Newbe: Hi guys, Feeling a little lost and... - PBC Foundation

PBC Foundation

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Newbe

Rocket1172 profile image

Hi guys,

Feeling a little lost and if I was being honest scared in this new world of living with PBC, already read lost of your stories , reassuring and comforting to realise I'm not alone.

Lisa 49 from Fareham ( down south)🙃

9 Replies

Hello Rocket1172, welcome to the group although for sure none of us want to be here. I was diagnosed in 2006 and like you felt very alone it took a while for me to find my feet and find the PBC Foundation who have been a marvellous support especially through the pandemic. Their web site is the safest place to go t for information and it is free to join, although donations are always welcome. There are also peer groups on Facebook.

I am in the same area as you and attend QA under the care of Dr. Aspinall.

best wishes

Thank you so much for taking the time to reply, and welcome me in. I have joined the PBC foundation and even brought Christmas cards 🙃 and finding the site such a insight and helping me understand the condition more. Many thanks again . Take care.

gillrich profile image
gillrich in reply to Rocket1172

So glad you found the pbc foundation one big beautiful family xx

Hi there, thank you so much for taking the time to reply and welcome me, my journey started in March as I went into liver failure, but my doctor has been great and Dr Farrell is my consultant, working my way through new meds, having good and a few bad days, but like yourself I am a positive person and going to kick PBC back in its box, so all together we've got this 👍 again thank you got your time.Take care.

Hi, I am from Portsmouth too! Attend QA under Dr Riaz. Diagnosed just before we went into lockdown last year!

Rocket1172 profile image
Rocket1172 in reply to cvc20

Hi there, thank you for taking the time to reply, great to talk to someone in local area, my specialist is Dr Farrell, I have only seen him once as only diagnosed in May/June,my doctor has been great and started me on meds straight away, great to join this site as its so friendly,reassuring and a good insight into the condition itself, thanks again.

Don’t feel lost: You have many with you.Three years ago this coming February I was diagnosed with PBC at age eighty, revealed to me by my gastroenterologist in a surprise, short, evening telephone call.

I then read about PBC; and when I read the diagnosis on the practice’s website, I asked why they were discussing meds (Ursodiol) with me, when PBC appears to be terminal (presumably Stage 3, in my case).

Doc responded by saying he could see that I had read about PBC, but that they had had good experience with meds, and assuring me that I would not succumb from it, given its slow pace.

During this period of the pandemic, I faced my mortality as never before, but I seemed to feel “as I always had.”

I set a new (lower) weight goal, even though my GP said it wasn’t necessary; I did that based upon what I thought my ideal weight should be.

After a year of a more disciplined diet and continued daily (6 days/week), I am probably in the best shape in ages, possibly forever, with allowance for age and the (mostly undetectable) PBC, which was discovered via routine bloodwork and then a liver biopsy (I have not had a fibroscan.)

In warm weather, I ride my bike for an hour twenty-thirty minutes for 15 miles; in winter, I ride a Life Cycle at a nearby gym; three times weekly I add moderate weight work to my routine.

Except for dry eyes and back itching, I am unaware of symptoms.

I have a good life; I am sure that you can, too!

Feel free to ask questions.

All the best!

Don

Rocket1172 profile image
Rocket1172 in reply to Stub007

Hi Don, thank you so much for taking the time to reply to my message, so encouraging to see your positive story, like yourself I am a very positive person, and mental attitude is half the battle I am sure, I have been stopped in my tracks with the illness as I was initial miss diagnosed and was in liver failure, so the meds for me were life changing as managed to boot the illness back into its box!! Having good and bad days, but like you say.. we've got this 👍 thank you again for you time.Take Care

Lisa

Hi Rocket- deep breath! It sounds scarier than it actually is. The meds (Urso) works very quickly bring your enzymes down. They have been watching my liver for the past 9 years- eventually leading to taking medication daily. Has my life changed? Yes, a bit - but not much. For me, the meds are tough on my system (diarrhea mostly).You may feel fatigued , or some aches. Some recommendations: keep moving!!! Do not sit around all day. I happen to walk dogs, so everyday I’m out getting fresh air and exercise.

Try and eat “healthy “ - my meaning of that is more fruits, veggies and lean meats and fish.

Some people go on plant based diets- or cut out everything… that’s not for me. It is an extremely slow disease. With each year that goes by, they will find new drugs and new ways to treat PBC.

My doctor says this by NO MEANS is a death sentence. You will live a long, happy life if you choose so! Good luck - take meds, take care of yourself ( yes, I still have a cocktail on occasions).

The unknown is scary - you are not alone!!!

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