Scared, shocked but glad to be alive!

[In-Shock]

Hi all, I'm a newbie here, hope you're all doing ok given circumstances for being here!

In 2011 I was told I had NAFLD, it was an incidental finding on a CT scan. Every now and then someone would mention it but never went into detail!

From 2009 I have been diagnosed with Hyperparathyroidism, Fibromyalgia, given birth to 40+ kidney stones, have Sacriolitis, Arthritis in Thoracic Spine, have had 2 mini strokes, T2 Diabetes, COPD and Acute Appendicitis plus other probs!

To say I was finding it difficult to process all of the above is putting it mildly!

Present day, I have just come home from hospital having been gravely ill, very near to death. Since Xmas I had noticed weight gain, more fatigue, more water etc, 3 weeks ago I couldn't hold anything, I would drop the lightest of things, I just put all these symptoms down to any one of my *other* problems! Thank goodness my hubby got me to see the G.P who got me into hospital PDQ, it turns out that I had Hyperkalaemia, severe anaemia, severe dehydration, v.low Albumen, v.high creatinine, Acute Kidney Injury, Ascites and Spontaneous Bacterial Peritonitis...... And guess what...my NAFLD that no one fussed about is now Cirrhosis of the Liver!

I am numb, I can't understand how I have gone from NAFLD to Cirrhosis without a clue!

Tomorrow aft I have a telephone call with a consultant from the Liver unit.. I have so many questions, I don't know the prognosis, what stage, should I be on prophylaxis anti-b's having survived SBP, am I a candidate for transplant, what pain meds can I take other than Paracetamol and Dihydrocodeine..I am in so much pain most days that the two pain meds just don't touch it.

I'm sorry my first post is like war and peace, if anyone can tell me what pertinent questions I need to ask tomorrow to get the best info I would be very grateful for any input.

Hoping every one stays safe, take care, Sam x

[In-Shock]

Oops forgot to say they took 7.3ltrs of fluid from abdomen.

[gertrudestein in reply to In-Shock]

Oh, poor you! It makes my little problem (auto immune hepatitis) pale into insignificance. So I have no personal experience to pass on but there are lots of friendly people on here who can help plus all the BLT links to various aspects of liver disease including what questions to ask etc. If possible, get someone to go with you to any appointments so they can take notes while you talk.

[In-Shock in reply to gertrudestein]

Thankyou, hope you're keeping well x

[Laura009]

You have a lot going on there!

I think you will need to be asking about diet. With NAFLD / cirrhosis what you eat is very important. Plenty of fresh fruit and vegetables, fresh fish, lean white meat ( you need foods high in protein) foods low in salt , sugar and fat (no processed meals or junk food) It may be worth asking about a referral to a liver dietician so you get the best possible advice re caring for your poorly liver.

Best of luck

Laura

[In-Shock in reply to Laura009]

Hi Laura, I did see a senior Dietician just before coming out of hospital.

She explained that I will need a high protein diet, lots of veg and fruit.

She thought I had lost a lot of muscle mass so the protein will help to re-build the muscle, she said to keep hydrated, small meals spread out throughout the day is better than one huge plate at tea time.

She also said to continue with the Ensure Compact drinks!

Thanks for your advice, take care x

[Laura009 in reply to In-Shock]

That is absolutely the correct advice. Good luck to you. Take care and stay safe too.

L xx

[Laura009 in reply to In-Shock]

Oh and make sure you exercise daily that will work with the protein to rebuild your muscles

L x

[In-Shock in reply to Laura009]

Thanks, exercise is such a dirty word, 😊 it sounds like an excuse but believe me it isnt, I have Fibromyalgia and arthritis plus a huge divarication (stomach muscles didn't knit back together after having children, so no real core strength!

I could try yoga, the stretching may help with balance, coordination etc...

I will try something, promise 😃

[Laura009 in reply to In-Shock]

Yes there are so many forms you just have to find what works for you. My hubby has polymyalgia rhumatica and just couldnt play football anymore. But can walk for miles with the dog. We bought a peleton exercise bike and can manage up to an hour per day on that too. Even l have got hooked on that too!!

Bit whatever you find is best, you dont have to at full pelt just gently ease yourself into it or you will put uourself off it for good. At a gentle pace to get started will actually help you enjoy it.

Best of luck. Let me know how you get on

L x

[Binjal]

Believe in Yourself. Believe in Him. You will sail through.

[In-Shock in reply to Binjal]

Thank You

[Dogbot]

Hi In-shock

My word you are greedy you must leave some illnesses for other people 😂.

I think you have two of the main questions right in the last paragraph a contender for transplant and what pain killers to take.

But you have to get on top of the dehydration that caused a lot of my problems, but do write a list or you will come away with a question unanswered, good luck I hope it goes well 💕.

Stay Safe All

Dogbot 🐶🌈

[In-Shock in reply to Dogbot]

Thanks Dogbot, I am trying to go through the alphabet of illnesses, can't be too many letters left😁

Pain killers??? Told to go back on Gabapentin, ggrrr, I was told to come off it by a GP. Nothing else offered.

As for being a contender for a LT I would hope so too!

Take care x

[Hidden]

Good afternoon In-Shock,

Welcome to this friendly, supportive forum.

I have included links below to the British Liver Trust patient guides and also a link to our Patient Charter which has a 'questions for your doctor' section which will hopefully help you to form your questions for your consultation.

britishlivertrust.org.uk/in...

britishlivertrust.org.uk/li...

I hope this helps,

Trust9

[In-Shock in reply to Hidden]

Thank You for the welcome and the links, I will be reading up on the Liver and making myself as good as an advocate would be.

Take care 😊

[sunnysmile]

Hello and welcome - I can see where your name came from! I have been on this BLT forum for a while now and have made friends with lovely people. I can guarantee you a wealth of information and support is guaranteed. I absolutely trust them all. You will never be alone. If you can't take someone with you - ask if it is ok to record on your phone. I, for one, usually get the jellies at the docs/consultants - my mind goes blank and I forget what has been said - (totally different if I go with hubs for some health issue I think he may "accidentally" forget to mention) I remember everything!! I have mild fatty liver per endos/ultra 3 years ago. That was the prognosis - was told by the chap doing the ultra - I see this in 90% of people I carry out the ultra on. Hubs has just had one to check on kidneys and told all ok - you just have some fat on your liver!!!! I asked my doc what to eat to reduce the fat and she did not know. So along with BLT and research I made my own way around. Keep staying with this fam - you won't regret it. Promise - all the best Gwen xxx

[In-Shock in reply to sunnysmile]

Thanks Gwen, I totally get the "oh, you have fatty Liver..." comments but no discussion as to how serious it can get!

Maybe we need to gently push our GP's to take it more seriously, I'm not suggesting for a minute that GP's dismiss NAFLD or don't care, I know my GP's are fantastic, they ALWAYS listen to me when I know something isn't right.

Take care for now, Sam x

[Splodge60]

How did you get on with your Appt? I am very interested in your story for a number of reasons. Please do keep posting - you may need the Forum more than you know at present xx

[In-Shock in reply to Splodge60]

Hi Splodge, thanks for the interest, I will put an update of telephone consult under my original post.

If I'm honest I am more confused!

Take care x