Youtube Video at bottom of page of surgery I would have had
Today marks the 20th anniversary of my spinal fusion surgery. As someone with Duchenne we develop scoliosis as our back muscles weaken. For me this started at about 12-13 years old, I would go to see my consultant Professor Galasko at the now closed Pendlebury Children Hospital. Dad would drive us there from Sheffield. I would have x-rays of my spine every year, until August 2000 when my spine curvature was more than 45 degrees old, I was 15 years old. This ment having to have spinal fusion surgery, They explained to me and dad the surgery I would be having, I had to leave the room, didn't want to hear the details. This surgery is required with duchenne as my spine would eventually crush my lungs and heart and probably kill me.
Me and dad went to our caravan a week before I had the surgery. It was at the same time as the fuel protests were happening across the UK in September/October 2000. I think the reason we went to caravan was because my mum was getting a cold and I didn't want to catch it. My grandmother and grandfather came up for one of the days, they also brought some stuff for my 2 week stay in hospital. I had a Win98 Time UK laptop that I wanted to take with me so I could play the Sims. We had a great time that week. Then Sunday arrived, the day before the surgery. We travelled from Bridlington to Manchester in the afternoon. We got there and I went onto the ward, I got weighed and went to bed. I was shitting it. Didn't sleep at all that night.
It was the morning of the surgery, I went to call my family and then called mum. I started to cry, it was a major 9 hour surgery, that I wouldn't wake up from for nearly 2 days. I was really scared that I was going die.
I took a pre-med, this did nothing to help me relax. About 30 minutes later it was time! Me and dad went down to the operating theatre, well accoss to it, as the hospital was on one level. The Anaesthetist was waiting for me. I was lying there and he was looking for a vein, so that he could put a cannula in. He went for it, I don't know what he did but he somehow missed and the pain I got was so bad I started crying. Getting flashbacks to the pain now! Anyway he eventually put the cannula in, then the anaesthetic was administered through the cannula. I went straight to sleep.
I remember waking up at 8 pm on Tuesday 3rd October. Was so relaxed even though I had a breathing tube down my throat and couldn't talk. I would drift in and out consciousness for a the a day or so. I couldn't talk, so they gave me a pen and paper. Which I needed because dad sat on the corner of the bed and I was getting pain, because of how he was siting on my bed. It was pulling my shoulder, It took me 10 minutes to explain to him to get off the bed lol.
It was Thursday and it was time to remove the breathing tube. Before removal the nurses wheeled in a defibrillator and they got a oxygen mask ready. I was so scared again, I asked my dad why they brought a defib in, he said don't worry, it's there incase something goes wrong. They removed a tube from my nose, then went for the breathing tube. I can still feel it being removed now. It was a horrible choking feeling, I required the oxygen mask for a few minutes, until I was breathing normally again. They then moved me from ICU to the step-down unit.
Warning: I talk about overflow diarrhoea, the most horrible feeling I have ever experienced.
This is where I started having trouble with my bowels and the worst few days of my life. I started having a feeling of needing a bowel movement, every 5-10 minutes and going with no control whatsoever. On one of the nights in one hour it must have happened about 11-12 times. It was literally the Ipecac Drinking Contest on family guy but the other end:
Yes it was disgusting and I never what to experience that feeling again! Also having a catheter removed and a new one put in for first time was another trauma I had to deal with. I was in the step-down unit for a few more days, then on I think it was Sunday, I was moved to a general ward. Where I had my own room, because they thought that the overflow was caused by something else and they didn't want me to pass it onto others on the main ward. On the Monday I was hoisted into a chair for the first time since the surgery, then I was taken to the bathroom, so I could see myself in the mirror. It was weird seeing a scar all down my back and my spine so straight. Over the next few days the overflow was no where near as bad and we were told that we could go home on the Friday, this was 12 days after surgery. Friday arrived and I was a bit scared of the journey home, as I felt very fragile and I was still getting used to my straight back. Dad drived us back home to Sheffield.
This spinal surgery and the NHS are the main reasons I am alive today at 35. But I feel though I've wasted the last 10 years of my life. So this is why I decided to blog about my life, try to get more healthy and move out of my parents home so I can actually have a life of my own.