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.

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Haven't blogged since August 1st, after some important family issues we have been having and mentally haven't had the energy to write anything. Also had to lower Citalopram dosage cause it was affecting my brain in a weird way. This has taken me a few weeks to get used to to a lower dosage. Woke up with a migraine this morning, probably with not eating much yesterday. I have these days where I'm not very hungry. It's been like it since I had the spine surgery back 2000. It can be very frustrating when people don't believe how hard it is for me to eat sometimes. I can put up with most things with my condition. But it's eating that give's me the most trouble.

On the 6th October I go for my yearly heart check up at the hospital, I'm more scared about getting covid when I go to this apointment. So I will wear PPE, a face shield that one of the carers got for me, a face mask over my mouth and wear bipap that has a filter. Hopefully will be getting a month piece ventilator next few few weeks, this will mean not having to wear a mask and instead have a straw to breath air in when I need it, like photo below.

It's coming up to the 20th anniversary of my spinal fusion surgery on October 2nd. Around the same time as the UK fuel protests and 4 months before the foot-and-month out break. Can't believe this was 20 years ago,

I have only recently had the confidence in the last 6 months to talk about these things. I also now have someone I trust to talk to now, that helps with my mental health and the loneliness so much. It Can feel very lonely at times when people don't understand how hard Duchenne does affect me. Adults with Duchenne tend to be forgotten about, although this is slowly changing.

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Updated: Oct 18, 2020

Content warning: Written about weight and overflow

Back in 2000 before the surgery on my spine, I weighed what doctors would consider a normal weight. At this time I had a good appetite and really enjoyed food. Than I had surgery and that's when everything changed.

While recovering from surgery in ICU, I had the feeling of needing a bowel movement every 3-4 minutes, It was a horrible feeling and could do nothing to stop it. One of the nights, dad went back to Sheffield for the night, I counted in one hour having that feeling over 20 times. This surgery did something to my bowels It stopped me feeling hungry. Every time I had food I wasn't enjoying it. I started lossing weight, hated having breakfast, was having 2 meals a day with nothing in between meals, gradually losing weight for 15 years. But in the last 5 years I've really started losing weight and now to the point where you can see my ridcage. I started trying to put weight on, never really treated it seriously.

Then in March I started eating a bit better thanks to someone I won't mention. This person made me realise that you only have one life, and you need to live it. But I still wasn't eating enough.

On Monday July 27th 2020, I started my weight gain journey of putting 20lbs on. In the morning I now have 2 slices of toast and going to start having porridge with banana also. Lunch, I have soup before anything else I eat, with about 300-400kcal of chocolate after. Then dinner, have whatever dad cooks. At 9pm I have a 500kcal protein shake. In between all that I now have snacks. At same time time everyday I take a photo of my ribcage, to see myself gain weight. As I can't get weighed, this is the best way I can see progress.

I will update the weight gain journey on this. #Big60Challenge

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