I survived my second meeting with my consultant and even better than that, left with such encouraging news. Thank you to all of you who helped me keep my head in the build up and for all the brilliant suggestions and tips - it helped immeasurably.
I was still very nervous prior to going in and sitting in the waiting area wasn’t doing much for my pulse! I’d had my bloods done first thing and given the sudden nose bleed that sprung out of nowhere on the train (and yes of course I had a white top on!) I wasn’t expecting much in the way of good news!
However the long story short is that I’ve improved a lot and am back to having a compensated liver - bloods almost all within the normal range except bilirubin but even that has halved. The consultant was really encouraging and positive and said I was a different person to the one he saw back in March.
While I still have a serious disease, you’ve got to take these positive steps happily because they lift you mentally and that’s just as important! Certainly was for me, I was having some very bleak days.
I’m booked in for another ultrasound, gastroscopy, routine bloods and AFP test which they missed this time. They’d just received a fibroscanner (the day before) and as there was a student there I agreed to be a guinea pig - he said it wasn’t going to reveal anything they didn’t already know but would be good for their development so I went ahead happily.
With regards to the shoulder, hands and knee pain I asked about nerve damage and nerve pain and he said there wasn’t a link which I had thought there was...so it looks like I have to see a rheumatologist and that it’s a separate issue. I’m not completely convinced but I’ve got the go ahead for codeine (with lactulose in addition) and no ibuprofens and no gabbapentin.
So keep doing what I’m doing, no alcohol (not an issue!), eating lots (also not an issue 😉), being as healthy as possible - oh and avoiding the flu and pneumonia etc, as we aren’t good at fighting infections and can plummet.
So, heading in the right direction for now and feeling much relieved. Happy to answer any questions and help in any way I can if anyone is going through similar.
And thanks again.
Beth 😎
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Hi Beth, that's fantastic news! Bet you were so relieved. My husband had an endoscopy yesterday that showed his varices were gone (well just one barely seen grade 1) - you really do need to celebrate positive appointments!
You sound very positive & you have every reason to be. Hope you manage to get on top of your joint pain & keep improving as your healthy lifestyle continues.
How was the fibroscan? Hubby has one in Feb. You also reminded me that husband needs his pneumonia jab which was cancelled cos of staff shortages! So thanks! 😁
Thank you. It really was a much-needed boost. It’s a long rollercoaster ride and I often wonder if people are reading about me going through the same motions (denial then despair, then a glimmer of light etc) which is why I’ve found it so important to share! It took me a while because at the early part when I was in the “there must be some mistake” stage I was feeling very insular but now I get a lot from what others share and the support is strong when you need it. How is your husband feeling now?
You’ve also reminded me about jabs! Touch wood I’ve not had a sniffle yet but important to vaccinate - I had completely forgotten I’d been offered a flu jab (by text!) at the start of the month.
The scan was fine - usual lie back, arm up, cold jelly - I didn’t really want to see so he talked the student through it but there was no sharp intake of breath and he was keen to say there was nothing new.
Wishing you and yours a good weekend and thanks again for your kind message 😎
You've had a tough time of it love so I'm really happy for you that things are improving - long may it continue!
Time for life again, it'll never be quite the same but, with a positive outlook and a strong resolve to continue nurturing your health, there's no reason the future can't be great ☺
Thank you Gary! Lovely message to read. It couldn’t have come at a better time to be honest - it’s hard when you’ve accepted your illness but yet you’re still quite clueless as to what’s next and prognosis. I guess it’s tricky also because everyone can be doing the same things to look after themselves but go off in different directions with their health - but for now, I’m just grateful I’m feeling so positive - I don’t want to shed any ammonia smelling tears for a while!!
I’ve abbreviated your name - apologies. I am really happy to hear that you have improved from the Decompensated phase back to Compensated. I was not aware that this was even possible. My web searches all seem to indicate that once decompensated, there is no going back. Is your case rare? Did you do something special to achieve this milestone? Congratulations again!
I think you've asked this question a few times now and people have replied with their experiences. Yes it is possible to revert back to a compensated stage even from very advanced liver failure. It's all about getting to grips with any ongoing 'assault' on the liver, dealing with symptoms and perhaps introducing medicines to keep these side effects of a decompensated liver controlled - i.e. medicines to reduce portal hypertension, banding of varices to the point of eradication, medication to control fluid build up and HE symptoms. It is possible most definitely in lots of case (BUT NOT ALL).
My hubby would have been considered decompensated in April 2012 with burst varices, jaundice and wildly deranged LFT's plus other symptoms from portal hypertension. Now very much classed as compensated and stable albeit with medications in place to reduce effects of portal hypertensive gastropathy, banding has removed all varices, spleen death due to an embolisation operation, medication for HE etc. etc.
I was told at my first post consultation that lots of people thought you could not improve - but my consultant was quick to say that although all livers are different and have been treated differently, they’re still remarkable organs and they can improve. I think the misconception is around people confusing going from decompensated to compensated with being able to cure cirrhosis completely - which you can’t, apart from by transplant...
You can improve though and once I got the wake up call, I followed all the advice I was given - by the medical staff and I got a huge amount of help here - to the letter, from diet to obviously zero alcohol, to the vitamins, to not consuming too much fluid...resting when needed etc. Trying not to stress was a big one, it’s not in my nature not to worry!
So above all be kind to yourself and good luck. And as Katie says, have a look at that link, it’s very useful.
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