sign of breakdown.

You know your body best and should never be afraid to ask the questions, raise and escalate any concerns you may have or ask for assistance from your district nurses. It's best to ask the questions or share your concerns than end up having to spend weeks recovering from a pressure sore; trust me!

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