Re: Re: URQ Pain - description bile blockage pain?/ERCP:

[Guest guest]

--- Sny dlrepmn@...> wrote:

> ,

>

I continually have a problem with sludge and stones

> and the pain

> usually increases as time passes.

,

I am in the same boat like you and the pain has

increased dramatically, during the last few months.

> Every ERCP results with sludge and stones " it was a

> good thing we

> scheduled it " " you needed it " . I have a deal with my

> doctor at the

> transplant center who is also the medical director

> of the program. I

> have been at this long enough that I know when I am

> sick and when I am

> not. So if I call in at all, you know I am hurting

> and something needs

> to be done.

I am like you. I know when i am sick and when i am

not. Every few days, i suddenly start to feel weak,

specially at the end of the day when i am more tired.

Any extra effort would make me more sick. So i start

to have chills, shaking sometimes and followed by

fever at times. If fever [infection], then i do rush

to take cipro Rx [5~7days] that i keep w/me.

It is wonderful that you see the Tx medical director.

Good for you.

> For the first 3 ERCP's I had a stent installed. I

> recovered and was

> fine for a while, then it would start all over. They

> are not pleasant

> procedures. I am trying to get as much time out of

> them as possible,

> but I know that there is a reason for me and it

> makes me feel better

> and I am able t

o function again. I know the rational

> of why do it if

> you can get along without it. For me at least I have

> no choice.

Exactly. Myself, the same.

>They have said " it's only a matter

> of time and you

> will get sicker " . Until then I am going to live a

> full life and have

> some fun.

PSC is a very unpredictable disease, you know. And

every system functions differently. I don't think they

should tell you that. I have my moments, too. A lot of

anxiety and fear, sometimes. But i keep training

myself to be more positive and to take one day at a

time in faith, whenever i can in my tough journey with

this disease. More than one doctor told me thati might

probably loose my health and life from worry, more

than the diseases, itself. You, yourself do have the

right determination to live a full life and to have a

lot of fun. That is great.

> I just completed a two tank dive in Grand Cayman on

> a cruise and had a

> blast in every destination. Swam with the dolphins

> in 10-15 foot waves

> with my daughter. You may as well try to have fun.

> You are no fun to

> be around when you feel sorry for yourself, so my

> wife says anyway.

>

Oh Waw! And Specially swimming with your daughter at

the same time. And your wife by the way is very right.

We should try not to feel sorry for ourself, at all. I

think experiencing a disease as PSC is life changing.

It makes one really appreciates what we use to take

for granted in life. Even simple things.

>

> Maybe it was the new Hep, maybe it was that he is

> not a big fan of

> stents. He says they get plugged quicker than going

> without if you can

> do it. He said the duct didn't collapse.

>My doctor also did not like to stent. He also

mentioned another reason that i don't recall right

now.

>

> I have felt the best I have in years.

That is wonderful and so encouraging, of course.

I freaked out at first just like everybody else

> does. But thanks to

> Arne, Barb, and the others that either have walked

> in your shoes

> already or are directly involved as a caretaker and

> see it on the

> other side, they calmed me down as time went along.

> Thank god I found

> this site during a google search since none of the

> doctors mentioned

> it. They should be giving out the PSC literature

> anywhere in the

> country and most times they do.

>

This site was like a miracle to me. I was reading,

searching, and questioning to may be catch something

about PSC. Then i heard about the site from someone.

But i could not find what the link that he gave me for

some time. And finally when i did, it was like i knew

nothing but like every door was opened for me. I

learned and i am learning. Just an ocean of knowledge

and real life stories of struggle for survival. Plus

the very major part of the wonderful support and

encouragement all along the way. Really, amazing.

, good luck to you, too and my best wishes for

you for complete healing.

Good Luck!

>

> I hope you feel better!

>

> in Minnesota

> PSC 2006, Factor V Leiden

>

>

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