Pondering

[Millie09]

Hi all , I am sort of new to this site . Was on another one but left due to not very nice personal messages to me . Anyway . I have had Cirrohsis now 8 nearly 9 yrs . My LFT tests are all good sofar , I have however been refered to see a hepetologist in February , never seen one before . Was dischsrged from my gastroenterologist two years ago . That was when I had my last ever liver scan . But I see so many posts on different groups I am in and some have said how have I got this far without transplant .. So I am wondering that myself . My Cirrohsis was caused by alcohol . Yes , I have relapsed a few times now , so further damage has obviously been done . But it does make me really think now that time is running out for me . 5/10 yrs I was told life expectancy was even though I was told 6 months 8 yrs ago . I do eat as healthy as I can but I am a bugger for cocolate .. Which then I know can also be bad due to sugar overload on the liver . Have so many things going on in my head . I even asked my dr in December what my meld score was . He didn't know .. My insomnia is bad but I refuse any meds . I have anxiety and depression , but the depression is lifting now due to my meds .. I am hoping and praying that I can live another year through .. Thank you for reading ..

[gmo3352]

Hey Millie09

I am so glad you are going to see a hepatologist! They will be able to answer your questions....be sure to bring in a list!! But just a few thoughts. I have cirrohosis from an auto-immune disease, PBC. I was told if it had been alcohol induced, my liver would have had the ability to heal itself, depending on the damage, but with PBC,, no such luck. Maybe ask if yours has begun to heal. I know you said there had been a few missteps, but hopefully healing has begun. It would explain why transplant has not been discussed. I have been told if your liver has begun to heal, you can expect a normal life span. I hope and pray that is the case fo you! Also, if you have your blood test results, you can calculate your MELD score...see optn.transplant.hrsa.gov/re... know hospitals differ on what score makes one eligible for a transplant, but if you knew your score, more to discuss with the specialist for those few precious minutes of your consult. I too try to eat healthy, but chocolate is also my downfall! My doctor said that alcohol and sodium were numbers 1 and 2 to avoid, and refined sugars, number 3. So, hopefully, stopping 1 and 2 and an occasional cheat on 3 wont get me too far afield. So glad your depression is lifting! I struggle at times knowing life is shorter for me than others, and i love my family and friends so that the thought of leaving them is rugged. But i realize that those sad thoughts rob me of precious moments that should be spent with them, laughing, loving and living life! Please know so many of us understand all that you are going through! My prayers and thoughts go to you....All the best....

[Millie09 in reply to gmo3352]

Hi gmo3352, thank you for your support , well so far my liver function tears have been all good , but I really wanted to see a hepetologist as I know that is their field of medicine . Yes ! Good idea on making a list of questions , I have my last LFT results with me so I will try to work it out if I can , thank you for the link .. Well I have stopped drinking and have been on a low sodium diet for 8 yrs apart from going out for meals or Christmas where I stay with my daughter and her family so I can't really ask them to make me one especially for me on the Christmas meal . I do have a bad craving for chocolate which I am goin to try to reduce down gradually .,sorry to hear your Cirrosis is caused my PBC , but as you say , even when we know our life expectancy could be shorter than we would like its no good feeling down is there , it's really out of our hands . Glad I am not the only one thinking the same way . I will let you know what happens at the hospital in Feb . Thank you so much for your inspiration ..keep smiling .. Best wishes .. Linda

[Lemondrizzle69]

Hi millie09, depression is a vicious circle I know and it's easy for me to say but please do celebrate the fact that you havent had a transplant, trust that the doctors really do know what they're doing and enjoy the life you have. I had a transplant last year and as much as it has saved my life it's it's a tough recovery- mentally and physically

Good luck w you'd hospital appt and as everyone should do, do 1 lovely thing a day

[Millie09 in reply to Lemondrizzle69]

Hi lemondrizzle69, thank you for your reply 😊. Yes depression can make our thoughts bad at times , plus the anxiey I feel , I know I should trust my doctor and believe me he's one doctor in a million . So funny , takes his time with you and never rushes to get you out . I even have his personal mobile incase I have any trouble with reception at surgery as only he knows my medical background . Well that's fantastic to hear you were given a transplant .i can bet it's a very very difficult operation to have to deal with after , all the questions , the do's and the donts etc , but you were given the best gift ever and I'm so pleased . Yes I know I have not had a transplant or even been on a list for one ,but as I said it does make me wonder how much life I have left in this liver of mine . I do try to stay positive as this was my New Years start but that little niggle pops up in my head just to remind me of what I am living with , I hope you are doing well ! 😊. Not long now until my hepetologist visit . I am looking forward to it as silly as it sounds . ... Yes I agree with you there . I already did yesterday . 👍. and it makes you feel really good . Best wishes . Will let you know how my appointment goes on. 28 feb

[Faithfull]

You ain't leaving us lot yet !!!!!!! sorry I just read your post yr ago really made me think and cry as I do feel that only this is my outlet on here and I'm grateful . Hope u get on alright 25th I'm seeing liver dr . Missed my hip dr who

I don't like him he left me far to long and the day of seeing him me back and other hip gone my middle name is lucky.

[Millie09 in reply to Faithfull]

Hi faithful!! Aww bless .. sorry i made you cry .like you this is my only link to any support so to me its a lifeline.

Well i take it one day at a time now aa this time last year i had no mobility problems at all .yet here i am with degeneration of the left hip and two prolapsed discs and waiting to try find some here else to live..

Funny enough i dont like my hip dr either 😂😂.. good luck Thursday x

[Faithfull in reply to Millie09]

This is my lifeline I never speak to no one .the reason the hip dr gets on me nerves is don't listen and when I see him he keeps saying I'm sure I see u somewhere not hospital.

Yes I think i he used to be a doctor atnick oh me kids lots of them lots grief

[Catherine2017]

Hang in there maybe you can get a transplant. I also have Chrosis I don't know how long I've had it . My surgeon done s biopsy in 2016 when he was doing surgery on my intestines blockage. I also have diabetes too. I've a 66 year old mother, grandma and great grandma. So I've lived s good life already. You take care dear and you are in my prayers.

[Millie09 in reply to Catherine2017]

Hello Catherine 2017

what a lovely thing to say.thank you

So you too have cirrhosis then, sorry to hear that hun. Im not too good with it today; have had pain in the upper right quadrant for a week now but this morning it really flared up. On my own i do worry, i have family but closest to me is my sister half an hour in a taxi from me. I will be ringing the hospital if it continues. How lovely you have your mum and grandma and greatgrandma😊. They must be a geat focal point in your life.

Keep positive .my thoughts are with you .. ☺

[Catherine2017 in reply to Millie09]

Thank you Milie09 iall of my family is dead I am a mom . Grandmother and great grandma my self . I know what you mean I have been hurting on the right quadrant for a week my self . You take care nice talking with you..🙂

[Millie09 in reply to Catherine2017]

Oh i am sorry, my mistake. Yes i am all of those myself.

If your pain persists then please contact your hospital or dr at least. You take care .. if you need a chat just pm ne ☺

[Terricotta]

Hi Millie09, yours is an amazing story. Doctors are struggling to help my husband. I'm really interested therefore what meds got you through if I may ask.

[Millie09 in reply to Terricotta]

Hi terricotta,

Well im still here 10yrs now with cirrhosis, i do have stage f4 fibrosis now with mild fatty liver. My mobility is not as good as i would like but that is a long process. To be honest with you the only meds i take for my liver are thiamine, vitamin b12 and lactulose for hepatic encephalopathy. Other than that i try to eat healthy but i dont restrict myself and allow a treat most days but only a small one now.

I am having 6 month check ups with liver doctor and regular scans , and yearly endoscopy, other than that nothing else.

What stage is your hubby in ?.is he not helping things, do you have a hepatologist at all ? . Linda

[Terricotta]

Hi Linda, thank you for your reply. Sadly, my husband is no longer in need of help. But thank you for asking.

[Millie09 in reply to Terricotta]

Oh no, i am so very very sorry. thoughts are with you..😔