I have lovely family and friends who are trying to support me the best they can but i still feel so lost and alone i was only diagnosed yesterday. I have no symptoms as yet. I just need to know more about it? think i am still in shock, I just want to live a long happy life and feel so down. I am scared and want to find people who have lived years with it and anyone who has pbc advice would be fab with diet etc. Help please thank you Donna x
I was Diagnosed with PBC yesterday. I have ... - PBC Foundation
I was Diagnosed with PBC yesterday. I have no symptoms as yet, Just want to know if anyone out there have lived a long life,i am so nervous
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donna30
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•
Hi
I was like you last yr, was diagnosed wi PBC.
Try the PBC Foundation
They are fantastic with advice and support. I have no symptoms at all.. I go for yearly check up to see my specialist , routine bloods and I am on ursofalk a am supposed to take 3 a day but I don't feel well taking 3 so I take 1 a day.
I did originally stop taking them as the way thy made me feel. I spoke to my consultant and he informed me I needed to take them as I had a liver biopsy and it confirmed that it was PBC.
So now I am ok with one tablet, a cant describe how it felt taking 3 tablets other than I felt ill.... Lol
But I felt so much better once I got I touch with the PBC Foundation.. Good luck
Jules
Hi Julie, I ave just joined the foundation and already finding it a great help. I think i have to now book an appointment with my doctor to start taking that medication so i will have to see how i get on. Glad you are feeling better just taking the 1 tablet. Thank you so much for taking the time to send me a message it is really good of you so pleased we have this site to get support. Thanks again and take care
• in reply todonna30
Hello Donna.
Found the second sentence about you 'thinking' you 'have to book an appointment' for your doctor to give you a script for urso a bit confusing. Sorry. When you were informed you got PBC were you told by a hospital consultant? Of had your own GP done an AMA/ANA blood test and informed you?
You state that you have no symptons as yet (you may never have any, some do not). Did you find out what your LFT bloods were? If they were normal it seems you may not receive urso as yet but have your bloods monitored at intervals to check them in case they start to elevate. Actually just read another reply you gave later on, sorry for missing that. So if you do have elevated LFTs then it is norm that one is started on urso if you have a positive diagnosis of PBC.
You can be asymptomatic as it is called with PBC as I was informed I probably was 'for a few years' prior to starting itching and very fatigued (2010) but you have that heads up with PBC which I do think is a bonus if y ou can call it that.
Apparently one with PBC can live their life out with it never progressing beyond a certain point and in some cases it can become to a sort of remissive state (that is it halts and may or may not restart) but any damage that was started won't be healed.
I think now you know you have to take even better care of yourself. If you did have the odd alcoholic drink, altho' no-one has told me since being informed I had abnormal LFTs that I shouldn't have the odd drink but from the first abnormal LFT for me I haven't had any alcohol since (I don't miss as never had much prior) and I think that in itself is common sense really. I'd also take extra care in what over-the-counter medications you might consider buying, if you can manage without I would. In my opinion the less strain on the liver now is by far the better thing.
Wish you well and please keep us all informed.
donna30• in reply to
Hi, I was told on my first appointment with my liver specialist (Consultant), In the appointment i was told she would leave me a while to get my head round it all. Then i presume i will be sent a letter or my GP will be in touch. I have no idea hence the 'think i have to book an appointment' Can i ask what you found confusing?sorry Should i call to sort an appointment or wait for them to contact me. I was only told the other day. Thanks for reply x
• in reply todonna30
I think I found it confusing due to when I was diagnosed it came via my GP. I had seen the hospital consultant end Oct 2010 and I failed to find the final blood test the GP had taken back in the August, I foolishly thought it was the AMA as I started to suspect myself I might have PBC. (I stumbled across PBC on the net and also read a bit in library text books whilst on-going bloods that kept leading to 'dead ends'. The final GP blood test I had prior to diagnosis was actually for copper (Wilsons Disease) I found when I went for my first hospital appt.)
When the hospital doctor said he was going to do a 'special blood test' that morning, I asked if it was antibodies to check for PBC. He said he wasn't aware I had heard of PBC and said he was plus others (the ANA shows for something else. MY ANA was negative, AMA positive).
He said the blood test would 'take awhile'. That 'awhile' was 6 weeks tho' left to my GP surgery, would have been 7 weeks as when I got the call from one of the receptionists, she said the GP wanted to see me to prescribe medication and then commenced to give me an appt for 5 days later with a weekend in-between. At that time I didn't want to wait that long as I did think would be urso. Asked her what meds it was and tho' she couldn't say everything (re diagnosis) she did try to pronounce urso. At that point when my husband heard me relay the pronunciation of urso and knew the appt date he took the phone off and said his piece and we got a pronto appt within the hour that evening.
The GP had received a letter from the hospital consultant and it was he who instructed the GP to write out prescription for urso.
Maybe it varies from health authority to health authority. I am presuming you are in the UK now. I don't know if anyone else on here has gone through a different route to being prescribed urso but I am certain if the hospital doctor thought at the time you should have urso she would probably have prescribed it as opposed to not doing at the time. All I can think of is that your bloods are currently of a stisfactory level and given you have no symptons of PBC maybe she might be holding off. Did she say you would go on urso?
Your GP might not yet have received any letter from the hospital - find it strange in the days of new technology now how doctors still relay typed letters about but a recent experience with my GP surgery dosn't surprise me at all! - so all I can say is if you are worried seek your GP advice. He/she will definitely receive some correspondence from the hospital doctor. I expect urso will be mentioned in that correspondence.
donna30• in reply to
Thanks for your reply, yes i am hoping my consultant will be writing to my GP, my consultant mentioned the urso and that i can have this. I am going to call the doctors 2mro and find out what is happening and what my bloods etc show. I will let you know thanks x
• in reply todonna30
Hello Donna.
Now I fully understand it all but I'd have thought the hospital consultant would have given you your first prescription for urso to have dispensed at the hospital pharmacy and then from then on the GP gives you the repeats.
I got my first one from the GP as I had the AMA test at the hospital and at the time hadn't got a return appt for the hospital so meanwhile whilst waiting for the new hospital appt the consultant wrote to the GP with diagnosis and instructions for the urso (as it goes off body weight).
But again if you have no symptons as I did and your consultant knows your blood results might not be deemed an urgent issue. Mine wasn't an urgent issue as with urso it's not known exactly how it works and I suppose for one deemed in 'early stages' (that I do not take any notice of) then I imagine a relatively short amount of time isn't going to make that much difference. I know it took quite awhile for the itching to start to subside somewhat. I went through a few nights without any and then managed 10 nights but since later last year I've not really had a night free of it. It is said that itching is of no indicator either, some itch, others do not.
donna30• in reply to
Hi,
Yes looking into i am thinking that maybe she should have done as well. Had a proper meltdown this last day or 2 (Almost like panic attack stage) i must have been in denial or something trying to be positive but its so hard am sure i will be fine though. I called the doctors they had received nothing, i then called my consultants secretary and she said she had not written my note out it was 'next on her list of things to do' this was 6 days after.....i asked her to get it sent to my doctor as i wanted to start on the medication as soon as possible. I will call my doctor to arrange appointment when i know they have had the details from my consultant. My bloods have gone up so worried about that too. My ALT was 121 my ALK was 654 hoping the medication will help lower this. I think every case is different thats for sure. Just want to get an appointment and talk things through. Thanks for reply x
• in reply todonna30
Hiya Donna.
Just got my blood print-outs to look up what mine were at diagnose back in 2010 to maybe give you a bit of an idea so you can perhaps feel a bit at ease before you get urso.
MY ALT was 176 and ALK (or ALP) was 614. These were taken the very day I had the AMA blood test and it was another 6 weeks before I started on urso as had that length of time to wait for the GP to receive the consultant's letter to then ask me to go in to get the script.
Now the interesting thing was from blood check Aug 2010 prior to going to the hospital (took 13 weeks for that first hospital appt to see consultant to take AMA test!) my ALT was 190 so as you'll see it naturally did come down a bit. My ALK (ALP) didn't tho', that was 603.
Do you know your GGT at all? Mine climbed during 2010 but funnily enough from Aug 2010 prior to AMA test it was 642 but by Nov 2010 when I had the AMA test prior to taking urso remember, it had fallen to 590.
I think if you avoid certain things now and take that bit more care, no alcohol if you do have the odd drink, try avoid certain food additives (I took even more care then), I do think it is possible to aid yourself meanwhile as it was only at that point in the 3 months before seeing the hospital consultant I noticed my bloods did improve of their own accord.
On urso there has been some improvement but my current ones taken this May after 2 and 1/2 years on urso are:- ALT at 73, ALK (ALP) at 280 and my GGT was 171. I noticed that back in May 2011 my ALK (ALP) was actually 278 so a bit less on urso for 6 months than it was currently. But I would make a bit of a wavy line if was to plot my figures on a graph.
ALT signals if there is a liver problem. GGT is a sign that there is presently some liver damage (but as we know the liver can repair itself so I expect that can fluctuate). Higher levels of ALP can indicate there is a liver disease.
Also please note that if you are another medication then that can also alter things as I expect with PBC so could the odd alcohol within a short time of a blood check.
donna30• in reply to
Thanks for the quick reply these are my results the last 4 blood tests:
Alk: Was 754-621-639-654
GGT:Was 50-440-403 then no reading for some reason
ALT: Was: 130-96-98-121
Really appreciate all your help. My friend is asking her friend angela who works as a nutritionist on harley street in london to very sick people if there is anything she recommends so i will put the info up if i here from her. I am going to the gym, and have changed my eating habits too. I havent had a drink for 8 weeks now but will have an odd glass on occasions with the girls just no rubbish.
The time inbetween all these blood tests was about 3 months at the beginning i was still going out with the girls and drinking too.
Thanks for your time x
Pookie18• in reply to
Sorry answering this as it is a reply to someone else. I have read a lot of your comments. Do you live in England. I was diagnosed with PBC in 2011 and also fatty liver. I had a biopsy and do recall a comment from you a while ago saying that biopsy wasn't normally done in UK. Please accept my apologies if this is incorrect. Since my diagnosis I only have a yearly blood test and am not on urso. Is this the norm as a lot of posts are saying that as soon as they have been told they are put on the meds. I am in Nottingham, is it different in parts of the country, or am I not getting what I need. I am 65, did not have any symptoms, do not see anyone, have no dealings with anyone and after reading posts am feeling a little neglected. How do I know if things are changing? I think in this situation I don't know if things that are wrong with me are related to PBC or not. I do have fatigue (it happens around 4-5.30pm most days, but others seem to be experiencing it early hours of morning. I am confused. Also getting a tingling itchy feeling odd days all over. Sorry for lengthily post. Thanks for any input.
I have just been diagnosed with pbc and live in Nottingham.
Hi Donna,
I was told by my specialist I had liver nodules throughout my liver he put me on 900mg of Ursofalk and I'm into my fourth week of taking the medication and I feel 100% better. I have joint pain and have been given a cortisone injection which has help TG. I have a very positive outlook and as with most PBC sufferers once you get your head around the diagnosis you realise most people go into remission and in a lot of cases the disease holts with Ursoflak. Get your doctor to send you to a specialist. I got a referral to the Alfred a very good public hospital and although my doctor thought it could be months to be seen the Gastro specialist had me in within two weeks and he is fantastic.
Stay positive Donna .
I used to struggle on 3 Ursofalk a day I felt like I had morning sickness! It took another 6 years after diagnosis for any progression then from stage 1 to stage 4 in 3 weeks. Not fun!
Make every day count while you can!
Hi Donna welcome to the site and fear not you can live a good long life with PBC in fact you are more likely to die at a ripe old age still with PBC than die from PBC. So do not worry there is lots of life after PBC. I was diagnosed in 2002 after suffering horrendous itch, joint pains and fatigue for a year. Many people have PBC and do not even have any symptoms and do not find out until very late in life that they have it. If you do not have any symptoms may I ask how did you get diagnosed with it? I would imagine that the fact you dont have any symptoms would mean you are at a very early stage of the disease which is good. Contact the PBC Fondation their link should be on here they are invaluable for info and support. Also you have all of us on here, as questions pop into your head post them and all will try to answer what they can answer from their own personal experiences. BFN Take care. x
This message has put my mind at ease more than you will know. Really appreciate you taking the time to comment. I actually had a lump in my breast which they found benign luckily but i then found a lump on my neck so went for it checking this has since been forgotton about after many blood tests high liver function tests were found. And it has pretty much all gone from there. Was such a shock but this has made me look at it in another light so thank you so much. I am sure i will have more questions along the way. What a great site this is. x Take Care
No problem many on here have helped me along the way over the last yr or so when I was at a very low point so I like to do the same when I can. Lovely photo of u and ur partner. If u click on my icon and others in here you can read our experiences on living with PBC lot of the posts are very positive and make you realise that life certainly does not end just because we have PBC in fact after I got my head around the diagnosis I was determined it would not rule my life. Hope you take the same attitude. Bfn. x
Hi Donna, as Litttlemo said you will have a long life. I could have had this disease for 20 + years for I saw elevations in my blood work since 1987 of GGT and by 93 the GGT and ALK was also elevated. I was finally diagnosed in 2003, even though I had had a biopsy in 97 and the doctor couldn't discern what it was. I didn't have symptoms, except occasionally unexplained fatigue. About 2yrs ago some itching started but has subsided for now. I have scans every year now, and so far, my liver looks normal. I have taken the ursodiol for 10 years now, and believe it slows down the progression. This group are very helpful with advice and answers! Welcome!
That is great to here thank you so much for your reply. I am pleased i have you all to talk too, it really has been such a help i know i am still in shock with it all as only diagnosed the other day but each reply is making me stronger and has given me a big kick up the backside to make the most of my life. I do have problems with my joints especially my back but have always had problems with my back and joints maybe i have had it longer too, i have joined the gym to get fit i will maybe do a yoga or pilates class to strengthen my core. Thank you once again it is a pleasure talking to everyone and appreciate each reply more than you can imagine. x
I read this and felt better. I was diagnosed on Saturday and have now got my meds a week later. I started to read and I think I am in the early stages as my ultrasounds etc were all clear.
A sudden wave of fear came over me as I read more and more.
This made me feel better. I want someone to talk to so I don't feel alone and frightened x
I started Urso August 2nd. Took 1 1/2 weeks & had to stop. So I've been waiting 3 weeks? for approval for Oclavia. I feel great but don't like being without meds. My ultrasound was Clear also, but Dr wants fibroscan to check ducts, as the ultrasound doesn't show inside the ducts. That will be September 14th. I'm anxious to have it done so I can know where I stand.
Hi Donna welcome to the site.My heart really goes out to you i was diagnosed a yr ago and like you i was in total shock,i felt like i had been handed a death sentence.I remember having the biggest panick attack that i had ever had the consultant got a phychitrist to me and i nearly got sectioned.I was in a very bad place for a while,i just shut my self away and was so depresed.Once you have got over the shock you will see things differently i cant believe how different i see things now dont get me wrong i still have ups and downs i think we all do but i now know that this disease is treatable and manegeable.I have spent the past yr changing my diet,no alcohol not that i drank much before but i have chose to stop and i also stoped smoking and i am now only using the Elights electric cigi.Yesterday i went to collect my blood results and could not believe my eyes,all my bloods are now in the normal range my ggt is 44 and my alkp is 126 and billirubin is 6,when i was diagnosed my ggt was 390 and my alkp was 279.I now know that this disease can be controled and evev thoe i still have some depression and anxiety i do honestly feel that we can all go on to lead as long a life as some one without pbc.You mentioned that you had a couple of lumps,were they lymp nodes as that is common with pbc i had one appear in my pancreas,i thought it was cancer but was told that it was part of pbc and that raised lymp nodes is common in patients with pbc.It is a strange disease i can hardly walk at times with joint and muscle pain and i do suffer alot with fatigue yet my bloods are fine.I hope this has helped,sorry to write an essay i just know how hard it is when first diagnosed,it will get easier,this a great site to be on and such lovely people.Take care and please dont worry.xx
Hi, yes i feel very up and down i have low points where i just breakdown then i look a these replys and feel better. I feel like i just cant catch my breathe at times and i am on a bit of an emotional roller-coaster but thanks to your replys it keeps me on track. I have joined the gym and am changing my eating habits . I struggle wit joint pains too especially my back i have maybe had this longer than i thought. I am trying to look on the positive side my emotions just come in waves. It is interesting to know the lumps maybe are to do with pbc. I think i need to book in with my doctor and get sorted with the medication. Its lovely to know what great support is on here thank u so much for taking the time to reply xx
Here's the link to the Facebook group
facebook.com/groups/1320493...
Tessa x
• in reply toTessa
Hi Tessa. I applied to join the Facebook group you posted the link for on Monday but still haven't had a reply. Any idea what's happened?
Hi Donna,
There is also a group on face book called PBCers UK which is wonderful. If you search the full name is PBCers UK (Primary Biliary Cirrhosis: one disease with many faces). Lots of members there are also members of the PBC foundation. It would be lovely to see you there.
Best wishes
Tessa
Dear Donna,
A lot of people have given you advice and shared their experiences with you. I would just add that I am 73 and lead a very active life. I take 3 Urso a day and forget about PBC. I have my check ups , take advice on board and eat sensibly. I know I am lucky but once I got over the shock of being told that I had this PBC I was determined that it would not ruin my life. I'm sure you will do the same.
Best wishes
Olwen
Yes so many people have helped me so far and would like to thank u too, each and every story is making me stronger. Can i ask when you was diagnosed? It is lovely to here you are living life to the full. I have just come back from the gym and i am really starting to eat healthy. Thank you for taking the time to write to me it means so much x
I was 60 when I was diagnosed. I was being checked for a heart murmur. I really believe that my mother had PBC, itchy skin , dry eyes and other odd things and she lived to 92!
Olwen
Sorry to hear about your diagnosis, I remember how scared I was 15 yrs ago when I found out! Everyone is different and their disease will progress at different rates. I've been told mine is slow progress. However it still affects my life. I had to retire early and there are things I can't do. But I try to turn it around and concentrate on the things I can do! Arm yourself with as much info and support you can find and things don't seem so scary! Most of all take care of yourself because to an outsider you'll appear healthy and fit! Xx
That is a great attitude to have i will take your advice and really get lots of information together and try look on the positive side of everything. I am already at the gym and thinking of doing some charity events that way i can get fit and raise money for pbc. Thank u for your time all the best to you xx
Not sure whether you got my last message as not used to this site but in case you didn't make sure you get the PBC DVD from livernorth. Take care x x
Hi, I have just read your message could not find the reply button. Your message brought tears to my eyes but for all the right reasons. Thank you so much for taking the time to write to me. I have gone and ordered the dvd straight away so that is great thank u for letting me know. xx Will reply further to your other message later xx
Sorry to hear about your diagnosis, I remember how scared I was 15 yrs ago when I found out! Everyone is different and their disease will progress at different rates. I've been told mine is slow progress. However it still affects my life. I had to retire early and there are things I can't do. But I try to turn it around and concentrate on the things I can do! Arm yourself with as much info and support you can find and things don't seem so scary! Most of all take care of yourself because to an outsider you'll appear healthy and fit! Xx
Dear Donna, Prayers for you, and everthing will be fine................have a good cry or scream or whatever to let it out, then let it go. Keep informed and keep the docs on their toes. I am 55 and was diagnosed 18 years ago. First year was an adjustment all the time, then pretty even keel, for the most part good. Although they have more knowledge than they did then, I am still learning things that when I look back explain alot of the way I felt and stuff.
I was stage 3 when diagnosed and just went into stage 4 about two years ago, pretty blessed I believe. There have been a few scary times over the past couple years, but I am still here and doing the best I can. I try not to let it consume me, which I think would be easy to succomb to self pity etc, but that is not who I am or want to become. I have six plus two children, and eleven plus two grandchildren. I certainly don't want them to feel sorry for me, I am very fortunate for soooo many reasons, one of them being able to tell you some of my story so maybe you won't be so afraid. When it happened to me there really wasn't alot out there for information or support, I was very happy my doctor was kind, patient and compassionate, he was the main person who got me through the initial shock, I was a single mom of six back then. Information is knowledge and I like to know all the things that may or may not happen, it is not something that ever really comes up in my day to day life except for my husband and my mom mostly always ask me how I am feeling............and I just say great
because it could be worse, I have been to the transplant team for appt's and I saw people in more need than me. One way or another, I know God will take care of me and I am fine with that. thoughts and prayers, cyndy
I have most certainly cried and cried i dont think there are many tears left i have great support from friends and family and i know they will be there for me and certainly wont let me feel sorry for myself This site has been such an amazing help i cant thank everyone enough for all the support. What a huge family you have they are defo worth keeping strong for you must be a very strong lady indeed to go through what you have been through and to bring 6 children as a single mum hats off to you there. I have no children as yet but i will be looking to have children in the future. Just want to say thank you so much for your kind words take care x
Hi donna30. I was originally dx with pbc in 1996. I have been on the transplant list through Mayo Clinic since 2007. I have ups and downs, however, this summer is up. My MELD score fluctuates between 14 - 18, do you know what yours is? I worked until 1 year ago and am on SSD now. I watch what I eat, exercise, and take a nap nearly everyday. I'm 59 now, have two grandsons, and still have enough energy to sing parttime in a blues band. There are many good books on transplants, emotions........ Let me know if you'd like some titles. Basically my advice to you is to enjoy your family and friends and life! God bless you and good luck!
I am not sure exactly what my results are i am going to book an appointment at the doctors and get all the information possible from them i will prob be in touch after that. I would love some titles for me to get my head into would really appreciate that thank u in advance. I would like to get to 59 and have the energy to play with grandkids too. All the best xx
Hi, here are a few titles to start with. "100 Questions & Answers About Liver Transplantation: A Lahey Clinic Guide" by Fredrick D. Gordon. You may never need a transplant, but if so, this is a great, informative book that explains everything-my husbands loves it. "Coping with an Organ Transplant" by Elizabeth Parr, Ph.D and Janet Mize, RN. Elizabeth had a liver transplant and Janet was her transplant nurse. Ironically, Janet's husband was a liver transplant recipient, too. "Breaking Eggs: Finding New Meaning with Chronic Illness by Lucia Amsden. A wonderful book by a woman who has had rheumatoid arthritis for over 30 years. It "...addresses a variety of psychological, mental, spiritual, and physical issues." through her stories and the stories of others. I'm sure you can find more if you search this and other sites. Take care, Cindi
Hi Donna, thanks and when you have children, you'll find all those tears again............happy and joyful ones
I will look forward to that day
Hello sistergoldenhair, I am 59 and was diagnosed in 1996. We have a 29 yr old son who's sons are 2 & 6 wks. I've been on the transplant list at Mayo-AZ since 2007. My story sounds much like yours. I wish you all the best and agree that God will take care of us one way or another. Bless you, cindi (hey, must be serendipity!)
Wow, what is more ironic is I grew up in AZ (Alhambra High) and my mom and sisters still live there, I am going to visit the end of the month!! Also, most the people in this group are for the UK I think, so it is nice to hear from someone in US:), This is an awesome site for information and support............what was going on with you that they put you on the list if you don't mind me asking?, I have been to the University of Washington here, which is where I would go.............I am in Spokane. I could be put on now, but then I would have to go there every six months for testing by them. My doc at the U of W said as long as my gasterointerologist kept doing the tests here every six months and kept them updated, if something happened suddenly they could get me on the list pretty fast. Do you know what your meld score is?, I am about a 12, which isn't to bad, however I have had other complications that they also look at.......................thoughts and prayers, cyndy(dbl y's to dbl i's!)
My Meld was 14 at the end of June, down from 18 in Jan. I go to Mayo every three months for labs, tests, and usually an MRI. I go again 10/2, so we'll see if my Meld score is holding. 14 is the lowest it's been in several years. I've had three people test so far as donors. No luck yet. My son and daughter in law want to test but we told them to let us have our older friends test first. lol I used to go to a gastroenterologist in Albuquerque, but I didn't like the way he treated me. I told my primary care physician that I didn't want to go back to the gastro. and in 12/07 my pcp referred me to Mayo-AZ. In 1/08 I went for a week of testing and at the end, they told me they were accepting me. At that time my Meld was 6 and I experienced fatigue, some edema and encephalopathy. Same as now. I also have had other issues (a clot in my hepatic vein took over a year to get rid of using Warfarin) etc...no ascites thank God. They tell me I have "End Stage Cirrhosis" - nice term for Stage 4! I've been on Urso since 1996. While I'm glad I'm not really sick, I'd love to find a donor and get my life back! Many friends who want to test to be a donor, don't have insurance. Most of our younger friends and family do but I hate the thought of such young (20's & 30's) people going through the surgery........hope to hear from you again, dbl i's (funny)
Wow, It really is odd how we have similar stuff! And I know what you mean, when I asked if stage 4 was the end stage, I was told yes but we don't like to say it like that, well it is what it is. I prefer the straight forward approach, might be harsh, but then you know. I am curious, are they saying they can do a partial transplant on you? Because with the docs here, I am under the impression, for me anyway, it would be a 'recovered' organ from a person who passed. Just hadn't heard of another option before.
If a Meld score is 15 or higher, Mayo is open to a Living Donor. The person must go there for a week of testing and if they are accepted, they will donate about 70% of their liver to the recipient. The whole procedure (the operation) must be approved by the recipient's transplant team (I have a team) and final testing is done to make sure the recipient is ready, ie no infections, clots...... Everything will be done to insure the transplant is a success for both parties. The potential donor must have their own insurance in case something is found wrong with them during testing. If so, they are denied by Mayo and referred to their (donor's) doctor for further treatment. That happened to two of my potential donors. It's an incredibly wonderful thing for the potential donor to do this. Check with your transplant hospital for more information. Take care, Cindi
I will check and you are right, it is a very wonderful and caring act to do for someone. I hope the two that were denied didn't have anything serious (no need to discuss). Thank you for informing me of this and you take care too and please keep me in the loop, cyndy
Hi Donna,
I was 24 when I found out I had PBC, I went to the doctors with joint pain, it has been 9 years now but thankfully nothing as changed for me. I see a consultant once a year and every time my appointment is due I think about what if!!!
I have a fantastic husband who supports me, when I first found out I cried for 2 years every weekend ha. I then got in touch with PBC foundations and never looked back.
I feel as if I am just waiting for my bloods to rise or get more symptoms.
I have my little girl now and she keeps my mind off it, I just hope she won't get it.
When ever your feeling down or need answer, just type away and someone will always reply.
Take care, look after yourself xx
Hello, I like yourself have suffered joint pains etc so i reckon i may have actually had this a while longer than i first thought but who knows. I think its the not knowing thats the worse bit but with this kind of support i think we can all get through anything. I really hope you keep well please stay in touch. Your little girl will keep you strong xx thank you so much for your message and kind words all the best to you and take care xx
Hi Donna,
I was diagnosed last October, I have some symptoms which I have had longer than my diagnosis, so in some respects I was glad I had PBC in the sense I had a reason for feeling the way I did, I suffer from chronic fatigue and when I'm really bad can sleep for 2 days solid, I also get a lot of pain in my liver, which my consultant is actually quite worried about as this isn't normal, apparently, I've just had to have another ultrasound of my liver and kidneys, results not known yet.
As others have said you may never get any symptoms, my PBC is advanced, and it is worrying, as reading some literature people can have a life span of 5 to 20+ years living with PBC. My advice is live each day at a time and live life to the full, and as others have said the PBC foundation are brilliant.
I wish you well and continued god health.
Lynne xx
Thanks for your reply, i am so sorry to here your pbc is advanced i really wish you all the best i have no idea what is round the corner for me but i have decided not to worry as much and live life to the full like you said although i hope this positive attitude lasts. So many people on here have given me such positive advice and have lived to a ripe old age some barely noticing its there. I am so new to all this so excuse my lack of knowledge. If your advanced are you down for a transplant? If you were to have a transplant your lifespan would not be so short am i correct. I think reading too much literature can sometimes scare people. I believe it will effect everyone in different ways but like i said i cannot really discuss on something i hardly know about yet i received my pack this morning from the foundation so need to get my headinto that. Dont worry if you dont want to answer this i would totally understand. I appreciate every single story as it will help me in the months and years to come. I really wish you all the best xx
Hello again Donna i am glad that you have recieved your pack you will find it really helpfull,i saw my consultant today after only 1 yr on urso my lfts are normal the consultant said that i now have the same life expectancy as that of some one without pbc as my pbc is now stable,he gave me a big smile and said that i will be ok for many decades to come,i hope this helps as like i have said before a yr ago i was like your self.I was also diagnosed today with sjgens and may have coelic disease so now i am worrying about that.I know this may sound silly but after my app i stood out side the manchester royal waiting for my taxi and i felt like i had been reborn like i had been given a second chance and i remembered how it felt when i had been diagnosed a yr ago it was a mixture of feelings.I think what i am trying to say is when first diagnosed you feel like your whole world has just come crahing down on top of you and life will never be the same again,i now know that things can get better,dont get me wrong i am not happy that i have pbc but i am so glad that i was diagnosed when i was as caught early it can be controlled and you can still go on to live a long life.
I cried reading this i am so happy for you that you have been told such great news it does not sound silly at all that you felt like that when you left the hospital i would have been the same. It is lovely to here, it does defo seem like my whole world has been crashing around me over the weekend. I do however feel much more positive after reading so many positive stories. I hope you are ok with what you have found out today thinking of you keep being your lovely positive self as it works wonders for everyone else too xx
Thank you Donna you will get through this honestly it just takes time.I have a daughter who has a serious kidney illness we nearly lost her 3 months ago we live on pins as she becomes ill very quickly.this was the turning point for me,i was so wrapped up in this pbc for months then she became seriously ill very quickly,my mum was also fighting for her life at the same time i remember sitting in intensive care and thinking that i would hate to of been diagnosed with what my daughter has her quality of life is terrible,pbc then did not seem so bad i thought well atleast this disease can be controlled and like the consultant said if urso works it practically brings it to a halt,i wouldn't swap pbc for she has no way.That was another reason for my happiness today i now know that i will be around for a long time so if any thing happens to stacey i will here to bring up my grandson i also have a young son with autism who needs me.My new rule now is that i havent got time to get ill it will have to wait lol
I am so sorry to here about your daughter i just cannot imagine what you are and have been through my heart goes out to you. What a strong lady, you are such an inspiration. I will keep reading your messages when i am feeling sorry for myself you are going through something so much worse. Its not until you here people worse off it hits you and i just want to give myself a kick up the backside. Had a bit of a meltdown this last day or two and been feeling so panicky i need to get over it and start being positive. I love love love your new rule i am going to pinch it. Wishing you all the best really i am xxx
Thank you donna,sorry to here how panicky you have been over the past few days,you remind me so much of my self when i was diagnosed.It really is normal how you are feeling no one likes to be told that they have this incurable disease you would't be normal if you felt any other way right now,i may be strong now but if you had seen me last yr i was a reck.I think you would really benefit from a dvd that i was sent by liver north it put my mind at rest alot i think it would really help you it is a professor newberger i dont think i spelt that right lol he is an expert in pbc if you ring liver north up they will send you I allways hold on to the last words that he says and that is to not worry about this disease as it is maneagable and treatable and normally not half the problem that most people tend to think it is.If you have trouble trying to get the no let me know and i will find it for it really will help you.Also last night i googled an article wrote by my consultant Dr martin Prince and that also was very positive.Let me know how you get on and if you need my help .you are part of the familly now and we are all here for you xxx
Hi,
I have been slightly more positive today. I have ordered the dvd really hope it comes soon. I think its when i am looking into things to much i start to worry. I just need to get a grip and look forward......every case is so different. My friend has put me in touch with her friend who has a practice on Harley street in london and specialises in chronic diseases through nutrition and functional medicine i now have her mobile to call for advice and maybe meet up with her which is great news she has done some amazing things for people. I am going to have a word with my specialist and dr in the morning then maybe call her to get advice. I will let you know in the next couple of weeks what she says. I just need to know more where i stand with everything before i call her. I will defo keep you posted any advice i get i will pass on xxx Thank u
Hi Donna
I'm not quite at transplant list yet, but if my PBC advances much more I will be, my levels have been pretty stable since being on urso, I have 2 x 250mg twice a day and don't have any side effects from it, so lucky there, my consultant said I could stay at the stage I am. At now for many years, or be unlucky and it advance further sooner even he doesn't know as everyone is different, so I just hope for the best and try not to dwel on it or think about it too much.
Take care, Lynne x
Thank you for the reply, sorry its late. I have been through a bit of a meltdown this last day or 2, need to get my head out my bum and get on with things and start feeling positive again as i cant do anything to change things. I wish you all the luck in the world you stay at the stage you are at. Stay strong and enjoy life to the full xx I know easier said than done. xx
Hi all, I was diagnosed following high colesterol levels 2010. My 15 year older sister has lived a high quality life with pbc for 40 years. Our dear mother lived with it for 34 years and passed away from old age. We are lucky that our pbc seem to be a slow progress one says the 2 consultants I have been under. I started at Kings College London with Dr Heneghan and now since we moved I am with Dr Alexander at Addenbrooks Cambridge. Both have been very helpful and good. I have had some itchy periods but on Urso I am fine since 6 months. I forget that I have pbc a lot of the time and have to remind myself so I do not have too many glasses of wine for exaple!
Hi, what a positive message. I have asked my mum and sister to go for tests. I only went to my doctor as i found a lump so think its worth them getting checked. I am so pleased to hear you have had such good consultants and that your pbc is slow. Have you only been on the urso 6 months? That is how it read. I think they are wanting me to go on it sooner the better. I have been told to live a normal life, i have joined the gym to get fit, changed my diet to healthier food but have been told i can still have the odd tipple and i will have a takeaway on treat days. I love wine and girlie nights out this isnt going to stop i will just have to drink in moderation from now on. Thank u so much for your message xx
Thanks for this wonderful post. My doctor suspects this is what I have and I am undergoing a heap of tests / scans etc tomorrow which I am as nervous as anything about. This has lifted my spirits a lot if it is what I have. I have three young children to bring up and feel devastated that they may lose their mother early. Thanks
Hi, It is so scary when you are first diagnosed but honestly dont worry i spent 3 weeks in tears and what a waste of time that was everyone handles things different i am now going on day to day as normal and barely think about it at all. Please dont think for a moment you will die from this only 5% of pbc patients ever need a transplant and even then this is a lifeline. You will see your children grow up you are more likely to die of old age or something else than this hun. Please dont worry any concerns you have though am not an expert get in touch. I will copy a message i sent to another lady on here that should help you. Please dont worry out of all the liver diseases there are this is one of the better ones xxxx
I wish this sight had a like button like Facebook,I love reading everyone's posts and you are all so lovely and friendly.Like you all I was terrified out my head but having you all makes me actually feel blessed,your all so nice and supporting and I love the encouragement Hoyt all give to one another.I do believe that being positive is our only answer and taking it one day at a time and learning to adjust and cope and listen to our own bodies...,,finding you all and listening to you all has gave me a new lease of life for some reason,I'm not alone anymore :)...BIG GIANT THANKYOU xxxx
I know it really has got me through a hard few days such positive women and so inspirational. I am like you just going to take each day as it comes. I also want to send a massive thank you to everyone who has commented it has really helped me more than you can imagine xx
Hoyt should be you lol x
All of these comments are so inspirational. Think positive, Keep calm & carry on.
Hello read as much as you want there are lots of positive things about this and you will find for yourself to make the most of it. 1 year since my diagnosis even though I m syntomatic change of diet ,lifestyle and for the itchiness I think milk thistle has helped ,ver achy in my joints every day but hey keep going so many people have it x years a never developed anything serious good luck
Hi , I was diagnosed with PBC in January 2011. However mine was serious and I ended up havin a liver transplant. First advice I would give is try to stay stress free apparenly stress is not good for you. but I do understand your concern. You are lucky as you have caught it early but symtoms can be different on different people. Be positive , it's a slow progresive ailment. As time goes on you will learn more about it and gain help and tips, the folk on here are a wonderful crowd. Ask any question you like you will get an answer. Good luck
Hi Donna, I was diagnosed in 1992 with PBC after having my thyroid checked. The blood tests for this also showed my liver function tests were higher than they should have been. From there on I was checked by a Consultant regularly. This eventually led to a Liver Transplant in 2002 (nothing to be frightened of) and now I have a new life. My PBC were a very bad itch, skin going yellow and losing weight because I was off my food. Also latterly very tired - I used to crawl under the duvet when making my bed! Prescribed Urso but still this didn't help the itch. PBC Foundation is very helpful and you can phone them at any time. Please don't feel lost as there are lots of people who you can talk to. Rest as much as possible.
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