sh##ty consultant

[Mercsclass320]

hi, I was diagnosed with cirrhosis in 2015, since then I have had 3 tummy drains, 3 bouts of encephalopathy?.Last august i had some banding done, this year I have had, more banding. I have asked my consultant to refer me for assessment for a transplant, he refused, saying that as yet all my symptons were well controlled, and they would refuse me. My symptoms are, chronic fatigue, nausea, and the feeling of being very uwell. I don't know how get past this man, I have told my gp, but he said it was upto the consultant, he said he couldn't refer me. so any ideas?

[Jahida]

Sorry you're going through such a hard time. It sounds really exhausting. Unfortunately you have to meet certain criterias to go on the transplant list. It isn't just the symptoms which I know are truly horrific.

I went through acute liver failure which was really quick and I wasn't put on the list until I was VERY bad. It took two weeks for me to go on the super urgent list. They tried their best to see if they could control the damage.

When you do go in for your appointment though you can ask to see another consultant. It doesn't have to be the same one. Usually at the liver clinic there should be more liver consultants working too. Ask the receptionist. Also ask for your reports so you know how far gone the liver damage is and take it from there.

Wishing you luck.

[Fastkat]

Can you work out your UKELD score from blood results. This may clarify wether you should go to tx assessment or your not at that stage yet. If your not at the UKELD score think yourself lucky and look at improving your diet and lifestyle.

Sorry to hear your having a rough ride.

[carmik]

Hi

Which hospital are you attending and are you seeing a Hepatologist rather than a Gastroenterologist?

You are entitled to a second opinion any time even at a different hospital if you are not happy. My husband was being seen by a Gastro for over 4 years and deteriorating. We asked for a second opinion at the transplant unit and within a year he was on the list.

Good Luck

[AyrshireK]

Most transplant units prefer to see patients too early rather than too late. Which t/p centre would you expect to be treated at?

As Carmik has said, request a 2nd opinion (it is your right to do so). If need be do it in writing and that way the letter is in your file. It might stir some action.

My hubbies local consultant (a gastroenterologist) decided he would refer hubby to Edinburgh after a year of treating him locally - after 5 months we discovered the referral hadn't been done so I chased it up in writing & discovered consultant himself had been on long term sick and hubbies file hadn't been touched. Within a week of my letter hubby saw a locum who although didn't feel hubby was at t/p stage did do the referral as Edinburgh prefer to see people too early. Edinburgh then took over hubbies care even though he wasn't assessed (& listed) for a further year - he remains under the care of specialists at Edinburgh but isn't on the list any longer. Just to point out hubby has never had a bout of HE (he has the sort of constant mild form), never had ascites and had 42 varices banded (by Edinburgh) - chronic fatigue and sleep disruption are his main constant symptoms (sadly there is no guarantee that transplant will cure these).

Perhaps put your request for a second opinion / referral to transplant centre in writing - it is harder to ignore. Also with the letter in your file there would be come back on your consultant if you did get worse or missed the boat for transplant and this just might spur action.

Best wishes, Katie

[jojokarak]

I had banding, bleeds, h.e and fatigue for a couple of years before I was referred onto my transplant hospital ... I know the symptoms are awful but if our bloods are ok then they won't even consider you for transplant .... And if your symptoms are being managed then they think we are coping they are not interested in how it affects us mentally ..

[Hidden]

May I ask please the cause of your cirrhosis? Are there any other underlying factors?

It's not easy to comment not knowing all the facts and details. It is possible to lead a normal life with cirrhosis being controlled and certain life style changes.

For most of the time, transplantation is a last chance option. It's about life threatening conditions, or if your liver is deteriorating to a point were your life is at risk (i.e. cancer). It's also about quality of life. People can't go and demand a transplant just because they feel they should have one. It's really not that simple. There are people out there most likely in a worse condition than you are, and there still not going to be able to get to have a transplant.

I am sorry about your condition, I really am. But these protocols are in place for a reason. and it wouldn't be fair to buck the system. I think your consultant is correct as they appear to be monitoring your condition closely.

Good Luck

Richard

[Faithfull]

My hearts with you I'm overwhelmed I'm so sorry.

Belive me my case is what these mistakes to you me we No our body's and yes everyones overworked under this pressure being so ill what chance it's fighting to live ,

Feel so aggressive angry about all this as we are in our on hell As it without having shit upon shit sorry it's sat no one to give me answers again sorry

Ghhfftyuh

[Brett11]

Welcome to my world. I’m exactly the same. Well, I’m in Australia not the UK

[Faithfull in reply to Brett11]

In in hell in me head uk

[Faithfull in reply to Brett11]

Wish u was here instead of me

No them big spiders thank for letting me in now our world

[Hidden]

I have been going through some of your symthoms and wen I was referred to the transplant team, they said my MELD scores are too low. So, now all I have to do is live around my symptoms. If I get fatigued, I take a nap; if I am sleepless I take a melatonin.

[Faithfull in reply to Hidden]

I feel so ill is this it constant I feel my body's bean beaten and evert muscle bone head foot hurts bad feel got flu I'm not under no hospital discharged wat now

[A9KSY]

Do what i did kick up fuck and demand a second opinion, it eventually worked for me. Be persistent and a pain in the ass as consultant's do NOT rule you or anything else. Fell out severely with a few of them but its all sorted out now.

[Mercsclass320 in reply to A9KSY]

I have asked for a second opinion and got one, the problem is both work in the same unit at the same hospital, and I have seen more of the consultant to which I am being referred than my own consultant, he did my banding last week. I have emailed a consultant at st james hospital in leeds, they do transplants there, so I will have to wait and see what the reply is.

[A9KSY]

All the best i fully understand where you are i had resigned myself to dying but here i am after a long hard road successfully transplanted and very much looking forward to my new life

[Millie09]

Welcome to my world, cirrhosis 10yrs now. I have insomnia, fatigue, lethargy, pain in upper right quadrant, nausea, besides that i have osteopenia in my hip and two prolapsed discs middle to lower back so my mobility is restricted at times .. i know my.meld score is not high enough for transplant even though i have stage f4 fibrosis. Every day i wake and i never know how i am going to be , but i listen to my body. If i am.tired i go to sleep, if i have pain.i rest up with a hot water bottle.. so basically i get on with it as much as i can

My LFT are all.normal which is the main thing , if i can live like this for another 20yrs with.no transplant then i count myself very lucky