What should I ask consultant

[Confused1972]

Hi ev1. Sorry to be a pain. I was diagnosed May 2015 decompensated cirrhosis and apart from the odd blood test (usually yearly when I ask for them which since 2017 LFT all normal) but I’ve had no other tests. Spoke to doctor mostly due to Zuko (thanks Danny ❤️) and now have zoom call with L&D consultant 22 February. Not sure what I’m really supposed to ask him/her, this whole thing (cirrhosis and abbreviations) just blow my mind and don’t understand a thing (I’m not usually that thick) none of it seems to sink in, probably through embarrassment n lack of support nor wish to discuss (on my part aswell). I had a bit of a falling off wagon at Xmas n just went crazy for couple of weeks which I deeply regret but now back on track 🤞Sorry didn’t mean for this to be so long winded. Stay safe xx

[Hidden]

Hi,

Here is a useful link 'Questions to ask your doctor'

britishlivertrust.org.uk/in...

Do remember you can call our nurse team for a supportive chat on 0800 652 7330 Mon to Fri 10am to 3pm.

P.S you are not a pain, you are welcome to ask any question you wish ( within forum rules!!

😜)

[Confused1972 in reply to Hidden]

Ah bless you. Thanks so much I will take a look. Hagd xx

[AyrshireK]

First thing to ask is about scans - with cirrhosis you are supposed to have an ultrasound scan every six months to check for any changes in the liver/any untoward lumps and bumps plus to check your other organs. ALSO, you say you've been having LFT's but have you also been having a blood test called Alpha fetoprotein (AFP). NICE guidelines stipulate that cirrhosis patients should be monitored 6 monthly and it sounds like yours has been way below that level of monitoring.

Have you any symptoms at present?

When hubby and I go to his consultations we have a notebook that we take to each appointment and before we go we make a list of all his current medications (as doctors like to keep an eye on that), a list of any/all current symptoms or anything of note that we've noticed since last appointment and then a list of all the questions we want to ask.

Doctors need to keep an eye on your symptoms to ensure any interventions are done timeously.

The BLT has a page all about cirrhosis - it is very much worth learning about your condition so you can ask pertinent questions and make the most of your appointments. britishlivertrust.org.uk/in...

Having your list of questions written down means you don't loose the chain of thought and can get what you need out of the consultation.

If you need any dietary support ask for referral to liver specialist dietician they can make sure you are maintaining muscle mass and fuelling appropriately.

All the best for your appointment,

Katie

[Confused1972 in reply to AyrshireK]

Hi Katie thanks so much for replying and all the info. Tbh my doctor did say that they really needed to up their game and obviously I need to aswell. I don’t have any symptoms whatsoever (or don’t think I do) and that’s probably why I must across as so blasé about it all or is that me sticking head in sand (inside I’m bricking it) I will try harder. My cirrhosis was only found when i was admitted for what they named as Peripheral neuropathy as every test they tried came up with blanks but couldn’t walk and then I discharged myself (still not able to walk) after 15 days maybe that’s why I haven’t been seen since. I will ask for an ultrasound but no to AFP just the bog standard lft . Unfortunately my initial doctor who was fantastic for the first year or so left and have only seen my newly assigned doctor once since then for a totally different reason. Thanks again I really need to get my head around this all 😀

[Zukosmile07]

Hello audittgirl....It's all down to you making an appointment and don't worry doctors don't talk in abbreviations teehee 😄. Just ask if you could have your usual LFTs and if possible full bloods (bit of a blood mot). If you have any questions or worries write it all down and try to stress on how long you have had the disease and you haven't had a scan to see if the cirrhosis has gotten any worse(Piece of mind). The doctor may even say you are well overdue. She probably will send you for blood tests and check for irregularities. Then take it from there. Routine check up and anything you can think of symptom wise let the doctor know

Danny x

[Confused1972 in reply to Zukosmile07]

No it was definitely yo, apart from I did make the call it would be bit strange if you had known who to contact haha. I did have bloods October n then DVLA bloods December all normal and hospital written to docs re appt. I’m going to look at info the trust sent me n make list of any relevant questions to ask so will be organised for dreaded zoom appt. How’s you doing I haven’t been on here much recently cos felt that I’d not only let myself down but all you wonderful people on here struggling daily xx

[Zukosmile07 in reply to Confused1972]

Hahahaha don't be daft. Be selfish when it comes down to your own health. Everyone has a set back we are only human. No I meant if you have had any symptoms, they won't be picked up with just blood tests. Any damage caused by alcohol to the liver (scarring wise) will only be picked up by scans. So will the zoom Dr look at you and say "yep your goosed, I'll send you for bloods and scans" hahahaha 🤣🤣🤣🤣🤣

[Confused1972 in reply to Zukosmile07]

You are so funny 🤣 In fairness in my naivety my doc said we’ll get a scan done n then appt came through at hospital n I thought yey I think we could have lift off here n then had another letter through saying changed to zoom call and then I thought OMG I’m gonna have to have questions ready or he/she will say “so how can I help n I’ll go “ no I’m alright thanks” so could last all of 20 seconds until another 7 yrs go by and I’ll call doc n say “ I think I should be having more tests done” n we’ll just go round n round in circles. Def need to be more assertive hahaha. In fact was thinking of seeing if such a thing existed cos I’m sick of just rolling over lol xx

[Zukosmile07 in reply to Confused1972]

Hahahaha 😂🤣😂😂😂....... "Doctor I think there has been some sort of a mistake, I was supposed to have a prostate exam" hahahaha, got your arse on the screen hahahaha 😂. Anywho, joking aside, I hope you get your point across...I hope that cheered you up and made you forget for a minute......x

[Confused1972 in reply to Zukosmile07]

🤣🤣🤣🤣🤣🤣🤣 you nutter xx

[4567tel]

Don’t be afraid to ask your consultant ANYTHING they have heard it all before and if you ask you will later think oh blow Ishould of asked about this or that so don’t hold back after all it’s your life best regards Terry

[Confused1972 in reply to 4567tel]

Thanks so much for replying, yes I think I’m managing to make more sense of it all with the info ev1s very kindly given. I’m just going to ask everything I have written down n not let him/her go before I’ve finished I can be very stubborn when needed lol. Hagd 😀

[Zukosmile07 in reply to Confused1972]

You can tell, hahahaha 😂 x

[Confused1972 in reply to Zukosmile07]

🤣🤣🤣

[Fordey1]

Hi, I too have cirrhosis and have been closely monitored throughout. I have had numerous hospital admissions due to alcohol, jaundice and complications that go with it. I have been seen at the hospital all through the pandemic, 3 monthly scans, now gone to 6 monthly scans, bloods,consultant appt. I have direct access phone numbers to the liver specialist nurses at the QE who I can phone at anytime for advice if I am worried.They have seen me a few times after me phoning them,same day.I remain well and have been sober for about 14 months. I cannot fault the care I receive. You go ahead and ask as many questions as you need to, my consultant has always welcomed questions. At first I used to have to take a notepad and scribble things down.

Good luck.

[Confused1972 in reply to Fordey1]

Ag that’s great you seem to be getting the care you need and deserve 😀maybe this time I’ll receive it too. Just hope I don’t get the same consultant I saw initially we just didn’t get on which I assume is why I haven’t had the same care as you. 🤞it will be different this time. Stay safe and thanks for replying x

[Fordey1]

That shouldn't have anything to do with it. Widhing you all theluck in the world,xx

[Confused1972 in reply to Fordey1]

Thanks 😀