I saw a different consultant today. He was happy with my 17kg weight loss since 13th December. Some of this was enforced but more on that later. He didnt appear to be convinced totally that I have cirrhosis, which I am sure all those diagnosed would be ecstatic to hear. Yes my last fibroscan indicated this however its all down to interpretation . He said that liver fat does cause fibrosis and that my weight loss should impact on that. I have searched the site but can find no reference to the above named scan. ? From what I have gleaned it is for those of us with steatosis, Non Alcohol. His colleague said I had cirrhosis, but on reading his letter to my GP this did not read a slam dunk no question about it! So I will be going for this test in the next few weeks.
The enforced part of my weight loss was down to being admitted for emergency surgery. My intestine was blocked and some necrosis was found.I was fortunate I didnt need a stoma. I was not allowed food or milk in a cuppa. By day nine I was allowed to eat but not 5* grub.6 weeks on Im still pretty weak, and have muscle wastage in my arms and legs. Fortunately it is rare but 20 years ago my Mum had the same surgery. It isnt genetic but it guaranteed my daughter rang 999 as it can be fatal if it bursts. I have quite an impressive scar and now have 2 navels! No, no picture, put you all off your dinner. lol
As i left Liverpool Royal spoke to a lovely volunteer from BLT. I told him I was on most days, this is an excellent site with wonderful people.
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Nice to ee you back Hazel 😀 I'd like the 17kg weight loss but I wouldn't want to go through what you've suffered. It would be great if you haven't got cirrhosis so we'll all be waiting to hear if that's the case. Take care. Deb x
Thank you Deb, Glad you got your blue badge renewed with no fuss. I applied a few months ago and was told I had to go for a face to face interview! I had to many appointments plus there is no where to park near the building! At least I dont look a picture of health at present lol. So many of us have unpredictable conditions, I can predict tomorrow I will be knick knacked, but thats not medical enough Hazelx
There is a little info on the site if you type in ARFI in the search, it is an ultrasound that measures liver stiffness, hope you get good news after the scan
I was out of it before I had my op, I thought afterwards they could have checked out my liver, even a biopsy. It brought home how brave those who undergo transplant surgery are.I have no recollection of A & E so had no time to stress. Not getting my hopes too high, but if I dont have cirrhosis it may be hopeful for others like me. Thank you Grace x
Hi there. I'm really sorry to hear of your recent bowel problems and surgery. That must have been very serious. It will be absolutely fantastic if they're wrong about cirrhosis. There are quite a few of you on the forum who seem to have more than their fair share so to be able to cross something off the list would be great. The weight loss is excellent too, despite your illness and surgery. I really need to lose some, it's pretty hard to find a start to doing it.
I'm pleased to hear you met someone from the trust and were able to tell them how much the forum is appreciated. Hoping you're back up to full strength very soon. Best wishes.
Thank you.If it had ruptured its often fatal, I go for my post op on Monday and will be thanking the consultant and his team for saving my life.i started the low carb diet as it was advised by a Prof at the Liver Clinic. My daughter thought he was rude, but to me he had thrown down a gauntlet lol. I spent over a week removing all foods with carb content. 4 massive carriers full. I shop on line so could see every foods carb content.I then ordered in all the foods I could eat, meats, fish,seafood and green veg. I had no idea a tin of the famous tomato soup had so many carbs! The only carbs I had was one teaspoon of sugar in tea and coffee, I cannot stand artificial sweeteners. Perhaps the hardest time of year to start a strict diet, but we can always find an excuse to start tomorrow lol. I had to have an iron will on Christmas day and my granddaughter's birthday on 27th Dec, I have a wonderful family so none of them said oh have this or that, it wont hurt you. Sugar is addictive, but once you reduce it to virtually zero the cravings go. I still have freezer packed with low carb food but have been eating to suit my recovery, Fruit is full of natural sugar but I tried some tinned strawberries. Discovered Im not ready for veg yet. Just mashed potatoe, I will return to low carb when Im fully recovered on the inside. Low carb is not suitable for some with a different liver disease. It is best to check with your consultant what is best for you. I hoped for another fibroscan last Wednesday to see if my liver fat had reduced , but obviously more crucial to discover if I do have cirrhosis. Hoping I haven't of course. I had lost some weight previously by only eating when hungry and limiting the bad stuff. The low carb shifted more weight and then the enforced starvation got me down so 17kg since 13th December. I have had to ban myself from buying any more clothes as I have no stuff that now buries me. Ebay and the Sally Army will both do well. I think the gauntlet and being told if I lose the fat on my liver the Prof would expect to see me around in 20 years time. Food and methotrexate have done the damage, Food is addictive to some as alcohol is to others. People know about alcohol but while diabetes is mentioned, the consequences of fatty liver isn't given any publicity. Hope you manage to find the right diet for you and see it as a challenge like I did. Ask what is the best diet for you . Prepare for it first then you have a start date. There you go,I challenge you lol Hazelx
Heya Hazel!
There is little on here about the AFRI test. Basically there are different types of elastography machines. Some use Magnetic resonance elastography (MRE), Some of them use Shear wave elastography (SWE), Some use Transient Elastography aka Fibroscan (TE) and some use Ultrasonic Elastography (UE) etc.
All elastography machines do the samenthing in that they measure liver stiffness. The difference with the ARFI is that the transducer they stick against your body does not require the compression that other types of transducers require to work. This arguably makes it more accurate as it does not have a variation in the result depending on how well the operator can properly place the transducer.
Basically gets rid of user error from the equation. Hopefully that can be a bit of help to your question and as always Im rooting for you in your corner.
I hope they find out its not Cirrhosis. That would be a great piece of news!
Many thanks for the info PhoenixI am hoping quietly its not cirrhosis. Second to this I am curious to discover if my liver fat has reduced, due to my weight loss. I have my next appt with the consultant on May 22nd. This scan will have to be before then. I was told only a few radiographers were qualified to do the scan, I go for my post op on Monday Pity I was dosed up with morphine, surgeon could have looked at my liver and done a biopsy while he had me opened up. Liver Clinic is not a local hospital so there would have been no record about my liver. At least I can drive again. Role on May 22nd. if it isnt advanced to cirrhosis, hopefully I reverse some of the fibrosis. thank you again I will update in May good news or not. Hazelxx
Aww that is a shame that they couldnt have done it while you were already on cloud nine. But May 22nd will roll up soon enough. In the mean time you keep taking care of yourself and keep on with that positive attitude!
They have a great set up, no waiting for a fibroscan, was done before I saw the consultant in December. The ARFI scan is not done every day and only a few radiographers are qualified to do it. This is why there is a delay. I feel fortunate that I may not have cirrhosis. Waiting for a transplant must be the most nerve wracking experience. Strange that the consultant had personal experience of methotrexate. He said its a vile drug. Ironically he is now on Etanercept, which is good for him. He has RA. How ironic that this drug started my downhill path healthwise. I volunteered for a national trial ,I felt it was right to do so so I and others could benefit! Etanercept is now contra indicated for me -I contracted EBV left with ME and Fibro. 3 years later it was considered may have been a coincidence. I got funding for it and was so excited that my skin may be sorted. I felt rough after 1st injection. 2nd one almost saw me off!! My body released cytokines and it can be fatal. The metho worked brilliantly btw, my skin and joints really benefited. I had no side effects after a while either. Unbeknown to me my liver was being attacked! Im in the 2 to 3% of people who this can happen to. Same with hypnosis lol. That doesnt work on me either. I feel for newbies who ask what their blood tests indicate, but we both have normal bloods, add to this all our medical idiosyncrasies and it demonstrates that no 2 people are ever alike. even with the same diagnosis. Im sure a lot of people on here would gladly change places with me, the possibility of not having cirrhosis is wonderful!
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Latest update after seeing my GP again...
Transplant assessment
Can I give a little hope?
Muscle wasting and other symptoms but normal test results
