All Blog Posts (26)

Dear Friends and Family of LivingWithPSC,

As you well know, living with PSC can be very challenging not only for you but to your families as well. This organization was built with a view to helping you and your families to live up to this challenge by linking you up with people who share similar experiences and have succeeded in maintaining a positive outlook!

Explore more how our community had helped members face the…

Mike Markey teaches physical education at West Essex High School in North Caldwell, New Jersey. He is also an assistant coach for the school’s wrestling and football teams. But his cheerful features and strong built belie a battle that he has been fighting for 10 years: the incredible bout with Primary Sclerosing Cholangitis (PSC).

Mike has been diagnosed with the condition in 2002, as a sophomore student and member of the wrestling and football teams of the College of New Jersey.…

I’m the co-founder of this site and help run a group called Ben’s Friends (www.BensFriends.org) that builds patient support networks for people with rare conditions. I do this cause I love it. I’ve met so many wonderful friends on this journey.

It all started when my buddy, Ben Munoz, had a stroke caused by a rare condition called AVM. Ben survived but during recovery he couldn’t find a support group…so he started one called…

LifeWithMultipleMyeloma Members, Friends and Family,

As we begin a brand new year, envigorated with greater joy and compassion, we renewed our greater commitments to our community. BensFriends grew tremendously in the past three years, and we want to take this moment both to thank you and to make a promise to continue fulfill our mission: to ensure that everyone in the world with a rare disease has a safe place to go and connect with others like them.

We’re…

Went to see the doc yesterday.  Had a blood test last week and they missed the liver enzyme test (yeah, the only one that was really needed!).  So after chatting with the doc for a half hour, I got that done.  Results to follow next week.

The doc basically said that they are going to schedule an ERCP test probably in the next month or so to take a look.  I don't want LOOKS, I want results!  Nothing seems to keep right on happening.  After no suggestion from my doc I finally…

can anyone guide me at what stage does one experience itching in PSC and in what areas is it felt, and is it frequent.

LivingwithPSC Members, Friends and Family,

We hope this message finds you well with high spirits and inner joy. We’re happy to inform you that our Primary Sclerosing Cholangitis (PSC) community continuously been growing. And as always, we’re here to give strength and support.

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IN THIS…

Since being diagnosed with PSC in September, 2011, I have gone from having severe itching to no itching at all.  My itching stopped about 4 weeks ago, but now I am experiencing non stop discomfort in my stomach. My stomach always feels and looks bloated.  Is this feeling typical for PSC patients? I had a MRCP done this past Wednesday, still waiting for the results. 

Thought I would let you all know - my doc wanted me to do another ERCP but I negotiated for 2months grace. I cut out alcohol and red meat and upped the gym tempo - I just did my latest blood test and all my enzyme levels were down 30%!! Levels are now marginally outside the norm. Stewart 1 - doctor 0!

Just had an MR/CP scan yesterday morning.  Waiting to hear back on the results.

Cholangiocarcinoma is cancer of the bile ducts.  I have been told I have abnormal cells.  They have been evaluated by three Cytologists who agree they are abnormal because they are missing chromosomes, but not cancerous.

I am going to have the tests repeated at Mayo Clinic in Rochester, Minnesota.  Have any of you been diagnosed with abnormal cells or carcinoma?  What did the doctors do?  Did it move you up on the transplant list?

Thank you for the…

Hi everyone. After several years of avoiding getting involved in support groups for PSC, I've finally decided that I would benefit hugely by connecting to other people in the same headspace that I'm in, trying to make sense of PSC and the many issues that come up along side of this.

I was diagnosed with UC at the age of 3, and 31 years later, at the age of 32 I was told I had PSC. The first few years were very difficult, trying to come to terms with the prognosis and what I…

Happy long weekend everybody,

So I was having an email conversation with someone about how my diagnosis has changed my life, and I remembered back when I first got sick how frightened I was.  The worst thing I had ever previously had was the flu, so being told that I had PSC came as a major shock.  Like so many people here, I had no idea what it meant, how to go about thinking about the future, etc.

As such, for anyone dealing with these thoughts, a major…

Hi Everybody,

So I'm back in the swing of things post holidays, but am really happy to see all the new faces and all the activity!

Thanks everyone for sharing your stories and your insight.  It's appreciated.

Hello All,

I am 65 and diagnosed with Stage 2 PSC/UC a year ago.  I have gone through the entire mood swing thing and tried to read stuff that is not too scientifically stiff.    I belong to yahoopscsupport group.  Finding knowledgable  caring mdical practitioners is very difficult for  the few PSCs…

Posted without comment.

I try and keep things light around here, but this is an interesting and important story.  We can talk about symptoms, meds, and such all we want, but all of us will need a donation at some point in our lives.

When Liver Donations go wrong

Hi Everybody,

Sorry its been a little while. I was incommunicado the last few weeks - my wife and I bought our first house and it sucked up alot of my time.

But welcome to all the new members and thanks for keeping the conversation going!

So a couple of things:

1) Apologies for all the WoW posts - i deleted them all and am trying to figure out what the heck happened.

2) Looking for suggestions on how we can make the…