CLL Support Association
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Not sure what's going on

Morning everyone

Hubby had his transfusion on the 18th July, he was given 2 units instead of the 3 possibly 4 as first told. He says he feels better i.e. able to walk without feeling whacked.

The problem I have is, he is looking yellow and his whites of his eyes are yellow indicating jaundice. Obviously something is now going on with his liver......has anyone else come across this with their CLL.

He is due a reversal stoma op on Tuesday 25th July so I hope this won't prevent the op taking place.

At the moment we seem to come out of one tunnel and straight into another !!!!!

Hope someone can shed just a bit of light on this for me.

Susiecarer

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Yellow eyes and skin are often a sign of a high bilirubin level, and or liver stress.

I get this myself and was told initially that it was Gilbert’s Disease, or Gilbert’s Syndrome, and ‘ not to worry, it’s benign ‘..!!

After more investigation with a hospital specialist I had blood samples taken and the bilirubin level was over 100, when the normal is 17.!! After a scan I was advised that my liver was slightly swollen and perhaps under stress, due to the CLL.

I then did loads of investigation, and discovered that stress on the liver can also be caused by eating spicy foods or food with herbs, since it is the liver than has to process and eliminate these food additives.

A change of diet, and some very careful supermarket visits, has enabled me to reduce my spices and herb intake to almost zero. My bilirubin level at the last check was now 22, or close to normal.

The haematologist / oncologist was extremely curious when he saw that my bilirubin level had dropped so significantly, I explained what I had done and he was surprised as most doctors are unaware of this.

High bilirubin levels or Gilbert’s Disease has not been much studied since most doctors consider it benign, however it does have other effects, notably stomach or digestive issues, or IBS.

My recommendation would be a quick check for the bilirubin level, plus full liver function tests to make sure that nothing else is going on. Followed by a change of diet, and then after a few weeks another bilirubin level check.

Good luck and get the full liver testing done soonest..

Dick

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Thank you for your reply Kwenda. Hubby is due a FBC blood test on Monday, so hopefully his LFT will show if there is a problem. Failing that he is due another LFT plus FBC blood test on the 24th August and we see the specialist on the 25th. Hopefully questions will get answers.

Susiecarer

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In some places a bilirubin level is not always done with a CLL blood count.

Also a liver function test is mostly not included..

Suggest you specify the testing to be done when you get the blood drawn, so that they draw the correct number of testing tubes..

Not sure that I would wait until the 25th... All the blood test results should be available within 24 hours, so after you check the figures you can request a more urgent meeting with the specialist, if required...

I always request that a copy of any blood test is sent to my GP; then after 24 hours I go and demand a copy from the GP and BY LAW the GP CANNOT refuse you access to your own data........

Dick

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Maybe contact your husbands specialist nurse and see if she can get him an earlier appointment Susie and tell her your concerns.

Also if you are on the PKB site the full blood results should be there.

Will your husband be having his blood test in DTU or at your GPs even tests done at the GP's show up on PKB

My husband was in DTU for 2 units of blood last Tuesday too, we were probably sat nearby to your husband!

I hope you get some answers soon and all can go ahead for the stoma op on the 25th July.

Best wishes

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Hi Crafty Girl,

He is in the Churchill this Tuesday for a stoma reversal op as well as at the JR on Monday for a blood test, so I shall have a word with the doctor then and ask them to contact Dr Schuh regarding the yellowing of the eyes, even though his skin has now gone to normal coloring.....I'm afraid the Clinical Nurse isn't quite matching up to Leanne (previous one as you probably know) as I asked to see her last Tuesday and she never came over even though she was in the Day Centre when we were. Too busy at the moment was the message we received !!!!!

Just not 100% convinced he has had enough blood especially after receiving IRRADIATED blood when I was told he wouldn't have that as he had not had any treatment !!!! Apparently the doctor (whoever he/she was) was the one who decided how much blood was needed......

Will keep you updated after Tuesday.

Take care

Susiecarer

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Hi susiecarer

ManyUK hospitals only use irradiated blood. That's what I've been told.

I hope things work out well for your husband and yourself.

Sue

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We must try and make ourselves known to each other.

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I'm not sure how to get into Pkb...have asked my GP for copy of hubbys test results and he couldn't print it off !!!!!

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So,sorry the clinical nurse could not make time to see you and your husband Susie.

She is definitely still adapting to the new job, Leanne was amazing, hopefully she will make time to see you both soon.

Yes it does seem strange that we communicate here and then in real life could be sat next to each other and not know it!

You are obviously not at DTU this week but maybe message me when you may next be in as we are usually there most weeks at the moment. Hopefully appointments will coincide.

Take care of yourself too.

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