Newcastle transplant update!

Hey everyone, sorry for the delay on update. There's no mobile signal in this room only wifi and my partner kept the phone on my request for calls and tects for a few days. 

Well I thought the wait in hospital was  frustrating enough, thinking possibly tonight someone will come into the room and tell me... which was eventually what happened! 11.30pm Sunday coordinator let blme know about a possible liver donor and expected transplant to to take place 8am Monday morning, this changed to the afternoon etc... after it being a hot day and nil by mouth I wondered if it was going to happen or not. During the early hours wait I was lucky a more local lady who'd been through transplant here kept me company until my mum and partner arrived and stayed a few hours more to talk a bit more to them about her experience. 

Not sure exact time operation commenced but in the region of early evening Monday. I felt relieved as I had the surgeon I wanted too. The donor liver was predicted to be a bit too big (& minor sti issue) Luckily nothing needed to be cut off the size if the liver. It took around 10 hours and apparently I had 16 bags of blood in op due to a major bleeding issue.

Apparently a few hours in ICU I was subconsciously pulling on my breathing tube so took it out and a few hours later that morning I was woken up.

I did some physio, but most of the day was hazy. Today I've had central line and tummy drains removed although still a bit swollen although I no more have a yellow belly. Got a few kidney probs but no major issue yet. Doctors & surgeons are impressed especially during the lapse I had in op I think they thought I'd be on more machines longer and sedated a long while.

Never had a general anesthetic op before, so trying to get use to the pain... sometimes feel like a wuss though! Got to do what you've to do to survive after only get one life to fight to keep going.

Next step I hope to be moved to the transplant ward at the weekend seeing how I go day by day :-)

My story is a bit odd as it's a bit of a one off condition! (HHT) I wasn't put on the waiting list with a ukeld score like most. 6 months ago I had no idea I had liver issues!

I'm happy to talk to anyone going through anything similar for non clinical advice just through my experience so far as the patient.  

Sorry if riddled with spelling errors, blaming tiredness!

Kind regards

Alicja Burns xx xx xx

44 Replies

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  • Wow, what a fabulous post. So glad to hear you're doing well. Thank you so much for taking the time and effort to keep us up to date. Its great to hear such positive stories, you've had a roller coaster ride of it, but coming out the other side now.  

    Wishing you all the best, and super good health and recovery. 

    Take it easy

    Best wishes

    E x

  • Brilliant account. Sending you best wishes for continued recovery. (Yes, it does hurt, doesn't it!)

  • Weeks later and still does just a bit!! But then you remember how massive the op is, nerves cut n all, insides moved around for new accommodation! X

  • Good to hear your update, Alicja. You clearly have lots of energy! Best wishes for progress towards getting home and a new "normal". 

  • Great post so pleased for you and vey informative post...thank you...well done...now concentrate on building yourself up and getting home.... 

  • Think they are being cautious sending me home simply as I live so far away, but taking each day as it comes! X

  • So glad to hear it all went ahead Alicja and you are well enough for a quick update, well done you.  One day at a time and hopefully you'll be on the road to recovery in no time.

    Lots of love to you, you've been in our thoughts.

    Katie & Stephen xx

  • Thank you, it's been tedious and still in hospital with a few niggles, been passed round wards too from the ICU to the transplant centre ward, back to the main liver ward! Xx

  • Thanks for the update, glad it went well! Wishing you a speedy recovery! x

  • Thank you :-) x

  • Hi alicjia congrats on new lease of life 

    What is hht ?

    I have pbc an autoimmune l.disease so v.interested to read your story.how old are you..

    Im 52  from south west and under queem elizabeths.im presently borderline asessment for transplant  have had tjis for 17 years amd was pregmamt at  time also 3 others so unusual in that sense .i wlsh you all.good wishes for a speedy revovery.did you get to find out  what sort of donor it was.... or is that classified ..must be wierd to even think about it.!!!! Cazer.xx

  • Cazer HHT is is a genetic disorder that leads to abnormal blood vessel formation, in Alicja's case her liver, lungs and possibly heart are all affected, so the liver transplant i think was the most urgent.

    She is young with a newborn baby, it was this second pregnancy that triggered the major problem with her liver.

  • Started to reply yesterday but phone went flat.its scary isnt it what these hormones can do to us.mine was the 4th pregnancy  and glandilar fever that kicked the pbc on drastically.i had my son 5 weeks early as they werent sure if he would survive or me for that matter.

    I feel for alicia as it was so hard bringing up our lot but its also amazing how children can make you focus on the most important things...my littlest is now 17 and has only known me unwell.for his sake i would love for him to have me well for just a bit.

    But despite all that im very proud  of the way our kids have turned out and having a sickly mum has given them a different perspective on life.one is a physio and has a good empathy for her patients.the eldest an i.t.buff taking lectures at a uni and the 3rd  down farmer/land worker..never without a job from 13 yrs old.sorry i waffle.give alicia all my best and crossed fingers she continues to strengthen...her little ones will love  her dodgy bits or not.we had to have childminders/homehelp as i was so weak i couldnt even lift the baby despite the fact he was 4lb6oz.

    Did u say youve had a transplant bolly? Im sure youve said but brain bit mushy.x

    Best wishes cazer.x

  • Cazer I'm sure Alicja will receive your best wishes direct from you via here, as she started this thread herself, and is hopefully able to read the replies.

    No i haven't had a transplant.  I do have cirrhosis but when it was assessed 6 years ago it was compensated, so i hope it still is.  I have autoimmune hepatitis which was diagnosed just after surgery for Liver Cancer HCC 5 and half years ago, and i have chronic Hepatitis B which caused the liver cancer.  Ive been HBV positive for nearly 40 years.

  • I hope you keep well enough  to have some energy.my pbc is no longer stable ukeld 51 3 mth checks albumin lowering slowly bilirubin slowly rising.am i right in thinking  albumin is fairly inportant....just learning  this stuff!

    Glad your liver cancer is staying at bay.cazer.xx

  • I'm glad the cancer has stayed away too! There have been discussions on the Autoimmune facebok page about exercise, and how we can't imagine how it could possibly benefit. How on earth can someone tired all the time and aching all get any better with exercise? 

    But it does. Some have started swimming, or dancing, or cycling, or going to the gym, or just regular walking. ... or jogging.... And are then amazed how much better they feel. I've been volunteer dog walking for a year and a half, even through "flares" and feeling rubbish I still do at least 2 hours a week. Im fairly sure it's helping me stay as fit as possible.

  • Sorry bolly for the ridiculous understatement about the cancer talking about me stateing the obvious.

    I must admit i cant do regular exercise but do walk whenever i can...some days its not at all others its up the road and back or a potter in the garden

    The difficulty i find is that the more i do the worse the nausea is then i cant face anything to eat or eat and im sick.ive had a patch for a good few years where i could pace it just right to do a  bit but also not suffer too badly with nausea or sickness but the last week or 2 its been much worse to the point where  i do the tiniest thing and i feel pretty dreadful...and the more i do the worse it gets

    I dont mean to moan..

    Had more bld tests today so will know if things are getting worse

    Of course the nausea may pass

    Do you happen to kmow if clotting factor changes quickly or is it a slow change.i know some things take longer to build up.thanks.

    Cazer.x

  • Seen all the replies with Bolly so you already know a little bit. HHT stands for hereditary heamrragic telangiectasia, bit of a mouthful and some gps haven't even heard of it! It varies in severity and I guess I was unlucky I got the faulty blood vessels in my lungs and liver. It's very common to have nosebleeds. I have about 2 or 3 a day.

    I'm sorry to read you've been so unwell for such a long time :-( It sounds like you've done amazing raising your children though. 

    I've barely seen the kids since being in hospital, its not the way I wanted them to see me anyway, I did have to explain to my 7 year old that mummy was getting a new liver as mine was poorly and that was pretty difficult to not crack, but she took it really well and I let her ask the questions so she felt more at ease. 

    They have been quite cagy about the donor. I was warned they found an sti but wasn't able to tell if it was active or dormant before the transplant could take place. I knew it wasn't this hospital but somewhere fairly local and they referred as 'he'. I think when I go home I can find out more and write a letter the co ordinator can pass on to the family. I can not thank them enough for the lease of life and second chance the donor has given me.

    It's a strange feeling, and I feel sad for the donor and their family but I need to remember I wasn't the one who caused their death and this was their final wish being fulfilled. I suppose once you are gone you do not need your organs, mine are all useless or I would donate! They also tell you if the donor was braindead or if it was cardiac arrest. Both are supposed to be on par these days though. Xx

  • Congrats alicia sounds loke you are doing brilliantly well done

    I understand what you mean about not letting the kids see you poorly.i was as honest as i could be with them without trying to scare them!

    My eldest  was 10 when i was in and out of hosp  in the beginning  and asked about txp as it had been talked about as they didnt know if my liver would calm down at all.

    He said...mum what happens if your liver stops working..i explained as much as i knew he then wanted to know what happened if that one didnt work!!!

    I started to say well they will re do  it if needed.he stopped gave me a very knowing look and walked off ..it is one of those moments i dont think i will ever forget.

    Children are so muxh cleverer than we give them credit ...he had figured it all out and understood that i was not immortal..but weve always said you could get run over by a bus have a plane fall on you...sp it wasnt worth worrying about.

    They will love you warts scars and all.you will soon b just mum again with no allowances for feeling rough.my 17 is now mega stroppy...hormones!!! And begrudgingly does the dishwasher but thats reassuring as he feels comfortable with me.

    When you dont feel you are too scary looking  for them to them to see you let them visit maybe a book or treat as a distraction from the wires etc and a gentle hug just to know you are there.sometimes the anxiety of not seeing you is worse than seeing you looking rough.

  • I know i havent been through the txp yet but do understand having babies/small children whilst ill.

    We didnt have relations who could help so i had  to fight with social services for some homehelp time as my husband worked full time.

    On a funnier note the son who was 3 when i was first really ill saw meat in the butchers....and said mummy ive got my pocket money i will buy you a new liver!!

    Dont you just love th

    em !!!  I wish you so much good luck and hope that you get some sort of decent quality of health/life to enjoy your little ones.love cazer

    Xxxx

  • Congrats on a successful outcome & well done you for posting so soon.

  • Congratulations on your transplant and yes there will always be a few small issues but you will overcome them. I wish you a speedy recovery and the best of health for the future.

  • Woohoooo! Congratulations Alicja. I am so happy for your new lease of life. I hope here onwards you'll be healthy and happy.

    Believe me you're doing brilliantly. I was sedated for a few days and eventually when I came round, I was so confused with brain fog. I didn't manage to get my phone back until after a week and even then I wasn't able to type much and I remember deleting contacts from my phone. I kept pressing delete and I'm not even sure why! 

    You're doing brilliantly and hoping you'll be on the ward soon. You'll get small glitches but you're in a brilliant place. And I know it hurts like HELL!

    Congratulations lovely xxx

  • Thank you :-) I had the brain fog last year and it was awlful. I felt trapped in my own head like there were doors in my brain that wouldn't open. For example I was told to write my daughters name... I thought why are the doctors patronising me... then when I came to spell the name I just couldn't think of the letters! My hands so jittery too. Xx

  • How are you doing? I know it is a horrible thing to go through this brain fog. Are you still in hospital? How long have you been in hospital? Also what about your other organs. Are they OK? Wishing you the best x

  • Still in hospital, been in Newcastle since January but my hospital journey began in Manchester mid October. They decided that my lungs and heart were bad but not bad enough for transplant. I had a procedure on my lungs to embolise the largest AVMs, and my heart has improved naturally since the liver transplant (as my heart was over compensating for my liver as the blood was taking shortcuts in the liver AVMs). How are you doing? Xx

  • I'm so glad to hear that. Yes when one organ starts having to work hard then the others start also working harder. I'm so glad you needed just the liver transplant. One transplant is enough to cope with. You've become a permanent resident at the hospital. I bet you're desperate to get home. How soon before you can go home? Also how often do your family and children visit you? I know you're far away from home.

    I'm good thanks. Just getting on and this weather is just beautiful. I missed the whole of spring last year by being in hospital. So I'm loving it. You will get to enjoy all of this very very soon.

    X

  • Reminds me of November 2014 no phone signal at freeman ICU (better on ward 12)

    CONGRATULATIONS!!  the big step is done! now the recovery... wish you well on this stage which is so varied, so many different hurdles to jump and some just run by like there is no problem, I hope you are one of those! my recovery has been not without issues, but pretty good considering the mammouth operation.... the team up there are wonderful. (as I am sure they are at other centres) I was just up there 2 days ago for a 3 monthly check, (I live in North Wales) all looking good for me.

    I was not as fast as you (6 months) but quite quick, had PBC (unknown to me, 18 months from knowing anything at all wrong with me to transplant,) a wild 18 months, your 6 months is crazy, a real whirlwind experience, probably better quick than having too long to contemplate the ordeal?

    Your spelling is better than mine! (I experience some memory holes and processing slowness which may yet clear ) I was rather struggling pre TX with memory and cognative... did you?

    now its time for you to rest, recover, feel happy and look forward to the rest of your life.

    I wish you good health!

    every liver journey is individual, good luck with yours..

  • Yep ward 12 has much better signal. I'm having a few issues but nothing major. Liver biopsy yesterday showed no rejection as they were worried as my bloods went a little funky the other day.

    18 months still quick. Whilst I've been here I've heard and seen all sorts... to people suddenly getting ill in days and being an emergency to people being on the list for years.

    The people waiting years definitely have more time to worry and have restrictions on their life as they need to be ready for that call, only upside is the liver might be better suited as more tests have done than those who are emergency.

    It also helped I was given one choice when signing the consent form... 90 percent chance living past a year with transplant or near 0 percent without. 

    I feel lucky as I had a great surgeon too, the one I wanted in fact!

    I think all the drugs affect cognitive abilities. First thing I apparently thought waking up is that I was everyone was trying to murder me..  then I was convinced we were floating in an air balloon. X

  • Ward 12 rocks! Have spent a few weeks there pre and post transplant. 

    In ICU I saw spiders in rubber webs, small insects crawling on every surface, my wife conniving with the doctors to have me sectioned, I packed my bags and left my room as I realized I was in a war zone and needed to escape, tell me about it! Kept me out of mischief Not! 

    Hope your journey continues upwards, enjoy! 

    Charlie

  • Fab news.  It's been such a long time coming for you and you've been to hell and back, but here's to your new gift of life and thank you so much for finding the time and energy not only to post on here but to offer support to others so soon after your major surgery.

    x

  • Thanks for replies.just realised why ive been.getting loads of messages from liver foundation etc..ha ha...have now switched off stuff thats not relevant 

    Bolly do you know how i change the head symbol?

     Bit cheeky of me  to ask but thought you might know?

  • I can't remember how I changed my profile pic, but if you click on "Help" at the top of the home page it goes to a page where there is an option "Manage/edit my profile" which has a long list of instructions. 

    Hope that helps.

  • Sorry I haven't been great support as I should of replied much sooner so feel abit unworthy of that comment!! Thank you though. X

  • Glad your okay and all went well continue to stay healthy good luck.  Annette

  • Best wishes Alicja. I hope all goes perfect for you. Keeping you in my prayers😊

  • 👍🏼 So pleased all went well and you're back in the land of the living, congratulations you seem a positive determined person great qualities for getting better. 😃 X

  • What a lovely uplifting post Alicja, and so soon after your transplant,  'bon santé as we say over over here. I hope your recovery continues well and speedily for you. x 

  • Absolutely fantastic news😁. Thank you so much for letting us know how you are doing. I have been thinking of you since your last post and I'm sure many others have too.

    You will probably be on the ward now, pressing that morphine button like crazy (watch out for them hallucinations).

    You may find some difficult times ahead as the road to recovery is a long and rocky one but don't forget that there are many people to help you along, and you won't be alone on your journey. The lovely people on here are very knowledgeable (from experience),

    I was 9 months from diagnosis (variceal bleed) to transplant. Now 3 months later, and a year since finding out that I had a serious problem, I am improving every day.

    Please do keep us all posted, you're part of the family now.

    Mike.xx

  • Definitely had crazy dreams in ICU! On mst and sevradol (for boast) for pain now. I was not happy when they took the fentenol away! 

    Good to hear you had a positive experience too, although there is the pain, plus other quirks to handle! Xx

  • Thank you for all the kind words. Just a little update; still in hospital but on the main liver surgical ward. Have blood clot in my right kidney... hurts muchos but they say will heal in time and nothing they can really do. Staples out 3 days ago and my wound decided to burst open today at the chest so it looks infected. Not happy about this but need to wait for swab results as its the weekend and no one to look at it then decide on antibiotics :-( 

    Bit swollen round the belly still, but my mobility and energy conpared to before the transplant is amazing. Plus I have an appetite again! My heart is stronger, lower heart rate and higher blood pressure. Oxygen still plays up but nothing can be perfect. Biopsy shows no rejection. My jaundice is gone!! :-)

    Most the pain is the wound and kidney, but can feel the healing inside too. 

    Hoping in a week or 2 for discharge. I'm also lucky as my partner has taken time off work to stay at the liver north flat (can't thank the charity enough) and come and be my assistant nurse, he's been wonderful at keeping me positive and doing all the little things like getting the sterile irrigation water I now must drink, getting me to walk round the hospital and helping with the shower etc.. makes a big difference than being alone or just medical people!

    HHT still a pain as nosebleeds 2/3 times a day but more a nuisance than anything else, well unless they make me anemic again. Laser treatment is what I need but ENT here isn't being very helpful with it! 

     Xx

  • Oh you poor love..that sounds yuk with the wound! After such a big procceedure you could do with an easier trip.hope u get antibios soon.xxx

  • Great to get an update.  Baby steps.  Good luck.

  • fantastic news pretty lady. So pleased for you heal well xxxx

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