Thursday's Thoughts

[DonnaBoll]

What have you found to be the greatest challenge for you since diagnosis?

[Samanthaann]

Always wondering what’s next? How will labs be? Is this or that pain from PBC?

[DonnaBoll Administrator in reply to Samanthaann]

It's like waiting for the shoe to drop sometimes, isn't it? I wish everyone can get to the point where this isn't always in the forefront of their mind. Being consumed by the 'what ifs' can be exhausting and often causing us to miss what's happening that is positive right in front of us. Lab work is always a trigger for sure. I keep telling myself I can't control these results.

Sorting out 'what causes what' can be such a common occurrence especially if you have more than one autoimmune diseases as many members do. I always try to encourage everyone to at least mention anything 'new' to your doctor. If you gut tells you that something is wrong, then follow that feeling. Don't assume that is likely nothing. We don't want to make the mistake of dismissing something that we really should follow up on. PBC isn't responsible for everything that happens to us. PBC is not easy by any means. We all need to continue to encourage each other and yet know when we need to seek additional medical help.

[FarahS]

Same for me…and the itch. Sometimes it’s ok other times it pops up at an inconvenient time like when I’m in the middle of a yoga class 🙈

When ever I get upper quadrant ‘ache’ sometimes I get relief from just (sorry for the detail) relieving ‘gas’ and it makes me think is it the PBC or just indigestion or perhaps both? It’s constantly wondering if my PBC getting worse.

[butterflyEi]

Much the same as the other contributors. Also trying to make people understand that it is not drink related.

[DonnaBoll Administrator in reply to butterflyEi]

There is still SO much education yet to be done - even in the medical community unfortunately. This was one of the driving forces that The PBC Foundation with others really pushed to get the name changed from Cirrhosis to Cholangitis. I think it's still that 'liver' disease stigma that has to be changed. Are you challenged with itching and fatigue much? what seems to help?

[butterflyEi in reply to DonnaBoll]

My itch is medicated with Gabapentin, Sertraline and L-Methionine since the tIme of Covid when medication was scarce, before Rifa m picin was my life saver.

[DonnaBoll Administrator in reply to butterflyEi]

Thanks for sharing some meds that have helped you.

[Samanthaann in reply to butterflyEi]

I deal with the same. I now say I have an auto immune that affects my bile ducts. I don’t even mention liver.

[DonnaBoll Administrator in reply to Samanthaann]

good idea for sure... hopefully keeps them from forming preconceived notions of what PBC is.

[Giraffe44]

Hi Donna

Same worries as everyone else- anxiety when nearing blood results/ fibroscan in case worsening disease. Overwhelming fatigue at times and having to cancel/ rearrange plans at the last minute. Challenge of being forced to pace self and activities, frustration at not being able to do what I want and being unreliable. (Try not to be self pity and moaning though!)

[DonnaBoll Administrator in reply to Giraffe44]

All of these, unfortunately, are valid thoughts and feeling so many of us have. Just never know how we will feel one hour to the next. I know for some it has greatly affected their social lives, sometimes even losing friends over it. We do have to make adjustments to say the least. I love your phrase of "challenge of being forced to pace...." It is a challenge, isn't it?! It's new and something we've never been asked to do before. Thanks for your response. I have no doubt many feel the same way.

[HB70]

Getting to see a consultant. I was diagnosed 4 years ago and have never seen anyone in person, I've had 3 telephone consultations - the last of which was shorter than 2 mins. Helen

[DonnaBoll Administrator in reply to HB70]

If you live in the US, all I can say is that our medical system leaves much to be desired. No matter where you live, someone should be seeing a doctor at least once a year. Do you feel their care is competent? Are you an Urso responder?

[HB70 in reply to DonnaBoll]

I am in the UK. Fortunately I was diagnosed early and am not experiencing any symptoms now I'm on urso. I'm lucky in that respect x

[DonnaBoll Administrator in reply to HB70]

Glad to hear you are finding that Urso is working for you. How often are you getting lab work done? Hope your numbers are good - Being symptom free on Urso is great! You are lucky for sure.

[HB70 in reply to DonnaBoll]

I usually have blood tests once a year but only if I push for it. The NHS is under so much pressure since COVID and government cuts.

[DonnaBoll Administrator in reply to HB70]

Is there anyway you could at least get them done every 6 months? I would just be afraid that waiting that long might miss something beginning to change. I assume you live in the UK.

[gwillistexas in reply to DonnaBoll]

I feel there are many of us who get very good care from our medical system. My rheumatologist ran labs Wednesday, CMP being one of them. My hepatologist comes from Dallas every Friday. For whatever reason he viewed my labs. My ALP is not where he wants it. His nurse sent a message that there is a drug or two that is close to being approved by the FDA that he will probably try me on. Ocaliva is no longer keeping the ALP at an acceptable level. So all that being said, I have exceptional care with him. I do feel bad for those who unfortunately do not have the level of care they deserve.

[DonnaBoll Administrator in reply to gwillistexas]

It certainly does sound like you are being well cared for. He obviously keeps up with the new research on drug therapies. I do feel sorry for those insurance plans have such outrageous deductibles and not good coverage anyway.

[gwillistexas in reply to DonnaBoll]

Yes he keeps up and attends conferences from time to time.

[Rozzie52]

I hate having to factor in, that if I have social event, how will this affect me the next day , allowing to have rest days , I get fed up of not being able physically to as active as I was

[DonnaBoll Administrator in reply to Rozzie52]

I do 'get this'. We wonder what price we will have to pay if we maybe overdo one day. When we really want to do something or go somewhere, it can be a real struggle about what we should do and want we want to do. Socially, PBC, can have some real negative effects. I hope in time we learn what each of our bodies are capable of - and when. We still want to live life and enjoy the company of friends and family but we need to be realistic as well. This can be very frustrating. Lately I have been struggling with fatigue. Makes me feel like I am wasting my days - especially having gorgeous weather here last few days. There is nothing easy about having PBC for any of us. Just do what your body tells you... not always what we want to hear though.