Hello.
Yesterday I found out I am now in stage 4 PBC. I was put on my doctors cirrhosis watch list and have to have an endoscope I think it is called once a year and don't think i can afford it that often. I am just now getting the last one paid off from almost a year ago. I am not sure what to expect in stage 4 financially or physically. If anyone has any input on that or how long do people usually live once they are in stage 4.
Thanks
Sorry to hear your news and that financially you may not be able to access endoscopy etc as often as may be needed. I’m very fortunate that I live in the UK so that’s one thing I don’t need to worry about. Take care Diane
I think this PBC journey is different for everyone (depending on how your body handles stress and other factors). I was diagnosed about 12 years ago in the early stages. At the time my only symptom was extreme fatigue and digestive issues. My body stopped responding to Ursodiol about 2 1/2-3 years ago. During this time I have struggled with complications brought on by viruses/illness which in turn would cause a flareup of cirrhosis symptoms. For the last 1 1/2 years it has gotten worse and I have had to face multiple hospitalizations due to GI bleeding (with blood transfusions), weakness, bedrest, dizziness (no driving for me), nausea, abdominal pain, itching, overlapping syndromes (joint pain, stiffiness, and raynaud symptoms), TIPS procedure (shunt to help relieve pressure in blood vessels and reduce the amount of bleeds), and many other things I am probably trying to forget at this point. I was in the ICU for two days post procedure due to fluid shifts causing me to be hemodynamically unstable. I also had some symptoms of encephalopathy (not fun).
Endoscopy procedures for 2018=7 about half of those times variceal banding occurred. I went on short term disability but that has run out at this point. I was a bedside nurse, but now that I am stage 4 I get sick easily (regardless of precautions) and end up in bed for days to weeks, and have to work to regain my strength each time. **Medications are another expense that has increased. I tried Ocavila when Ursodiol stopped working for me. It worked at first to bring my LFT's lower, but ended up making me itch so bad I would wake up with missing layers of skin and my body flared up again and my LFT's went up again, therefore I stopped Ocaliva per doctor orders. The liver specialist prescribed other medications to help with the itching, but they made me sleep for 14 hours a day basically sedating me, so I could not take them even at half the dose. My cirrhosis program requires an abdominal ultrasound every 6 months to check for liver cancer (PBC increases your risk) and for ascites. Lab work probably varies depending on your physician and your insurance plan. I am sorry to hear you are struggling with this health issue while worrying about the costs of it. I know that it can be disheartening at times, but stress is the enemy. Once I got a better handle on my stress I started to slowly get better. I am not working right now and my husband doesn't want me to go back to work because of the exposure to ill patients and the stress that it entails. Hope this helps you and/or someone reading this. Know that you are not alone! I am 40 years old and never expected this to happen to me at my age, but life has a funny way of surprising you- just keep your head up and remember smiles are contagious
Thank you for your answers. Sounds like I am in for a bumpy ride.... I am a little in shock because just from what i have read on here and been told I didn't expect to be in stage 4 so soon. I was diagnosed 4 years ago and thought the urso was working well. A bit of a shock and then I was led to believe I was a good candidate for a study which would have paid for all of my treatments which would have been a Godsend. But in the same day I was told I wouldn't qualify because my numbers weren't high enough and I have had cervical cancer in the past. What does cancer have to do with it???? Angry about that one. Anyway thanks and good luck to you!!!
Sorry to read your post. Are there any charities that you can apply to for medical aid. I seem to remember my Dad who lived in Florida used medicare or medicaid, it was quite a while ago so not sure of the name nor indeed of how the American system works. Has your specialist checked you for vitamins and minerals. It is known that vitamins A D E and K become difficult to store and your specialist may like to recommend supplementation.
As to longevity I think it is a difficult one to answer, we are all so different with progression and how we respond or not to URSO, again your specialist is probably best placed to give you a guideline. sorry not to be more help on this one.
Although there is no actual diet recommended for those of us with PBC quite a few, including myself, report improvement in how we feel buy taking certain foods out of the diet. Certainly a reduction in salt, sugar and bread helped me.
I have taken the following from the British Liver Trust.
"People vary in the amount of fat they can tolerate so this does not mean you will necessarily need to eat a strict, low-fat diet. Most people find they are able to work out how much fat they can tolerate by ‘trial and error’ by reducing amounts of the higher fat foods. Improvement in bowel habit shows that your body is tolerating the amount of fat you are eating. Stools will become less frequent, darker and easier to flush away.
Cutting down on fat
If you want to cut down on the fat you eat you need to avoid ‘hidden’ fats as well as the obvious ones you can see in meat and greasy foods. The list below gives examples of high-fat foods and ideas for alternatives.
Butter, margarine, lard, dripping, mayonnaise – try using low fat alternatives.
Cream and full-cream milk – substitute semi skimmed or skimmed versions. There is as much calcium (needed for healthy bones) in half-fat or skimmed milk as there is in full-cream milk.
Cheese – try lower-fat hard cheese and low fat cottage cheese.
All kinds of cooking oil including olive oil, sunflower and vegetable oil – use these sparingly; try using a table spoon to measure the amount you are adding instead of pouring straight from the container5.
Fatty meats, such as duck and belly pork – eat more fish, poultry, lean red meat.
Meat products such as sausages and pies – you may be able to eat small amounts of these. Try adding more vegetables, beans or pulses, tofu or meat substitutes to meals and reduce the amount of meat.
Chips, crisps and nuts – try oven-chips or replacing chips with a low fat alternative like a jacket potato5.
Biscuits, cakes and pastry – try low-fat alternatives such as teacakes, scones and low fat cakes or biscuits.
Many processed foods are high in fat – for example pizza, lasagne, ready-made curry or other dishes. Eat only small amounts or use a low-fat version."
Keep coming back to us and let us know how you get on.
best wishes
Thank you so much for your time.
Good morning.... I cannot imagine what it wad like for you to hear those words...Stage 4.
My hope is that you were able to find some moments of peace and stay out of your head a little last night. If it is ok with you, would you share what state you are in and your age? I'm am a retired Social Worker and might be able to guide this taunting journey you are on.
I am also a yoga teacher and have been since the mid 80's. Just for today...find a quiet space and take some long deep breathes. Remember that nothing has to happen around this today. I read in one of your previous posts that you also have an anxiety disorder. For me, I know that my anxiety will cause flare-ups for me. Thank you for sharing with us. The more knowledge we have collectively, the better we can help each other.....Be well
Hello,
Thank you for your response. I am in Tennessee and I am 53. I didnt expect to get the news I did and then I was led to believe I would qualify for a study they are doing and that would pay for my medical and then in the same day told previous cancer and my numbers not being high enough are keeping me from qualifying and that I am going to be getting put on a cirrhosis watch list and more medical procedures on a regular basis that I cannot afford. Also, the other day my doctor gave me a number to a lawyer to file for disability and due to some time I took off because of feeling bad i now do not have the points to file for disability. Ha missed it by a little over 800.00 for one year. I have worked all my life for peanuts, buried one child and raised 2 with no help from their fathers and now can't even qualify for disability. Then the lawyer said I couldt qualify for the for the poverty disability because my husband makes over 1100.00 a month. I feel like I have just been beaten up this last couple of weeks. The system has never been my friend. I struggled really hard with this diagnosis 4 yrs ago thinking I was dying tomorrow kinda thing. Worked myself through that and now here I go again. I was told by two doctors that I would die with this disease and not of it and then I am told I am in stage 4 at age 53 just 4 years after diagnosis. I do not know what to believe and my anxiety is through the roof right now. I am depressed, dissapointed, angry, scared, confused and find myself just wanting to give up. I dont know what to do about working because it is so hard for me but to qualify for disability I have to put in another 2 and a half years and I dont think I can make it mentally or physically. I am sure this is not what your were wanting when you replied to me and I am sorry for being such a cry baby but that is what I am feeling like. Thanks
I am in Alabama, stage 1. I see that you are in Tennessee. I was recently informed by an employee at a Goodwill that they will help pay for people’s medicine, it might be something to check in to. She named off a long list of things they help with so there may be something they could do to relieve finances which would relieve some anxiety.
Tealmust,
You never need to feel that what you are feeling is wrong. I've been there. I've been so depressed that I can barely get out of bed... But, I want to offer you a bit of unsolicited advice. Find your peace.
Stress will literally kill you. Cry. Vent. Rant. Pray. Meditate. Whatever you can do, but keep going. Find some acceptance for the... uncontrollable. Live in the moment. Having a lovely cup of coffee on your porch? Be there. Let go of all the uncertainty. Yeah, for all of us, for any of us, dark days could be ahead. BUT, do what you can today. Make a nice cup of tea and enjoy it. Go for a walk and breathe in the morning.
I get it. I know it sucks. I know it's scary. I've been there. I am there. Sometimes I find myself in such a dark, dark place that all I can do is look for any little sliver of light. But never stop looking for that light.
I don't have any real advice towards financial aid or disability or any of that. I'm in early cirrhosis and scared about financial things too. Medical appointments/bills seen unending. We have five kids, from the one in diapers to the one starting college in a couple weeks. I worry for the future, like anyone, but... Today is *still* a good day.
I'm so tired today (which is actually why I'm on my phone) but I've spent the morning snuggling a rambunctious 2 year old while he watches the same shows again and again bouncing on my bed. Could be worse.
I feel your pain in your words... just, if you can... find some peace. Hang in there. Don't give up. Nothing wrong with curling up in bed and crying... Just don't stay there. ♥️
Beautiful. Thanks for posting this today. Hugs to all.
Thank you for your response.
Right on don't ever give up!
Dear Realmust,
Sorry to read your news about stage 4 which I'm not in a position to comment on as I'm being monitored for PBC since July 2018!
I've notice that some have the condition for much longer than others which I'm guessing is down to each individuals metabolism !
I would like to wish you and Angel and others with PBC all the very best !
Love to you all
Trish x
Hello I am 54 so similar in age to you I was told I had progressed to cirrhosis about 4 years ago and like you I was very upset and shocked.But my good news is that since then my condition seems to have stabilized and I have not got any worse.I am sorry you don't qualify for the trial I did not either as alkaline phosphate while elevated wasn't high enough.But after a couple of worse years my test results are actually better at the moment!So I don't think progression in this disease is always at the same rate even for the same person and for me it has slowed down I hope it does that for you too.At one time I really didn't think I would see my children grown up but I did and now I hope with luck to live for many more years even with my cirhosis.Jane.
Jane, this is lovely good news! Thank you for sharing. I'm sure it will be a great relief to tealmust. Long may we all get better and better.
Thank you Jane! That is good news and I am very happy for you and thankful to you for letting me know that as it makes me feel not so doomed. I probably would have been better mentally if my doctor had pulled me in for another appt to discuss my results but he didn't and I am sure that is because he knows more than I do that it is not an immediate emergency. I feel like I have the best doctor I could possibly have. I tend to panic. I am very much wanting to know what to expect and what to watch for that would make me need to get help. I tend to wait until I can't anymore before going to the doctor or emergency room due to cost and I am afraid I will have an issue that should be addressed and I will die because I waited to late to get help. I think this is part of the reason I was diagnosed so late because I was having issues and just thought it wasn't anything and it would go away. What signs would you have if you were bleeding internally with varices that kind of thing. Anyway, I probably ask the questions that have no answers. Thank you again for your reply
Can be years... I was supposed to be stage 4 at diagnosis and 20 years later finally needed a transplant!!!
So best wishes, things may not be how they seem....
I only had endo every 3 years... But I'm in England.
u need to be on the transplant list.Urso did not work for u for one reason: the liver was too damaged and urso is not working in this stage.Urso wash the bile ducts of the fluid that your liver is producing but in your case the ducts were damaged.The slow progresion is when u have healthy ducts.Now u must do the transplant.Is the only way in this stage.Keep us posted
if u have under 75 kg u can get only a part of liver fro healthy donner.If u have more kg u need the liver from a donner in clinical death
Hello tealmust
I gather you live outwith the EU. I was stage 4 from 12th June until I was re-diagnosed with stage 2, yesterday 8th July. I have been extremely exhausted. I am sorry to hear that you financially may not be able to access scopes.
I am sorry to hear about all you are going through. I was dx w/PBC in 1995 and my symptom was extreme itching where I would use a steak knife to scratch, often tearing skin. My doctor then told me 10-20yrs before I would need a transplant. I just figured I would not make it as I had six children I raised alone, a good job with benefits, but not that good! So I just started with Actigall, then replaced with Urso a few years later. I also was on Ocaliva, quit right away because of itching. Also, hydroxyzine for the itching, I used Sarna lotion, oatmeal baths and everything. Just kept going in for blood tests and visits for years. In 2011 I had Esophageal bleeds and was hospitalized. Had the bandings and transfusions, and that happened a few more times. In between I had to go for scopes also. Moving on the next few years were not horrible, more visits and procedures. Then about 2-3 years ago, I started noticing a big difference and my test showed the same. I started seeing a GI/Transplant doctor instead of my regular GI. After a few months they put me on the list for transplant, although I still had a lot of criteria to meet. Mostly my nutrition, went through feeding tubes twice, they never worked! So I was eating so much protein and they wanted my calories increased, I felt horrible. More procedures, I hemorrhaged once and lost over a liter of blood, fireman came since I was home alone and we live in the boonies. My daughter came and she took me to the hospital my blood pressure would not come up, they told me if they didn't stabilize it, it might not be good. I even had my husband call our priest. By the grace of God I made it I had edema so bad none of my shoes or clothes would fit. All I wore was huge sweats and men's slippers/shoes. I had a lot of pain and was up from 155 to 200lbs. Couple months later they took me off the list!!!! They said because of my nutrition, which is why they put me on. I was hurt, in disbelief and upset. My transplant nurse pulled me aside after the doctor told me I was off, and she recommended the Mayo. I came home and called my insurance, they said they would cover a second evaluation, then the CSR asked if I knew about my travel benefits. What! No I did not and was mostly concerned about the flying and trip expenses, I had family in AZ so I knew I could stay with someone. Then I called the Mayo and explained my situation. To shorten this, I made the call October 1, I was approved for and eval and was scheduled to go January 7 of this year. We were there a week for massive testing, one doctor told me I would die w/in a year w/o a transplant. They accepted me the next week and listed me right away. I live in WA. The nurse called and said I needed to be local, it would make it easier to move up the list. I flew back alone and stayed with my sister and her husband. They were the best caregivers ever and did so much for me. I was getting so homesick missing my husband, children and grandchildren. On March 19 they called and told me there is a liver for me. There were certain circumstances and risks. My sis and I went to the hospital and I was admitted, lots of testing and stuff. The doctor came in a few hours later and said the liver was good and we were going with the transplant. WOW! Totally through the miracles God performs everyday, and the many many prayers of my family, neighbors, church family and so many more, even people in Ruwanda my sister knew, this day was for me, all went perfect. None of the risks arose, all my follow up tests were awesome and everything could not have gone smoother. I was released March 26th, I had to go back 3xweek for tests and consults. April 9th they took out the staples and discharged me from clinic, I flew home April 15. I actually have to go back this week for my 4month check up.
After this long winded story, I just want you to know fight for yourself, call the prescription manufactures and check into their free or low priced programs, I did and it helped. Also fill out the papers for your procedures to get the charges reduced or written off. And don't ever give up hope, through the crying, sometimes depression, pain, frustration and all of it ……….Jesus is with us always, right beside us, we just have to put all our trust in Him. I don't know why He blessed me, I know I will find out.
I most certainly will be praying for you tealmust. God be with you
Thank you soo very much for this!!! GOD bless you also!!!! I am so happy for you and your family and I pray that ur new liver will stay well for you.
Hey,
Also, could you possibly tell me what I need to watch for that would let me know I need to get help. I don't want to be paranoid and run to the dr all the time but I also don't want to die because I waited too long to get help. How do you know you are bleeding internally? That kind of thing.
Thanks
I help my best, for me I knew because I felt a little off, weaker and just not right. Then I had a black stool, and then another w/a little bit of blood. I came home from work and googled what black stool meant. I phone my doctor and she told me to go to the emergency. The GI doctor that dx me years prior actually was just working the hospital now. It was another little miracle! I thought for sure this was something big, and it was, but not what I was scared of. He explained again what he told me in the beginning and what procedure they would be doing and that I would have a blood transfusion because my platelets were down, my first of several. They banded the little 'bursts' in the esophagus w/a tiny rubber band type thing and it was good. I had to repeat every six months for awhile, and had one more emergency room visit, but it seemed to be easier the more I had to go. Please do not every feel like you are bothering the doctor, that is the profession they chose, and you chose them. If you are uncomfortable, find another doctor. I had to do that a couple times too. Also, if you are having regular blood tests and check ups, you are doing all you can. But if you get concerned or scared even, make the call. There is also a website rarediseases.org/organizati...
they have al sorts of info and patient assistance, check it out.
I hope this helped, everyone has different symptoms and problems and how fast it progresses. Ask your doctor if he/she can list you for a transplant. If you don't agree, call the Mayo and they do a phone type interview and can let you know if you are ready for an eval. I was stage 4 for at least 4-5years, maybe longer. Don't quit or lose hope.
Still praying for you
Thank you very much!!
Stages of PBC
New diagnosis - early stage PBC
Stages of PBC-Prognosis-Next Steps?
Who out there has had pbc for over 20 years? I was diagnosed at stage 3. Have had stage 4 for 12 years.
