Pseudocysts to Heidi

[Guest guest]

Hi Heidi!

Thank you for your quick response! In regards to you helping the

technician locate your cysts . . . I had to chuckle. I guess we

learn early who REALLY is in charge of our health care. I bet you're

a wonderful patient to work with.

To answer your questions regarding my experience with a ruptured

pseudocyst, I'll give you a quick synopsis. First, the cause was

probably an ERCP that I had the day before. CT scans performed

previous to the ERCP did not show a cyst, so the dr. wasn't expecting

it. He was looking at the sphincter of Oddi to determine if this was

a problem for me. Because my pancreas is so sensitive, the dr.,

again, was not able to complete the ERCP, my pancreas immediately

reacted. The next day (at home with mild pancreatitis) I experienced

the worst pain I had ever had. By the time I got to the ER (five

minutes from my house), I had lost touch with reality. I don't

remember what they did in the ER. I woke up in critical care. So

when they ask what level of pain I'm in today, I tell them that #10

for me is losing consciousness so they can be accurate when accessing

my pain. Back to the cyst story, I remained in the hospital for

weeks and weeks, came home with a central line and I.V.s (I work real

hard to get out of the hospital, I hate it now), home health care

nurse, and diabetis.

As far as predictors of a rupturing cyst, mine was PAIN. I always

have a low grade fever so I'm not sure a fever is indicative of a

rupture. Unfortunately, I don't think I can give you a definitive

list of symptoms. I'm sorry.

In my case, my GI watches my cyst more closely when I get " bone

chilling cold " (vs. my constant low grade fever). I will go into his

office in June with a winter coat on cuz I can't get warm. Don't ask

me why this happens, we're all different when it comes to

pancreatitis. I have been warned to always know where hospitals are

located if I travel out of my area. As you seem to already know, a

ruptured pseudocyst is life threatening. According to my dr, I should

not have survived mine.

If you are one of those wonderful people who always tries to find the

positive in a negative situation; I did have a spiritual experience

while in ICU. Believe it or not, one night, an angel came to my bed

and without touching me, she lifted the sheet off my body like a

gentle breeze and I felt warmth and unconditional love fill me thru

my abdomin. I know it sounds like a drug induced " trip " but my faith

allows for these experiences. Anyway, my angel continues to support

me through the really hard times.

In regards to your statement, " . . . I'm always afraid that things

might actually be worse than I think they are " , I also wait too long

before seeking medical attention. Not good, we pay in the long run.

I have a Synchromed pump implanted in my abdomin to deliver my

morphine. Oral meds weren't working efficiently anymore, if ever.

Did you know that 80% of your oral pain meds is wasted? Not very

effective. In the past I had tried the Durogesic patches (allergic

reaction almost put me in the hospital), and all forms of oral pain

meds except Oxicontin (sp?). Dr never prescribed this to any of his

patients, now we know why.

I think that pain is the most important symptom for pancreatitis

suffers to gauge their condition. You are blessed to have a high

tolerance for pain but maybe this isn't always good. Do you

play " catch up " on pain control when you wait too long to seek

medical attention?

You stated that you have an abnormally small gallbladder and it looks

fine in the pics. My advice is to not put too much stock in those

tests. My gallbladder looked fine after an extensive " oblique " CT

scan, except for my level of excretion. It was over 86% and the

surgeon said a normal gallbladder functions at about 70% or less

effectively. He suspected my gallbladder was over working. After

discussing the results of these tests with my GI, he said, let's take

it out. So, I had the easy laproscopic removal with only mild/acute

pancreatitis after. When the tests came back from the lab, they

discovered that indeed I had a " sick " gallbladder. It was filled

with " sludge " and working too hard to process. Had I not had it

removed, it would have continued to contribute to my ill health.

I am afraid that there isn't alot of good news here regarding

pseudocysts. I hope and pray that you NEVER have one rupture. Do

you where a seat belt? My doctor told me that if I were in a car

accident and the seat belt caused trauma to the pancreas, it could be

real bad. But what should we do? It's a law, even though that isn't

what concerns me, it's not wearing a seat belt and the other

potential injuries. Oh well, I don't drive anymore and rarely go out.

I'm calling the dr about the jaundice. I have also had two bowel

movements that were black. Not good.

Thank you for the kind, supportive words, you made my whole day!

Take good care of yourself,

[Guest guest]

Dear ,

It is surely only your good fortune that you lived so close to the

hospital and they were able to save you from the life-threatening

effects of that rupture in time. I do believe that people's faiths

can allow for special experiences, and that your angel was not

only there while you were in the hospital, but looking over you

before you even arrived.

The hospitalization sounds like a horrible dream, except for your

enlightenment, and I can understand your anxiousness to get

home. I felt that way after only four days last month.....and I'm not

looking forward to having to be in there again so soon. I can

never get any sleep while I'm there.

I don't know how wonderful a patient I am, haha! The emergency

room nurse wrote that I evidenced " highly aggitated " behavior.

But I was irritated at the doctor, who kept asking me to verbally

tell them what meds and dosages I took, when I kept asking

them to read the medical history sheet where I had listed them

all. I was in shock and kept mixing up the names and amounts

of each and it was confusing me. Here at the PAI we advise all

our members to take in their personal medical history sheets

with them when they are admitted to the emergency room, to

make it easier for both patient and admitting personnel.....and

these people wouldn't even LOOK at mine. It didn't do me any

good to have it with me. No wonder I WAS aggitated.

Thanks for trying to explain what to look for and how it all

happened for you. It's probably a hard question to answer, but I

figured pain would most likely be the only indicator and have

heard that you pass out very quickly. There's little or no warning

with this thing.

I was playing catch up with the pain a lot before I started wearing

the patch. Now, when I'm wearing that, if ANYTHING bothers me,

I've learned to head for the medicine bottle right away. This

usually works out.

Strangely enough, as I was buckling my seatbelt the other day I

did wonder about that.....but I have never driven without a belt

before. I was in a practically head-on collision that totalled my

Jeep a few years ago, and the only thing that saved me and my

daughter were our seat belts and airbags, so it's one of those

things I can't comfortably drive without.

I do appreciate your help and all your advice. I feel much better

today than I did yesterday, and haven't needed any percocet at

all, so I'm happy about that. I go to see my GI tomorrow to find

out all the exciting news (NOT!) about my pseudocyst ultrasound

and what the plan of action is going to be. Wish me luck.

It really helps to have someone else to talk to that has been

there, and understands, your quick response meant a lot to me,

thanks.

With hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina

Southeastern Representative

PAI, Intl.

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

should not be substituted for professional medical consultation

> To answer your questions regarding my experience with a

ruptured pseudocyst, I'll give you a quick synopsis. First, the

cause was probably an ERCP that I had the day before.

The next day (at home with mild pancreatitis) I experienced the

worst pain I had ever had. By the time I got to the ER (five

minutes from my house), I had lost touch with reality. I don't

remember what they did in the ER. I woke up in critical care.

> As far as predictors of a rupturing cyst, mine was PAIN.

> If you are one of those wonderful people who always tries to

find the

we pay in the long run.

>