Still Waiting

[Sophia1968]

hi everyone, yep it’s me again….. because I still have not heard anything since my fibroscan two months ago, I asked my Dr to do afp (liver cancer marker) ggt and ast blood tests, all three came back normal although mid normal, my other bloods were also normal alt, albumin etc, I was disappointed that my platelets were only 229 but still normal, I just find the whole thing confusing, my bloods (well the ones we checked) are normal and yet my kpa was 21.5 and my ct scan said severe liver impairment ….. I just wish I knew for sure whether this is cirrohsis, the scan and numbers have convinced me that it is, but I need to know for sure, on the whole I am doing well and coping better mentally, I have now lost two stone since my firoscan and aim to lose another 4, I even went into a swimming pool for the first time in 40 years and loved it, I have forgotten how to swim though lol, but I know I will get that back…. I have lost 4 points on my bmi and lost 3% on my inside fat ( visceral fat) all these things have made me feel more positive , but I’m afraid I will start to believe I dont have cirrohsis , only to be hit with a diagnosis of it when I’m finally seen… not sure any of this makes sense and I know none of you can help, I guess I just wanted to let off a little steam… I will wait and I’ll be as patient as I can, but until I know for sure I just feel stuck in a rut, still on a plus sign at least I feel mentally ok now no matter what happens , hope you are all ok and enjoying the lovely weather xx

[golly123]

Hi Sophia. You are doing brilliantly. Well done you. You should be proud of yourself. Try not to worry too much. They do seem to be taking a while with the results though. Can't you chase them up? Stay feeling positive too. Seeing you a big hug. Best wishes Golly x

[Sophia1968 in reply to golly123]

Thank you golly, I have chased twice and both times I was told that they will get to me, it’s just annoying , thank you for your kind words hun, and sending you a huge hug back xx

[AnxiousPete]

Hi Sophia - well done on the weight loss and lifestyle changes which will definitely help. I know it must be really hard dealing with the anxiety of not knowing and it's awful you're having to wait so long. Have you been referred to a gastro / hepatology consultant yet and if so have you tried to contact her/his secretaty about waiting times ? Mine has been ever so helpful. My consultant requested a full liver blood profile by my GP surgery before we met and then he requested gastroscopy and I pushed for a fibroscan which he wasn't automatically offering. I hope you get some answers soon but everything you're doing will be of huge benefit whatever the diagnosis. Take care Pete

[Readlots]

Hi Sophia, I’m about to chase an appointment myself so don’t feel bad about chasing. I’m always polite and I try a number of people until it gets sorted. I called the consultants secretary 10 days ago and left a voicemail. No appointment has arrived so I’m ringing the liver nurses today.

I know the waiting is difficult but you’ve done so well, keep doing what you’re doing while you wait

[Corin1950]

You have done remarkably well to lose the weight and get better stats for visceral fat etc. Regardless of your test result you are addressing the problem already with losing weight and exercise and following a liver friendly diet and that’s great. I saw a top consultant in Feb last year and got diagnosed with NAFLD. My CAP score on the fibroscan was 270. He advised me to up my exercise, lose 10% of my body weight and limit alcohol. Although it was not an issue for me I gave alcohol up completely. I have lost a few pounds but am still overweight (BMI 27) and try to follow a liver friendly diet. I’ve recently started to limit meat and fish and eat more plant based wholefoods too. I’ve got a repeat fibroscan next week and am a bit anxious but hopefully it will show whether the strategies I’ve put in place are working. I rarely get RUQ pain anymore but I do gets bouts of itchy skin every so often.

Take care