New PBCer still struggling

Hi all,

I posted a couple of weeks ago after being newly diagnosed with pbc. Since then I have really been struggling to keep things together. I spend days in tears, hardly sleep and feel like it's such a big act having to smile and chat to people as if everything's great. I seem to be grieving for my life pre diagnosis. Is this normal? I'm only 34 with a young baby and just feel like I'll never be able to fully enjoy life again with what feels like a death sentence hanging over my head. I'm not due to see my specialist (who I didn't find very caring) again for 3 months and don't know how much longer I can go on feeling like life is over. I'm so scared and feel like I'm suffocating.  Is life just likely to now become one big struggle?

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  • Hello hgreen.

    I was diagnosed back in December 2010 after starting to itch early 2010 when I was 46.  Unlike yourself my 2 children were grown up.

    I did a bit of research myself during 2010 after I kept being informed by my GP that this blood and that blood had come back with a negative.  He then said it was 'liver-related' and I had a scan (showed everything pretty much normal).  I saw a consultant at hospital for the first time beginning November 2010 and by December I was informed I had PBC and started urso.  My only symptons at the time apart from higher than normal range bloods were itching and fatigue.  Fatigue for me vanished at some point during 2011.  I still itch but it has altered over time to be mainly later evening.

    I stumbled across PBC in a library reference book during 2010 and hoped that for me it was just some temporary glitch and I'd carry on living perfectly normal.  I was then diagnosed with PBC.  I remember being requested to go in to see the GP after someone rang me and I did ask what medication this was.  When I was informed 'ursodeoxycholic acid' I wanted a straight away appointment (not the following week as was given) and knew it was going to be PBC.

    That night after my husband and I went to the GP and started to walk home in snow that was falling, I told him that he could leave me if he wanted to.  I had been a widow since I wa 29 raising my 2 children alone and my current husband and I only met November 2008, married in May 2009 so hadn't been married a year when I started to itch.  He of course said he would stay but it's not been easy.

    In the early days it is in my opinion quite normal to go through allsorts of feelings and emotions and ask yourself the questions 'How long will I be around...' but I think it takes more time and then to start clocking up months then a year and then more for you to realise that you have to start to make the best of the situation.  Unfortunately at the moment we cannot rid ourselves of this PBC.

    I went through times in the early days of staying in bed of a Sunday when it was a free day, not eating that day and then not taking the urso but over time I just opted to do the best I could and decided that life is for living now.  I'll deal with things as and when as there is nothing else we can do and at the same time to me why waste life thinking about something that in our case might never be, needless worrying.  I know it might sound easy for me to say this now being diagnosed over 5yrs but I also remember that when I joined this site (and it was a new site then) there were other contributors on it who had already gone these years before me.

    If you are not aware already, you can request a free dvd all about PVC from Liver North (I didn't watch it all as I had read enough but my husband did).  the link is here...

    livernorth.org.uk/

    There is also British lIver Trust site, put in Publications and it will show you their leaflets that you can rfead online, ther eis one for PBC.

    I still enjoy going out walking and I'm now 52.  I go on UK holidays and enjoy myself along with my husband.  It is true I am living a slightly compromised life as I struggle to sleep at night with the itch and then I find it carries forward, the next day in the mid-afternoon I start to feel tired due to lack of sleep.  I find early evening I start to feel prickly and cannot sit about for long.  I used to love going to the cinema but know now that I probably won't again due to feeling prickly when sat for certain periods of time.  But on the whole these are things that are of no major significance.

    Try to continue looking after yourself as you thought you were doing (I have never been a smoker for instance) as feeling healthy will make you feel better.

    I didn't return to the consultant following diagnosis for a few months either but I did have the bloods done around 2 months after starting urso and seeing the drastic drop in the readings (I request a print out of the results) it urged me to go on. 

    If you continue to feel you are unable to cope then it might be worth your while making an appointment to speak with your GP as I am surfe feeling depressed or anxious are all part of having PBC, especially being newly-diagnosed.

  • Hi hgreen!

    I am so sad that you are struggling! it is awful for a 34 year old new mom to hear that she  has a chronic progressive disease. Particularly when you look into your dear baby's eyes and want to be here to protect and nourish and love your little one forever. But please remember, it is a VERY slow progressive disease. Urso slows its progression even more. You will be there for your child all the way! Treasure every moment given, don't worry about the future. Even those without chronic diseases aren't guaranteed to reach their 90's! If you get a chance ( if new moms ever have a minute!!) read some of the prior posts...so many here have lived years and years with this! It truly is not a death sentence, maybe a life sentence to eating healthier, getting a little more exercise, giving up that glass of wine, but hey, those are good things! I like to think of PBC as a wake up call, not a death knell. It has made me realize the importance of not putting anything off, of getting that extra hug, of saying I love you out loud....all stuff I should have done before. Even the healthiest of new mothers feel exhausted. With this added twist, I am sure you are so tired. Rest when you can. I think you will feel very differently with the clarity of being well rested. My heart and prayers are with you.

  • Hi hgreen

    I just want you to know this is completely normal reaction, I felt exactly the same when I was diagnosed 5 months ago, I couldn't sleep, kept crying and was so, so afraid.  This site is the best support you will get and you can contact the PBC Foundation any time and I mean any time.

    I am 50 and have a 12 year old daughter I regret not having her earlier and my ambition was and still is to live until I'm 80 to see her grown up and be there for her.  I felt (still do some days) that I hit 50 and my life is over.  Some days I think I am depressed and think of going to the Dr to get medication but I keep trying my best to fight off my thoughts.

    It takes time to come to terms with this, but as per previous post this is a very long slow progression and you will hear many times on here, 'people do not die from PBC, but die with it' sounds depressing but it keeps me positive.

    Its hard putting on a brave face and I still haven't told my blood family ie mum, sisters, brother, the husband knows but hey as I have little symptoms he doesn't think there is anything wrong with me. Unless you have severe symptoms unfortunately there is little sympathy.

    Just coming to terms with taking daily medication for life has been difficult for me and still is.

    This site will be a lifeline, so glad you signed up here, difficult to advise so just as I say you are not alone.

    Keep strong, I'm sure you will get more positive posts on here

    xxx

  • Just a quick one. I am 75, have 3 children 8 grandchildren and enjoy life to the full with PBC. Just moved home so without internet so am sitting in the pub!

  • Bless you!  Your reply will have cheered a lot of us up!

  • God Bless You Oidra!!!!!!

  • Sorry to hear you are struggling so much.  I was diagnosed 2 months ago and can relate to the feelings you are going through. You are normal. Your reaction is understandable. 

    Have you looked at the PBC website yet. Once you join you get access to more information which will help to calm your fears.  I found the compendium very useful.  It is clear straightforward information. The more you educate yourself the easier it will be.

    Have you got someone close to you who you can talk to? Even if they don't fully understand PBC I have found talking about it to a trusted friend helps.

    The foundation also has a helpline that is assuming you are in the UK.

    It will get easier. 

    Take care.

    Best wishes

  • The other posts reflect what most of us felt like on dx you feel so alone.  I got the dx just as my son got married all I could think of was I'd never see my grandchildren, yet the eldest is 5 and at school I also worked full time until I was 62.

     Maybe it's time see your GP and let them know how you really feel, they may be able to get your appointment bought forward. 

    I would also telephone the PBC foundation they understand  how you feel,  when I was first Diagnosed I rang them in tears I could not even speak clearly. Follow the link on this page for the telephone number. 

    Another thing that helped me in the early days was the readers letters in the PBC foundation bear facts magazine ,I seemed to scour them for any signs of longevity, read through some older posts,  you will see lists of people going along through life quite nicely. Take care x 

  • Hi, I am 69.  Its ten years since I was diagnosed.  I remember that tummy turning moment when I was finally diagnosed.  I can relate to the thought of taking medication for the rest of my life but have been taking ursodeoxycholicacid and so far so good.  The liver specialist I first saw told me he had people into their 80's with PBC,  and we die with PBC not from it. (Hmm!)  but I think that is a good way to carry on.  I've had ups and downs but mostly all good.  I have had a bad couple of months following the flu virus.  Our immune system is not strong so need to look after ourselves, keep positive, enjoy your baby, look forward.   

  • Hello HGreen, 

    Your feelings a normal as I felt the same when I was first diagnosed.

    PBC is not a death sentence!  If you are not happy with your consultant ask to be referred to another one.  There are good ones out there.

    Contact the PBC Foundation.  They will give you all the advice you need.  Maybe recommend an understanding consultant who will put you at ease.  There is help out there for you.

    Join one of the PBC Support groups.  The PBC Foundation can give you a list.

    Try and keep positive.  

  • Hi I was diagnosed 13 years ago with a 3 month old baby and nothing about my life has changed at all.  At diagnosis I was told that most people die WITH PBC not FROM PBC. As long as you remain symptom free (like me) and nothing really changes - my consultant told me my results were "unexciting"!!!! - everything will be fine.  

    I don't believe all this about weak immunity either - I don't ever get colds, am never ill and having recently lost a lot of weight am fitter than ever!!  

  • We all panic at first but this is no death sentence. It's a condition that needs management. Take you medication and get your bloods done regularly. Like someone else said none of us knows what it around the corner. Check here regularly and learn as much as you can on your own. Clinics are not great as the consultants are under such time pressure and have no time to spend on individuals. Enjoy your time with your new baby and go live your life. You will get used to things gradually. The best thing I can say is that you will be  around for a long time to come but enjoy every day of life as much as possible. And when you feel tired listen to your body. I best wishes. Michelle 

  • So sorry sweetie you are feeling like this.  I was diagnosed 2005 at stage 3 when I was 32 and honestly, I had that same feeling at first.  My ex-husband said something to me that was so mean so I then decided that he was not gonna keep me down nor was this disease.  I am doing good and staying positive.  I pray and talk to God which also comforts me.  My husband, son and other family and friends are amazing and they don't hold back when in overdoing it.  You can live a full life to the ripe old stage of senior citizenship with this condition.  Keep that in mind and don't let it drag you down or it will affect the way you feel.  Don't fake the smile, mean it.  You have a lot to be happy and thankful about so use that.  Make sure you join the Facebook groups; there are so many that will offer support and possibly some you can help too.  Lots of love and prayers to you.  

  • Facebook group?  Sorry Ive missed this one, is there one?

    What is the name of the group please?

    Thanks

  • There are a few.  PBCers Linie, PBCers Organization, PBC Angels (Liver Disease), PBCers and PBC NCI.  PBCers Linie is actually a personal page of a very wonderful woman with PBC but she is the Admin on a couple of the others so request to join the other pages first. 

  • Excellent, will do thank you

  • Hi 

    I think so much had been going on that to have a name was helpful. THe biggest thing is that each person is affected in a different way in terms of symptoms and it is the symptoms that really get you down.

    some strategies I have found

    itch - sunbathing for short periods of time really helps (contemplating more time in sunny climes if I can as UK winter doesn't help any aspect)

    dry eyes - refresh eye sachets - found them when my daughter had laser treatment on her eyes as she was given them to use - brilliant and easy to carry about.

    I do get pain in liver area if drink more than a little ( small glass of wine) or if eat a high fat meal) - so worth sticking to a health diet with moderation on the special things in life.

    Tiredness - If in UK Newcastle is doing research into this and the itch. For me this has been the hardest part and remains - pacing and taking short rests (eg. activity for about 3/4 hr then a short sit down ( rocking baby, reading, ). If in Uk and tiredness is very bad look at applying for personal independence allowance and use that money on e.g. a cleaner

    Pain -  in muscles and joints. Seems to be an indicator of pushing myself to much, varies according to weather ( warm, dry is best).  cruise control and an automatic car if possible. On Naproxen but try to limit it to only using at bad times.

    Cramp - Indian Tonic water

    There is a life and one gradually comes to realise that many many other people of your age and situation have unseem chronic illnesses that negatively imping on your life.

    I was down in the beginning and was befor being diagnosed put on anti depressants. They were worth it to get me over the hump.

    Join the PBC foundation and if possible go to one of their sessions on managing.

    GIve family and close all info as they can really help and support ( even though my daughter complained in a teasing manner about her genetic inheritance -PBC from me and bowel cancer and bipolar disorder from her father)

    It is not a death sentence it is a challenge and one can do incredible things - it is learning to chose those that fit in 

  • Good morning hgreen!  I too am sorry that your having such a hard time.  It definitely takes a while to get used to this new diagnosis, especially as a young mom.  While we all have different symptoms and likely progress differently, I was "fortunate" to have an aunt who also has PBC which allowed me to see her very slow progression.  She was 50 at diagnosis , is 83 now and about to fly with my family to my sons graduation in SC - doing great!

    I would suggest you ask for copies of all of your blood work and test results when you see your doctor. For me, I was relieved to be able to see the results and compare them to prior ones each time I go. And definitely call the PBC Foundation - they're awesome!

    I hope in time you will become more comfortable with your diagnosis.  I have developed a  healthier lifestyle: exercising more,  eating healthier and less to drink.. All in moderation.  I remind myself to be grateful to have something that progresses slowly as opposed to a more life threatening illness. 

    Enjoy your new baby - the time flies by!  Try not to miss today's moments by worrying about tomorrow's.

    You will get there!  My best to you!

    Maureen

  • Good morning! Hope you are feeling a tiny bit better after reading the posts here on this site. I agree with so many of the postings that I don't have much to add except maybe think about talking to a professional; your GP, the specialist (call specialist & see if he has any tips, maybe can move up next appointment), your minister, a grief counselor? I Hope it helps when you read that so many of us have gone through the same feelings. It's weird but I actually felt better when I was diagnosed with PBC only because I had been misdiagnosed with something much worse originally-( almost 10 years ago now)- Dont hesitate to get help if you continue to feel like you suffocating. All the best & keep your chin up!

  • Hi hgreen,

    You are not alone and I understand your fear. It doesn't matter how old or young we are, each of us have something very dear to us and the thought if not being around, not seeing our loved ones grow up is scary as hell.

    I cried for a long time, lived on the Internet trying to figure out how much time was left. I was angry because I had bad numbers and my dr. did nothing for 3 years. Then when I found this out I was devastated. I had wasted 3 years when I could have been on medication. I continued to go out for happy hours, have my glass of wine as I had no idea I should not be drinking at all. I was diagnosed in September and a biopsy confirmed Stage 2. I was besides myself with grief.

    I am on Urso now and my number retired to normal. I get on with my life and now have days when it does not even enter my mind but I still get down, tear up and feel sad when the thoughts hit. And then I think - why waste time feeling this way? Instead take in every sound and moment and spend less time worrying and more time living.

    It's not easy but it will get easier. Try not thinking of what you don't have but more of what you do have. Enjoy your beautiful baby and do everything you planned. Take care of yourself as well - it is important.

    And if you need to talk, there are so many people here that are willing to share their stories. I hope it helps, at least a little.

    Best, J

  • Well, I can't really add anything to the great advice others here have offered, so I won't attempt to. Suffice to say, I was diagnosed 27 years ago, an though Stage 4 now, I'm still here.

    Take care ^_^ 

  • i am so sorry you feel like this. It is not the end of the world. I have been diagnosed with PBC now for the last16 years since I was 48 and thanks to Urso my LFTs have remained stable since I started taking it. My biggest problem is the fatigue but some of that could probably be my age I am 64 this year. I remember how frightened I was when I was told I had PBC. I felt I had been given a death sentence, but it isnt like that. Join the PBC society, they have been a great help to me and see if there are any support groups in your area. Unfortunately there are none where I live. Also if you are not happy with yuur consultant you could always ask to be changed to a different one. Unfortunately a lot of doctors are not as up to date with PBC as they could be. I hope this has helped to ease your mind a little. Chin up.

  • Hi Hgreen,

    I know exactly how you feel. I am 27 and I have no children. I honestly feel like my life has changed over night. I was diagnosed in April after having a faint spell at the end of February.

    I have always been the type of person that answers "I'm fine" to the how are you question, with the additional smile to make people feel good for asking when inside I was struggling. I can only tell you that you can't lose your way.

    We have to stay positive, we need to look to the future and see the good in it and not the bad. You have people here... I'm very new to this so feel free to contact me its always nice to know that there are people out there who really know what you are going through and not just saying it.

  • keep reading here, just reading these posts today have encouraged me so much :-)

  • HUGS...I know it's hard. I was just diagnosed on April 20th. The first week for me was a lot of tears and feeling it was all 'doom and gloom' but then I made the decision to get on with living, and to do it right.

    I think it's all (as anything in life) how you look at it. Perspective is EVERYTHING. I first looked at this diagnosis as a death sentence. Now I look at it as somewhat of a gift (sort of) because we never know how much time we have on this earth. Most people live like they'll live forever and therefore waste so many opportunities, they don't do so many things they want to because they think they have time to do it later...years from now. Now I know that I have a certain amount of time before I get sick enough that I can't do the things I want to - and so I've decided to live my life. Smell the roses - light candles at home I've been keeping away because they're too pretty to light. Open the curtains more and let the sunshine in instead of keep it out because I don't like it highlighting the dust in the house. I'm going to travel with my little boy more (just got back from Bahamas and will be going to Disney this summer). I'm going to live like I don't have all of the time in the world. We all should live like that.

    Because truthfully, even though we have this diagnosis, we could step out of our homes tomorrow and get into an accident and die. Morbid, but true.

    To me, this diagnosis reminds me to try to live each day, fight harder for the things that I need to fight for. Love more, argue less (because the stuff I'm arguing about probably doesn't matter anyway), forgive more, laugh more, spend more time with the people in my life instead of telling myself "oh maybe next week or next month we'll get together".

    Live now - and put your focus into that - look ahead, dream and then live it. You can do this :)

  • Having said all that - take the time you need to grieve and to process this and to accept it....take that time, just don't get stuck there.  :)

  • I read your post and it sounds exactly how I feel.  I was diagnosed 16 months ago.  I still cry every once in awhile.  I think about PBC every day (how can you forget...taking 3 pills a day).   I have 2 young children.  Even though this disease is slow to progress, sometimes I think in the back of my mind, some people do progress quickly...what if I am that one?  There is another test you can take to see if you have the enzyme that means a faster progression.  I don't recall the name right now.  However, my new approach is that I don't want to know.  I don't read my blood tests.  I will still do them every 6 months.  My hepatologist will only prescribe urso every 6 months so I have to see her every 6 months anyway.   I can log on anytime and read the results but it doesn't really matter.  If they are good...they might not stay that way...if they are bad...then I will be depressed.   I have no symptoms.   I give everything I can to my children.  I wrote a book for them about my life.  I wrote letters to them in case I die before they are grown.  I remind them every day that I love them and want them to stay close when they are older so that they have each other in their lives.    If that is the silver lining in the cloud, then I feel that I do live my life every day as if it is the last.   I am a glass half empty type of person so this diagnosis is very difficult for me.  I just wanted to let you know that you are not alone.  So many people seem to rebound quickly from learning they have this disease but there are a few of us who don't.  I hope you read the posts on this page and the facebook page.  It really does help when you are feeling down.  There are an amazing group of people out there with this disease who are optimistic, encouraging, supportive, etc.  It has allowed me to meet people that I never would have or reach out to strangers when I would never have done this before.  My doctors are very encouraging and tell me not to worry!

  • Hi.

    I'm sorry that you are struggling with  pbc,but you have a lot to be happy. I got diagnosed when I was 25. I was in coma for 3 months after biopsy, but right now I'm fine. I take Urso,do my blood work every six months,exercise, eat healthy and enjoy the day. Even though I'm struggling now with early menopause related to Pbc. We can't have a baby. My husband is devastate, but I'm sure we'll fine the way to be parents. That's why you have a lot to be happy and enjoy your baby.

    God bless you. 

    Susana. 

  • I understand completely, when I was first diagnosed with PBC 4 years ago, I started taking years off my life HOWEVER, this was due to OLD< OUTDATED PBC info on the internet.   I know DR's that have said they haven't seen anyone die from it....good news I would the PBC foundation for the best and accurate articles. That being said I advise you to finfd another specialist if that one is uncaring. I'm in the USA so I don't know where you are/ We don't have national healthcare here, so I think it might be easier for us to switch Drs ???? I don't know. Please feel better enjoy that beautiful baby and take it one day at a time..I would also see a Liver specialist not GP but don't know what your health ins is...  Hoping you feel better you have the beauty of youth on you're side too!! I was diagnosed at 50...I'm 54 now. All the best.. My top Liver specialist said that I am asymptomatic on the URSO med, and that PBC will kill me NOT PBC, so ready to become a NON smoker very very soon!   

  • Correction SMOKING will kill me.. sorry for typo

  • Just wanted to say just been diagnosed and feel the same. Love my life. I have a gorgeous 15 month old son and wonderful partner. Feel like life is over

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