New to the group, recently disagnosed, a little scared...

[Guest guest]

Hello all,

My name is Severin, and I was recently diagnosed with PSC (diagnosis

date: 11/21/2007). I'm not sure what to expect, am a little scared,

and am hoping to find some help from this forum.

*** The Medical Side ***

I am scheduled for an ERCP procedure and want to know what type of

information I should be looking for from the doctor. Does anyone out

there have a good list of questions that I should be asking at this

stage? For example, what are my options today for medicines, how

early to be on the transplant list, etc.

I went to the doctor in Mar 2006 after 3-4 months of nausea and

vomiting about once/month. The first few months we attributed it to

the flu or some other virus brought home from our school age kids.

After month #4, we decided it was time to go to a dedicated doctor,

and not just the clinic. One month later, after a primary care doc,

an ultrasound, a " how's my gall bladder performing " radiation test,

and a surgeon, I had my gall bladder removed in April 2007. I

continued to have the same symptoms and went to a new primary care

physician in September. I was seem by a nurse, who told me I had

GERD and gave me Aciphex. I wasn't satisfied and went to a

Gastroenterologist on my own in October. After many tests (blood

work, Upper GI, MRCP, endoscopy, colonoscopy) he concluded I had

PSC. I am now going for an ERC with another Gastro doctor and am

scheduled to meet with a liver specialist here in Houston. After the

various tests, it was determined I have moderately severe gastritis

(with non-cancerous nodules in the mucosal layer) and moderately

severe ulcerative colitis (ascending, transverse, descending). They

also show the " bumpy " strictures of the bile ducts, when combined

with the other items, is indicative of PSC.

Other than the occasional nausea and vomiting, I feel OK. I don't

have any itching, fatigue (no more than a father of three young girls

and a husband of an 8.5 mo. pregnant wife should have...LOL), or

other issues thus far.

You know, I think that's the first time I've written it all out

before. It feels…better, actually.

*** The Personal Side ***

Right now, only my wife, two friends, and now all of you know about

this. My wife is pregnant with our fourth baby (we have three girls -

7, 6, 18 mo. and this new one is a boy). I know she's as scared as

I am. We have read as much as possible from this forum, and the

various websites, to learn about PSC and what we can expect from the

disease.

Let me stop for a minute and say how touched I am by the level of

honesty and caring I see on this forum. I realize many of you have

dealt with this for longer than I have, and I am taking my cue from

your examples of courage, strength, endurance, and willingness to

open up.

I don't really know who to talk to about this disease yet. When I

told my two friends, neither one knew what to say (can't blame

them). I don't want to just talk with my wife about it, because we

are both equally scared, ignorant about the disease, and I don't want

to get her more worried than necessary. I feel alone, a bit scared

and unsure how to process everything I'm learning. I'm preparing to

tell my greater family (Mom, Dad, sisters, etc.) and am unsure how to

approach it. Do I send out the information in the yearly Christmas

mailer (what a downer!)? Do I send an e-mail? How do I tell those I

love and care about without seeming like I'm begging for attention

(which I'm not, I think). All I know is that if this was happening

to one of my family members or friends, I would want to know, and

that's why I want/need to tell them.

If anyone has any good lists of questions, and or advice, it would be

very much appreciated. Also, what information should I be tracking

personally? I am keeping a daily diary of what I eat, how I feel,

etc. Also, I am tracking all of my doctor appointments. Should I

track my own test results, blood chemical levels, etc? I know all of

you have already gone through this, and I hope you can help

this " newbie " get his feet on the ground.

Thanks in advance for any help you can provide.

Severin Garanzuay

[Guest guest]

Severin-Welcome to the group. You have indeed found a great resource. Many people live many years with PSC and never experience problems, others well not so lucky. Take a deep breathe and know you are in the right place. The ERCP will give the docs an idea of stage of your PSC. It will also allow them to dilate any narrowed ducts. There are many purposes for the ERCP, it is a pretty standard test for PSC patients. You and your doctors will be able to determine if and when you ever need to be transplanted. They will probably know better after the ERCP. I suggest going to http://www.pscpartners.org/brochures.htm and reading the brochures. Good luck and welcome.-Brother, , 31, UC & PSC

Hello all,

My name is Severin, and I was recently diagnosed with PSC (diagnosis

date: 11/21/2007). I'm not sure what to expect, am a little scared,

and am hoping to find some help from this forum.

[Guest guest]

Welcome to the group! I am fairly new to all of this too. I would

suggest you tell those who are close to you personally about your

diagnosis. People do not know what to say and I just tell them that it

is okay not to know what to say, because I do not know what to say. At

first it seemed I felt the need to tell everyone, but now I am more

conservative about who I tell. Sometimes it is nice to be able to go

somewhere and not be asked " How are you feeling. " and saying fine when I

want to say crummy! Talk to your spouse about your feelings and let her

talk about hers, otherwise it is like not talking about the big pink

elephant in the room! But do find a trusted friend who you can talk to,

it may help you work through your feelings. Again welcome to the group,

it is very informative and helpful.

>

> Hello all,

>

> My name is Severin, and I was recently diagnosed with PSC (diagnosis

> date: 11/21/2007). I'm not sure what to expect, am a little scared,

> and am hoping to find some help from this forum.

>

>

> *** The Medical Side ***

>

> I am scheduled for an ERCP procedure and want to know what type of

> information I should be looking for from the doctor. Does anyone out

> there have a good list of questions that I should be asking at this

> stage? For example, what are my options today for medicines, how

> early to be on the transplant list, etc.

>

> I went to the doctor in Mar 2006 after 3-4 months of nausea and

> vomiting about once/month. The first few months we attributed it to

> the flu or some other virus brought home from our school age kids.

> After month #4, we decided it was time to go to a dedicated doctor,

> and not just the clinic. One month later, after a primary care doc,

> an ultrasound, a " how's my gall bladder performing " radiation test,

> and a surgeon, I had my gall bladder removed in April 2007. I

> continued to have the same symptoms and went to a new primary care

> physician in September. I was seem by a nurse, who told me I had

> GERD and gave me Aciphex. I wasn't satisfied and went to a

> Gastroenterologist on my own in October. After many tests (blood

> work, Upper GI, MRCP, endoscopy, colonoscopy) he concluded I had

> PSC. I am now going for an ERC with another Gastro doctor and am

> scheduled to meet with a liver specialist here in Houston. After the

> various tests, it was determined I have moderately severe gastritis

> (with non-cancerous nodules in the mucosal layer) and moderately

> severe ulcerative colitis (ascending, transverse, descending). They

> also show the " bumpy " strictures of the bile ducts, when combined

> with the other items, is indicative of PSC.

>

> Other than the occasional nausea and vomiting, I feel OK. I don't

> have any itching, fatigue (no more than a father of three young girls

> and a husband of an 8.5 mo. pregnant wife should have...LOL), or

> other issues thus far.

>

> You know, I think that's the first time I've written it all out

> before. It feels…better, actually.

>

>

> *** The Personal Side ***

>

> Right now, only my wife, two friends, and now all of you know about

> this. My wife is pregnant with our fourth baby (we have three girls -

> 7, 6, 18 mo. and this new one is a boy). I know she's as scared as

> I am. We have read as much as possible from this forum, and the

> various websites, to learn about PSC and what we can expect from the

> disease.

>

> Let me stop for a minute and say how touched I am by the level of

> honesty and caring I see on this forum. I realize many of you have

> dealt with this for longer than I have, and I am taking my cue from

> your examples of courage, strength, endurance, and willingness to

> open up.

>

> I don't really know who to talk to about this disease yet. When I

> told my two friends, neither one knew what to say (can't blame

> them). I don't want to just talk with my wife about it, because we

> are both equally scared, ignorant about the disease, and I don't want

> to get her more worried than necessary. I feel alone, a bit scared

> and unsure how to process everything I'm learning. I'm preparing to

> tell my greater family (Mom, Dad, sisters, etc.) and am unsure how to

> approach it. Do I send out the information in the yearly Christmas

> mailer (what a downer!)? Do I send an e-mail? How do I tell those I

> love and care about without seeming like I'm begging for attention

> (which I'm not, I think). All I know is that if this was happening

> to one of my family members or friends, I would want to know, and

> that's why I want/need to tell them.

>

> If anyone has any good lists of questions, and or advice, it would be

> very much appreciated. Also, what information should I be tracking

> personally? I am keeping a daily diary of what I eat, how I feel,

> etc. Also, I am tracking all of my doctor appointments. Should I

> track my own test results, blood chemical levels, etc? I know all of

> you have already gone through this, and I hope you can help

> this " newbie " get his feet on the ground.

>

> Thanks in advance for any help you can provide.

>

> Severin Garanzuay

>