welcome

[Guest guest]

, welcome to the group. I'm so glad you posted. I live in Calif. I

was in Okie land for the get together.. What a wonderful time we had.

Sorry to hear you need us, but glad you found us. You will get all the

support you need and a lot of Laughs.

can't wait to get to know you better.

hugs

[Guest guest]

welcome debbie this group i the besr i have found out alot from everyone anna is

17 months old and is the baby of 4 girls and our first with cf she ws diagnosed

at birth with cf because of a bowel blockage and has been hosptalized 4 times

since her first 8 week stay after her diagnoses and is doing well she has been

on the growth chart evertime and you would never know she was sick by looking at

her i guess my advice is always ask questions never feel like you are one of

those over worried parents because this is your baby and you have every right to

know and understand everything that is going on i wish you all the luck and love

because our kids are the most special kids and it takes a special parent to have

such a special chid !!xoxo michelle mom of caiti wo/cf erin wo/cf moira wo/cf

and anna w/cf

[Guest guest]

Thanks so much for your reply and also to others that have replied

and welcomed me to the group. I am now VERRRRYYY glad that I found

you guys because I had my gastroscopy today and guess what??

Surprise, surprise........NOTHING showed up in the stomach/duodenum,

etc. Initial thought was that there was possibly an ulcer that had

perforated stomach wall and on into the pancreas. Gastroenterologist

was amazed at my knowledge at all of this stuff......mostly learned

from this site and my handy-dandy Merck Manual. Anyway, they have

now set up an MRCP for me next Wednesday......they also took blood

today after my procedure to look at the liver (huh??) and to get a

complete blood cell count (another huh??) If anyone has any ideas on

why these were done, PLEASE LET ME KNOW. I've a sort of reprieve

today as to the pain, although yesterday was horrible and I was just

inches away from going to the ER.......anyhoo.....if anyone knows

about the blood test things and also more about the MRCP, again

please let me know.

thanks so much for the support you've showed to me already....

> Hi . Welcome to our group. I just joined the group last week,

> but it has been a HUGE help!! We are all hear for eachother. I wish

> you luck with all your tests, keep us posted. Also, they told me

that

> there are some cases that they have no idea why they have this

> disease, I am one of those (although, my mother and I are trying to

> put it together and have come up with a medication that I was

taking

> in high doses for arthritis that she was recently prescribed and

one

> of the side effects...you guessed it...pancreatitis...so we're not

> sure if that's what did or not, doesn't matter....I definitely have

> it.) I am 31 and have had it since I can remember, but was only

> (finally) diagnosed in 2000. The last 6-8 years have been pure

> hell...but I still haven't given up hope. Someday we all will find

> relief - can't give up hope.

> Take care, we rooting for you!

> Rhonda

> Annville, PA

[Guest guest]

,

I am not what the blood work is supposed to show but I have had the MRCP done

before. When you get there they will give some wonderful drink and than after a

few minutes they will take you in and do the MRCP. It is basically an MRI that

shows the pancreas. There is absolutely not pain involved you just lay on the

table and you have to hold your breath during certain times but other than that

there is nothing much to it. It is a piece of cake. Good luck, and don't let

it stress you out because it is really an easy test to do. If I remember

correctly the drink stuff tasted kind of like flat orange soda.

Simi Valley, CA

[Guest guest]

,

The MRCP is another type of radiological procedure, supposedly better than

a CT-scan, yet less invasive than an ERCP. I've had 1 MRCP, 16 CT-scans

and 8 ultrasounds. In my opinion, each and every one of these procedures

are only as good as the technician that does them. It's sad, but true, that

there can be so much discrepancy between one report and another that is

purely a result of the skills of the technician that performs the test. It's

taught

me to always doubt any report that says everything's " normal " , or that " no

abnormalities were seen " . The reason I say this is because of what has

happened with me with three different hospitals and eight different

radiological technicians.

One cause of these problems, I believe, is that once a hospital takes the

patient's first CT-scan and makes a report on their findings, this first film

is on

record and it is this record that each successive technician in that facility

refers to. They will report increased damage, or things that look better or

worse, but usually everything is based related to what was seen (or NOT

seen, in my case) on their first film.

To explain, I have two large (6 cm.) pseudocysts in the head and tail of my

pancreas. They have been there since April of 2001. They decrease and

increase in size, yet never less than 2 cm. I've had ultrasounds and

CT-scans at one hospital where they were first filmed and monitored over a

period of two years. Then one month to three months later, I had films done

at another hospital three different times where the radiologist claimed he

could only see one pseudocyst, so repeatedly reported there was only one. I

went to private facility and that radiologist found both pseudocysts Same

thing happens with the ultrasound, and then the MRCP. One Dr. shows them

both on all films, the other Dr. finds only one! Then, even after all this has

been corrected and my GI has seen the films showing two, I have an acute

attack and end up being admitted at the hospital that made the first mistake.

They take another CT-scan, and after referring to their earlier films, say there

is only one. The day I was released my doctor sent me to a third hospital with

a clean slate, and guess what, the radiologist there finds BOTH cysts.

I didn't mean to launch into such a long story, (heaven knows, I talk too much

most times), but what I did mean to explain was why I'm often skeptic about

results that aren't what people expect, especially when there is a lot of other

evidence that proves contrary. Mistakes like this happen, and they can cause

a lot of delay, confusion and doubt when one is trying to get a firm diagnosis.

In my case, it was fortunate that there was no immediate need for accuracy,

or an operation wasn't pending based on the results of these films. It was bad

enough that it caused a few months of doubt between my physician and me.

The MRCP is a procedure done on a table similar to that which is used for a

CT-scan. First you will be was asked to drink 2 containers of some awful

tasting liquid, it wasn't the same taste as what you drink before a CT-scan,

but it was equally as unpleasant, in spite of what they said was chocolate

flavoring. Then you are taken to a room where the patient lies on the table, is

strapped down at abdomen and around the knees to keep from changing

position, and then the table slowly moves into a tubular shaped enclosure.

The patient is completely enclosed in this tube. Once the filming starts, you

will hear loud knocking and clicking while the magnetic fields are in use. If

you are at all claustrophobic, I would advise sedation. The only disadvantage

to sedation is that you have to have someone there to drive you home, but it's

well worth it if you don't like closed in spaces. I didn't have sedation and

regret that I didn't, because I found that after a short time the process made

me feel very anxious and antsy and it lasted much longer than I had

anticipated. I was in the tube for about 45 minutes. I was also very cold, so

I

would advise warm clothing and socks if you have a tendency to get chilled.

Someone later mentioned that they took a disc player with earphones and

played music while going through the procedure - this would have helped a

lot to have something other than the loud clicking sound to listen to. I was

shaking and feeling so nausious from the sense of claustrophobia when I was

finished that I don't even know if the distraction of music would have helped

me.

The MRCP is supposed to show even more than the CT-scan does. In my

case, they failed to film enough of my pancreas, which is positioned

abnormally in my abdomen, which resulted in another report that was

incorrect. I would hope that this wouldn't be a problem for you, and that it

will

show everything that you doctor expects, or doesn't expect, to find.

With hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina

SC & SE Regional Rep.

PAI, Intl.

Note: All comments or advice are personal opinion only, and

should not be substituted for professional medical consultation.

wrote:

I am now VERRRRYYY glad that I found you guys because I had my

gastroscopy today and guess what?? Surprise, surprise........NOTHING

showed up in the stomach/duodenum, etc. Anyway, they have now set up an

MRCP for me next Wednesday......they also took blood today after my

procedure to look at the liver (huh??) and to get a complete blood cell count

(another huh??)

if anyone knows about the blood test things and also more about the MRCP,

again please let me know.

[Guest guest]

Thanks Heidi......doesn't surprise me at all what you went through.

Geez, I wonder what happens to the poor people that are awaiting a

surgical procedure only to get this " guessing game " business? I sure

hope they can find something......he was curious as to possible

pancreas divisum and what else he didn't really comment on (the

doc). Well, we'll just have to see what happens I guess.

My 2nd thing is: how in the world do people that have to work for a

living manage to do it? I'm supposed to be going back to work next

Tuesday (in theory anyway)......guess you just have to take it one

day at a time. That's why I'm so hopeful that they'll find something

that we can say " ah, this is it....so now we move forward from

there " . Somehow, I have a feeling that is not going to happen and

I'll be left in this sort of limbo status.

Anyway, thanks for all the replies - I appreciate it!!

> I am now VERRRRYYY glad that I found you guys because I had my

> gastroscopy today and guess what?? Surprise,

surprise........NOTHING

> showed up in the stomach/duodenum, etc. Anyway, they have now set

up an

> MRCP for me next Wednesday......they also took blood today after

my

> procedure to look at the liver (huh??) and to get a complete blood

cell count

> (another huh??)

> if anyone knows about the blood test things and also more about the

MRCP,

> again please let me know.