How Pressure Sores Affected This Wheelchair User's Life
by Anthony Lue
I’m warning you now...this is going to get graphic!
Have you ever had a hole in your body? I’m not talking about a piercing or a cut... I’m talking about a gaping hole that you can insert one, two, three fingers or sometimes even a hand into?
What is a pressure sore?
This is what I experienced the year of 2010-June 2011, and still, to this day, I battle my skin on an everyday basis. I had a pressure sore! More commonly known as a bedsore, or, technically, a decubitus ulcer.
Generally, only older adults in the hospital or nursing homes get these sores from not being turned enough while lying down in bed.
Essentially, a pressure sore is the breaking down of skin, tissue and muscle from the inside out. As an example, put your elbow on a hard surface and leave it there. You will eventually feel the discomfort and move.
Unfortunately, for many people who develop skin issues such as bedsores and pressure sores, they frequently cannot feel or move themself to alleviate the pressure. That’s when the bone starts to burrow a tunnel from the inside of your body out. You can get pressure sores in many places on your body, but mainly, contact is made with some prominent bony areas.
Where do decubitus ulcers appear for wheelchair users?
For people in wheelchairs, pressure sores are primarily found on the butt and feet! The butt because you’re always sitting on it and feet because they are frequently down or up resting on something, so the heel is a spot where many people with quadriplegia have issues. Whereas the people with paraplegia generally have a pressure sore on their butts, and that is where mine was! My right buttcheek is pretty well nonexistent now due to the pressure sore eating away all of my tissue and muscle I had left.
So how did this happen? I was in the best spinal cord hospital in Canada and had a team of therapists when I left! Well, what can I say? Unfortunately, people fall through the cracks. Heat, pressure and friction are the three main things that will cause the skin to break down for me. This was explained to me both when I was in, and when I left the hospital, but as a 22-year-old male, I just wanted to get back to life.
Maybe I was moving too much
I was out with my friends, going to the mall and driving my ’87 5.0L Mustang that I had just bought off a customer at the shop. I didn’t realize that all of my activity would contribute to a pressure sore. I thought you just kind of got them from not moving around enough. I moved around too much, and with my cushion situation not being the best, there were times when I would bottom out, and my bony butt would be sitting on a tough, rigid surface.
On top of that, I wear a condom catheter and leg bag 24/7. Back then, I didn’t. I left the hospital on a schedule of peeing every 3.5 - 4 hrs, and there were inevitably lots of times where I just pissed my pants because I didn’t know it was coming! In case you didn’t know, sitting in pee is horrible for your skin! The worst part was that there were times when I didn’t even know I had wet pants.
This pressure sore went from bad to worse
Soooo! Between my very active lifestyle, wet pants and lack of good people to talk to when I lost my therapy team, the pressure sore started. At first, it was just a red spot. Then a red spot with a tiny hole on the top. Then that small hole started to spread. I would go to the doctor, and they would say that it’s like an iceberg and it was worse underneath compared to the surface. The doctors and nurses said that I needed to lie down most of the day, and I was like, yea, no screw that. I continued life, and the pressure sore just got worse.
It got to a point where I had nurses coming in up to 2 times a day to change my dressings. Yes, the pressure sore got so bad that I had to have nurses coming in to help me manage this hole in my leg/butt. There is this stuff they called “packing ribbon.” The nurse would clean my wound and then take this roll of 0.5cm-1.5cm ribbon tape or gauze-like tape and pack it into my wound. I would lie on my stomach, and then she would use a big q-tip guiding the tape into my wound to fill up the one central hole and three other river-like channels that had opened up off of the primary pressure sore spot. There were times when up to 1 meter of packing ribbon was inserted into my wound.
The worst part of this was not the nurses, not the inability to sit up or go out. It was the smell. Have you ever smelled rotting skin? Have you ever smelled your own rotting skin and tissue? Well, I have, and it’s disgusting. The nurses had to come every day and help me with the bandages because the wound would leak revolting bodily fluids that stunk and prevented the wound from healing.
Warning! It's about to get more gruesome*
Next comes the “VAC!” Yes, the “VAC” Can you guess what the “VAC” does? Well, let me break it down for you. They tape a hose to your butt cheek, and this machine sucks out all of the muscle, tissue and nasty juices that your body is now producing as it’s essentially decomposing while you’re still alive. When I say that the pressure sore was worse than being paralyzed, I’m not joking! I had no appetite; I couldn’t go anywhere or do anything. I was stuck on my side and my stomach for almost an entire year.
Christopher Reeve died from complications resulting from a pressure sore
The breaking point came when I kept ending up in the hospital, and the doctors and nurses told me that I was going to die. They said to me, “do you know who Christopher Reeves is?” I said, Superman! As people referred to me as Superman early on in the injury, and then they were like, “Ya, he died from a pressure sore infection like the one you have!” I could not believe this. The man had all the money in the world and still died from a pressure sore infection because he didn’t want to pay attention.
I have a friend that has a saying that rings true in almost every aspect of life. “If you fail to pay attention, you pay with pain!” Truer words were never spoken. When they told me this, I became scared, to tell you the truth. I had worked tremendously to get over becoming paralyzed to be brought right back down by a pressure sore, and the possibility of dying made everything super real. At that point, I started taking my antibiotics religiously. In May of 2011, I was admitted into St. Michael’s hospital downtown for a couple of days before my surgery.
As the Good Lord would have it, I was five doors down from one of my best buddies Mike Martin. I grew up with Mike at Valley Farm and then in his house where the door was never locked. I often found myself multiple times a week, not only through elementary school, but also through the beginning of high school. Mike was very sick after a particular Durham region hospital messed up his surgery, inevitably killing him. He was one of my brothers, and his death ruined several people’s lives after that. I was just super happy that I got to spend those last times together with him, even if we were both in the hospital fighting for our lives.
The surgery that saved my life
A few days later, I was under the knife, and Mike was going home. When the plastic surgeon went in, he nearly cleared out all of the dead tissue and muscle to promote healthy healing. He also shaved down the bone that gave me the pressure sore as I have no skin left there now. If the bone was left as it was, there is no doubt in my mind that it would have created another pressure sore within weeks. If you sit on your hands and push up, you will feel what I’m talking about, and they are called your ischium (one of the three bones that form the pelvis. So I now have no right butt cheek and a massive scar that goes from the middle of the butt cheek down my hamstring. The entire incision is about eight inches long.
After my surgery, I was immediately shipped back off to Lyndhurst, where I did my initial stint in rehab. To say that I was less than impressed is a massive understatement. I was so angry! To top it all off, they took my wheelchair home, and I could not move or get out of my bed on my own for weeks. In comes the BANANA CART… this thing was my new wheelchair while at Lyndhurst. It was probably the most embarrassing mode of transportation I’ve ever used. I’m pretty sure I’ve picked up a little kid’s pink bike one time before and rode it home because I was tired of walking. Haha, this was far worse!
It was a stretcher with two big wheels on the front and two small castors on the back. This was my new wheelchair and my means of getting around the facility. It was like I was a tractor-trailer and all the other wheelchairs were smart cars. I had to do everything on my stomach; eat, sleep, pee and yes, defecate.
Being humbled beyond belief just lit a fire underneath me even more, to get back to life and tear a hole in this world. I spent over one month on this damn banana cart before being allowed to sit back up in my chair—15 minutes in the morning and then 15 in the afternoon. Every day I was able to sit up a little bit longer.
Now, nine years later, and although my skin is still sensitive, depending on what I’m sitting on, I’m just happy to be alive and making a meaningful impact in people’s lives.
Adaptive Clothing for Pressure Sores
These Game Changer Jeans are probably one of the best things I have encountered for people in chairs since being in the chair. I’ve had many clothes, whether it’s jeans or track pants, create skin issues for me. When Izzy came out with IZ Adaptive, it changed the world. Now with the Game Changers, there is no going back, and people with disabilities will be able to be comfortable, sexy and live their best lives yet. They are light and breathe well. They are very stylish, and my favourite part about the pants is that you don’t have to worry about looking happy in the front or showing off my hairy butt at the back! Since trying the Game Changers a couple of months ago, my skin health has been the best since walking. I’m slowly getting rid of every other pair of jeans in my closet to replace them with my game-changing pants from IZ Adaptive.
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Photographer @mayafuhr
