Update on referral

[Owlie]

Hi,

I thought I was doing quite well until today and have now gone back into shock mode. I had high ALT and ELF scores and was referred to a consultant. The waiting list was huge and it looked like Easter before I would get an appointment. Since then I have radically overhauled my diet and lost nearly 2 stone which resulted in the aforementioned scores lowering, ELF into normal range. GP was delighted and told me to keep it up.

I went to the hospital and was told I wasn’t seeing the consultant and saw someone with a trainee badge who immediately started talking about experimental trials and fibrosis which I thought was for very serious cases of liver disease. I was told nothing as they didn’t have my blood or ultrasound results and more blood tests were ordered and another ultrasound. I knew my blood test results and told them but was just given no information. The person was lovely but I just feel awful as I still don’t know anything and on the blood tests it said I had NFLD although no one has actually told me that. I now have to wait again and am worried I won’t ever see the consultant. According to my appt letter I was close to a breach?

Sorry for the rant I was really hoping to get a fibroscan and be given some sort of diagnosis, now I go back in the system again for an ultrasound and I just want to sit in a corner and 😢

Thanks for listening

Owlie

[Pizamkazdw]

Hi Owlie, I am really sorry to hear you are feeling that way and my thoughts are with you. Sending you loads of hugs. Please, don't give up continuously asking for an appointment. This is very serious and you deserve to be treated with respect. I think requesting your test results to be copied to you or asking for medical records might help. At least you will have your own copy to present at the next meeting in case they don't have them. Keep positive no matter what and update how did it go. I know how frustrating the wait is especially if you know somethings wrong.

[Owlie in reply to Pizamkazdw]

Hi, thank you for taking the time to reply. I thought I was doing really well and was starting to get over the initial shock that was something was wrong and this has just triggered it all back again. I have asked for copies of tests from my Dr and from the hospital in future so this hopefully won’t happen again. I’m really hoping that next time I can actually see the consultant as I can’t afford to go private. Thanks for the hugs, I always seem to have a wobble when I go to hospital and I never seem to be able to tell anyone how I feel, I just sort of freak out. Thank you so much for listening! Owlie x

[GrandmaDylan]

I finally saw a liver specialist after waiting over 20 weeks on the 14th nov. He arranged blood tests including one for AIH and told me that if it came back negative he would arrange a liver biopsy. I rang his secretary today and she has printed all the results out and will show them to him tomorrow. Unfortunately he is only at the hospital once a week. I also have an appointment with him on 2nd January. I'm sure that now you're in the system at last you will be seen again soon. That said I think it's still worth ringing his secretary. Good luck. Deb

[Owlie in reply to GrandmaDylan]

Hi, thank you for replying. It was an extra clinic that was put on so I didn’t see a consultant, the badge said trainee on it and no one else was there. I wrote down the blood tests that I had to have done - I don’t think he asked for an AIH but I don’t know what that is anyway. He did ask for two hepatitis ones though. I think what has upset me the most is that I was steeling myself for a diagnosis and explanation of how bad my liver was but Then I was told nothing. Now I have to wait over Christmas and I feel like a dark cloud is over my head. I’m not good at being positive I’m just so stressed out! Thank you again for replying and good luck with your tests! Owlie x

[Hidden]

Hi Owlie,

The ups and downs of dealing with illness are a pain in the neck sometimes.

We often need to rant and luckily the people here are supportive and many have had experience with rants

Hoping that you get thru to your consultant and get an appt. soon.

Best wishes,

Mary

[Owlie]

Thank you Mary!

[Julie8]

Oh dear it’s so frustrating sometimes and the more we try to find out, the more there is to find out

[Hidden]

Oh my word Owlie I am truly sorry to hear you want to cry xx.

I am so sorry I cannot help you with your issues. I am just not equipped or knowledgeable enough, I am quite new myself. But wanted to say be strong and that you are in the right place. There are so many understanding and experienced folks on this site. Someone will be along soon to help and offer advice. In the meantime I send virtual hugs.

Jaycee

[Owlie]

Jaycee,

Thank you so much and back at you with the virtual hugs!

Owlie x