We understand....

[DonnaBoll]

In my initial bio, I related to you that I had PBC for some 20 years before receiving a life saving liver transplant almost 19 years ago. In about 25% of those with liver transplants the PBC returns. We have to remember that our body still has the tendency to 'attack' it's own bile ducts and bile duct cells. The new liver does not change that or take it away.

About 3 years ago, my PBC returned in very early stages - noted only by some elevated liver enzymes again. I have been on Urso since 1985 with little side effects really.

This past week the fatigue for me has been a real reminder of what life was like for me prior to transplant. Moving one foot in front of the other has often been a real struggle. I do know how so many of you experience this 'fatigue'. Believe me, I am right there with many of you facing this challenge of this disease.

I really believe that by sharing how our 'not so good days' occur we can feel a sense of empathy that few understand outside of our world of PBC. Sharing with each other makes our group stronger and gives us a real feeling that someone does understand.

[4pjx__]

Dang! It’s a bummer it came back… or never left. You’re feeling the effects of it though and I’m sorry you still have to deal with it all again

Pam

[DonnaBoll Administrator in reply to 4pjx__]

thank you for your kind words. I just want us all to realize that we share many symptoms - yet we all experience PBC differently. The important thing is not to let this disease rule our lives.

[Cascade35]

Thank you for sharing your story. I only got diagnosed with PBC 14 months ago. But it is now twice in one week that I have read that now you are the second person who has had a liver transplant but the PBC has attacked the second liver. I’m so shocked as I had never heard that from my Dr, PBC Specialist or anyone. I wrongly assumed that when the infected liver was replaced that your transplanted liver would stay healthy? To go through the enormity and complications and stress of a liver transplant and you could potentially have it all start over again? That scares me and upsets me. How do you feel now you are getting those PBC symptoms back too? Especially the fatigue? Are you in the same mindset as you were the first time around?

[DonnaBoll Administrator in reply to Cascade35]

All good questions! when I was first told I needed a transplant I was 55 years old, had two grown children, waiting for my first grandchild, worked full time as a nurse and felt I had so many more years to live life. I did know that the PBC could return but now being in my 70's I have a very different mind set. I have been given almost 19 years of a wonderful life. Being still in the very early stages of the disease, I feel confident that i will die with PBC - not because of it. I have a wonderful life. We all need to live life to the fullest every single day. Yes, I guess I am starting over now but my symptoms of fatigue are intermittent and no itching. That is very different from the first time. The itching was horrible for me before. If I can answer any other questions, please don't hesitate to ask me.

[Cascade35]

Thank you so much for replying and sharing more of your experience. It’s so different for so many with PBC, the one thing everyone has in common seems Urso Acid. But the symptoms and severity of them differ, people’s diets, how often we get tested and which tests and so on.

[DonnaBoll Administrator in reply to Cascade35]

I couldn't agree more about how important it is for us to keep sharing. We are helping each other to see that we are all in this together no matter whether we have the same challenges or not.

[allotment]

Hello DonnaBoll, I am male and 77. I was diagnosed in 2001 and had a transplant in 2014 so in Sept. will have had 10yrs. of extra life. I have been told I still have PBC. I consider myself very lucky to be alive and forever grateful for our NHS.

The one constant issue I have is fatigue. This was before transplant and after. Been back in hospital a few times to have work done on liver but in the last two years I have had a number of illnesses, which has meant time in hospital. Had sepsis twice, Covid twice, diverticulitis, numerous ITUs and been diagnosed with osteoporosis. Not certain if my PBC has directly contributed to these conditions but the osteoporosis, I am told, is likely to have been caused by ten years of the steroid prednisolone. Also, has contributed to me being pre-diabetic.

I have given you more than my "not so good days" but as we know PBC affects us all in different ways.

Glad for the opportunity to share my experience with PBC DonnaBoll

[DonnaBoll Administrator in reply to allotment]

Thank you for sharing your pre and post transplant challenges. PBC has so many ramifications that we likely don't even know about yet. Hope you do well and keep out of the hospital. Walking is said to be extremely helpful for osteoporosis - if you don't walk already. Congratulations on 10 years of post transplant bonus years. It is truly a gift of life!!!