Update as promised: Hi everyone. Hope... - British Liver Trust

British Liver Trust

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Update as promised

jules45 profile image
30 Replies

Hi everyone. Hope all is well with you all. I recently posted, received a number of supportive and helpful replies and promised I would update you after Die been to the doctors about my low platelets. Went to doctors and discussed my dropping platelets and now have a diagnosis of Thrombocytopenia. The treatment he wants to give me is weekly self injections until reading goes up to normal range, but before he proceeds he has written to my hepatologist for his approval. I asked for a referral to a neurologist for the issue of bells palsy and left side weakness.

Can I ask you to wish me luck for Thursday for endoscopy and possible banding as I hate it

Love to you all

Julie xx

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30 Replies

hi julie ,,its good to hear from you again and it looks like your ontop of things ,,great ,,,,the bells is still with you ,im sorry to hear that it does take time to sort itself and i hope your Neurologist can help,,,Endoscopy ive had before the once ,,dont remember much about it now ,,be brave with yours ,,,,and im hoping no banding has to occur,,,,,been thinkin of you this week ,,regs your health and you giving me the meds i need to try for my neuropathology ,,tuesday cant come any sooner for the doc as its driving me nuts lol,,,, ive decided ill take anything as long as it eases the symptoms,,,have a good wknd Matt

jules45 profile image
jules45 in reply to

Hi Matt, thanks for that x are you going to ask for pregablin? The other name for it is Lyrica tablets. Had 6 varicies banded last year, 4 then 2. Different hospital this time that works under Cardiff so long journey. Going on my own with patient transport. I'll be chatty all the way there and silent, clutching my stomach all the way home. Hope you get sorted on Tuesday.I tried morphine for the neuropathy pain and even that didn't work yet the tablet I'm on now kills the pain in 10 to 15 minutes. Let me know how you get on

Julie xx

namescapesme999 profile image
namescapesme999

Hi Julie how low was your platelet count...in the last year my count has gone up from under 50 to the most recent of 106 without any medication..no-one seems to be doing anything other than my acohol free regime...good luck on Thurs..hope all goes well for you...best wishes Rob xx

jules45 profile image
jules45 in reply tonamescapesme999

Hi, mine has been dropping on each test. It was 60 4 weeks ago and 50 4 weeks later. It started going down 2 years ago approx, but I have the classic symptoms of Thrombocytopenia which are low platelets, bone probs, blood pin pricks on legs, my hepatologist is doing my endoscopy but because it's not a discussion appointment I can't ask him anything which is frustrating until my next out patient appt although my gp has written to him.

Take care

Julie x

jules45 profile image
jules45

Spelling bad, tablet turned ide into die. Predictive text!,

jules45 profile image
jules45

Thanks Chris, have alternated between sedation and throat spray and its going to be sedation this time. Have arranged for someone to stay here the night like the hospital tell you to as I live alone. Hope no banding but they always find some!

Hope your ok and thanks again

Julie x

Catfishjumpin profile image
Catfishjumpin

Best of luck. I hope this time it goes so smoothly you are all smiles afterwards. I had that happen once. Sending love.

jules45 profile image
jules45 in reply toCatfishjumpin

Hi, thanks for your supportive message, Very much appreciated.

Take care

Julie x

tobie profile image
tobie

Hi jules just wanted to wish you all the best with the endoscopy .

Regards xx

jules45 profile image
jules45 in reply totobie

Thankyou xx

auntcoco profile image
auntcoco

Good luck !!!!

auntcoco profile image
auntcoco

Good luck~~~~~

jules45 profile image
jules45 in reply toauntcoco

Thankyou xx

Sarahppp profile image
Sarahppp

Hi Julie. Sending you lots of love and luck for Thursday ❤️🍀❤️🍀❤️🍀

jules45 profile image
jules45 in reply toSarahppp

Uurgh, the thought of it makes me queasy. Thanks for your kind words xx

dawning profile image
dawning

Hi Julie I hope all goes well for you and I wish you good luck and love and peace today and everyday. Xx

jules45 profile image
jules45 in reply todawning

Lovely message, thank you so much. May I wish the same to you xx

PCBnPBC profile image
PCBnPBC

I wish you luck with endoscopy, not my favourite intervention either, better once its over! keep strong. Charlie.

jules45 profile image
jules45 in reply toPCBnPBC

Hi Charlie, thank you. Why does a 10 minute endoscopy feel like an hour?Love julie xxi

PCBnPBC profile image
PCBnPBC in reply tojules45

if you get enough sedative, it feels like 5 mins! that is key!

jules45 profile image
jules45 in reply toPCBnPBC

Ha ha, I will ask! Xx

LAJ123 profile image
LAJ123 in reply toPCBnPBC

The right amount of sedation - feels like it never happened !

Louisepeters profile image
Louisepeters

The very best of luck to you - I'm sure you'll be OK.xx

jules45 profile image
jules45 in reply toLouisepeters

Hi, like Charlie said, I'll have sedation. Thanks for your support xx

dooley1 profile image
dooley1

Good luck, endoscopies are yuk yuk yuk but over quickly thankfully, all our good wishes will carry you through! Sedation all the way and go to another place in your head. 😑 Hugs x

jules45 profile image
jules45 in reply todooley1

Hiya, thanks for that. It doesn't matter how many times you have it done, you never get used to it. I will go for max sedation I've decided. Best wishes.

Julie xx

LAJ123 profile image
LAJ123

Lovely name for an upcoming lecture at the Royal Free by a professor Epstein, gastroenterologist. He is pioneering patient friendly endoscopies. The title of the lecture ?

The tunnel at the end of the light !

Jim

jules45 profile image
jules45 in reply toLAJ123

How interesting and a great title, ha ha.

Hope he hurriesup with his project in time for my next one

Julie xx

AyrshireK profile image
AyrshireK

Best wishes for your endoscopy Julie - a wee hint from hubby who you'll no doubt remember has rather been through the mill with endoscopy and 42 bands - hold your breath whilst the throat spray gets skooshed and in that way it won't trigger your gag reflex & definitely take the sedation - you shouldn't be very aware at all of the procedure.

Hubby never realises how short a time he is away and doens't remember anything afterwards - yep he still dreads it when he knows an endoscopy is coming up but he now tolerates them far better & hasn't had a failed one for over 2 years.

Rooting for you.

Katie x

jules45 profile image
jules45 in reply toAyrshireK

Hi Katie, yes, your husband's 42 bands was in my mind recently. He certainly has great experience of this dreadful procedure. Ì am grateful foŕ your advice. You are very generous with helping others with various problems as well as dealing with your own. How are things with your husband? I'm quite shocked that my hepaþologist is doing it and not a gastro I've never met as before.

Thanks Katie

Love julie xx

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