British Liver Trust
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Hilarious

Hi I been under the microscope again liver results are fine so I am happy,. But I have been diagnosed with severe anaemia (explains why I am knackered constantly) anyway they are now trying to figure out the cause of this and consistent low RBC, WBC and platelets there have been talk of bone marrow transplant and other extreme alternatives the latest one I have just had bloods done again to test for parvo!! I nearly pee'd my pants laughing when I got told that one... I am getting frustrated because even though they looking into why ?? They are not treating the anaemia in the meantime... Anyway has anyone else experienced these bonkers tests ??

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Was trying to figure out what RBC was and Royal Bank of Canada came up 😂. No anaemia here but my iron levels were extremely low apparently so have been taking tablets for the last couple of months. Not sure if it's because of post transplant medications or the fact that I've gone almost vegan. Still enjoy the odd steak but very rarely.

Keep bugging them until they look into everything and give you something to treat your anaemia.

All the best

Klodian x

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I always do bug them lol probably why they coming out with some ridiculous ideas now haha x

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Hey jojo, boy they love you dont they 😂😂. So where did parvo come from lol.

Great news regarding your liver ! they should be treating you for that but then i dont know much on post transplant meds on what's allowed or not🤔. Just keep on at them hun and do the best you can untill they decide what they are doing. Was wondering if you had heard from identity ? I did Pm him last week but not heard back. I do hope he is ok ? Xx

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Lol wish I knew I getting worried about what they are suffering with hahaha I haven't heard from him hopefully getting some treatment x. How are you doing?

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Hi hun.sorry late reply. Moved home Monday. Omg !! What a day of disaster 😲. Never ever do i want to go through that ever again. So much went so wrong.. im Still trying to recover.

Well i heard off identity, which i am glad of

Nice to read all the comments to your post lol. Im.not too bad hun.just suffering from 2 prolapse disc in my lower back and osteopenia in right hip. Xx

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Hi Jojo

Wrote to you via PM, happy to hear your experiences. Hopefully my turn next!

AS for the Parvo ... I lol also - isn't that a doggie disease?

Anaemia - well I can't comment really, low iron (we all know), my iron is over 2,000! I am guessing the meds post op are a cause? Will check it out later and come back if I find anything.

In the meantime, happy Valentines!!! Jx

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Everyday is a school day I guess, it seems there is a human form or Parvo Virus. mayoclinic.org/diseases-con...

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I know I googled myself after they told me what they were testing for hahaha just flabbergasted xx

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Just don't go chasing the postman. LOL.

Katie :)

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Hahaha hahaha I like that one 😁😁

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Has he recovered from the last time, lol?

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Forgot to say, are you still taking any anti-viral meds? When my WBC cells were low, which was apparently caused by one of the anti-rejection meds, despite stopping the med concerned the WBC and nuetrophils only started to recover once i'd come off the anti-viral medication i was also receiving too. So may be worth checking that too.

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Been like this for a long time they just bothered about it now but let them get on with it I would just like them to give me advice or something to improve my iron levels x

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Priceless! 🤣

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Glad they have figured out why you were dragging! I went through the anemia had to take pills 3 or 4 times a day for months until the count came up! Happy Valentines JOJO.

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Sean just had his parvo test back -negative. 🐶😀

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Shocked 😱😱 hahaha 😂 xx

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The anaemia for me is a constant, it’s either take a bunch of potassium, b-12 , diet change bunch of iron, I drank ensure yuk . My RBC and WBC and platelets have been way off the dr asked me why ? I was told it could be from a sinus infection to more serious things so I have put off the bone marrow testing a lot. I am still working on trying to breathe consistently. I been told I need or should see a oncologist, that sounds like pain so maybe you go first then I’ll go. I keep asking if you get cancer anywhere else prior to a transplant what happens ? Good luck I hope they help you and you get some answers.

🤠DLD

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What are your B12 and folate numbers looking like? A good test to see if your bone marrow is producing new red blood cells is a reticulocyte test. These are immature and newly created red blood cells. If low, it can be a bone marrow problem. Portal hypertension can cause the spleen to destroy RBCs, WBCs and Platelets. Do you know if you have PH or an enlarged spleen? Erythropoietin test is also good to have to see if your kidneys are giving off the hormone needed to stimulate The production from the bone marrow.

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ive been anaemic for years... i had a very enlarged spleen... not sure if this has any bearing but since transplant its improved a bit but still on low end of normal... they have finally given up hunting with me.... have had colonoscopy and endoscopy because of it.

seems to be one of the things that goes along with some liver disease.

i had infusions of iron which raised it temporarily but it soon dropped back to my normal.hope they stop hunting.

best wishes cazer

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My dog Digby had a confirmed case of parvo virus, lost a lot of blood thru bowel. They made him better eventually, 16 years later he is still going strong.. They keep coming up with odd ideas about me at the moment, question mark of PSC, so another MRI on way, then they did another raft of blood tests and sent me for a chest xray as they said I had lost a stone in weight. I haven't, but I just go along with it all. Keep well Melanie

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Hi

Hope you get sorted soon JoJo, you've been through enough.

As regards ensure, it is yuk as didtx said. When my son was diagnosed with Crohn's disease aged 12 he had to drink between 5 and 7 bottles of the stuff for 6 weeks! He couldn't have anything to eat either! Ended back in hospital after 4 and they said do you want ham and chips! He was so happy he could eat again.

Anyway I've digressed a bit!! You all take care. Lots of love Lynne xxxx

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Knowing we all know most this, I found this interesting under long term side effects of Interferons that are used to treat hepatitis C they can have other serious side effects in addition to the boxed warning effects.(really) These can include decreased blood cell counts. If you have decreased blood cell counts, that means you have low levels of red blood cells, white blood cells, and platelets in your body.

Your white blood cells fight infections. Having low levels of these cells can cause more frequent infections. Anemia Your red blood cells carry oxygen to other cells throughout your body. Reduced levels of red blood cells can cause anemia. Your platelets help your blood clot. So when you ask wtf is happening now more then likely it’s the reaction to the medication we took, there are lots of the same problems showing up with people who took theses medications. I think someone forgot to tell the masses of people who took all this, oh by the way your about to enjoy a whole heap of 💩

healthline.com/health/hepat...

🤠DlD

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Hi Jo Jo.

I've had a terrible time with lived diase and cirrhosis. Caught a bad coli which caused my liver and kidneys to shut down. Spent almost a month in hospital and luckily puuled through. Docs gave me 48 hrs to live!! Am home now but on oxygen with hepatomology syndrome. Gutted!! Going through the ropes to get on transplant list. Way to go yet but plodding along with dics orders. Have pain in my joints and confined due to oxygen. Praying I get accepted and live a happy life without the constant nasal prongs!! Any ideas how to stay sane greatly appreciated.

Lisa from Down Under

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Hi Lisa,

I’m in down under also. It seems to me that everyone’s cirrhosis is the same but different if you know what I mean? I’ve not yet had your symptoms but I’ve had decompisated cirrhosis for a year and a half now. I’ve had;

1, 3 life threatening internal bleeds

2, osteoporosis

3, so many stomach drains that I’ve lost count

4, ataxia

5, one lung drain

6, PAIN

7 lost a lot of weight

8, gained shed loads of weight that my bones have a lot of trouble getting me out of a chair

9 oepedia (I can’t spell)

10, ammonia poisoning many times

All I can say is heads up to you. You live in a great part of the world. Not many can say that.? People are great on here.

I can’t find any Aussie forums like this one? Can you recommend any? Someone with more knowledge will be along soon to help you out.

Cheers,

Brett

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Hi Lisa sorry to hear about your troubles x .. my kidneys failed on me a few times it seems to be quite a normal effect of cirrhosis. I am sure you are aware of the basics eating well, no salt and I know you are housebound which I was for last 3 years but just walking around your home garden if you can to keep somewhat active ... Mentally to keep myself going I just concentrated on one day at a time I had too to keep sane, I tried to have hobbies which I could do which were not too mentally draining and I suppose my sense of humour and friends and family helped me through the worst and also a lot of people on here did as well, they understand the boredom, worry and frustration you feel no one who hasn't been through it can't .. I am sorry I can't give you a definite answer of what will help we just seem to cope with bad and good days alike xx 😘

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