Wound care takes a lot of effort and time

After a few days, the tissue of my heel began to turn black but nobody did anything about it. Not even when I was discharged five weeks later and had to go back to the hospital every two days to get the dressing changed. They just said, “Maybe the tissue will regenerate and the skin will grow back.”

But it actually got worse over the next couple of weeks. The layers of black tissue started to peel off and discharge pus. So they removed the dead tissue and left the wound uncovered to allow it to heal.

But the heel never fully recovered. Instead, I had a thick layer of callused skin that kept cracking, oozed fluid, and smelt bad.

As well as the open wound on my heel, I couldn’t feel anything in my left foot or lower leg because a lot of the nerves were damaged in the accident. By the time I saw a team of neurologists and a neurosurgeon, three weeks had passed. It was too late to save the nerves then.

My first attempts at walking again were very difficult because I couldn’t feel anything from the middle of my lower leg down. I couldn’t tell when my foot was on the ground and when it was in the air. My coordination was gone and it was like walking with pins and needles all the time. I kept stumbling and falling over.

Another thing that happened because of the nerve damage was that I developed claw toes. So I had to have surgery to straighten them again to give me stability. I also had surgery to expose a nerve in my knee joint. The hope was that it would help with my loss of feeling. But it didn’t.

The doctors couldn’t see any way of saving the nerves in my lower leg and foot. They told me they couldn’t do anything and I’d have to accept it.

I had lots of problems with my heel over the next few years. The open wound never fully closed. My hopes were raised time and again but always in vain.

The first time, a surgeon wanted to reconstruct my heel using my calf muscle. He was pretty confident. “It’s no problem,” he said. “We’ll remove your large calf muscle, including all the blood vessels, pass it along under your skin and stick it to your heel from underneath.” I agreed to have it done, full of hope that I’d be able to walk properly again. In preparation for the surgery, they removed a large section of my heel and did something called “negative pressure wound therapy,” using a pump to remove the fluid from the wound. The idea was to ensure that blood could get to the remaining stump and the transplanted muscle would thrive.

Unfortunately, it didn't work. The muscle flaps turned black and died. I was left with a stump that had been cut at a 45 degree angle, making it even more difficult to walk.

The rest of the open wound was covered with a thin layer of temporary skin that they wanted to replace with a graft later. But the temporary skin wasn’t strong enough and it cracked open after three months. I ended up with an open wound again. It was painful and it oozed fluid.

But they still said I should keep trying to walk. I was given special orthopedic shoes, which were open at the heel, and a brace that was attached below my knee. I could walk fine but I still had an open wound on my heel.

The wound became inflamed, which resulted in bone inflammation that wouldn’t clear up. That meant three months of high-dose antibiotics on a drip, avoiding strain on my foot, and having to use a wheelchair.

Despite all that, the bone inflammation still hadn’t gotten any better three months later. In fact, it had spread and the wound had turned black, soggy and smelly.

The doctors told me they’d have to amputate my foot. They said there was another method, using chains of beads containing antibiotics. You put them in the actual wound, so the antibiotics can reach the bone better. But they weren’t very hopeful.

The suggestion to amputate came as quite a shock. And, though I didn’t want to lose my foot, I wanted to finally be able to walk and lead a normal life again.

So I decided to have the amputation. They removed the entire bottom half of my lower leg, not just my foot. The explanation was that there’d be a wider space to attach the artificial leg to, and I’d be steadier on my feet. Their words were: “You’ll be out of here in eight weeks with an artificial leg, walking better than ever before.”

I was feeling good about things, but not for long. One week after the amputation, the stump turned black. So they finally brought in someone with specialist knowledge in open wounds.

He recommended avoiding strain on the open wound and a thorough care regime for a couple of months. It was rinsed and cleaned every two days, any dead tissue was removed, and special bandages were put on to help it heal.

One of the nurses had special training in wound management. He was really helpful. He checked the wound every day to make sure it was clean and sterile. Each time, he spent 30 to 45 minutes with me, removing dead tissue centimeter by centimeter using tweezers. He also applied a special type of honey that helps wounds heal.

And – what do you know – six months later it had almost completely healed. Finally! They attached a socket for the artificial limb and gave me crutches, and I started trying to walk again. The idea was that the pressure caused by walking would boost the blood supply to the tissue and the small part of the wound that was still open would close up.

Instead, it made the open section bigger and it started oozing fluid again. As time passed, I had lots of pressure ulcers that burst, became inflamed, and then took a long time to heal. On top of that, I had pus-filled abscesses in the back of my knee. It was all very tedious and frustrating but I stuck with it.

The thing that worked best for me was a foam plaster and a dry dressing. That was much better than moist dressings containing hydrocolloid or hydrogel.

The wound was smelly, especially when it was inflamed, which probably wasn’t very nice for the people around me. But I was never ashamed of the smell. There wasn’t anything I could do about it anyway.

The thing that upset me much more was when I had to use a wheelchair and I was one meter shorter than everyone else. It made me feel less equal.

Living with an open wound means always having to be prepared. I’ve always got my “emergency wound kit” with me because I never know when the wound will burst open again and need a new dressing.

The stump is more or less stable now and I can attach the artificial leg and walk – with crutches. But the back of my knee feels constantly irritated and there’s usually an open wound there that oozes fluid and becomes inflamed. It’s always causing me trouble.

Something that’s caused me a lot of distress is the severe shooting pain I get all the way down to my foot. Just like someone’s rammed a knife into my lower leg. It’s been part of my life for almost thirty years now.

Over the years, I’ve tried all sorts of painkillers – from over-the-counter medication like NSAIDs to strong opioids like oxycodone, palladone and fentanyl. But they affected me mentally and I was always “out of it,” especially with the morphine-based products, so I stopped taking everything and decided to put up with the pain instead.

Things didn’t improve until I tried cannabis. I started off with cannabis capsules and then I moved to a spray. But neither of them were ideal. Today, I use cannabis flowers. I have a special vaporizer to inhale them with and it works well. It provides relief from the soreness of the wound and from the nerve and phantom pain resulting from the amputation.

I went to a support group too, but it wasn’t my thing. The guy who started the group put himself in the spotlight too much. And he was extremely positive about things and always joking around. Instead of helping, it left me feeling annoyed and like I needed to do better.

Having said that, local support groups can be very different. It always depends on who’s in the group and the group vibe. Maybe a different group dynamic would have been better for me.

Another thing that put me off was that you have to go to the meetings regularly. I don’t like talking about sensitive topics in front of lots of people. At the group therapy sessions at the rehabilitation clinic, my standard response was: “I’ll give you a one-minute summary of my story. That’ll have to do.”

I prefer to talk to someone one on one – like with my therapist or the guy who was next door to me in the hospital. We still chat on the phone every now and again.

I’ve had problems with wounds not healing properly for as long as I can remember. Either the tissue turns black and dies, or it heals very slowly and poorly. Specialists at various university hospitals have examined me in detail to try and work out the cause.

They never found an answer though. I haven’t got poor blood supply in my legs or diabetes. My immune system was fine too. I tend to get inflamed armpits and I have a slightly increased risk of blood clots due to a Factor V Leiden mutation. But I don’t know whether that’s got anything to do with it. When all the examinations were done, they just said, “It’s down to your genes. There’s nothing we can do about it.”

But that isn’t really very helpful. What I really need is someone who wants to get to the bottom of it. Someone like House, that TV doctor who comes up with weird and wonderful diagnoses when others have been forced to give up.

I’ve been through 20 years of wound care in hospitals and doctors’ practices now. And it’s really sub-standard. Many of them haven’t got a clue. They put a dry bandage on the wound – or a wet one – close it up and that's it. But wound care is something you need specialist knowledge for. It takes a lot of effort and time.

It tends to get neglected in the medical world. I don’t think doctors and nurses get enough training on it. On top of that, chronic wounds are something you see in lots of different areas of medicine but they haven’t pooled that knowledge.

In my opinion, good wound management and well-trained healthcare professionals are much more important for open wound treatment than what type of dressing you use.