Pre assessment thoughts

[Indre123]

PRE ASSESSMENT THOUGHTS

October 2020 i received a letter that my transplant assesment will take place early November.Wow that was quick!Later i got a call and all the information in the letter was explained in detail.I will have to stay in King’s acomodation for a few days while all the tests will be completed.Because of the pandemic nobody couldn’t go with me!I have to do this on my own.I felt sad as immediately i thought about my kids ,that i have to stay away from them.What i will tell them,how they will react,are they not to small to understand what is transplant?They migt be very scared 😱 I was worried about them more then i was worried about me😖Hey but that’s me i have to find the bright side of it😜So i started to think about staying away from my family as a treat😂"I might use it as a SPA day for me😜I will take a book i never had a chance to read,i will take a pampering face mask,maybe i will even watch a film 🍿In peace and quiet...😂"Yep!That’s it,now i started to get excited about this acomodation stay🤷🏼‍♀️😜

I looked through the schedule of my appointments and of course googled about every single one😜"Arterial blood sample,chm what is that,should be just fancy name for a blood test🤔"Noooo that was not just a fancy name,it’s totally different 😱🤦🏼‍♀️I didn’t like what i found,google says it is painful 😖Hey but that’s google,always telling the worst!"I must ask in my favourite AIH support group!"Unfortunately i got the confirmation that it is painful😖Now i was worried again and my "SPA" trip was a bit ruined 🤦🏼‍♀️🤪But can i ask sedation for that?Or general anaesthesia would be the best😂Well a girl can dream,can’t she😜?Of course i am joking,nobody would do that😂So i have to survive😜

later in October i had another appointment with my consultant.We had to discuss my CT scan results.I wasn’t worried at all but what i heard totally shocked me!"You have a clot in your splenic vein".What the hell is that!!!I really freezed for a few seconds,i don’t know why ,but clot sounded very deadly to me🤦🏼‍♀️😜Dr said they found anticardiolipin antibodies in my blood,that means my blood is to thick and i can develop clots anywhere in my body.But of course they do have some treatment for that.At first i have to inject my self with blood thinners!!!Say what??!!!Inject myself???But i am so afraid of needles.This upseted me a lot and i thought it will be impossible.I am not that brave to stab my tummy or my legs with the needle!!!I was thinking to ask my sister for help ,at least until i get used to it😫Dr’s said that later i will be on blood thinner tablets,it’s just a starting point 😫oh well…

Also they found blocked bile duck,it was mentioned that later i might need a procedure called Endoscopic Retrograde Cholangio-Pancreotograpgy.Cool name righ?😂😂.So let’s call it ERCP 😜

I was referred to Hematology clinic for my blood thingy(they call it Antiphospholipid syndrome or HUGHES SYNDROME ).Somehow i was very brave and managed to inject my self with no help.It wasn’t the best feeling in the world,but either wasn’t tragic 😜The new thing for me was,to go for blood tests very often and keep an eye on my blood thickness (INR),so warfarin clinic can adjust my dose accordingly.My legs was covered in bruises from injections,but soon i was on warfarin tablet and could forget self torturing with needles 😜

I was a bit worried that my blood clot could prevent me from getting a transplant.But Dr’s explained me that it shouldn’t be a problem.

It got harder to stay calm and happy around my kids as my mind was usually around my illness.I tried not to think as much as i could,but not always successful.I knew that one day i have to tell my kids what’s going on,just was still figuring out how🤦🏼‍♀️And also decided to do that only if i will go on the list.My pred dose was increased to 7,5mg as my bloods started to creep up again.And i couldn’t believe that moon face started appearing even from such a little dose.It wasn’t at it’s full bloom and probably not everyone could notice that.But i did.I called it baby moon face😂It’s sounds much more nice then it looks.And actually first time i was so happy that we have to wear masks in public.So i could keep my baby moon face in secret 😜

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[Indre123]

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[Indre123 in reply to Indre123]

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That’s instagram:)Thanks for reading ❤️

[Astro2020]

Hi Thanks For the request my thoughts would be ring the help line at British liver trust. My experience of endoscopy is that when you undergo the procedure relax and ask for sedation and don’t refuse the spray breath and swallow as the tube is fed in.

[Howard_Sherwood]

It would help if you just stated the medical facts and stopped using emojis – they don't help the reader help you! Also, I can't work out what you're asking.

[Indre123 in reply to Howard_Sherwood]

oh wow:)i just shared a post from my blog:)Some people like to read what others experience:)if you don’t like emojis you can just stop reading my posts:)I am not asking for any help:)Thanks for your opinion:)have a nice day

[AyrshireK in reply to Howard_Sherwood]

Hi Howard, Indre is recently transplanted following a torrid journey with Auto Immune Hepatitis and other conditions - she isn't asking any questions just sharing her experiences and her journey which she has also got out there on various other platforms all to raise awareness (hence the links to her other pages on Instagram/Facebook etc) - it's basically a blog of her journey to date, her ups, downs and highs, lows, fears and joys. Obviously some folks might find it useful to travel the journey with her.

Katie

[Indre123 in reply to AyrshireK]

Hi,thanks,you worded this much better than me:)I can see clearly it wasn’t the right place to share:)I thought different as many in here struggle,so sometimes a light read with a bit of humour wont harm:))