Can anyone help me understand all this?

OK Folkestone, new and still in shock. i was sentirely to gynaecological as I had symptoms of ovarian cancer, one of which was ascites. I was urgently admitted to acute medical (told at the time I had cancer somewhere due to raised ca125 but later told not).

So had the ascites drained 4.6 litres, had an ultrasound which they said was clear, liver normal size etc, had a ct which they said was clear then 24 hours later they said showed diffuse fatty infiltration with a simple cyst present.

My lfts showed AST 48, GGT 155, ALP NORMAL AT 132, INC 1.1 LOW ALBUMIN 27 AND PROTEIN 56. ASCITES FLUID SHOWED 30 POLYMORPHS AND NO ORGANISMS.

I'm going to have a liver biopsy through the jugular vein. has anyone had This?

Are my lfts that bad? how can ultrasound consultants x 2 and ct specialty x1 come up with different findings on the fatty liver to the last ct consultant? why do I need a biopsy when this is what the ct Says? could it be worse than fatty liver if that is what the ct says it is?

I'm so confused, was given different information by each of the 9 drs I saw and am really scared.

Did anyone else experience applying stigma and behaviour of staff? when asked how much I used to drink and told the truth (1 to 2 bottles wine a day) the Dr came back with surely you mean whisky. I felt bullied and harassed not to mention the monumental technical cocktail ups by nursing staff.

Can anyone help me?

Thank you.

7 Replies

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  • Sorry that on top of dealing with a difficult and worrying situation you had to deal with insensitive staff.

    Trust me, not all medical and nursing staff are like that. I had serious liver failure which resulted in a transplant in March this year. I've never shied away from the fact my liver disease was alcohol related and not once did I have any judgmental attitude from any staff involved in my care. I hope when you get the tests and any required treatment you have a better experience.

    I think Its a positive step to be sent for a biopsy as its the only real way they can get a definite diagnosis.

    As for the jugular route, my understanding is that from a bleeding point of view its safer. I've had the needle route as well as the jugular. With both the intravenous sedation was enough to make it pain free and quite easy. I think I prefered the jugular route.

    The problem with seeing so many doctors in a short time is that its difficult to take it all in. Did you have somebody with you when seeing the doctors ? If not, make sure you have somebody you trust with you. That way you can ask the right questions as if you forget anything your friend / partner can nudge you to ask. Always have a list of questions and tick them off as they are answered. At the end if you are still not sure, ask for a clear explanation and what happens next.

    In the meantime take good care of yourself and dont be afraid to go to your GP if you become unwell.

    Jim

  • Thats awful, is it possible to get another doctor? After my biopsy of the liver, i told them i had a pain in the center of my back. They did not believe me, offered me tylenol and i tefused it saying it will not affect how much pain i am in. They saw me as an alcoholic and a drug addict. Finally they tried to release me telling me to sit up and i quietly said i cannot sit up my liver is contracting and i am in pain. I had been like that more than 2 hours, they notified the doctor and he had to tell me my liver might shut down, the biopsy had gone wrong, they hit a blood vessel and i was bleeding internally. I had to spend two nights in intensive care. I got lucky it stopped bleeding but not for hours. I have also had excellent experiences but if you think something is strange respect your thoughts then decide if you want to stay with them. I am sorry for the poor treatment it sounds like you are getting. Best wishes

  • Jellybabe70 unfortunately unless youre tee total alcohol is blamed for liver problems and most staff and consultants have little sympathy. I doubt any adult alive has not made decisions that could have been better, so stay strong and focus on getting better 💕💕

  • it's about how it affects your liver rather than how much. I found some medical staff brilliant and some very judgemental. they were going to run more tests but dismissed my boyfriend with a liver diagnosis so far as I can see solely based on his drinking. we are now waiting for a fibro scan. I hope you find out what is wrong soon and that all goes well for you.

  • Huge thanks all. I am convinced they are going to tell me I have cirrhosis and from the child pugh chart that gives me a life expectancy of 1 to 3 years. I am terrified.

    I don't have anyone to go with me, I'm a widow so it is just me and my 25yr and 16yr old kids. the drinking became a problem when my husband died and I got made redundant due to government change.

    They treated me like I was thick, I have a PhD Ffs!

    They made loads of mistakes from recording that my husband was at home to care for me (technically he is at home, just in a large plastic tub in my study), they put down I was unemployed when I'm not, they put down I was wearing incontinence pads and used a walking frame (the patient in the next beds details in my notes) when I was going out of the hospital all day and walking to the supermarket to get food and newspapers for other patients . not to mention the nurse who left an open drugs trolley unattended unlocked and her friend who came in cleared a shelf of drugs and hide them in an office drawer. that was just the nurses.

    Would jcirrhosis not show up on Ct? they never seem to be straight with me and I no longer trust them. I don't know my gp, I've only ever had emergency appointments for minor infections in my life so have never seen the same Dr. I'm kind of avoiding everything until I have got more information. everything seems to say if you have ascites it is cirrhosis and not fatty liver.

    I know the ggt is high but I have read of people with reading of 600, albumin was low but I'm making an effort to eat more protein as that was something I have always been bad about.

    Thank you all so much.

  • I think the nurse who hid the drugs was probably teaching her colleague a very hard lesson - not a prank. Number one sin for a nurse is to leave an unattended trolley.

    As one of your children is 25 - would he /she be able to go with you ? After all whatever the outcome your children will have to be involved.

    For one appointment my sister came with me. When I had the transplant assessment my 22 yr Daughter came for the 'education' session. After that for the really difficult appointments my partner came with me.

    Until you have a definitive diagnosis I wouldn't over worry yourself with too much information, especially as it may not be what is wrong with you.

    In the meantime you will get lots of support and encouragement from all of the concerned and caring people on this site.

    Jim

  • hello and welcome. I have had several biopsies through my jugular. To be honest make sure you ask for light sedation . That way i actually slept through them. One i didn't and ill be honest i hated it. I'm due for another so i know ill be asking for midazolam. Good luck 🍀 pls keep us posted xx

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