Times up: I dont post on here normally... - British Liver Trust

British Liver Trust
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Times up

Tormented
Tormented

I dont post on here normally. I just read. Do u know when your times up?? Very morbid but i feel like im nearing the end. I was feeling ok swimming regulary then i started to get weak again. As well as cirrohis iv got avascular necrosis in my hips. So im kind of immobilised now. I developed a baterial chest infection .antibiotics didnt work. So they tried another which shouldnt have been prescribed to me. Within 20mins of taking it. I was violently sick with yellow bile and blood. Not had this since diagnosis. Another course of antibiotics and it still hasnt gone. Iv been sick lots since then. I feel ill and tired if i eat. Im sleeping all day and night. I feel like my body has had enough. Iv bought myself a very expensive recliner chair. I tell people to keep off. Its my death chair. With my dry sense of humour they think im joking. But im not. Iv had all my house decorating and new furniture. I feel like im nesting for the end. Iv an appointment at gp on 10th but i know theres nothing else they can do for me. So whats the point anymore. Just wondered if anyone else feels this way.

34 Replies
oldestnewest

I'm really sorry to hear of your troubles. I can't answer your questions because we all suffer from different symptoms and yours are different to symptoms that I had. Can I ask are you on the transplant list? Alf

No its never been suggested. I dont think its an option . Nicki

I think that you should make enquiries about transplant. All I can tell you is that I was extremely weak and muscle wasted and only out of bed for roughly one hour a day by the time I went for transplant. I had been classed as terminal for 4 years with no hope of transplant. So keep positive and make enquiries. All the very best to you. Alf

Thank you for your kind advice. My gp makes me feel like a hypercondriact. I tell her im in pain. She tells me to excercise. Gives me sicknote and more a less tells me to get on with it. My specialist after i told him to cut the crap . Told me the disease would be what i die of. I may live upto another 5 years. My results are always stable at the moment. Thats the only response i get. My bowwls are all to cock again. I just get fed up. Thanks for listening alf

I think it would be a good idea to ask to see another specialist who is more sympathetic to your problems and with a view to finding out more about chance of being on the transplant list. Also good to find out about dietary help for a poorly liver. Keep your chin up and keep posting. The folk on here are a fountain of knowledge. They have all been through such a lot and know a lot more than me. Hang on in there! Alf

Hidden
Hidden
in reply to alfredthegreat

I agree strongly with Alfred on this. I would try and change GPs. Unfortunately some doctors just have absolutely piss poor bedside manner and it just makes dealing with them frustrating and difficult to move in any direction. In my humble opinion; though someday we may have our disease be what does us in, I dont believe any doctor has the right to say when that may be. There are way to many variables in this disease to predict that. So many have gone to the brink and back. Aside of a crystal ball I dont believe they could ever know. Unless of course it was moments away kinda thing. It may be just a matter of changing a medication or taking one away. Talk to the professionals and get to one who will listen. Keep your chin up my friend your not done for yet. It's hard to remain positive when you feel like shit in a handbag I know but keep trying. For the record my GP constantly makes me feel like a hypochondriac so I know that feeling. Which I'm not. But even if I was can anyone blame us at this point?

Hidden
Hidden
in reply to Tormented

Sorry to hear that you are feeling mentally and physically crap. I went to the GP surgery with (subsequently diagnosed) end stage decompensated cirrhosis, I came home with a tube of steroid cream. Things went further downhill, I got myself to a Gastroenterologist. 3.5 years later, a new liver. Don’t lose hope, there are excellent people out there.

Hi nicki

Sorry to hear your in a bad place at present,

Morbidity is something that is always on my mind,always rears its ugly head wether im feeling good or bad.

Many, I think would agree they are similar

Reading your post , if it were me I would be demanding answers , I mean, who tells you that cirrhosis is going to be the death of you? .Not necessarily , I was very very poorly ten years ago, liver failure, constant drains and i was so frail, my weight on discharge was 6st if that, skeleton like.

Have they said what stage cirrhosis you are ? I have ostepenia in my left hip and two prolapsed discs middle to back, restless legs syndrome too, that's a new one!! Awful it is , my mobility is not so good either . You need to push for answers, see an alternate consultant , I know I would!!

Best wishes Linda

Tormented
Tormented
in reply to Millie09

Hi there linda. I think i may have worded it wrong my specialist is one of the best in the country. I asked him to cut the crap and tell me how long i was looking at. His response was if nothing else was to happen to me accident etc. The mortallity rate for my stage could be 1 to 3 years. Also if i keep healthy it could be upto 5 years. I asked him for his honesty. Thats the closest iv got to any answers. When diagnosed i was that ill they didnt think i would make it. My partner was told to prepare himself. So im lucky to get this far. My gp is just a general doctor. I think she only covers the basics. I have esoph varcies. All the rest that goes with it the horrible disease. The nhs do there best. I could not knock them ever. But the death thing it frightens me. I think of nothing else when i was coughing blood up b4 xmas i cried and screamed no not b4 xmas. I had to make xmas with my toddler grandson. I lay awake and watch him sleep alnight because i know im not going to see him grow up. And that kills me inside

Millie09
Millie09
in reply to Tormented

Hi nicki ,

Oh i see , sorry, it was probably me that read it wrong

Now i get a clearer picture.

Yes .. this disease is not nice to say the least, I can imagine what you are going through and I'm so sorry to read it .

May I ask if a transplant has been mentioned at all ? .have you thought of some counselling to help with your anxiety and worries with your thoughts on death. Non of us really know how long we have on this earth, and that's not just people with cirrhosis or any other illness, it's every single human being, I was told by a friend of mine who said, don't waste time worrying , make every day a good day, I've been creating memories with my family, my sister and daughter and my youngest son and grandsons, not for my benefit but for them to 're live when I'm no longer here, and that makes me feel better, don't want their last thoughts of me being sad .

Drs or consultants do not really know when our time is up, they are not mind readers. If ever you need to talk in private, even just to off load do not hesitate to pm me .

Tormented
Tormented
in reply to Millie09

A transplant has never been discussed. But thank you for your kind wotds and the offer of a private chat

Millie09
Millie09
in reply to Tormented

Maybe you could mention it to the consultant ? You are most welcome nicki .

Hidden
Hidden
in reply to Tormented

Hi Nicki,

I totally agree with Millie, I think you need some help and support with your anxiety which is probably a lot of the reason for you feeling so sick. I know it must be very tough for you but you need to have your spirits lifted both for yourself and your loved ones so however long you have is happy and full. With the right support you will find you will be able to do activities you enjoy again with your family so they can live on with happy memories of the time they spend with you. Maybe look online for a councellor to suit your needs in your area if your GP cant help and work towards a happier more positive future

Love Laura xx

Tormented
Tormented
in reply to Hidden

Hi i have a phsyciatric nurse. He said i would be seen by a physichitrist because of my memory loss and confusion. This was september. He always gave the impression i was boring him. He cancelled 3 appointments. Iv heard nothing from him since october. Im not anxious at all. I just know the signs and the pains . I know im ill again. Im that washed out. All the swelling, is back. Im incontinant again. Im sick everyday. My breathing is terrible. I just want to rest. I had a counciller i suffer from ptsd as well. It didmt work. Iv tried it all. Thanks laura xx

Millie09
Millie09
in reply to Tormented

Bless you Nicky xx

Hidden
Hidden
in reply to Millie09

Hi Linda (and obviously to you tormented)

When I was at my assessment at QEHB they had a picture on the wall of an ex transplantee pre TP. He looked like a Japanese prisoner of war. It was frightening. Later in my hospital bed he visited me as a “Friend of the Hospital ” 17 (!) years post transplant and he was the most healthy and lovely person you could hope to meet.

So Tormented please don’t giveup hope and please please read carefully the suggestions (we are not “allowed” to give “advice” lmao) above.

Miles

🇧🇧

Millie09
Millie09
in reply to Hidden

Thank you miles , what an encouraging post.

Linda

Common symptoms + depression. You need someone to love. You need to give away a few things u don’t really need.

Hi,

This goddamn disease can really mess with our mind. Diagnosed with liver cancer 5 years ago, called in for transplant just over 2 years ago. Haemorrhaged badly and procedure stopped, wife and grown up kids told the end was coming. Wife even went round local cemeteries whilst beginning to sort out arrangements. 12 day uninduced coma, came out of it and I believe I am still here because I am bloody minded and not ready to move on just yet. I have asked my professor “why am I still here” his response is “ I don’t really know, because you should be dead”.

I am determined not to be defined by my disease, it will kill me, but nobody will say do you remember Ray who had cancer.

My positivity helps me here - definitely a glass half full type of guy, and when I begin to feel sorry for myself, I call a close friend who always reminds me that he came up to ICU and said goodbye. So every day is a bonus, and I try to make the most of it.

When I am physically sick, I just want it out and move on with the rest of my day.

I have had to begin using a mobility scooter, but if that is the best I’ve got to moan about, then things aren’t really too bad.

Just as an aside, when I came out of my coma, I was told that the prognosis was a maximum of 6 months, likely in a hospice. My first thought as the words were leaving her lips were “ oh really, we’ll see about that “

So what I am trying to get across, is that we are in control of how we feel, I mean on a deep level. I can sit on my pity potty and moan or I can call my friend who will tell me the truth. Your symptoms are real, you are also lucky that you have a straight talking consultant. It’s what you do with the information that matters.

I wish you well and hope you have a positive day.

Ray

Hidden
Hidden
in reply to Barnetaccounts

Fantastically honest and very open response Ray. Did me good hope it does Tormented (Nicky?) good as well. Thanks

Miles

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Trust1
Trust1Administrator
in reply to Barnetaccounts

Thank you Ray Barnetaccounts for another brilliant and supportive post. That reminds me, I will PM you now!

Trust1

Fantastic ray !! . Amazing post ,yoir positivity is out of this world, made me sit up and think that's for sure! Hope this helps Nicky

Linda

Thanks Linda, my story is obviously much longer and I have written a blog about my cancer journey. It can be found at 1liver1life.wordpress.com it goes into more detail both good, bad, the ugly and the beautiful. Needless to say words are cheap but judge me on my actions. I have just returned from a 7 week soirée to the Caribbean and a month in Florida with my grandkids and the mouse. One day this adventure will end but for now I am going to keep planning and always try to make the journey happen with a silly smile on my face.

Oh wow, I will read your journey with great interest ray,

How wonderful! Good for you !

God Bless you Nickie 🙏I don’t know much about the Liver to offer any advise, but I will be praying for you. I’m sorry you have to endure this pain. I will be praying for healing and strength for you ,and your loved ones.🙏🙏🙏

My heart is going out to you. Keep posting here, these people are amazing at keeping us all strong. I don't think I could have got through my journey if I hadn't found this mountain of life experience. X

Trust1
Trust1Administrator

We are so sorry to hear you are struggling Nicki.

If you would like to talk our helpline is open today until 14.45 on 0800 652 7330

Take care,

Warm wishes

Trust1

Hi Tormented,

I took a look at your previous post and can see no reason why you wouldn't be eligible for transplant. You are still young, have been keeping active and have abstained from alcohol since 2016. So everything looks good from that point of view, unless of course there are other complications we don't know about that may stand in the way.

It does sound like your infection has really knocked you for six. With cirrhosis that is pretty much par for the course I'm afraid. Your ability to fight the infection is much hampered by the cirrhosis and its associated complications. So feeling how you do is not too unsurprising.

However, not everything you are feeling will be related to that infection. What you describe is very similar to how I felt during the last 12- 18 months or so prior to my transplant. It is therefore still worthwhile speaking your doctor as this is a noticeable deterioration in your symptoms even though your blood results may have remained stable. Ask him to speak to your hospital consultant for advice and also to advise him of your change in symptoms. This may be a trigger point for that discussion about changes to your treatment pathway or even potential referral for a transplant assessment if they feel one may be necessary.

Tormented
Tormented
in reply to Kristian

Hi there kristian. I was doing so well until these infections. I have been for some retail therapy today. I had to come home after an hour my back and shoulder where in agony. Im kinda fed up that ppl think im depressed. I dont get time to be depressed. Even when im ill like now. I have my 2yr old grandson 24/7. My daughter is a student midwife. Im the childcare through choice. I dont bother anyone with my illness i keep it all ro myself. I dont let anyone see me upset. Its all my own doing, iv only myself to blame. Im afraid there is no pity potty in this house. Im aiming to get myself back swimming monday. Iv set myself that goal . My eyes are yellow and iv lost weight over xmas. God knows how. I just wondered if anyone could feel the end near. I wasnt looking for sympathy. Im fully aware of the illness. Im prepared for when i go. Iv sorted my own funeral so i dont leave anyone struggling to pay for me.

Thanks nicki xx

Hi Nicky,

Please do not take anything I said as criticism, it is far from that. My pity potty is still here and although not sat on much it can sometimes be a place where I can feel sorry for myself. You certainly didn’t come across as depressed, but this disease will certainly take its toll on us mentally. The complications just add to the ever wrong increasing woes and will only add to our anxiety levels. You are obviously a strong person, as I need others to talk this through with, as left to my own thoughts I would be in serious trouble.

Ray

Kristian
Kristian
in reply to Tormented

Hi Nicky,

What you say resonates with others perhaps more than you may initially think. I too didn't tend to share anything related to my illness unless it was absolutely necessary. Like, "err, are you free to take me to the hospital?" Other than that it was just a case of "ok your just gonna have to bear with me as I cant walk that fast, or that far". I suspect people knew I was feeling a bit crap because I looked a bit like crap. I just wouldn't generally say so. I was well on the way to sorting my funeral out too, but got the call for transplant before I actually made any arrangements. The transplant coordinators did say get your affairs in order, so that was what I was doing. Like you, I wasn't going to leave that burden, or any other burden, on someone else. Although, they were in for a nice pay out if I did pop my clogs.

When you ask the question, "did I feel like the end was near?". The answer actually was no, not in the slightest. In truth, my almost demise happened as a complete surprise. I left work the day before Christmas eve feeling my usual self and 24 hrs later it was a 50/50 chance of whether i'd survive the night. So no, when the end is near you may not always get that advanced notice. To be honest with you at the time of transplant it turned out that I was actually a lot sicker than I thought, or felt, I was.

Of course that's my experience and others will be different. People can be feeling extremely unwell by the time transplant comes. Yes, some don't make it, but lots do. Lots improve both with and without transplant taking place. Ok may be if it was your very last day on the planet you make feel like it is the end, but before that, i'm not so sure. It certainly wasn't in my case anyway.

I think in your case when the doctors hear your latest symptoms and see the colour of your eyes, or you describe it to them, they will look to move further forward than they may have done already.

Hidden
Hidden
in reply to Kristian

Well said Kristian. I share many of your thoughts/comments that applied when I had cirrhosis but 3 years pre transplant!

Miles

🇧🇧

Hidden
Hidden
in reply to Kristian

Rings so true for me.

Sometimes i like abit of peace and quiet. My partner is 16yrs younger than me and is a football fanatic (leeds) obviously lol. My grandson runs me ragged bless him . Always noise and ps4 games driving me mad. So when i finally have sometime to think, i have really strange off the wall thoughts. I dont mind my own company . I was a bus/coach driver for over 20years. We have a strange dry , often black humour.

Thanks ray

Nicki

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