Next Step

[Sophia1968]

morning all you lovely people, as you know, after waiting almost a year for a referral to gastro after my high fibro scan I was finally seen two weeks ago, bloods were taken and he said he would arrange another fibro scan then once he had blood and scan results he would either see me or call me, I just wondered how long I would need to wait, obviously he would have the bloods back by now, but no appt for fibro scan has been arranged, could I be looking at months again do you think, also if the bloods showed anything really bad would they contact me quicker, I kvow different areas work differently , but any insight would be great, I just don’t kvow how long to expect to wait, I should have asked him while I was there but I didn’t think, xx

[Aotea2012]

My ultrasound appointments are normally 8 weeks from referral to appointment. I tend to get notification of the date within about 3 weeks. I don’t have fibroscans but suspect it will be longer as a result of their more specialist nature. In terms of bloods if there was anything terribly abnormal they would have contacted you. If you want to be absolutely sure then you can ring the consultant’s secretary and they will normally tell you the results. I get mine done through my GP these days as I can see the results on line. Try not to worry…easier said than done I know, but they would have escalated your care if they were particularly worried.

[Furpal in reply to Aotea2012]

Definitely, I look at my results on line too. They always call if there is a problem.

[Furpal in reply to Aotea2012]

Definitely, I look at my results on line too. They always call if there is a problem.

[Sophia1968 in reply to Aotea2012]

Thank you so much, that makes me feel a bit getter knowing they would have contacted me, I can see all my gp bloods on line but it never shows my hospital bloods which is a shame, even the nhs app does not show anything other than appointments, I just don’t have much faith here in Kent, I sometimes worry that the follow ups are very poor and therefore worry that I would not be contacted even if there were issues, but I know deep down that’s not the case, thank you for your reply hun xx

[Furpal]

Hi Sophia, I can't believe you are still waiting. I've had to phone about my bloods & scan too. They didn't contact me like they used to do. I think it's certain areas of medicine/health who are struggling. I have to have an operation on my hand and that's all been sorted within three months and I'm having an op in Feb. So different procedures obviously lengthier waiting times. I hope it all works out soon for you xx

[Sophia1968 in reply to Furpal]

Thank you my lovely, it’s been a long wait and getting no where, I just need to kvow do I have cirrohsis or not, very frustrating, I agree with you some things are slow but other things they are really on the ball, good luck with your hand op, hope all goes well for you xx

[Ilovedavid]

I had fibroscan back in August last year with very high (74.3 KpA) score and cirrhosis was confirmed. The liver nurse told me she thought I was allergic to alcohol and that the high reading was due to inflammation. She suggested another fibroscan in 6 months. I contacted her to arrange an appointment and she told me that as my bloods were practically back to normal she saw no need for a further fibroscan. She said the most important indicator that your liver is working OK is the blood results. US and bloods every 6 months going forward. I have been under a gastro consultant for over 2.5 years being treated for acid reflux. It was my liver all along but US and bloods never picked up on it. Bloods were all OK in January;by June they were off the chart, with ascites and jaundice too. You don't get cirrhosis suddenly in 6 months. I've clearly had it for years, but undiagnosed. To say I'm angry is an understatement. Have recently had MRI to see if any signs of HE, but have to wait until end of May to speak to the consultant. I have no faith in him at all, but what choice do I have? All I would say is look into the facts of your condition online, or speak to someone at BLT and keep asking questions. I wish you the very best going forward.

[Sophia1968 in reply to Ilovedavid]

Oh bless you, I am sorry that you feel like this and have no faith , I know how you feel, all my good doctors left and now I feel so insecure because I honestly do not think my drs understand the liver at all, it’s a scary not feeling confident in them, so is a fibroscan and bloods enough to diagnose cirrohsis? This is what I don’t get, the bloods could be ok so how can they tell for sure, I wish you all the best going forward as well my lovely, please take care xx

[Ilovedavid in reply to Sophia1968]

I was having US scans and endless endoscopies for the acid reflux, along with bloods, which all came back fine during the two years before diagnosis of cirrhosis. It was only when I became jaundiced that consultant requested fibroscan. When I went to A&E with the jaundice, I had US and was told "there's nothing to worry about". That was in June and by August got full blown diagnosis of cirrhosis. So, yes, bloods and US can miss it. Fibroscan confirms, as it measures the stiffness of your liver. My lovely consultant didn't even telephone me to give me diagnosis. I returned from holiday to a letter from him telling me I had it. This was even before having fibroscan done. I sent him a very curt email saying one minute I'm dealing with a high bilirubin level, and now you are telling me I have cirrhosis. No email response, just a copy of the same letter he sent to me amended to say "you probably have cirrhosis". When I did eventually speak to him 3 months after the fibroscan, I asked him why cirrhosis was picked up sooner". His response was "I don't know", and then started warbling on about NHS cuts and the time it takes to review cases. They don't really care about you at the end of the day. You're just a number on their list to tick off until the next time something flares up and then you have to wait 5 months before speaking with them again. It really is so appalling. The sad thing for me is, I actually have private health cover, but because my liver was never mentioned as the cause of all my sickness, by the time I got diagnosed it was too late for private health cover as it has been pre diagnosed and, therefore, I'm not covered. I have a couple of other health issues which are secondary to the cirrhosis and thankfully I am covered for private care, which I am currently receiving. I jokingly say that I have never been so ill in all my life (I'm only 53) since I stopped drinking alcohol, but it's true. I won't ever put alcohol into my body again. With cirrhosis, you are the only one that can help yourself by abstaining from booze and eating a healthy diet. I am only 5 months down the line and already I'm bored with the whole scenario. I don't look at it as a death sentence, just a condition. Thanks for listening to my story. I hope yours fares better than mine. I am very lucky to have a wonderful loving husband who works extremely hard long hours and pays for everything and looks after me. The only upside to this is that I have taken early retirement due to ill health and have access to my private pension funds. We have a few good holidays planned this year. Don't know how long it may be before it all really kicks in. Am gonna just enjoy life while I can and live for the moment. What else can one do? Best wishes to you. X

[Sophia1968 in reply to Ilovedavid]

Oh love, what a terrible time you have had, you have been treated so badly, I totally get your anger, changing the subject slightly I was treated similarly with my eye appt's , I have been under the specialist hospital for 8 years, seeing them every six months without fail, last April I saw them and waited 3 months for my update, nothing came, I kept phoning the hospital but there was never any answer I just kept being transferred to an answer phone saying the secretary was on maternity leave, I eventually contacted pals to see if they could find answers, considering I’m high glaucoma risk with a rare condition that could make me go blind with a click of the finger ( if I had a certain attack) , even they didn’t get anywhere, they were told it could take a year to get my results, how ridiculous, so here I am a year on still no results and should have had two more appointments by now but nothing , I seriously have given up with them now, the stress of chasing was worse for my health than doing nothing, thank you for telling me your story and I really wish you all the best going forward bless your heart xx

[AnxiousPete]

Your GP can access your blood results but I would contact the consultant's secretary and ask if the Fibroscan request has been made (it is usually the liver nurses who carry them out). Have you had ultrasound or any gastroscopy referral ? If not then at this stage it doesn't look like they have diagnosed cirrhosis so you may just have fibrosis / fatty liver which you know are reversible. Hope you get your fibroscan ASAP. You can ask the secretary what the average wait time for Fibro is from consultant request. Failing that if there is a liver nurse team they might be able to say if you are in the system and how long. Good luck Px

[Sophia1968 in reply to AnxiousPete]

Hello Pete, I did ask my docs about the hospital blood test and they said they won’t get them , surely they will get them, unless they only receive them after I do, the app shows all my latest blood tests but not the last lot done at the hospital, I had a ultra sound scan done about a year ago which showed severe liver impairment, this is why I was sent for the fibroscan which was 21.5kpa then I heard no more until two weeks ago and that was only cos I pushed to be seen, bloods were done that day and not heard anything since, do you think severe liver impairment with kpa 21.5 means cirrohsis anyway, if so why are they just leaving me, thank you for replying hun, hope you are ok xx

[AnxiousPete in reply to Sophia1968]

Fibroscan can be notoriously inaccurate if we are carrying a bit of weight and I know you've shed a lot so the next one will be more reliable. It isn't the best diagnostic but you could push very hard for a CT scan as this can confirm if cirrhosis is present. In my area our GPs can access our hospital blood test results via the trusts IT system. I would email the secretary asking for them to be released by email if possible (they won't do that here in our trust but I know others on here get them tbet way), or if not they could send by post. I am keeping ok thanks - anniversary of my diagnosis and last alcoholic drink is next Wednesday but I feel a lot healthier since my lifestyle changes.

[Sophia1968 in reply to AnxiousPete]

Thank you Pete, and well done you for your anniversary next week, that is a fantastic achievement , it’s so positive to hear that you feel much healthier now, great work, I kvow it’s hard but you have stuck with it, I think I just worry more about the scan than the fibro score because of the wording severe liver impairment , im not sure whether that was on the ct scan I had or the ultrasound , I had one of each within three months for other issues but both picked up on the liver, one said diffuse fatty liver the other severe liver impairment , I know I need answers cos it’s all guess work in my head, but trying to speak to anyone and get any info around here is like trying to get blood out of a stone , but I will try his secretary , surely he has seen the results by now , take care my lovely xx