Liver transplant: Hi! I have had PBC since... - PBC Foundation

PBC Foundation

8,308 members7,028 posts

Liver transplant

Kulaloke
Kulaloke

Hi! I have had PBC since Dec. 2017 I was diagnose with stage 4. I have been on Ursodiol. But Now for some reason it has stop working my levels doubled and so he tested again three weeks later and they climbed up again. So the doctor said it is time to do the paper work for a transplant. My question is How long are you in the hospital for? And what is the recovery time? And will I get rid of my yellow skin and eyes and feel better? I really don't know what to expect. Before I got this I had lots of energy and was healthy. This year has been a very bad year for me. All kinds of medical problems came up.

Thanks and God Bless

31 Replies
oldestnewest

Hi, i had my transplant in 2015, I was in for ten days from the day of operation, I was in critical care for a few days, I didn't have the yellowing of the skin or eyes but I'm sure it will disappear after you have the operation. Good luck with your operation.

Thank You and God Bless Stay Safe

Hi Kulaloke , I had my transplant in November 2019 so at the end of this month I will be 1 yr post transplant & i am still healing . Everybody's journey after transplant is different , we all heal differently & to tell you what yr experience of it would be , would be wrong of me to do so , but yes yr yellow skin & eyes will return to normal , but not instantly , yr new liver has alot of work to do , yr body has alot of work to do , getting yr medication levels right takes time , it's the biggest operation anyone can have . The outside of yr body heals the fastest but the inside takes much much longer . I could tell you of my experience but would be unfair to do so ,it is very complicated, where do you live ? I live in the UK so if you live in a different part of the world it could be totally different to how the procedure , etc is done , if you live in the UK I can help , i can answer many questions & also we have an amazing group for both pre & post transplant patients where there is so much advice , support & guidance.

Don't hesitate to ask me questions if you think I can help . You have so much to take on board but I'm sure where ever you are every question you have will be answered honestly by yr liver team .

Take care

Kulaloke
Kulaloke in reply to vicary

Thank You that does help me just what you said. I live in the south east US. I hope and pray that you continue healing. Can ask how old you are I am 69 I will be 70 soon. I was healthy until I got this PBC in Dec. 2017. This seemed to be a very bad year for me. I told my husband to day I think I need new batteries. LOL The reason I said that was we had a Christmas windmill that was not working last year and I put in new batteries again and it is working. Last year I guess it just got tired even with new batteries. Well Thank You again

May God Bless and stay safe

vicary
vicary in reply to Kulaloke

Hi , I am 55 I was 45 when I was diagnosed , but they believe I'd probably had it for 20 yrs or more , which would explain the fatigue I've felt most of my adult life , I totally get where yr coming from with regards to batteries the tiredness is overwhelming & takes over yr life ! at present im waiting for an Iron infusion for some reason they have yet to discover my body isn't absorbing it so my energy levels are zero , but they are doing further investigations & I know they will get to the bottom of it , but looking forward to the infusion apparently I will feel like super woman - bring it on !!! you take good care of yr self , never ever be affraìd to ask questions , no matter how small or silly they may seem , it's yr body , you have to deal with it , you have the right to know everything & have it explained , before a transplant here you have to have a 2 day assessment , you meet every doc , surgeon , nurse etc you are told everything from thread to needle , you undergo many tests to deem you fit for the op , you ask any questions you want & are given the whole truth , only then is the full decision made to go ahead in both sides , this obvisiously is not the procedure if it's an emergency! I wish the best for you on yr journey . Always here if you need a chat .

God bless you too , keep safe xx

Kulaloke
Kulaloke in reply to vicary

Thank you I always had so much energy it is hard when I don't have none. I never was good about sitting still. I like to garden and believe it or not I liked to clean or at least I did. I always tell everybody I am woman I am clever and I am strong I can do anything I set my mind to do. I save stupid stuff but find uses for the stuff. I have worked three different jobs at a time. None paid much and some didn't pay anything but I was busy. So with no energy is hard and Christmas is my favorite time to decorate and bake.

Thank You Stay Safe and God Bless

vicary
vicary in reply to Kulaloke

I too was very much like you , I never stopped & also worked 3 jobs a day , baked , I was also a bit OCD when it came to cleaning , but it gradually got harder & harder , but the worst was to come for me , I got extreme piritius so although all I wanted to do was sleep all the time it became impossible esp the last 2yrs pre op the itch ruled my life & nearly drove me insane , I would scratch myself till I bled , I would use anything to scratch myself , my whole body burnt , wearing clothes was a nightmare , bathing was always in cool water , not any cream or meds helped , I was lucky if I slept 1-2 hrs a night , I was mentally & physically exhausted & hit an all time low , I had to leave my job could no longer function , I didn't want to die but I wanted to go to sleep & not wake up ( if that makes sense ) I wanted the pain to stop , my skin was like leather , black & blue , covered in scabs & sores the pain was immense! my docs & consultants where amazing they gave me all the help they could , I had a nasalbilliary drain put it to help draw out the bile & for a few months a got much relief but it blocks due to the bile being so thick & sticky so my symptoms returned with avengence , but not long after I got my call ! I know that my transplant saved my life in more ways than one , my quality of life was zero I just existed & although my journey since my Op has been up & down (this too is different for everyone ) I am now reaching 12 months post , went back to work 8 months post , I bake again , I clean again & apart from this covid I'm getting my life back ! I do still get tired but that's down to still healing inside , I know my limits but I am the happiest I've been in yrs , my donor is my hero and never far from my thoughts & although my yr Liverversary will be a mile stone for me I will not lose sight that for his family it isn't, I continue to heal for them they will always live with the pain of losing their loved one & I know I will have very mixed emotions that day , I was given an amazing gift from a selfless man god bless him & his family ❤

You are in my thoughts & I wish you every happiness for the future , stay safe , stay strong , we call ourselves liver warriors because we are fighters ! keep positive it is so powerful for the mind & body xx

Camp_Host
Camp_Host in reply to vicary

I’m at the end with the itching and lack of sleep as well. My doctor has prescribed Mirtazapine for bedtime (sleep) and Naltrexone for daytime (itch). I have only been on them for about a week. Only seeing a bit of relief. I am still only getting 2-3 hrs of sleep, have turned into an itching zombie during the day. Cry everyday as I am really trying to find the right fix. I will itch til I bleed. It is all so overwhelming. This has been my journey for the last couple years, finally at wits end.

My MELD score isn’t high enough (15) for a transplant but I do have a foot in the door when me and my doc need to start the process. I am also trying phototherapy which may have some relief from the itching and healing of the skin. Trying all these avenues just for SLEEP!

My question is to vicary, what was your MELD score when you got your transplant? How is the itch, sleep, and jaundice now after transplant? Do you find you have energy again? How long did it take you to feel somewhat “back to normal” after the surgery? I am thinking of all these avenues don’t work for me, I will be on the transplant list. I am 44 yrs old and was diagnosed with PBC in 2003, so this battle for me is about 17 yrs. Liver counts for me have been a roller coaster, bilirubin for the last few tests have decided to climb rather than come back down, which has caused my MELD score to go up. Just a little background on myself. Thanks for any feedback you can provide! 🙂

vicary
vicary in reply to Camp_Host

Hi sorry for my late reply , I didn't get chance to check in on here yesterday . may I start by saying I totally understand where yr going through at not for one minute do I underestimate it , my hear truly breaks for you !! I wish you had told me where you live , so all I can do is tell you how it was for me here in the UK. Like I said I did or tried everything they threw at me , creams , meds , UVB treatment , plasma exchange , a nasel billiary drain ! unfortunately I cannot tell you what my MELD score was or my bilirubin levels pre transplant , I'd got past that I could no longer function or think straight , I was literally a zombie! I do know my bilirubin was getting higher & higher & my skin was slightly changing colour but I wasn't quite yellow ! I will tell you that anything you are given or you try is a short term fix or will have no affect what so ever ! once the bile is in yr blood stream its irreversible, it just starts to crystallize which intensifies the itch , the liver cannot function as it should the bile ducts are knackered , the biggest relief I got was the nasel billiary drain , I had it in for over a yr but it was at its best for a good 4 mths , most can't cope with it I am the only one at my hospital who did cope & it was the best short period of time I had , I was put on the list 6mths after having the drain fitted there was nothing else they could try after that & my itch was getting worse & worse , I didn't want to die , but I didn't want to be here anymore , I couldn't take anymore , I didn't eat or sleep , had no social life , stopped working , my body burned & itched none stop I really thought I was going mad , I became an hermit & just cried or screamed in pain all the time , i was put under a psychiatrist they feared for my well being , well so did I ! but I have tbh I too was lucky I had an amazing consultant , he had me put on the list due to no quality of life , I told him that is an understatement he said in the liver field it's not taken lightly & means much more than it says ( it is also classed as extreme fear for someone's life ) he said you would have to have a transplant eventually as yr liver would start to fail , yr mental state & body can't wait that long I am bringing the process forward yr itch is excelling all the time .

I asked how long it would take for my itch to stop after , he Said instantly when you wake after yr op , did it I hear you ask... YES

A Liver transplant isn't taken lightly , it's the biggest op anyone can have , it's our biggest organ , I once said at least it's not a heart transplant , they laughed & said that's a walk in the park ! recovery isn't easy but is different for everyone , we all get setbacks but we call them blips , the aftercare is amazing , but you have to play yr part too , there are many restrictions , does & dont's , things you can eat things you can't, you are immunosuppressed for the rest of yr life (so you don't reject ) was it the hardest thing I've ever done , YES , am I fully healed after my op , NO it's a long process but do I have my life back ? apart from covid out there YES I do , I feel alive again , I improve all the time , but I do still get a little scaredif I get an itch a normal itch like anyone does but that is understandable , I can by no means tell you how it will be for you , I did have alot of problems afterwards but I know many many who haven't, but every problem I've had they have sorted , my consultant was also my surgeon who did my Op I was down for 10 hrs , but this man & his colleagues have been with me every step of the way , still are , they are amazing , if anyone had told me that nearly 12 mths on I would feel like I do , I would never have believed them , straight after the op for me I regretted it I was so ill I am being honest with you but as time as gone on I now never doubt it did save my life , I get up everyday thankful for it , it changes you in a way I can't describe apart from I've got my life back & it's amazing !

I will never forget those dark years / days but they no longer rule or define my life , when things have got tough that's when I remind myself of them & it gives me the positivity & drive to keep fighting , because we my PBC friend are warriors , we fight always & with the amazing docs, amazing donors , the love & support of our family & Friends we are winning

sorry my post is so long , there is so much to say .

Never stop asking questions it's yr body , you have a right to know !

This is part of my story , all our stories are different , our journeys are different , but I'm here if I can help in any way , if yr in the UK I can help you more each country have there own process

Take care & stay safe Xx

Kulaloke
Kulaloke in reply to vicary

You have been very helpful. I just wish I could meet all of you. Who knows maybe someday. Reading all the things I have to do to get ready for the transplant and after makes me nervous. My Husband is going to be one of my caregiver and I know he loves me but we have been married for 50 yrs. and I have always did everything and was okay with that. He doesn't cook or clean and I am very picky about cleaning. I think because of the covid19 makes all this worse or more scary. My second caregiver was supposed to be my daughter but I am not sure now. My daughter and son-in-law had just moved here and she was not happy with the covid19 cause she wanted to ride their motorcycle in the mountains. So now they go about two or three times a week with a friends they just met on the motorcycle and that is great but they don't wear mask or social distance. I realize they are okay when they are riding but when they stop they all sit together in a group and some times there is about 30 or more of them or they eat in a restaurant. She is one that has never believed the the covid19 was as bad as the media was saying. But I have to have so many vaccines to get ready for this and I will be at such high risk I am scared. We canceled our Thanksgiving because we would have 17 people at the house for different states. My Great grandson was exposed and he tested negative but the covid19 seems to change or just maybe they are finding out more but here and all over this country it is getting worse. I am sorry to dump this on you so it is okay if you don't want to read all this. I am a person that does not like to hurt any ones feelings like I said before I am the caregiver not the patient. If I was healthy I would love to go help out with some of these poor covid19 people. But I can't. Again Thank you Stay healthy and Stay Safe. I am sending you a virtual Hug. My God Bless

Camp_Host
Camp_Host in reply to Kulaloke

We have cancelled Thanksgiving and Christmas with my family and in-laws. Postponing it for summer as we are all avid campers and can have a safe celebration then. Call it Christmas in July if you will 🙂. Something to look forward to I guess. As for turkey dinner, we will only be having our daughter (that’s in college) and her boyfriend home. Unfortunately both of them have already got COVID a few months back—thank goodness both are healthy again. Not the safest avenue to take but this is her home. My advice with where your health is and preparing for the transplant, I would have that small dinner at home. The rest of your family should understand and be there to support your decision to not gather. Hard decision for a lot of families out there.—but in the end, you have to do what’s best and safe for YOU and your family.

Kulaloke
Kulaloke in reply to Camp_Host

Yes they understood what is bad we have a new Great Granddaughter she will 8 months old. And I will miss seeing here we also have 5 other Great Grandkids from ages 13 to 8 months and This has always been my favorite time. Well you take Care stay safe

vicary
vicary in reply to Kulaloke

Please don't ever apologise , I totally understand everything yr saying & feeling , I too like you do everything for my partner & I keep a very clean home , I like things done just so . I worried how he would cope , but I promise you they can do much more than we give them credit for , he won't starve & he will be more than capable of do some cleaning , maybe not to yr standard but enough to keep on top of things I'm sure , I have to be honest with you after yr op all that yr worried about now won't matter a jot to you , yr outlook on life will be totally different , all you will be capable of doing or want to do is concentrate on yr recovery , those things that are huge to you now will become minor & rightly so , you will be yr priority .

It's hard to listen to how yr daughter is treating covid , unfortunately the younger generations don't take it seriously enough ! we have had simler problems here but we are on national lockdown in the UK again , im sure her attitude will change once you go on the list & esp once you have the op ! it is hard for family & Friends to grasp the enormity of a transplant but they do come down to earth with a bang after ! I don't want to go into too much detail about mine , but let's just say I had a few problems after & it scared the living daylights out of mine ( please note this is by no means the case for most , I was just unfortunate that a drain snapped off inside me when they tried to remove it thus resulting in a second op 1 wk later , a bit too much for my body to cope with at the time , but I was in excellent hands )

when I was allowed home I wasn't able to walk very well & still had alot of problems but I fought to go home , I had a daily nurse , my family & Friends where amazing god love them all & I wasn't allowed out apart from my trips to liver clinic , I got home 4 days before Christmas 2019 , by the time I was able to do little walks out covid hit , so I've been locked down 95% of this yr !!! the 1st 3 mths of covid where harendous our whole country went on lockdown ! everything closed apart from essential shops etc & only key workers worked , no pubs , restaurants gyms etc where open , you could go for a 20 min walk but only with someone from yr own household , no cars on the roads apart from key workers , we couldn't see anyone , my partner is a key worker so had to work , I cried so much it wasn't true , I thought I would go mad ! but I survived , I used it to my advantage & concentrated on getting well , I got into a new routine because even the every day tasks like bathing had to be planned & was hard work , I bled Netflix dry , I read , I did jigsaws , my family set up a zoom quiz for every Friday night , it just becomes a new way of living .

Then our government decided to start unlocking us due to covid dropping considerably .

By the summer , I was starting to do more & more , baking , cooking & cleaning but you still tire easierly so it has to be done in moderation.

Un fortunately the unlocking was a a bit too soon , so here we are in lockdown again , masks are the law here & you can be fined for not wearing them & social gatherings are banned the fine for those are £ 10, 000 pounds , it's not as big a lockdown as the 1st but all none essential places are closed again & you can't mix with anyone outside yr household , but most are still at work & schools are still open unlike last time & Christmas will be very different for us all this yr , we have covid drop in testing centres everywhere , you just ring to say yr coming for a test & get yr results less than an hr later , if positive yr household isisolated for two wks & anyone you've been in contact with is informed & they have to isolate for 2 wks also because people are still working so people are still in contact with others even though there are strict covid rules at work & social distancing it still has to be done ! so here I am again on my own , but it's fine , I'm alive & kicking . I returned to work in July of this yr , I had to change my job I worked in a pharmacy for 10 yrs but I'm not capable of being on my feet for 9 hrs a day yet & I felt it too great a risk & as it turns out I was right because anyone immunosuppressed aren't allowed to go out to work , they either work from home or they are fuloughed by the government

But I was lucky enough to get a job working from home I'm now a PA for a Stair lift company & I love it , I only work 5 hrs a day & it's enough , we can & do adapt , we have survived horrendous wars & many pandemics not without massive consequences , loss of lives etc , we will survive this , we all must do what is right & safe for ourselves & others , where there is a will there is a way , hopefully yr new president will make changes , but the bottom line is we have to take responsibility for our own lives our governments can't fix it all !

So you keep safe , it is a long journey & will be very different from mine , but you will come out the other side , I had so many hopes & dreams for after my op & yes they are on hold but they will happen , I have no doubt in that they are just on hold right now it has taken time but I have excepted its the way it is right now ... but ask me if im happy , my answer is is a big fat YES , my Liver is doing great , my health is improving all the time , im back at work , I have purpose , I have very little pain, I don't itch , I sleep , i have so much love in my life , I have so much to look forward too , I'm alive , I'm thankful for everything I've got , I'm proud of myself for everything I've endured and come out the other side , for me covid is just another blip that by keeping safe I will get through too , I haven't come this far to risk it all with covid .

So you keep safe & however yr journey is you can do this , it will surprise you how strong you really are , the bodies fight for life is something to be reckoned with its amazing what the power of yr mind can do , fight you have to & fight you will & it pats dividends .

I too wish we could meet & I wish there was some way you could message me privately without having to give my details on here , because although yr journey will be different to mine , I would like to support you in anyway I can esp yr down days I know only too well what they are like , we have a pre op post Op large group in the UK & it's amazing the advice & the support is outstanding nothing is too little & there is always someone who as experienced something you have from probs with meds , diet , pain , bad days good days , anything , so I hope you too can find a group like that too where you are , but I am always here regardless .

keep safe & God bless xx

Kulaloke
Kulaloke in reply to vicary

Thank You Yesterday I felt good so I made 5 Pumpkin Rolls which was a little too much on my feet but I enjoyed it I am very blessed that I don't have the pain or itching I don't sleep well but I think it is because I have too much on my mind. I guess what bothers me is I don't like to being put under because I don't have control of me. That is one reason I never liked to drink besides i don't really like the taste of most drinks. And I can only drink so much and can't drink anymore and that includes water or any liquid. LOLI feel sorry for all of you that have so much pain and discomfort with this. My Prayers are with you. May God Bless and keep you safe.

vicary
vicary in reply to Kulaloke

Good to hear you had a good day , but don't overdo it !

keep safe & keep well

God bless you too xx

Kulaloke
Kulaloke in reply to vicary

Did your INR levels go up where your blood keeps get thinner before your liver transplant? My nose bleeds and some times I spit up blood. I think my MELD levels are getting higher. I get so many blood test I hate to go get more both arms are bruised. My legs are swollen so today I can not do anything but be sit with my feet up. If I wear compression socks which I put on the other day until the swelling so bad above the socks it went up into my liver area and was making me weak and sick. After I took them off and ate some yogurt I started feeling better that was the day I made the pumpkin rolls. Well Thank you again for being my sounding board. And a friend.

My God Bless and keep you healthy XX

vicary
vicary in reply to Kulaloke

TBH, I cannot tell you want levels my bloods reached pre op , I had got to the point I didn't function well at all , I couldn't think straight . But I never had nose bleeds or spat up blood , but I know of people who have ! A lady in the opposite bed to me had another condition that caused her to vomit blood in a massive way , it was related to the liver was called something else unfortunately I don't recall what it was I was very much out of it after my op but I know it was also a problem with her blood too , once they would have it under control she was going on the transplant list , sorry I can't help further with that .

I don't mind being yr sound board anytime my friend .

God bless & keep safe ❤

Kulaloke
Kulaloke in reply to vicary

I guess then my nose bleeds all have to do with my heart. Just some doctors say that part of all my problems are tied in with the PBC. I am different. LOL I am very blessed that I don't have a lot of others with PBC. That is why they had a hard time trying to find out what w as wrong with me. I did not follow the PBC problems. I had no abdominal pain I did not itch my only thing I was very yellow which my husband and I never noticed. LOL I always had trouble with my feet and legs swelling. I still don't think I have pain to do to the PBC Yes sometimes I itch a lot but I just put cool water on me and it will stop. Now though my skin is so thin I bleed easier. I have always bruised easy. They asked me well when you lost a lot of weight was you not concerned. Are you crazy I new I was way over weight so when I lost it I thought that was great. LOL After all I wasn't eating much and working doing a lot of things.

Thanks again if I ever talk too much or repeat too much just let me know I have the gift of gab.

God Bless and Keep Safe and Stay well your Friend.

vicary
vicary in reply to Kulaloke

Hey talk away , doesn't bother me , I'm sure you've noticed I can talk too 😂😂 Not sure how it works over there but here at around 45- 50 yrs old we get called in by our GPS for a health check , so yr bloods are taken & they check how organs are doing , chlorestrol levels , diabetes etc , my Liver reading was a bit high but so was my chlorestrol readings , unfortunately PBC can give a false chlorestrol result , but I was treated for this & put on statins of which I had terrible side affects ! so another GP wanted to test my Liver bloods again which came back higher & she referred me to a liver consultant , who was also a PBC specialist , I had an upper endoscopy , which showed PBC & Acid reflux , so I then had a biopsy which of course confirmed PBC , I would never have known , I had no symptoms I just felt tired alot for yrs but put it down to working & raising a family ! how wrong could I be 🙄 I had no further symptoms for almost 5 yrs but things changed & when they did it changed dramatically & quick . I'm so glad you can control yr itch & I hope it remains that way for you , unfortunately for me that wasn't to be the case it excelled so quickly , my feet & hands where always swollen , I looked like I had shrek feet lol , I had Arthritis pre PBC but it's now osteoarthritis & I have yearly dexo scans to see how much deteriation has occurred to watch for osteoporosis, all are connected to PBC .

PBC is still classed as pretty rare & connected to so many other autoimmune diseases it can get easily missed until people become yellow or develope extreme pirituis, they are learning new things about it all the time , there as you know is no cure for it & a transplant doesn't eradicate it either , I will always have PBC but it's been sent back to the beginning ( that's the only way I can describe it ) & they have good results to show that going back on Urso after transplant helps protect the graft from PBC !

I will be on anti - rejection drugs for the rest of my life & be under a liver consultant too I'm totally fine with that it is what it is , I've had & get the best care & have the most amazing Liver clinic , consultants & Co-ordinators going , our NHS is amazing god bless them all , I'm one lucky , lucky lady ❤

You keep safe & well my fellow liver warrior & friend xx

Kulaloke
Kulaloke in reply to vicary

It seems so funny that the two of us is about the same your PBC a little more advance but we seem to be the same maybe we are related LOL No one in my family has ever had any liver problems just me kidney, and cancer yes but no liver.

Thank you May God Bless keep safe your friend or family liver warrior xx

vicary
vicary in reply to Kulaloke

Yr not kidding lol !! no problems with livers in my family either , like you kidneys & cancer . Never ever heard of PBC before, but not much I don't know about it now 😁

We just gotta keep kickingit up its butt & never stop fighting .

warriors always !!!

God bless you too Friend & warrior xx

Kulaloke
Kulaloke in reply to vicary

How true

God Bless, Stay Safe Friend and Warrior xx

Camp_Host
Camp_Host in reply to vicary

Thanks for replying. I live in the US. Yes COVID has made everything challenging for me as well. I have been working from home since March and to tell you the truth, that’s when everything started going downhill with my health. I am grateful I am home though. I had a egd in Sept in which revealed I have 4 esophageal varices. Thank goodness they are not bleeding. Doc banded those and I go back in Dec to have another egd to check and make sure the banding has held up. I will continue to have egd every 3 months going forward as we are not wanting any bleeding. That would be very serious and could literally cause me to bleed to death. If you aren’t familiar with this, this merely means my body is trying to find other avenues for blood flow since my liver is not working properly—this is one avenue your body will resort to when it can’t go the normal way.

I have also developed an enlarged spleen that I have had for quite some time now due to the blockage. So in reality my liver is really starting to shut down but not enough for my MELD score to be at transplant level. As I say, my plumbing is backing up because it’s clogged. That’s pretty much what it is. Unfortunately the itching, the lack of sleep, the yellowing, all show on the outside due to these inside issues.

I really appreciate all your words and advice. I may reach out to you from time to time on questions about your transplant. I have my first telehealth visit with a hepotologist Monday. So far I have just been working with a Gastroenterologist and a dermatologist for the skin issues I have.

Take care! Be safe! 🌸

Kulaloke
Kulaloke in reply to Camp_Host

By all means you can talk to me anytime I don't know how much help I can be but sometimes it just helps to vent. I wish you all the best. Prayers for you My God Bless

Stay Safe

vicary
vicary in reply to Camp_Host

Yes I've heard of it , but I haven't experienced it thankfully , but know fellow liver warriors that have & do , PBC is the total pits !! , I also have sjogrens syndrome , boarder line thyroid, anaemia, Vit D & calcium deficiency, osteoarthritis, been border diabetes, I'm know awaiting an Iron infusion , bowel tests & sickle cell tests are related to PBC , a transplant doesn't cure PBC I'm sure yr well aware there isn't a cure , but it pushes it back & hopefully be many yrs before it developed enough to start causing damage to my new liver .

In the UK they put you back on Urso ( I was none responsive pre op ) but they had been good results to show it helps safe guard the new liver graft from PBC.

Most of the above problems can & will be rectified just covid has slowed down the process , I don't think I have sickle cell but it's a precaution test due to my iron problems & the link to PBC.

So glad to hear that you now have an hepotologist on the case , they are the ones that are in the know , they are the ones that decide when you need yr transplant regardless of of how high yr figures , that's how it is in the UK anyway , you will be under them for life now , the rest listen to them , they are the experts , no one messes with them here , what they say goes ! when we enter that clinic here there are 3 groups , pre clinic , post clinic & a yr after Op long term post clinic , they don't just look after yr liver they look after you mentally & emotionally, hope all goes well .

call on me anytime , remember yr never alone .

Stay safe Xx

Kulaloke
Kulaloke in reply to Camp_Host

Hi! My I ask where you live. I have been very lucky I only itch some time but it never last long I just have to watch because I will bleed. It helped me with cool or cold water and I don't like cold. But I am on a blood thinner so I bleed out very easy. I am 69yrs I was diagnose with PBC just before I turned 67yrs. And when I went to the hospital I had no pain I was just very yellow. They poked and pushed on me took blood did other test found a few very small gall stones and then I guess the blood showed maybe the PBC and then a couple of weeks later I had to have a biopsy on my liver and discovered I had stage 4. And my numbers where high so they told me to go to Nashville for a possible transplant. But put me on Ursodiol and my levels dropped. But this year they started climbing if fact my Bilirubin doubled and is still climbing fast. Right now my MELD score is 29. It sounds like the Medicine is working and that is great. I feel sorry for your other issues and hope they get better don't give up your faith. I will pray for you too. I don't sleep much or good so I take short naps lack of energy is very hard for me. They said you need to walk and exercise which I do neither. I know shame on me. Good Bless You Stay Safe

Camp_Host
Camp_Host in reply to Kulaloke

Hello, I live in the US. Your MELD score is definitely at transplant level. I am so sorry to see that you have only been aware of this disease for 2 yrs. Doesn’t give you much time to let it sink in and accept. I am assuming you had it prior but had no symptoms? Or maybe your progression was so fast? Still very sorry to see such a short time to deal with all this. I have known of mine for 17 yrs. Still remember that day back in 2003 when I went to the doc because I was itchy. I thought maybe hives or a reaction to some food, but never thought I would have walked out of that clinic with a diagnosis of PBC (didn’t even know what it was)—only being a young age of 27 at that time. Will never forget that day. I wish you best of luck with your transplant and as mentioned to vicary, I may reach out to you as well as I believe I will be in the same boat not too far behind you.

Take care and be safe! 🌺

hi! Kulaloke,

I had a transplant 6yrs ago and can say yellow eyes and skin disappeared a few weeks after transplant. I was due to leave hospital exactly 3 weeks after op., was doing well but got infections so spent in total, 8 weeks. Continued recovery at home and over the months slowly regained my strength. Doing Ok now and with continued care from King's hospital I'm enjoying life.

That's some of my experience Kulaloke but you will find with PBC we are all different. Unlike you I was diagnosed in 2001 and transplanted in 2014. Hopefully this helps you. All the best my friend and will do my best to answer any more questions.

Kulaloke
Kulaloke in reply to allotment

Thank You that was very helpful. I do have another question before your transplant was you really weak all the time? I seem to get dress and need to take a nap. My Bilirubin levels are climbing fast ever since the beginning of this year they have doubled. The meds was working great before but not now. I guess that is why he wants me to be on the list. I am waiting for a call from the doctor. Again Thanks and I pray you keep doing good. Prayers and My God Bless

Kulaloke,

After being diagnosed with PBC in 2001 I became tired and weaker slowly over some 13 years. Initially the tiredness was not too bad but in the last couple of years things got worse and the final year before transplant I was like you. So weak and virtually unable to do any physical activity. Wanted to sleep all the time.

One bit of advice I was given by my consultant, which I think was so important, was to try and keep myself as fit as possible. That was difficult being so weak but I was told it would help recovery. I am male and was 68 when transplanted.

Reading one of your other respondents, who also makes the point that we are all different with this disease and as vicary says your treatment advice could be different being as you live in the US.

Nearly forgot, yes my Bilirubin levels were high the month before my op.

All the best Kulaloke

Kulaloke
Kulaloke in reply to allotment

Thank You stay healthy and safe God Bless

You may also like...