British Liver Trust
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Would you believe it??

So I have been diagnosed with all what is wrong with me for over 4 years now....my GP records state everything that is going wrong. I had routine bloods on Friday....I have now been back to the doctors for investigative bloods tests because it looks like I am anaemic! 🙄🙄 literally rolling my eyes!

If they have a look at my bloods form the past 4 plus years they will see this is a normal thing! Lol!

I am wasting resources!!

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Chelle... nothing suprises me these days 😏. I have lost count how many times i have nearly lost it through incompetence and lack of communication/ reading medical notes etc.. it is plain to see why your anaemic and im not a bloody dr 😩lol xx bless you. Deep breath.. release 😂. Hope your feeling a bit better now x

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😑😁

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I’m feeling a bit better thank you. I think it’s all about just taking each day as best you can. How are you x

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Oh thats good.

Yes i agree there, i do.that myself one day up next day not so good. I am not too bad chelle thabk you. Not very mobile due to other health issues, same old sleep trouble but still here x x

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Hey Chelle. I hope you don’t mind me asking this.. I have followed your progress for a while now.. I think we may have similar issues.. polycyhthemia/bud chiari syndrome.. right? Anyway.. I was wondering what prompted them to put you on the transplant list? It gets thrown into conversation at some of my consultations ( I call it the t bomb 🙄) but as I am working part time and feeling relatively stable.. I’m thinking it’s worst case scenario.. but you too seem to be still working, etc so it’s made me curious.. hope it’s ok to ask. Keep well xx

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Of course it’s ok to ask. I have liver Cirrhosis and portal vein thrombosis. I have lots of bleeding and tumours in my liver. I’m Still working full time. Because my liver keeps stopping (almost like a heart) they aren’t sure if next time it does it that I will be able to recover. I am on a LOT of medication to keep a ok x

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Hi Chelle, were your tumours caused by your MPN? I was lucky in that my liver recovered but as I still have portal hypertension it always makes me think about what'll happen in the future.

Has your MPN remained stable over a number of years?

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Thanks Chelle.. I see.. I have portal hypertension but they haven’t found any tumours and no bleeding varisces (as yet).. sometimes the not knowing what the future holds weighs so heavily.. I (like you) try to remain upbeat and always tell people I’m fine.. it’s comforting to know I’m not alone in this. I wish you well. Keep your chin up. I enjoy your posts. God bless xx

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Email me when you like. If we’re close enough we could meet for a coffee? X

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Thanks Chelle. You are such a giving person. I live about 4 miles from Loch Lomond so coffee is probably not an option ( I think you may be in the south of England??).. that would have been lovely tho.. I really appreciate your support xx

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Chelle

Hi again, I know you know I am relatively new to all this, but like you say anaemic - like how hard is that to diagnose? Are you wasting time and resources, HELL NO, they need to listen to us. In my case, I have HPS, 100% classical HPS, yet they want me in for a week to run tests. To rule out other possibilities ... damn the "other possibilities" also mean liver transplant is vital. So why spend a week examing me when the end result, come hell or high water is a liver transplant? add to this I can get my Oxygen supplier to manage my Oxygen for 2 days if I am booked in as an outpatient (saving a bed and 5 days), the system is just bonkers. No wonder the NHS (love as I do) get such a hard ride.

Listen, I know you are a great ambassador for us all, maybe I can assist? I design websites, I really feel a calling that we need to raise more awareness. If you would like a website, I will make one for free and you can post to the world not just here? Let me know your thoughts .. offer stands for all people on here!!

ps - I am also the founder of rent-a-student.co.za - a non-profit helping students - we got 50,000 of them, so before I sell it (due to my health), shout if you need likes :)

Keep well and god bless you!

Jx

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Who is this latest person to say that your anaemic, was it Dr. Hannibal Lecter?

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I have been anaemic for as long as I can remember, either slightly or severely. I think they are just covering there backs to be honest. I am in to see Kings Monday and then my oncology Tuesday so I am sure that they will be all over it. the letter came from my GP.

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Yes but as long as they're pointing out things you already know. I had a situation where I had jaundice, was feeling very ill and went to the GP. They told me to go to the hospital and get a blood test. Then I never heard anything for weeks and eventually went back to the GP. My bilirubin levels were in the 300's but nobody picked it up and told me.

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Your right - so long as I am under their radar then it can't hurt!

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