Thursday's Thoughts

[DonnaBoll]

What is your biggest fear about having PBC?

[TallSurfer72]

needing a transplant, or worse—death from this disease

[DonnaBoll Administrator in reply to TallSurfer72]

I've read so often the fear someone has about having to have a transplant. Having had one 19 years ago, I can tell you that it is a life changing event for sure. Be reassured that very few people die from PBC - they die with it. Even Dr. Jones tells us that the risk for the people who are diagnosed early in the disease and "who are treated to the full extent of our current abilities (the need for transplant) is vanishingly small". I know there is likely in the back of most people's minds who have PBC though. I'm sure you are not alone. This might be a good topic to talk about more here on the site.

[Wocket]

Itch. I had it before diagnosis and I struggled to sleep. Thankfully Urso cut down my itch but I never want to have it bad.

[DonnaBoll Administrator in reply to Wocket]

Glad the Urso helped with the itching. I know from personal experience that itching can be life consuming. Nights were always the worst for me for several years. When it affected your sleep, I'm sure your whole day was affected as well.

[nan1012]

I have a large family- six grown children and 10 grandchildren. I fear that I won’t be able to be a very involved grandmother due to my persistent fatigue. The 2 closest grandchildren are about an hour away- but I do see them pretty often. The rest are 2 hours and 10 hours away. I have a lot of spine pain from disk disease, arthritis and osteoporosis, so very long travel is challenging, but my husband is very helpful so we go as much as we can and rest when necessary. I’m not really afraid about the disease of PBC- I promised God I would not be afraid when I started feeling sick in 2010 and was diagnosed in 2012, and most days I keep that promise. I’ve just retired from being an accountant- I won’t miss the work and deadlines, but I will miss the people. I have to try not to get too isolated. I am able to be pretty busy for a couple of days and then rest a day or two. This last year has been harder due to increased pain in my neck and back along with headaches, fatigue and nausea, but my doctor is helping me manage my symptoms. I am grateful that I have family support and some understanding of the effects of PBC. I feel for those with children at home and/or having to work full time, and those whose partners or families don’t help. I can’t imagine how difficult that must be. Blessings to you all.

[DonnaBoll Administrator in reply to nan1012]

Thank you for sharing all of your thoughts and health issues of late. I totally understand, as many of us surely do, how the fatigue can affect our relationship with so many important people in our lives. I heard someone say several years ago that she just told her grandchildren that she needed to rest (or simply sit down) some days - children understand more than we give them credit for sometimes. I hope you get continued help with your neck and back pain as well as the headaches. Having family that supports you is such a blessing for sure. When our mobility is affected in any way, it really impacts our whole lives it seems some days, doesn't it? I have found water exercising so helpful with my mobility. I'm not sure if it is available anyway nearby but I attend classes thru a local YMCA. Let us know how you are doing whenever you feel like sharing - or venting.

[Mofusdog3]

Initially it was just the fear of the unknown , along with dismay or anger for getting an autoimmune disease. Search on Google resulted in thinking I had 5 years to live. NOT! Now it is no more significant in my life than having high blood pressure. Take the pills and hope for the best.

[DonnaBoll Administrator in reply to Mofusdog3]

Google can give us so much misinformation - information that we can't 'unread' but find out is not true. Love your attitude! Live life ! Someone who responds to Urso has just the same life expectancy as someone who doesn't even have PBC. Keep on living life to the fullest!!

[Redpandatime]

I agree about Google Donna! Blood tests yesterday showed severely high GGT. I’m mostly scared about not being able to work, as I am divorced with a student son and things in the UK are getting ridiculously expensive. I have fatigue, some itching and joint pain, largely power through, but results like that do cause me to worry. Never mind, I couldn’t tolerate Urso as I put on 2 stone in 2 months despite eating 1200 calories a day on a strict regime. Came off in September 2023 as I had to have 2 (unrelated) major operations, including a full removal of ovaries. So possibly expected. So OCA is the next step. I will see it as a new beginning. And try not to overthink, although it’s been a tough 6 months! 🙂

[DonnaBoll Administrator in reply to Redpandatime]

First of all, I'm so sorry I didn't reply sooner. I was actually at a 'Food Retreat' all weekend and likely missed some posts.. What made you think you couldn't tolerate it other than the weight gain? Did it improve your liver numbers? That's a very short amount of time to be on it to see if it's going to be effective. With the really high GGT, I would ask if you've had any scans (MRI) or ultrasounds lately? If not, that might be helpful to see how your bile ducts look. Now with the fatigue, itching, and joint pain you are really having to deal with it all, aren't you? Just my opinion, but I would give some thought to trying the Urso again (make sure it's the right dose). We often have to weigh a side effect against the big picture of how it might be helping our overall disease. You already have shown that you can control your eating. Just a thought..... I would ask about your doctor looking at the bile ducts though as a possible cause for the elevated GGT. Please let us know how you are doing.

[Redpandatime in reply to DonnaBoll]

Hi Donna, thanks for the reply! I was on the Urso for 1.5 years in total and while it reduced my numbers a little, they didn’t come down as much as we would have liked. One good piece of news is that Ivwas on antibiotics (flucloxcillin) for an ear infection when I had my blood test and apparently that can elevate the GGT severely. We will try another blood test in about 30 days, the doctor says. Fibriscan was excellent with no scarring and do I remain hopeful! I hope your retreat was good, it sounds very wholesome ❤️

[DonnaBoll Administrator in reply to Redpandatime]

Glad to hear you were on Urso for 18 months or so. Any type of infection or stress situation can increase your alk phos as well. Hopefully all will be better in another 30 days or so. So glad your scans were good with no scarring. You certainly should be hopeful. Sounds like you are being well taken care of. According to Dr. Jones' book, Ocaliva can be taken in conjunction with Urso or for some taken alone. Maybe your doctor has discussed this with you. I would suggest you make sure when you have your lab work done a CMP is included... this checks for kidney function as well as electrolyte balance. CMP stands for Comprehensive Metabolic Profile - I know with Ocaliva it can, for some, increase your cholesterol. This should be checked as well. Please let me know how the Ocaliva works for you.

[Cumbria7]

my biggest fear is the total lack of understanding that other people have about the disease, even family members don’t fully appreciate the debilitating side effects this has on your everyday life xxx

[DonnaBoll Administrator in reply to Cumbria7]

Thanks for your reply. Educating the public, much less health care professionals, is a long standing effort. Trying to explain a disease that we, ourselves, don't fully understand can be a long process and often frustrating to do. I personally feel that the fact that 'we look good' despite how we feel, makes it hard for many friends and family to really know how I'll we are or how badly we feel. They see us looking healthy....PBC is just plain hard. I like the word 'debilitating' that you use. That is so often the right word for how some days are for us. Fatigue can make a day almost impossible to function thru. It's important for you to get as much information as YOU can about this disease. The PBC Foundation has so much on their website. Hope you belong to that organization - it's free to join. The Canadian PBC Society and the American Liver Foundation are helpful as well. You can just Google these sites. Please feel free to ask any questions here -anytime.