An update: So... After dad was diagnosed... - British Liver Trust

British Liver Trust
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An update

justdontgoogle
justdontgoogle

So... After dad was diagnosed with cirrhosis last week - the docs had given him the news after a week in hospital and various tests - they now seem to have changed their minds!!

In many ways - as you would see from my last post - the diagnosis didn’t ‘sit right’ with me having read dad’s US reports concerning his liver (smooth, without lesions but a little enlarged).

Today dad’s doctor told dad that he now suspects that the ascites is coming from a kidney disorder as dad is having high protein levels in his urine and despite the diuretics he has decreased urinary function.

Talk about an about turn!

The doctor said that the diagnosis of cirrhosis was largely based on the presentation of ascites. They are now of the opinion that dad has a possibly fatty liver but not cirrhosis.

It seems quite a big diagnosis to give someone while there is uncertainty! Either way, we just hope that dad’s liver hasn’t reached that point. I suspect that his fatty liver has revealed itself ‘by accident’ due to the investigation into the ascites. This is a good thing, hopefully dad can focus on looking after his liver (no alcohol, reduced salt).

Of course, we are now none the wiser as to what IS actually wrong with dad but the renal team have for now taken over his care. He will still have a Fibroscan.

And he’s allowed home! Yay!

What an emotional rollercoaster.

This forum has been fantastic- I have learned so much and your responses have been invaluable in helping me to try and understand what has been going on with dad. The helpline is also superb.

Thank you x

14 Replies
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Well, I'm glad that your Dad's liver isn't too bad, does this mean we'll be losing you to a HeathUnlocked Kidney site?

I’m still going to stick around. Hopefully dad’s liver issues aren’t as severe as the docs initially thought, but certainly as a family our eyes have been opened to liver disease. It was something that wasn’t on my radar before; it certainly is now.

Hidden
Hidden

This is really good news about his liver. Usually a fatty liver shows a " glow " on the screen. If that wasnt seen he might even be clear of that too which would be even better news on the liver front!

As Richard mentioned I guess we are going to lose you to the kidney chapter of the Health Unlocked website. I cant promise the members there are as wonderful as we are but im sure they will suffice in our absence lol! 😎 Im certain you will find some great support there and I wish you and your father all the best moving forward. 🙂

-Phoenix

justdontgoogle
justdontgoogle
in reply to Hidden

Ah thank you. I’ve learned a lot from this forum. It remains to be seen how dad’s liver is doing. The renal doctor explained to dad that impaired kidney function can have an effect on the liver. I assume the same applies the other way round.

I need to find a good kidney forum... I ain’t be happy if I haven’t earned some sort of medical qualification by the time I’m done with all this 😆

Trust1
Trust1Administrator

Hi-

What a stressful time for you all!

If your dad does have a fatty liver, get lots of info about that and he will need monitoring.

We wish your Dad and yourself all the best. I’m so pleased you found the helpline helpful too.

Warm wishes

Trust1

Dad is still booked in for a Fibroscan so hopefully that might shed some light on things. He’s going to stay alcohol free and low salt so fingers crossed. Now to work out what’s happening with the kidneys as dad’s ascites and Edema are proving to be very persistent 😔

Thanks again x

So glad that you are a bit nearer to getting an answer, as you have all had a lot to digest and deal with emotionally. It must be such a relief that your dad can now come home, including for him, as hospitals are so boring and noisy( impossible to sleep). It's good to know that the forum and helpline have been so helpful too.

I hope that you continue to get the care you need for dad and that an answer with a plan is forthcoming soon. All the very best:)

Thank you. Yes, dad was finding it hard in hospital as he’s such an active person. I think he knows it like the back of his hand now having spent a fortnight constantly walking round it just to avoid lying in bed. The one ‘good’ thing has been enjoying solid time with him everyday. Although I see him each week he’s usually pottering around keeping busy while I chat with mum. But I’ve been sat with just him for two hours at a time every morning for the past two weeks and it’s been lovely, if that doesn’t sound weird!? I’m very grateful for having such a brilliant dad; now I just want to support him through yet more uncertainty and tests. All the best to you too 😊

It doesn't sound weird at all. Many people don't get the chance to chat at length with parents especially with one as active as yours. Since he is so fantastic as well, it sounds like it would be a joyful experience rather than one to be endured or done out of duty. I totally understand about constantly wandering around the hospital, been there...done that as they say. It's so great to hear about lovely families such as yours, and I'm sure that whatever your dad has to deal with, it will be made that much easier because of the loving support you have given to him :)

Thats wonderful news. Ok he is not out of the woods yet, but many liver conditions are treatable and even curable. I too am having further tests as the consultant I saw on Wednesday didnt seem to be fully convinced I have cirrhosis. Ensure your Dad drinks 6 to 8 glasses of water a day. Some people avoid this as they get fed up of weeing every half hour. So happy for you and your Dad its not cirrhosis. May be worth asking to see a dietician re liver fat. We are all different even though we have liver disease. No doubt it will be the same for kidney problems. Hazelx

Thank you. It’s been quite a journey (and of course, not over yet - just taken a new path). I hope your tests yield positive results x

Wow, this is amazing news! What a relief for you, although you do, of course, now face the situation with your dad‘s kidneys. But your story demonstrates that there are at least 2 (how many more?) of us who were mis-diagnosed (over-diagnosed) with cirrhosis. On the flip side, a good friend of mine in the UK was under-diagnosed… He clearly had every sign of Cirrhosis, but was not diagnosed for almost a year, even while seeing multiple medical professionals. Seems very strange. This just goes to show the importance of insisting on a trans-jugular biopsy if there is any question at all. As they say, medicine is an art, and not just a science. All the best to you ...

Yes, it does seem that perhaps doctors sometimes give out a diagnosis without having explored all avenues first. I feel for dad as he took the diagnosis of cirrhosis badly, especially as the doctor blamed his moderate drinking (12-15 units a week). Of course, there has to be a serious reason why dad is filling with water (!) but we hope and pray that it’s something that can be treated. All the best to you too.

Hi. It will be great news if your dad doesn't have cirrhosis. As you say there's obviously something going on and I hope this can be treated appropriately and successfully now they are on the right track. Good luck.

Coralsun

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