Some very good news.

We got the results of the blood tests Steven had last week. Everything was normal. The biggest relief was that the liver functioning results were fine. After the terrifying news 5 years ago that Steven’s liver was packing up, it feels incredible that we’ve managed to reverse that process.

I forgot to ask about the weight results at the time but checked yesterday and Steven has lost nearly 14 stone since those dark days in 2014. By cutting out the anti psychotic drugs that he didn’t need to be on in the first place. That he was introduced to because the people at the ATU didn’t have the imagination or the humanity to notice that they were killing him. Instead, they fell back on parent blaming and I was trapped in endless, pointless dietician meetings. I still feel so angry about this.

The weight has been reduced without any major changes to Steven’s diet. He eats practically the same stuff as he did 5 years ago. Diet was never the problem. It was the fucking drugs. He could still do with losing perhaps another 3 stone and the weight loss has definitely slowed down after the initial shedding but its heading in the right direction.

The medication was Killing him and now he’s got his life back.

Ironically, Steven and I are heading in opposite directions, weight wise. This time last year I was planning the over 60s bodybuilding competition. At my last check up, they discovered why my gut has expanded considerably. During the operation, in order to get to the tumour, they had to cut through the abdominal muscle wall. Unfortunately, it didn’t repair properly and collapsed and now sits on my lap like a visiting infant. Ironically, before they discovered the cause of the problem they offered to refer me to a dietician, again assuming that food was the problem. I’m having to get my head round the idea that no amount of clean diets or sit ups will make any difference to this protuberance.

I can just about cope with that. I’m 60. I can get pass the idea of having a six pack. But Steven has his whole life ahead of him. He needs his liver. He needs to be able to dance to The Thompson Twins without gasping for breath. As long as he is in his own home with carers that care, that can happen. There is no way he will end up on deadly drugs whilst he is a Cowley man in his own home.

But if someone ever decides he needs to be back in an ATU…….

8 thoughts on “Liver”

  1. A similar story to my daughter who gained 8.5 stone in St Andrews and emerged weighing 17.5 stone @5′ tall – with type 2 Diabetes as an extra disease to add to brain injury, Renal transplant, Crohns and Epilepsy By reducing the Risperidone she has lost 6 stone with 2 to go.

  2. Blimey – if Steven loses another 3 stones then that would equal about one of me. That’s an extraordinary amount added by those bloody drugs.

    Sorry that your abdomen has been damaged – is it repairable with surgery? I suppose it will depend on what other health effects it could cause.

    Hope you are keeping well despite those complications.

    1. Thanks John. I could have more surgery but the surgeon isn’t very keen. He said it carries quite a large risk of potential further damage to my bladder and possibly the bowel. A blow to my vanity but at the moment, I don’t want to take that risk.

  3. Mark the description of your gut as ‘a visiting infant’ keeps me in stitches even as I type this. It is your use of black humour that makes you so bloody interestingly human.

    Seriously though the thoughts of Steven ever going back into a ATU must be like ‘The Sword of Damocles’ hanging over your head.

    The drugs used to calm, placate, control or just restrain are not tested on people with learning difficulties. Parents that monitor the drugs given to their loved ones who cannot explain their feelings, are often not believed when they report awful side effects. Waved away as not being intelligent enough to understand about medication.

    The ugly truth is that medication is being given to people in ATUs to shore up staff shortages or worst still to compensate for the lack of knowledge on how to interact with people with LD who are angry and upset. In many cases the drugs don’t work but instead give other disabling illnesses to the people taking them.

    What ever happened to STOMP? Please not another initiative destined for under the carpet.

    1. Thanks Pauline. It’s only been in the last couple of months that I’ve been able to find any humour in the whole experience of the operations and the heart attack. For the first few months afterwards, it was too raw and emotional.

      1. Mark I do realize that you have gone through so much, and most probably are still very raw and emotional at times, but I must add that you have, through your tweets and blogs, encouraged so many people to fight on and to give them hope.

        Steven was so fortunate to have been adopted by you and your wife. You saved him. You rescued him. You loved him. You would say he has given all that back to you in his love for you and you would be so right. Nevertheless how many of us would have had the tenacity to live through all the set backs, the put downs and the crass stupidity thrown at you when you were fighting so desperately to keep Steven close to you and to give him a decent family life. Many people would have fell at the first post, including me.

        Thank you for sharing all the ups and downs and the humour with us. Bless you.

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