Re: New to the group, recently diagnosed, a little scared...

[Guest guest]

Severin,

I'm glad you found the support group at this early stage of your diagnosis. When

I was diagnosed I got a lot of very antiquated information from the physician

who did my ERCP. All of it was bleak to say the least. I eventually made my way

to the Mayo clinic and had Dr. Lindor take my case and found out their was

a lot of life left to live. This was in 2001. I have been asymptomatic since

that time and because of the ages of my three children and the many activities

they pursue, I have little time during the day to dwell on my PSC future. It's

only when I take the many pills or visit the support group do I fill my head

with what if's.

My suggestion is to go to our PSC Partners Seeking a Cure web site

www.pscpartners.org and send away for a PSC Brochure. You can then hand your

immediate family this great source of information which provides an acurate

explanation of what our disease means to all of us....families, friends and

patients.

I definitely recommend keeping a record of all your blood work and medical

procedures. There have been many anecdotal references to the benefits of keeping

a journal of documents and correspondence.

But most of all, lean on your loved ones. They will help you uncover the

mysteries of living with PSC. And please keep in mind as you read the many posts

here that everyone reacts differently to the disease. The only consistent theme

is that there is no consistency among us.

Good luck with your ERCP. Please let us know how it goes.

Tarheel Tim

[Guest guest]



On the PSC website under Folders, there are blank forms that you can use to track your labs, list your medications and a wallet size card. When traveling, I take a few key medical records forms for - current medication list, recent labs, key test results (MRCP, ERCP, abd CT, colonoscopy report), plus the last visit or two to his GI MD. I also take an article or two on PSC, as many in this group have landed in an Emergency Department where the MD wasn't familiar with PSC. Also, I have learned (the hard way) to always carry a few extra pills with me - we have wanted to stay overnight somewhere and had to come home because of no meds. We have been out to eat and has been miserable, when one extra Nexium would have helped tremendously.

It is not unusual for friends and family to not know what to say when you talk about health issues - especially if they are not familiar. I have erred on the side of more information - especially after another parent did not allow her son to come over for weeks - until I spoke with her and she said "So it's not contagious???" , as a teenager, is very clear what he talks about with friends and adults. He will speak freely about PSC, but will not broach the topic of UC, as "that's gross, that's poop". Oh well!

I have been amazed, over and over again, how caring and supportive people are when they hear about PSC and what it means to an individual. I have been astounded at the support that friends, family and co-workers have given to support Partners Seeking A Cure and the fundraising for PSC research.

Lastly, Severin, to you and your wife and your family - I remember so vividly hearing the diagnosis of PSC. As a nurse practitioner, all I could remember and see at the time was "Liver Transplant". I was overwhelmed and petrified. But what I found was primarily through this group and all the exchange of information and all the caring responses, was a much greater understanding and comfort level. My fears and anxieties diminished greatly. I am so glad you found this group. You may also want to try, if possible, to attend the PSC Conference in May (we'd love to see your babies!). The PSC conference is a superb way to meet those who you know via the postings and to learn so much.

Take care.

Joanne H

(, Ca., mom of , 17, UC/PSC 2-06; JRA 1998)

Re: New to the group, recently diagnosed, a little scared...

Severin,I'm glad you found the support group at this early stage of your diagnosis. When I was diagnosed I got a lot of very antiquated information from the physician who did my ERCP. All of it was bleak to say the least. I eventually made my way to the Mayo clinic and had Dr. Lindor take my case and found out their was a lot of life left to live. This was in 2001. I have been asymptomatic since that time and because of the ages of my three children and the many activities they pursue, I have little time during the day to dwell on my PSC future. It's only when I take the many pills or visit the support group do I fill my head with what if's.My suggestion is to go to our PSC Partners Seeking a Cure web site www.pscpartners.org and send away for a PSC Brochure. You can then hand your immediate family this great source of information which provides an acurate explanation of what our disease means to all of us....families, friends and patients. I definitely recommend keeping a record of all your blood work and medical procedures. There have been many anecdotal references to the benefits of keeping a journal of documents and correspondence.But most of all, lean on your loved ones. They will help you uncover the mysteries of living with PSC. And please keep in mind as you read the many posts here that everyone reacts differently to the disease. The only consistent theme is that there is no consistency among us. Good luck with your ERCP. Please let us know how it goes.Tarheel Tim