Just more great news 😁: I just wanted... - British Liver Trust

British Liver Trust

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Just more great news 😁

jojokarak
jojokarak
β€’54 Replies

I just wanted to share with everyone and the world πŸ˜‚πŸ˜‚πŸ˜‚πŸŒπŸŒŽπŸŒπŸŒŽ

Had a hospital appointment yesterday at my local hospital, haematology again lol

Anyway I got some answers to my low platelets I have an auto immune condition called itp which is immune thrombocytopenia I am sure some of you have heard of it 😊

I also got my bloods back today from yesterday and my bloods are the best, the best and I say it again THE BEST they have ever been I am sooooooo God damn happy 😊 😍😍😍

54 Replies
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I am over the moon for you!! πŸŒ›πŸ‘πŸ˜˜

jojokarak
jojokarak in reply to Bootandall

Thanks darling 😘 I could cry with happiness at the moment xxx

Bootandall
Bootandall in reply to jojokarak

How did they diagnose the itp? l have consistently low platelets too, normal-ish blood results.

AyrshireK
AyrshireK in reply to Bootandall

Bootandall, your low platelets are probably a common side effect of having cirrhosis and portal hypertension - your spleen is gobbling up your platelets. In JoJo's case she's post transplant so cirrhosis is no longer and issue.

Bootandall
Bootandall in reply to AyrshireK

Thanks for both of your replies. I have had low platelets and splenomegaly since 1974, when I had chemo, that's why I was given the transfusion that gave me the HepC. I was just wondering if maybe it was pre-existing and how would they tell. I may ask at my next appointment, I have some old records to compare. But may be best to leave well enough alone! 😊

jojokarak
jojokarak in reply to Bootandall

Aye sometimes it is especially as it doesn't cause any major problems x

jojokarak
jojokarak in reply to Bootandall

Been monitoring me consistently every 2 months for the last 3 years and my platelets even though low are stable, they done a number of other tests to rule out the nasties and they requested old blood results from another hospital I was under and she compared them... Only way of confirming is bone marrow biopsy but she said it was painful and pretty unnecessary In my case πŸ˜‰

Treatment for it is steroids and lots of them lol but I trying to get off them so I said it doesn't bother me on a daily basis so I would rather not and she happy with that I know if I cut myself it's straight to casualty x

Hidden
Hidden in reply to jojokarak

jojokarak- great you had good results. Odd that same day your haematologist diagnosed your ITP, so did mine! He said no treatment necessary unless it falls below 30 when immunosuppressant would be prescribed, but you probably have that anyway don't you? My platelet score was 78 at lowest and 130 at highest and glides up and down like this. At the moment I'm not bruising much. Sometimes I have spells of bruising. Is yours like that? Variable? Although it is called idiopathic ( unknown cause) it is associated with autoimmunity, and I have PBC which is an autoimmune condition. Well, the more gets chucked at us, the tougher we get! x

Great news on bloods x

jojokarak
jojokarak in reply to Steak

Thanks my dear 😊 😘

Blooming fantastic treacle! Shout it so the whole world can hear! x

jojokarak
jojokarak in reply to Poobear69

I am 😊 lol it's perfect timing as well its my 3rd anniversary in October x

So good to hear ... not unlike your man getting his masters a few weeks ago, basically another set of brilliant results. Cxx

jojokarak
jojokarak in reply to chrisw740

Certainly is but mine beats his πŸ˜‚πŸ˜‚ and he agrees x

chrisw740
chrisw740 in reply to jojokarak

Yep you definitely win jojo... 3 Yr anniversary coming soon too. An excellent 2019 all round. Cxx

Hidden
Hidden

Hi so so happy for you. You've been through so much, it's great that you have good news. Lots of love and hugs Lynne xxxx

jojokarak
jojokarak in reply to Hidden

Thanks darling 😘 😘 😘

Hidden
Hidden in reply to jojokarak

You are very welcome. Xxxx

Jojo, wonderful news, it's fantastic to have a good set of results. I imagine it's been so long for you, you must have forgotten what it's like!!

Regarding ITP, when I was working as a midwife we'd often find people with low platelets diagnosed with ITP, then it was referred to as idiopathic (of unknown cause) thrombocytopenia? Don't know if now they have realised that it has an immunity element, thus changing the name?? Anyway, that's not relevant if you aren't planning on treating it (just interesting to me) . In those days those with ITP weren't treated, it was just a matter of regular checking of clotting factors etc. I'm glad you were supported in your decision to not take more steroids, they are probably reassured by the fact you're sensible and know what you're doing.

Keeping things crossed this positive trend continues.

Best wishes

XWassX

Hidden
Hidden in reply to Wass71

Wass71- I have low platelets, described yesterday as "ITP, probably autoimmune" which was the best possible reason because I do have a couple of managed autoimmune conditions! Interesting that you knew this as a midwife - I had pre-eclampsia as "an aged primip" 38 years ago, and always wondered if the autoimmune process was underway or triggered then. Do you have any knowledge of a connection?

Wass71
Wass71 in reply to Hidden

Hi, tbh, I don't know. I myself have PBC and I'm sure that was triggered by gallstone pancreatitis which occurred weeks after pregnancy. Pregnancy can cause gallstone problems due to hormonal effects on bile. As they aren't sure what causes PBC, I think they assume the genetic 'switch' is turned on by infection/environmental factors/physiological stresses etc.

I do know that those with auto immune illness often have more than one. So this might be why you were predisposed to ITP.

I did read some articles where studies were done to see if pre eclampsia had an auto immune element, but I don't think there was a desisive answer. Current thinking is to do with the formation of the placenta in early pregnancy, and restricted blood supply due to size of vessels.

I hope you are well now

Sorry I can't be of more help, but I'm not currently a practicing midwife, so I'm a bit out of date, medical thinking and understanding advances very quickly, so it's easy to get out of the loop.

Best wishes

XWassX

Hidden
Hidden in reply to Wass71

Wass71 - Thank you for your reply. I read a few articles that didn't result in anything decisive, and there was ongoing study in Oz, including a registry of pre-eclampsia, but I was overtaken by fatigue, SS, PBC, ITP, so that's enough for now, without me looking greedily around for any more. :-) How are you at the moment?

Wass71
Wass71 in reply to Hidden

Hi, I don't want to hijack jojos post, so the quick answer is I'm now on the transplant list. So not brilliant, but can't complain.

Thanks for asking, good to hear your conditions are managed, does sound like you've been a bit greedyπŸ˜€. X

Hidden
Hidden in reply to Wass71

Wass71 - thank you - very good point about Post Hijacking. We've exchanged replies on PBCF about preparing for tx. I only had experience of colon resection/hospital stay. I'll look-see if you posted here and join thread! :-)

jojokarak
jojokarak in reply to Wass71

Thank you 😘

Since I was a teenager my mum and dad have always told me if I cut myself I needed to go A&E so I knew something wasn't right, consultant asked me yesterday had no one ever investigated why but no one ever did but because it never caused any problems it's never bothered me 😊

And I not sure about change of name as I have never heard of it before yesterday x

Wass71
Wass71 in reply to jojokarak

I looked it up, and yes they have changed the name, which means they have discovered it is an immune condition. After many many years of not knowing the cause that must have been quite a revelation. I'm glad after all this time you have more answers

Take care x

Hidden
Hidden in reply to jojokarak

jojokarak - how did they know? Did you have a bleeding episode? (I'm not being funny). R what you say reminds me that I almost died giving birth from a sudden, huge blood loss. My baby was 9.5 lbs, tricky to deliver, and the obstetrician later said he reached the point of having to decide which of us to save! Luckily, both of us... Odd how things forgotten come back to mind, like joining the dots!

jojokarak
jojokarak in reply to Hidden

Not sure as I said above mum and dad told me as soon as I was going out alone/with friends but I started off in hospital when I was born I was in for a few months because I had a swollen brain through a traumatic birth so my guess is they found out then 😊 but because I had problems with ibs and then when I started walking my knees would dislocate the blood was put on the back burner.... But in all honesty it's nothing to worry about really it doesn't effect me in any way apart from when I need a procedure doing just to go in day before for platelets 😊

Hidden
Hidden

Yea !! Delighted πŸ˜€

Hidden
Hidden

πŸ₯³πŸ₯³πŸ₯³πŸ₯³πŸ˜ŠπŸ˜ŠπŸ˜ŠπŸ˜ŠπŸ˜ŠπŸ‘ŒπŸ‘ŒπŸ‘ŒI'm so happy for you JoJo ,,, such excellent news on your bloods!

Hows hubby?

Love and hugs Trish ❀

jojokarak
jojokarak in reply to Hidden

Thank you 😘

He doing OK, going back to work tomorrow phased return so fingers crossed it goes well ☺️ x

Hidden
Hidden in reply to jojokarak

Please give hubby my good luck for tomorrow!

Take care yourself too

Love Trish x

Hidden
Hidden

Fantastic news jojo! πŸ‘

Yes we talk about immune thrombocytopenia every dinner time... doesn’t everyone?

Milp

jojokarak
jojokarak in reply to Hidden

πŸ˜‚ πŸ˜‚ πŸ˜‚ I have renamed it now it's what I do, I have called it pacman πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚ when you think about it that makes sense

Hidden
Hidden in reply to jojokarak

Of course it does - eminent sense πŸ˜πŸ‘

Great news jojo. It's so uplifting to get good news. You will be walking on air now :-) :-)

I certainly am my dear 😊

And it's the first time in a very long time x

You make the most of it jojo. After all you've been through it's very well deserved good news :-) :-) :-)

That’s great news jojo and you deserve some good news. Long may it continue xx

Hidden
Hidden

Fabulous news jojo...really pleased for you πŸ€—πŸŒ»

Hidden
Hidden

Good Morning JoJo

Todays a new day full happiness for you both ! Enjoy and good luck to hubby

I'm sending you both loads of love ❀

Trish x

jojokarak
jojokarak in reply to Hidden

I will be enjoying having the house to myself πŸ˜‚πŸ˜‚ and he looking forward to work so all good xx

You have a wonderful day 😘

Hidden
Hidden in reply to jojokarak

I will too as lots to do outside! Enjoy your day alone JoJo ❀

Hidden
Hidden in reply to jojokarak

Hope your day went well ?

Love Trish x

That's great news xx

Happy for you darling.. stay healthy :-)

Great News Jojo, I'm so so happy for you 😁😁😁. I will check up on ITP, never heard of it before. I have very low platelets like you, 28 last time, and if I cut myself, I bleed like a pig πŸ˜₯πŸ˜₯πŸ˜₯, not to mention my weekly nosebleeds. Did they offer anything to improve the platelet levels?

David

jojokarak
jojokarak in reply to davianne

It's steroids but I don't want them anymore lol

davianne
davianne in reply to jojokarak

Thanks Jojo, Oh steroids, they worry me a lot. I think I'll just stick to bleeding a bit 🀣🀣🀣

David

jojokarak
jojokarak in reply to davianne

Exactly what I said 🀣🀣

Mojo that’s fantastic news, you’re doing all the right things, well done. Jane xx

Bootandall
Bootandall in reply to P13jne

Love it, Mojo rising! πŸ‘πŸ˜…β€οΈ

Very happy!!!!

Big hug for you. Thank you for sharing!

Brilliant news I'm so pleased for you x

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