Hi everyone. I hope you are all having a "good" day at least as good as possible. I am feeling very confused about my care. I am 77 with decompensated cirrhosis but still enjoying life. I saw my consultant from Q.E. B/ham last month. He said my next clinic appointment would be 3yrs time!!! Also next endoscopy 3yrs.!!! I have had 6 monthly clinic and yearly endoscopy's tho no banding now for 2yrs. I have always felt I had excellent care from the NHS but now I feel cast adrift. This was last month before the Corona virus put the already overworked NHS under more strain. I am confused about my care plan. Is this what they call palliative care? Except for exhaustion, loss of appetite, nausea and muscle wastage I do quite well. Your thoughts on this would be much appreciated. Many thanks in advance, Jacquie
Cast adrift: Hi everyone. I hope you are... - British Liver Trust
Cast adrift
Hi Jacquie
Three years seems one heck of a long time between appointments for someone who has liver problems, are you sure that this is not a mistake?
Hopefully it is!
Best wishes to you.
Alf
No, that's right Alf. 3 yrs! I think I had better phone the secretary, but wanted to check what you all thought. Thank you for replying. Jacquie
Or maybe phone the liver nurse who was there. Just wondered if this was usual. Hope you're doing well Alf.
Doing ok Jacquie thanks for asking 
Yes, I think that if you phone the liver nurse she/he will know or be able to find out why for you.
Still hope it's a mistake!
Best of luck with it.
Thank you Alfred. Xx
Hi donaldsgirl
That really does sound odd.... if it is considered palliative care surely someone there should have explained that to you. Or for whatever reason you really should have been told why the care plan was changing. I know that they are starting to get a bit wound up about Coronavirus down there now but three years!!
I go to QEHB as well and yesterday for the first time ever I made an input to their PALS by email to not exactly complain but to say I also hadn’t been given adequate information. Then I copied the email to the liver Consulatant. Seriously within an hour the liver Consultant had rung me and PALS had replied asking for my telephone number so they could ring me! The Consultant was so good and apologetic and explained things so well that I needed do no more. It may be worth trying that route. I know I was very apprehensive about it because it felt like I was whinging but in reality it is not unreasonable at all sometimes to question something that is so very important to you. You definitely should, I think.
Good luck.
Miles
Hi Miles. Yes that is a good plan. I've been hesitating for a month now, as I have always had such good care and also, to be honest, it threw me into a bit of depression. Trouble was, the consultant was late, had a lot of patients to see,and was in a bad mood I think! He gave me 15 mins and I had no chance to ask my questions. I think I will try again to get hold of the liver nurse to see what she has to say, and then,if not satisfied go to Pals. I hope you are ok this morning and thank you for your advice. Jacquie x
👍
And don't forget......
.....NO LIFTING xx
Lol! Well it’s attempt No.2 at getting a fix for that next week. That is If they can find me a bed this time!!
Fingers crossed for you xx
Maybe you are in such good condition? I hope like everyone else says you check on this. It does not sound too good. Stay strong - Love Jaycee
Hi Jaycee. Thank you for replying. I do keep pushing myself to do stuff and be the old me and I think I am in a better state than many. But.....it will be a miracle if I am still alive in 3 yrs. So I will push for some answers. I hope you are feeling better every day,and thanks again for replying. Jacquie x
Hi there Jacquie,
I know your turmoil well. When I was 69 I was sure I would be taken off the list, due to my age.
It was not true, I had my transplant and they still look after me.
But it is that totality, that we are all scared of, that raises its ugly head.
You do right to bang on the table and try to find out why. You sound like a fighter and seriously you must be quite well for them to have made that decision.
I was very fit before transplant and kept thinking maybe I am too fit! LOL they could not win... I was either thinking too old, or too fit.
Check with the liver nurses. Just for your own peace of mind.
If the answer is the same, you are well enough to manage fine, then time to live life to the fullest and celebrate!
I certainly do not want to waste a moment of whatever is left.
Shame this darn virus is stopping me do my “Dora the Explorer” act right now. Otherwise, I would be off seeing things, doing things, enjoying what time any of us have left.
Stay in touch, everyone on HU is always here to lift your spirits... they have the combined effort to bring a smile to everyone and anyone’s face. To make the whole world smile. Xx
Stay fit, happy and healthy, love Jaycee
N1 JC 👍. Wish I could say nice things like that! But I have my excuse, I’m a man 😀👍.
In Jacquie’s case it is definitely not a case of SEGA SEGA to get an answer - Jacquie needs to be told now! So blooming frustrating I’m sure. At times we are all too meek and mild. Tbh no-one really seems to mind when you do raise reasonable questions, do they... well, except my Orthopaedic surgeon - but the less said about him the better 😀.
Miles
Well maybe not all of us, I was making to much of a generalisation there - oh and I don’t mean you are not meek and mild. Oh dear how not to word things! Aha I have my excuse again, I’m a m.....
Well Miles, you do a wonderful job. You are always making me smile. Jacquie xx
Also me !
Quite agree Miles xxx
Just a man - a pretty darn awesome man too!
Always ready to help anyone, at any time. A true hero, just like all the other lovely folk on here.
Jaycee
Jaycee look at me now 😳 or what! Too kind - and I never forget SEGA SEGA - as you know. Still think that when things aren’t going quite the way I would have hoped they would!!
It is just fun and nice to be on here.... I really wish I had known about this forum before I had had my transplant! Somehow our #1 son found out about it and told me - well actually he has mildish liver problems so he must have been googling - so googling is sometimes useful 😀👍
Very good I think that is great news !
And you too Jaycee. Lovely letter.....thank you. Jacquie xx
Hi Jacquie,
I'm in a similar position. I was diagnosed over 3 1/2 years ago, and I have had my consultations reduced to annually. Like you, at 72 years old, I feel that I have been sidelined. My gastroscopies are now biennial, and a second fibroscan has been refused. I was actually told by my Hep Consultant (the only one in my NHS Trust), that at my age, a TP was "unlikely". I have many of the symptoms associated with cirrhosis, and am just left to get on with it, despite me calling his secretary to ask for even just a phone call from him to address my issues.... the main one being constant capsule pain. My appointment is in 3 weeks time, and like yours, only last 15 minutes, but if he shows his usual disinterest, I will be asking for a referral to Kings College liver Unit in London.
I think maybe a call to PALS is needed to make them take notice and care of you.
David
Hi David, and thank you for your reply. I rang the liver nurse numer again this morning. The answer phone said they try to get back to patients within a week. What happens in an emergency? My consultant said a definite "no" to transplant last month, but at my age, that is fair enough. When I get to speak with liver nurse, if still not happy, I will go to Pals. I don't want special treatment, but this is such a contrast to the excellent care I was receiving. Best wishes to you. I will keep in touch. Jacquie.x
Hi Jacquie,I had to call the secretary 4 times to get a call back from the consultant, a month from my first call. All I needed was for him to suggest liver friendly pain relief I could suggest to my GP. The problem with my consultant, is he won't acknowledge that it is liver related, so isn't interested. That's why I want a referral to King's. I will contact PALS, if he just wastes my 15 min appt like he did last time.
David
Not Liver issues, sure you don't fit in? yourCapsule!
Terrible is the fight put up by the senses. Fight bravely! Conquer them you must. Davianne. You Conquer Must Up. The idea of winning a doctor's decree gradually assume the aspect of a great moral struggle, and the moral fight possesses immense attraction for you.
So prepare, say a prayer
Send the word, send the word to beware
We'll be over, we're coming over
And we won't come back till it's over over there.
Stand & deliver. 🤔
Stiffen the sinews
Summon up the blood
Disguise fair nature
with hard favoured rage
Look out Doc,
I've got a newly fletched arrow,
just for you🏹🏹🏹
Now set the teeth and stretch the nostril wide,
I don’t think so somehow - well certainly not when out and about!
Miles, I'm not Kenneth Williams🤣🤣🤣
Ok🤣😂🤣 will do xx
Yes. It's all you can do now. I have de compensated cerrhosis caused by my immune system causing possible PBC. At least I know what I've got! Good luck when you do get to clinic. Jacquie x
Hi Jacquie it's not pallavive care, they make it plan to you when it is,I know from experience. I really Hooe you have checked
Best wishes
Dawn
Oh Dawn, thank you for your message. I am so sorry that you have such bad news and hope and pray that you can enjoy what time you have left, like we all try to do. Best wishes, Jacquie x
Hi Jacquie,
It is usual practice to monitor cirrhosis patients every six months with bloods and an ultrasound scan and of course any concerns in between times you can always request to see them if needed.
Can you possibly clarify matters with your consultant and if not maybe PALS can assist you?
If you are struggling with access to pallilative care then our publication 'Thinking Ahead' may be useful as it helps plan for your future when you have advanced liver disease. The publication will help you talk to your hepatology team, GP, relatives and carers about how you would like your future care to progress, and encourage you to start those conversations early so you can make your preferred care options clear.
britishlivertrust.org.uk/in...
If you would like a chat, our nurse led helpline is open Monday to Friday 10am to 3pm.
You are not alone,
Take care
Trust1
Thank you Trust1. I am going to wait till I get a call back from liver nurse who was there at the time with the consutant (answer phone said within a week) then if I'm still not clear what's happening it will be Pals I guess. Thanks again. Jacquie
You could always call us next week for a chat. Myself or Kirsty would be happy to speak with you. Take care.
Thank you Trust1.
Hi Jacquie, I’m in my seventies too, and still on 6 monthly scan, bloods checks. And a 12 monthly consultant check.
He is considering 12 monthly checks scans and bloods purely on the basis I’ve not shown any deterioration, in fact improved as my liver is working perfectly fine now . And my last bloods he told me that they we’re all back to normal range with the exception of jaundice, which is slightly elevated. He always stresses if I developed any problems that worry me, to ring his secretary and he will review me straight away. He also says you deserve a treat 😋. Yummy I had a sausage roll in flaky pastry ha🤣
I think Jacquie all you need to find out is why 3 years??. If they have decided to change your treatment, then you have every right to know why ?, after all it’s YOU and your body there treating. Really bad manners on their behalf. Go girl, give them the rocket 🚀 they deserve.
Chrissie 👌x
Hi Chrissie, thank you for taking the time to reply to my post. I'm so glad you are doing so well. I am too, considering I have some ascites. It is hard sometimes to know if a symptom is liver related (like forgetfulness, back ache) or just old age.🤣😂 We have been very pro-active with my health, keeping our own files on everything, chasing appointments up and generally making sure we saw the dietitian etc. And the QE B/ham have been marvelous till now. As you say.....time to get the big guns out! Thanks again Chrissie. Go and have another treat. Jacquie xx
Anytime Jacquie, you just hold on and I’ll do the same, I bet we’re the one’s still standing 🤣.
Chrissie xx
I jolly well hope so. It won't be for want of trying! Too much life still to live . I'm only 25 in my head. Bet your the same. Xx
Ditto your right 🥳. Just back in from walking the dog 🐶, had to push myself today, having one of my lethargic periods 🥱Zzz nevertheless onwards and upwards 🤣eh. xx
Hi Jacquie, just a quick line to ask how are you doing? You had lots of replies. I hope this shows you that a good deal of nice folk care on this site. So lean on the site, when you need to. Stay safe in the current crisis. Love Jaycee
Hi Jaycee. Oh I do know how lovely you all are on this site. And I know you are the only people who really know what cirrhosis is like to live with. I have now managed to get a copy of the letter my consultant sent to my GP, although that doesn't tell me much new. I have left another message for the liver nurse to get back to me and will give her a day or two more. When I have got her take on what the consultant said I will write to him with my questions. The crisis in the NHS with the virus has changed what we can expect from them somewhat hasn't it. I hope you are still feeling well. Have
you have gone into lock-down to protect yourself? My husband wont let me out now!!! No hairdressers, horrors! Thank you for checking on me. Stay safe, Jacquie xx
.
Hi Jacquie
Yes my daughter insisted on my self isolating. We must all remain strong in these difficult times. Good luck I hope you still bang on that table loudly. Xxx Jaycee
Your husband is doing a good job then Jacquie! I am being held prisoner by my daughter who only lives next door and won’t even let her 5 children in to see me. It’s hell! Lol. But frivolity aside, it isn’t nice is it - but needs must - and if you’re not going out you don’t need to worry about your hair 😀👍. Just keep thinking of that first visit after all of this is over! Bliss.
Good luck and hope you have a hobby or two!
Miles
Hi Miles. Yes I know you men don't worry about your hair (my husband doesn't have much left to worry about) but to a woman, well, it keeps her moral up😍 But seriously, I know it doesn't matter much in the sceem of things. My new hobby Miles, according to my husband, is a big spring-clean of the house!!!! This would be great if I could find the energy. So it looks like I will be supervising him as usual.😄😂🤣 Keep safe, and keep smiling Three Smiles . Jacquie xx
Aaagh - cleaning...😕. Keeping up the supervision sounds the better option!
I’m trying, I’m trying 😀😀 👍. Actually that’s what my wife said to me a while ago, except she used stronger language - she also said oh no three months of this!!
🤣😂🤣 xx
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