Would you believe it??: So I have been... - British Liver Trust

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Would you believe it??

Chelle_ profile image
15 Replies

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_ profile image
Chelle_
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15 Replies
Millie09 profile image
Millie09

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

BSA-3 profile image
BSA-3 in reply toMillie09

😑😁

Chelle_ profile image
Chelle_ in reply toMillie09

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

Millie09 profile image
Millie09 in reply toChelle_

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

Ticchic66 profile image
Ticchic66

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

Chelle_ profile image
Chelle_ in reply toTicchic66

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

MarkD6701 profile image
MarkD6701 in reply toChelle_

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?

Ticchic66 profile image
Ticchic66

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

Chelle_ profile image
Chelle_ in reply toTicchic66

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

Ticchic66 profile image
Ticchic66

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

john110865 profile image
john110865

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

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

Chelle_ profile image
Chelle_ in reply to

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.

RodeoJoe profile image
RodeoJoe

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.

Chelle_ profile image
Chelle_ in reply toRodeoJoe

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

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