ive spent the most part of this year in hospital going home a few days to a week at a time then being readmitted to hospital due to not holding anything down it eventually ended in me getting a peg-j tube fitted via endoscopy all was going well but on monday the j part displaced and ended up in my stomach and the j tube had to be replaced with resulted in another hospital stay i recently went home again and we are hoping now that the tube will stay in place it is taped now to make it extra secure and im now on day time feeding the effects of the feed ahve mostly been good my hair and nails are growing i have more energy i sleep better and im no longer rapidly loosing wait i am really hoping this will continue , my joints have been upand down i am waiting now to have surgery to fuse my thumb and it will no longer stay n joint t all i have appts to see pain team and rhumetology finally and am hoping they can help and i have money saved to go to london to the hypermobility clinic privatly as nhs wales will not reffer me outside of wales im hoping london can help give a plan for the drs here to know what to do im glad to be home i spent christmas new year and easter in the hospital and my birthday is a few days away nd i really want to be home for that , im glad to be home with my chinchillas in a comfy bed and peace and quiet and looking forward to a birthday party on monday going to the cinema and having a movie and board games night at my flat and enjoying the little things
i went through a very down patch when the tube came out i felt like the last little piece of hope had been snatched away from me like the one thing that made things better and easier that was gone too , but im back on track now and hoping that this doesnt happen again
so in more detail , by the admission where i had the tube , i was no longer abosrbing my meds my thyroid was low magnesium potassium and vit b12 and d were all low due to malnutrition and no medication , i was in withdrawal from my antispychotis and anti depressants so i was no longer eating or sleeping and much of the time i was dehydrated as even water could not stay down , i came close to another admission for my mental health before i got admitted and when i did my blood work showed the problem/s the meds now all go down the j part of my tube and as long as its working i am well and stable , i was told that i also need a liver scan my ALT (one of my liver enzymes) was nearly 3 times what it should be , its come down but is still high we dont know why the liver enzyme is raised they have said not to be too concerned i have no pain other than where the tube is still new and i am not jaundice so fingers crossed that scan will come back clear i get seen by my gastro team next month to reveiw how the tube is going and i am hoping that i am continuing to stay the same weight and not loose anymore and that all will be well with that so i can start getting on with things rather than spending most of my time in the hospital
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