Good afternoon. I'm Pinny. I h...

[vpinny]

Good afternoon.

I'm Pinny. I had two liver transplants within 5 days in February 2015 as a result of PBC.

Happy to chat to anyone that may be about to find themselves in a similar situation. Or any of you really!

[Chelle_]

wow, 2 tx in 5 days....well done...although I am not sure that's the right phrase. How are you feeling now?

[vpinny in reply to Chelle_]

Hello.

My body had to work very hard to recover from them both!

It was tough.

But I am actually feeling very well at the moment thank you.

[Betonarme]

Wow! So I assume first one was rejected so that they get you another one?? So it's almost 2 years gone. Does your immune system again attacks the new Liver now? AMA negative?

Thank you that you're here to share your experience with us.

[vpinny in reply to Betonarme]

Hello.

No it wasn't rejected. I got a clot in the artery that connects the liver so it was getting no blood supply and dying inside of me.

And my last couple of months blood results show that yes PBC may be back in my new liver 😕

[Becca75]

oh gosh - how come you had two transplants in 5 days! wow how long ago was that? are you okay?

[vpinny in reply to Becca75]

Hello.

I got a clot in the artery connecting the liver so needed another one very quickly. The transplants were in February 2015.

At the moment I am feeling very well.

[cazer]

Hi glad you're doing well now. I'm. Still waiting for assessment.. I'm having an eeg in 2. Weeks time to. Check for hepatic Encephalopathy... Have you heard of it being tested like that?

Cheers Cazer. X

[vpinny in reply to cazer]

Hello.

I have just googled 'eeg' as I hadn't heard of it!

I didn't have anything like that. My family just told the doctors that I had gone a little bit crazy!

[cazer in reply to vpinny]

not gone too mad just very blank fir words names places and forgetting how to do things e. g which way to do things.... how to hold crackers when you all cross over arms!!!!!

[vpinny in reply to cazer]

Apparently I just used to look at people blankly when they spoke to me, was obviously trying to process what had been said, and then eventually I replied! 😏

[cazer in reply to vpinny]

its a wierd feeling isn't it things just feel blank... don't they then its like a light switch coming on.!!!

[cazer in reply to vpinny]

hi had eeg on Monday is borderline for h. e but as ihave some symptoms they def think h. e so waiting for the decision from professor if i will be put forward for assessment. reg saw me so said assume assessment unless i hear different from him but still in limbo !!!! cazer.

[vpinny in reply to cazer]

Hello.

How are you feeling about that? Are you suffering in other ways as well as the HE?

[cazer in reply to vpinny]

varices.tummy troubles. awful fatigue. nocturnal sleep patterns. enlarged spleen which is difficult with bending over. the itch. always cold etc etc so I will be relieved to get on with it. cazer

[cazer in reply to vpinny]

feel excited and scared all together but know i will not survive without it so trying to be positive and think what will b will be. cheers cazer.

[vpinny in reply to cazer]

It's tough every day isn't it? I know exactlyhow you feel. I have had a pretty tough journey to get through it all and I still have some tough days now but I think I still would say that it is definitely worth it. Keep strong.

[Michiganpbc]

Hi wow you have been through a lot! Can you give us the story history of your PBC I would be interested in hearing about it I have stage 2 PBC.

[vpinny in reply to Michiganpbc]

Hello.

Unfortunately I only started my blog mylovelyliver.co.uk when I went in for transplant assessment.

I think I do need to write something on how PBC affected me over the years.

But briefly - I was mainly just exhausted for many years. And then I started to get gradually worse, mainly just generally not feeling well, ascites and then towards the end feeling absolutely terrible 😩

[Michiganpbc in reply to vpinny]

Oh my I had a similar journey....

[Michiganpbc in reply to vpinny]

Hi I just read your blog, it is good thanks so much for sharing i think it helps us to hear someone else going through what we fear I myself have thought a lot about the transplant and would rather read the information and experiences from someone on here than the internet it is scary to read some of that stuff, hope you are well today ....

[vpinny in reply to Michiganpbc]

I am glad you enjoyed my blog and found it useful.

I am feeling okay at the minute. How are you doing?

[Frunanny]

Hi, great to hear you are doing well. I am sure I found you on a FutureLearn course a while ago and you have loads of info on your web if I remember. You are an amazing source of support for all us PBCers. Keep posting. Best wishes X

[vpinny in reply to Frunanny]

Hello.

Yes I did do a FutureLearn course and really enjoyed it!

How are you getting on?

[Frunanny in reply to vpinny]

Hi, Yes, really good at the moment. Thanks. Fibroscan good so taking a break from urso cos my skin is really dry with folliculitis(?) Not tired but have retired for other reasons so no daily pressure. Will keep in touch X

[vpinny in reply to Frunanny]

Glad to hear you are doing so well.

Yes I imagine being retired does help to relieve some of the pressures of life quite a bit.

Do you find enough things to do to keep your mind occupied?!

[Frunanny in reply to vpinny]

Hi there, actually I am missing work a lot but I am caring for my husband so I am all over the place at the moment and new stresses have come in regarding that. I am fed up with all the usual house things and have started to get out a bit. Got a letter about a new study today and I am thinking about taking part. After 25 years or so teaching I haven't a clue how to fill in the time. I am going to a cyber conference at the end of this month which I will report back to our neighbourhood watch group on. I am a longstanding PBCer and I am hoping things will stay as they are for many years to come. Fingers crossed. How about you?

[vpinny in reply to Frunanny]

Hello.

I am back to work part time. I do understand how you would miss work, it was good for my head when I was able to go back to work after my transplants. It drives me mad being stuck at home all day. I also get fed up of doing all the things that need doing around the house :/ I try to get out for a coffee as much as I can to give myself a 'treat' and I have just started a challenge to #walk1000miles in 2017 so I keep going out walking now at every opportunity!

I am sorry to hear about your husband. That must be tough caring for him sometimes if you're having a bad day yourself.

It's nice to chat to you 🙂

[jane1964]

Hello Vpinny,

How long after you were told you had cirrhosis did you have the transplant?I am 52 diagnosed for around 6 years and have been told recently that I now have cirrhosis, not sure what my future will be like, it's hard to imagine.

Thank you.Jane.

[vpinny in reply to jane1964]

Hello.

I really cannot remember when I was actually told I had cirrhosis. But I imagine it was in 2014 as I really was unwell during that year. And then I had my transplants in February 2015.

Have they talked to you about going on the transplant list or have you not got to that stage yet?

[jane1964 in reply to vpinny]

Thank you for replying.The diagnosis of cirrhosis was given by a young doctor not the consultant so I wasn't able to get much information.I had a scan as part of the perception diagnostics trial which showed around 70% of my liver to be quite badly damaged and almost all damaged to some degree,but I have read you can live with 10%.So I don't know, but at 52 I think it likely I may need a transplant to achieve a reasonable life expectancy,but the doctor has never mentioned it,that's my main problem, my consultant is very nice and knowledgeable about pbc so I am fortunate in that respect, but always down played the possibility of cirrhosis, which I now have.I had read up and knew the chances were significant as I was relatively young when I first had symptoms and very symptomatic with fatigue.So I find it hard to trust what he says as he isn't very forthright.I feel it's my life I have plan how to live it, when to retire should I move to a smaller house now or can we wait a few years etc.I think I will have to be firm next time I see him for more information.It is really good to read how well you have done on your blog, it gives me more hope.Thank you Jane

[Kate50]

Hi pinny, how are you, hope you are keeping well, I have read you're blog and found it inspiring when I was recovering from my own transplant , at the end of September 2015, wee question for you , do you still suffer the fatigue from pbc, although I no longer itch and I sleep much better I find I'm still struggling with fatigue, Take care 💜

[vpinny in reply to Kate50]

Hello.

Yes I do still get very tired but definitely better than I was pre transplant.

But I often wonder what is actually causing it?! Our bodies still recovering from major surgery, PBC, daily life (I work part time, volunteer, have a house to keep etc) or in my case old age!!! Maybe some of each 😏

I'm glad to hear you are doing well. It's a tough journey to go through isn't it?

Where did you have your transplant?

[Kate50 in reply to vpinny]

Hi Pinny, I had my transplant at the Scottish liver transplant unit at Edinburgh Royal , was there today for a check up and they have decided to stop one of my immune suppressants MMF, so just on tacrolimus wee bit scared because my liver has been doing so well , fingers crossed it doesn't upset it , it is definitely a tough journey but one I am thankful for every day , take care 🌸🌸

[vpinny in reply to Kate50]

Hello.

How have you been doing since your tablets were stopped?

[Kate50 in reply to vpinny]

Hi pinny, thanks for asking 😀 Feeling much better but getting some weird feelings in my upper abdomen and also feel my stomach has suddenly bloated and become uncomfortable , bit weird , how are you , keeping well I hope 🌺

[vpinny in reply to Kate50]

Hello.

Yes I am doing okay. Apart from feeling so, so tired which frustrates me a lot. I sit down in the evening and just need to fall asleep when I really would like to be able to just sit and watch tv, do some much needed paperwork or do things on my iPad etc.

Has your bloated stomach eased a bit now? Did you find out what was causing it?

[cazer in reply to Kate50]

no expert and am borderline assessment at present but have read quite a bit. the ama... anti mitochondrial antibody us pbcers make is the one which cause some of the problems I think.

mitochondria are the energy making bit of all cells so our ama are effectively attacking these energy making parts.

so even though the scarred up livers are gone the antibodies are still causing mischief... which is why presumably they won't tell us our fatigue will b gone.

i am trying to cap my keeness for a new liver but assume it will sort alot of stuff e. g. portal. h. t bowel pribs. sleep deprivation etc. apologies for any biologicak mistakes but this is just my take on it. best wishes cazer.

[Jlruggie]

Pinny,

First of all I must say thank you! You are our hero! Look out, here we go with questions:

What is it like?

How do you feel?

How old are you?

Are you able to work full time?

How sick did you have to get to get a liver diner?

Why did you get 2 transplants?

What events led up to the transplants?

Can you work part time?

Do you have a husband, how does he respond?

Can you continue usual activities? Do you look the same?

My story; 59 diagnosed 17 years ago, on Urso 650 mugs per day, w 1000 calcium and 4 fiber pills, divided to am and pm doses. I also take cranberry, probiotics and 500 mg vit c daily for reoccurant UTIs. Daily hour long yoga classes, weight lifting 3x per week and occasional biking and running keep me fit. I do not eat red meat and avoid fats, sugar and processed foods. I still have high enzymes, my hepatologist is now prescribing Ocaliva and is ruling out auto immune hepatitis. I'm a speech therapist, I have no children.

Divorced and a broken engagement, now living w a man 19 years younger for the past year and 1/2. Last week after my having 30 days with an upper respiratory infection, my guy dropped bomb that he's fearful of watching me die, feeling devestated if I die and fearful of vesting further in our relationship. I'm digging in my heels staying in optimal health, keeping a clean house, wonderful food on the table, frequent intimacy, making the most money I can and being his best friend. He has 2 teenagers his x wouldn't let him see outside of her house. I insisted he go there to see them and now after 1 year and a half he is going to his ex wife's house to see his children. This is causing some anxiety since he also dropped the bomb of his fears about my age and disease.

What say you Pinny? I'm all ears to any pbc er who'd like to take a stab at it!

Thank you for hearing me

Jlruggie

[vpinny in reply to Jlruggie]

Gosh! That all sounds complicated. I can understand how you feel about your partner going back to visit his children. That must be tough. It sounds to me as if you are doing amazingly well, coping with everything and still doing all that exercise and everything else. I wish you well.

I think I shall just refer you to my blog for the answers to all those questions!

mylovelyliver.co.uk

Take care.