(No subject)

[Guest guest]

Note: forwarded message attached.

=====

" A real friend is one who walks in when the rest of the world walks out. "

__________________________________________________

[Guest guest]

Hi All and Karyn,

I don't know what is upsetting those that are upset, but if it is because

some of the postings, there is no reason to be upset. I think Karyn just

wants us to keep our postings down to the wire so to speak. I spent 6 days

in the hospital and had over 500 messages when I returned home. I couldn't

even read all of them, I actually deleted them. Some I didn't get to read at

all. I joined this group 7 months ago so I could have someone to talk to

after I had been in the hospital, had an attack, or a Dr.'s appt. I could

come to this sight to ask questions, get feedback, and support. Basically if

we do more on this site other than what it was established for we will loose

members, because after a while the site starts to lose its purpose. Think

about it. I'm not meaning to step on toes. I really need this site, this

group. I don't want to have to stop reading the postings because there are

too many, some not even pertaining to our purpose.

GOD BLESS,

Marie

[Guest guest]

Hi All and Karyn,

I don't know what is upsetting those that are upset, but if it is because

some of the postings, there is no reason to be upset. I think Karyn just

wants us to keep our postings down to the wire so to speak. I spent 6 days

in the hospital and had over 500 messages when I returned home. I couldn't

even read all of them, I actually deleted them. Some I didn't get to read at

all. I joined this group 7 months ago so I could have someone to talk to

after I had been in the hospital, had an attack, or a Dr.'s appt. I could

come to this sight to ask questions, get feedback, and support. Basically if

we do more on this site other than what it was established for we will loose

members, because after a while the site starts to lose its purpose. Think

about it. I'm not meaning to step on toes. I really need this site, this

group. I don't want to have to stop reading the postings because there are

too many, some not even pertaining to our purpose.

GOD BLESS,

Marie

[Guest guest]

In a message dated 9/30/00 9:08:53 PM Eastern Daylight Time,

CJWatts88@... writes:

<<

Hi Shirley,

Thank you for replying so quickly. I'm very eager to find out as much as I

can about my condition or what my options are regarding my cyst.

When do you plan to have your surgery? I'm very sorry you have Pancreas

Divisum. I'm not familiar with that condition but, if you were born with an

abnormality of the Pancreas, I suppose you have had trouble with your

Pancreas all your life. Is that how you became Diabetic? It's amazing what

can happen whenever the Pancreas isn't functioning properly.

I don't eat much either whenever I'm having an attack. It only makes the

pain worse. I also have nausea and muscle/joint pain. My favorite food is

peach yogurt and jello!

My heart goes out to you and I hope and pray your surgery will make a big

difference in your health.

Thanks again.

Carole >>

Hi Carole, I hope you learn all you can about your pancreas condition. I

know that sometimes doctors drain cyst. I imagine you are in a lot of pain

due to the cyst. Keep asking and someone in this support group will have

some information for you.

I am not diabetic Carole, and if I were I would not be able to have the

surgery I am scheduled to have. Removing the pancreas and taking the islet

cells from the pancreas then injecting them into the liver can only be done

when one is not a diabetic. The islet cells taken from the pancreas are what

control the blood sugar and other important functions in the body.

Pancreas divisum is when the main pancreas duct did not grow together while a

fetus. The main duct is divided and the smaller duct then has the job of

letting enzymes flow from the pancreas to the duodenum to digest food. The

smaller duct is too small or blocked and does not let the enzymes flow

freely. The enzymes back up in the pancreas which cause pancreatitis.

Digesting of the pancreas. Horrible right? Ugh!

My surgery is scheduled Nov 17. I have to be in MN Nov 13 for four days of

testing and then on Friday I have the surgery. I didn't know I had divisum

until 1988 but I started having pain in 1985. I went from doctor to doctor

with them telling me it was all in my head, rolling their eyes at me, telling

me they know that I am crazy. That was fun. I would be devastated each and

every time I went to a new doctor trying to get a diagnosis for my pain. I

also had doctors attempt to do ercps on me knowing full well that they didn't

have the training to do one correctly and failing to get in my small duct.

Carole please stay with the support group and you will know so much more

about pancreatitis then I knew when I first became ill. I made some bad

choices with some bad doctors and I know so much more now then I did years

ago. If only I had known then what I know now I would not be near as ill. I

had 16 ercp's and 7 stents. I believe that stents damage the duct in the

pancreas and make the pancreatitis much worse.

Karyn, is the person who started this group. She is a RN and very educated

about this disease. She will be welcoming you as soon as she gets home from

the hospital. She had to go to the ER this morning due to a temp of 103.

She could have an infection from her central line. I hope not. She just

came home from the hospital. I didn't mean to talk your ear off. But it is

so nice to meet you and I want to help you so very much. I wish I could do

more but you will learn something everyday to help you make the right

decisions with your health care. Shirley

[Guest guest]

Hi Shirley,

You mentioned you were going to MN. Are you going to the Mayo Clinic? Does

your amylase and lipase levels increase with your condition? What are your

symptoms like and do you have pancreatitis all the time? I know I ask a lot

of questions but I am interested in other people's pain...not just mine. I

think people who have pancreatic problems are more understanding and have

more compassion for others. I know what you mean about some doctors.

Sometimes I don't think they are listening or they just don't care (probably

don't know the answers).

The cyst I had 14 years ago was drained surgically. The surgeon made a hole

in my stomach, attached the cyst to allow the cyst to drain through my

stomach. He also removed my gallbladder. I was told he had to do it that

way since the cyst was growing so fast and my pancreas wouldn't settle down

even though I had been on IV's for two weeks. Before I went to the hospital,

I had gotten to the point where water would give me pain so I had stopped

eating completely. I stayed nauseated all the time and very weak. I feel

very blessed that I made it through all that. I guess my fear is I might be

headed back in that direction and I don't want the doctors to wait until it

turns to acute pancreatitis. Then, of course, they try to get the pancreas

to settle down before they do anything.

I'm anxious to meet Karyn and very sorry to hear she had to go to the

hospital. Hope and pray she is doing well.

You asked me earlier where I live. I live in NC. Take care and have a great

day!

Carole

[Guest guest]

In a message dated 10/4/00 3:05:10 PM Eastern Daylight Time,

shirlf3542@... writes:

<< THIS IS A REMINDER FOR EVERYONE HERE. MIRACLES CAN AND DO HAPPEN. >>

And they do and Thank You Jim, and good on you (an old Texas term)

Poncho

[Guest guest]

In a message dated 10/1/00 11:59:43 AM Pacific Daylight Time,

CJWatts88@... writes:

<< I think people who have pancreatic problems are more understanding and

have

more compassion for others. I'm eager to meet Karyn and very sorry to hear

she had to go to the hospital. Hope and pray she is doing well.>>

Hi Carole, and all,

Sorry this is a bit late in responding. When I was heading to the hospital

last week I had Septicemia (blood infection) from my Hickman (central line)

and peripherally (from a regular blood draw from my arm. I was fortunate that

I was able to come home and administer the IV Vancomycin antibiotics at home

with the help of a home health agency. I haven't felt well enough to set up

the procedure myself, so a nurse does it in the morning and Tull, bless his

heart, does it in the evening.

At any rate, I sure do feel better. Having a temperature of 103.2 made me

terrible.

The symposium continues to pull itself together. I will be sending out the

brochures next week. A few people have said they wanted to participate by

telling the cliff note variety of their story. LOL.

I am eager to meet as many of you as I can. The weekly Tuesday night support

group continues to go forward. Drop by if you are passing through Indy.

All of you are so wonderful. The morale and emotional support are deeply

appreciated.

Karyn

Pancreatitis Support Network

Indianapolis Symposium on Pancreatitis 2000

November 11, 2000

[Guest guest]

In a message dated 10/6/00 7:04:15 PM Eastern Daylight Time, KarynWms@...

writes:

<<

Sorry this is a bit late in responding. When I was heading to the hospital

last week I had Septicemia (blood infection) from my Hickman (central line)

and peripherally (from a regular blood draw from my arm. I was fortunate

that

I was able to come home and administer the IV Vancomycin antibiotics at home

with the help of a home health agency. I haven't felt well enough to set up

the procedure myself, so a nurse does it in the morning and Tull, bless his

heart, does it in the evening. >>

Hi Karyn, is your medicine in a Christmas tree ornament type thing? That's

how mine was administered. Shirley

[Guest guest]

Karyn,

I am glad to hear you are doing better I remember my infection from my

central line and it was no fun at all I was glad that was over..I wish I was

closer to you I would go to the meets and the symposium.. I wish we had the

things here but maybe as I find more that are here we can put things

together too.. good luck and keep getting better

your pal

[Guest guest]

In a message dated 10/10/2000 12:07:37 PM Eastern Daylight Time,

CJWatts88@... writes:

<< Good Morning ,

Just read your post to . You have been through so much but you seem to

have a very positive attitude which brightens my day. My favorite quote is:

" Without a struggle, there is no strength " . I guess you and other members

of

this group have to be the strongest people I know! I admire your strength

and I'm sorry you have had to endure so much. Glad your surgery went well.

A few years ago, I had a tumor on my Parotid Gland and I was so concerned

about the scar from the surgery (and cancer). Fortunately, it wasn't

malignant and the scar is hardly noticeable anymore. Things could have been

so much worse and I feel very blessed.

God bless and hope you and all the members of this wonderful group have a

great day!

Carole >>

Hi Carole!!

Glad to hear from you! I like your quote!!! I guess my attitude comes

from being ever so grateful to have been given a second chance!! When I was

at my lowest point in my life my thought was always: " it has got to get

better from here coz it surely can't get any worse " !! That carried me a long

long way!!! I am so glad for you that it was not a malignancy!

The surgery that I had was to fix the ugly ugly hole left in my neck by a

trach I had last year. It looks really grose right now, but behind all of

the blood and sores, I can already tell that it is going to be very much

worth the pain in the end!!! I am not a real vain person, but seeing that

scar in my throat everyday was just a constant reminder of all that I went

through and I think it will just help me in my struggles to put it all behind

me and continue forward. I have great family and friends and they are so so

so much a big part of my strength! There is still a little part of my heart

that will never come back becuase it belongs to my deceased brother Tim. He

took that with him when he left and I was glad to give it!!! Losing him

while still in a coma has most definately been my toughest part to overcome,

but I am getting there and I feel him helping me daily. He was such a

strong man and endured so much sickness in his life, and by allowing me to be

his caregiver he gave me strength that I never knew I had!

From the bottom of my heart Carole, I hope that you find all of the support

that you need from this group and people that you will encounter.

hugs to you,

[Guest guest]

In a message dated 10/10/00 9:15:18 PM Eastern Daylight Time,

CJWatts88@... writes:

<<

Hi Shirley,

I wish I could take your worries about your operation away. We all have

faith that you will be fine. Please try to keep a positive attitude because

that's so important whenever you undergo any type of surgery. That way your

defense system works harder for you.

I have three children (adults) a son, Darren is 33, is 31 and

is

28. I don't know how they got so old so fast! My daughter has blessed me

with two beautiful grandchildren (the love of my life) is 12 and

Madison is 4. We have a Siberian Husky named Sasha who is also 4 years old.

Of course, Sasha loves my grandchildren, too. I have been married for 42

years (since I was almost 17).

I have had many blessings in my life and I'm sure there is a reason why I

keep having these attacks with my pancreas. If not for the Pancreatitis, I

wouldn't have met you or the other members in this group so there's one

positive. I have to have an ultrasound every four weeks to check to see if

that cyst on my pancreas has grown. My other cyst did, so this one probably

will, too. But my problem with my pancreas is so minor compared to yours

and

others in this group.

Have a good night, Shirley and you will be in my prayers. By the way, did

the doctor say they were concerned about your taking that blood thinner up

to

the day you have your surgery or did you question him/her?

Hugs & Prayers

Carole >>

Hi Carole, you have a lovely family. I have been married for 37 years this

Feb. My daughter is and she is 31 and single. She is six feet tall

and blond, very pretty. She is very choosey in who she dates. She wants a

kind and a Christian man. I wish she would find Mr. right and get married

and have some grandchildren for me to love. You are so lucky to have your

grandchildren. I know they give you so much in life.

I haven't been on the pc too much today due to having to continually putting

hot moist towels on my arm. I don't like doing this because it keeps me away

from my pc and my friends. My arm is still so sore and swollen. I cannot

see any improvement. I am very concerned about taking the blood thinner

before surgery. Especially up to the surgery date. I am going to call my

doctor in a week or so and tell her my concerns. told me that her

brother was on blood thinner and he needed an operation on his knee and the

doctors made him wait for three months after he stopped the blood thinner.

Taking the thinner really bothers me because of the surgery.

Carole I will add you to my im. I look forward to talking with you

sometimes. Take Care, Shirley

[Guest guest]

Henry,

It was no big deal. Yeah, I did realize you meant and not . there

are so many people on the board that it is easy to get confused. No harm done.

[Guest guest]

Well, Carole - you and I are both losing it. I wasn't really paying attention

and thought Henry was the one who sent the e-mail to and put my name on

it.

sorry Henry!

Oh, well, it has really been a long busy day at work for me. I managed to get

out about 25 reports that normally would have taken me a week to do. Obviously,

my brain needs a rest! I think I should leave work and head home while my brain

is still functioning well enough to drive!

[Guest guest]

Carole,

The doctor only checked my TSH. He didn't check the other thyroid levels. They

called today to tell me the 24 hour urine cortisol level was normal. The level

was 16 and abnormally high level is greater than 50 or 100 depending on the lab.

The good new is I'm still not having much stomach or back pain for the time

being. I am going to try to be patient and give the nephrologist a chance to

get the results back from the tests he has done. If he is not successful in

coming up with anything, I will try another doctor.

It means a lot to me just to know that someone is supportive in my continuing

search for what's going on. I am really lucky because my family is very

supportive, but I sometimes feel they are too close to be objective.

Thanks,

[Guest guest]

Carole,

The doctor only checked my TSH. He didn't check the other thyroid levels. They

called today to tell me the 24 hour urine cortisol level was normal. The level

was 16 and abnormally high level is greater than 50 or 100 depending on the lab.

The good new is I'm still not having much stomach or back pain for the time

being. I am going to try to be patient and give the nephrologist a chance to

get the results back from the tests he has done. If he is not successful in

coming up with anything, I will try another doctor.

It means a lot to me just to know that someone is supportive in my continuing

search for what's going on. I am really lucky because my family is very

supportive, but I sometimes feel they are too close to be objective.

Thanks,

[Guest guest]

Hi ,

I'm glad to hear your stomach and back pain is better. Maybe the swelling

you had was causing the pain (or more pain) and the lasix helped. Now, if

they can find the reason for your swelling opposed to covering up the symptom

(swelling). I'm confused about your 24 hour urine test. Did they only check

your Adrenal Gland when they ran that test or did they check the other glands

that secrete hormones too? They can do many tests from that 24 hour urine.

At least you are feeling better and I hope that will continue. Hang in

there....things will get better. That's what my husband has always told me.

Sometimes, I have wondered how he has put up with me and my strange

ailments/symptoms but I guess he really does love me or he would have left a

long time ago. (ha,ha)

Be sure to let me know what your Kidney doctor has to say about the test

results.

Hugs & Prayers,

Carole

[Guest guest]

Carole,

The family doc only checked for the hormone cortisol in the 24 hour urine.

He has done no blood work to check for any hormones or endocrine disorder

(other than the TSH for the thyroid and I requested that). I think he thinks

I am just a fat lady who complains too much!

[Guest guest]

In a message dated 10/17/00 5:06:11 PM Eastern Daylight Time,

CJWatts88@... writes:

<<

Hi Shirley,

Hope your arm is better. Did you ever call the doctor about your concern

with taking blood thinner up to the time of your surgery? I read

Rebello's story and I was very impressed with the surgery she had and how it

helped her. I can understand why you have chosen to have the same surgery.

I'm so sorry you have had so many problems and it sounds like this may be

the

answer for you. You are always in my thoughts and prayers. I said you are

on TPN but since I've never had to be on it (hope I never do), I wondered if

you could explain exactly what it is and how you take it. What can you eat?

Hugs & Prayers

Carole

>>

Hi Carole, it is 1:09 AM in the morning and I am just now getting around to

reading my e-mail. I have to fast tomorrow for 12 hours (water only) for a

test for MN. I have to do this three days. I am going to fast one day a

week since it is so weakening. MN wants to know if my islet cells are

working OK.

My arm is not any better and I am getting very discouraged. It is still

swollen and sore. I have burned it with too hot of compresses. It must have

been really inflamed to take so long to heal. I am still on the coumadin and

still concerned about it. I wrote MN an e-mail about the coumadin and they

said that I could take it up to 2 to 3 days before surgery. They said that

they could give me meds and platelets to make my blood clot again. That

doesn't sit right with me. I am not going to take the coumadin up to the

surgery date. I will talk with my doctor here in Cincinnati but I know she

will want me to continue taking it. She gets very angry if her instructions

are not followed. I guess I can understand that.

You said that you read Sue Rebello's Story. Isn't it great. I just hope I

have her success. She is a lot younger and healthier than me but I am going

to go in fighting for all it's worth.

Thanks Carole for praying for me. I have a lot of faith in God and I do

believe in prayer.

TPN stands for something which I have forgotten right now. It is Total

P-something Nutrition. By means of surgery I have had a port put in my chest

on the left side. This port is the second one that I have had. The first

one had to be removed when I developed two blood infections. The infections

I had were very serious. I had a bacteria and a fungus infection. If they

had not cleared up the fungus infection it would have killed me. I had to

take some very serious drugs to cure me of the infections. I was on three

drugs for 23 days. I had a temp of 107 and climbing. At the hospital they

covered me in ice. I was seeing things in my hospital room that were not

really there. I saw the devil looking at me and laughing thru a key hole in

a closet. That really scared me. It was so real. I also had a central line

for iv feeding and a pick. The central line is put in just above the collar

bone and the pick is placed in the upper arm on the inside. I become very

sick on tpn so I only take it at night therefore I only get 1400 calories.

Most people who are on tpn take it for 24 hours and they take lipids

everyday. Lipids are the fats in the tpn. I only get lipids every fourth

day. Years ago before I was a sick as I am now I could take tpn with lipids

everyday around the clock and it didn't make me sick. I would die without it

though. Most of the time I cannot eat a thing. Sometimes I try to eat

one-half of a teaspoon of egg white and get so sick. Right now I am able to

eat one-fourth of a cup of food not meat, every hour. That is great for me

but it won't last long then I will be back to not eating at all. Being on

TPN is very hard on the liver. Eventually if one is on it long enough it

will destroy the liver. That is one of the reasons I am choosing the

pancreatectomy and islet cell transplant. I know that I will have to stay on

tpn for the rest of my life if I don't do anything. I have a bag that looks

like a book bag and inside is my bag of tpn and a small pump which pumps the

tpn up the tube and into the port thru a needle into a vein in my heart.

From there it is pumped all thru my body.

Carole I hope you never have to have TPN. I never know when I will become

sick with a blood infection. We do everything we can to not contaminate

anything but it can be done without you ever knowing it.

Did you tell me that you have divisum also? If so how much can you eat? I

would starve to death without tpn. Thanks for asking and sorry I wrote a

book. I guess I have missed my PC while taking care of my arm more than I

realized. lol Shirley

[Guest guest]

In a message dated 10/19/00 11:22:33 PM Eastern Daylight Time,

CJWatts88@... writes:

<<

Hi Shirley,

I'm sure you are feeling pretty bad about now with fasting for 12 hours.

It's a terrible thing to have to do when you feel so bad anyway. I hope you

are back online tomorrow. We all have missed you. Sorry to hear your arm

still isn't well. I know what you mean about your doctor getting angry if

her instructions are not followed....mine reacts about the same way. I,

too,

hope and pray you have the same success with your surgery as Sue Robello

did.

We all want a better quality of life and this disease seems to change our

whole lifestyle day by day. I, too, believe in prayer and I will keep you

in

my prayers for the success of your surgery. I do believe you are going to

be

fine and understand more as to why you made that decision. Thanks for

explaining the TPN...sounds simply awful. You've gone through so much to

get

medical help with Pancreatitis. What caused you to see things that were not

really there? I took some kind of pain pills one time (can't remember the

name) and I saw monster faces and they were so real, too. It was very

frightening. It stopped whenever I stopped taking the pain medication. I

thought I was having it rough because I have to watch what I eat catering to

low fat foods. Can't tolerate red meat and I try to stick to chicken and

fish (baked not fried). On my bad days whenever I'm having the severe pain,

I usually stick to liquid such as yogurt, jello and soup. So, I eat better

than you even on my bad days! I'm so sorry you aren't able to eat anymore

than you do. I wish that I could help you and I can't imagine what you are

going through. You are a very strong lady! Try to keep your strength up

for

your surgery and I will keep my prayers coming your way!!!! Keep in touch

and let me know how your are doing.

No, I don't have divisum. I have a 4.7 cm pseudocyst on the tail of my

pancreas. I have another ultrasound scheduled next Tuesday at 8 AM. The

surgeon wants to drain it with a needle if I keep having pain with it....I

don't know what to do or what I should do. I dread this ultrasound because

the technician who did my ultrasound 4 weeks ago pushed so hard on my

stomach, she caused my pancreas to act up and the severe pain lasted two

weeks. My doctor said she must have been a " rookie " . Normally, they don't

have to push hard on your stomach for an ultrasound. I was afraid she was

going to rupture the pseudocyst. Lately, I have been having more pain in my

right side....don't know why since the pseudocyst is on my left side. I

have

a lesion on my liver....sure hope it isn't that!

God bless you Shirley.

Hugs & Prayers

Carole

>>

Dear Carol, I am so thankful for your thoughts and prayers. It is getting to

the point that when I go on line I am especially looking for your post.

Isn't it funny how we just seem to click with certain people. Maybe it is

our age.

I am sorry about the pain you are having and the cyst. I will be thinking

about you next Tuesday when you go for your cyst ultrasound, Good luck. I

will be praying for you.

The reason I saw the devil thru the keyhole when I had two blood infections

is because my temperature was so high. It was 107 and climbing. I was sort

of in and out. I felt I was there but then again I felt that I wasn't there.

I hope that I never get another infection like that again.

My arm is no better and I am still putting hot compresses on it and I

continue to take coumadin. I am very concerned about the coumadin since I am

going to have surgery Dec. 8. The doctor wants me to take the coumadin up to

the surgery. Speaking of the surgery, I was told today from MN hospital that

my ins co. will pay for the surgery but not the islet cell transplant. The

transplant is $10.000. I guess we are going to have to prove that I need

that also. I also have a snag with my insurance co. concerning a referral

from my doctor. That might be hard to get. I go to IN at IUMC for all my

stents and ercp's. That doctor is so against the removal of my pancreas. I

know that he will not give me a referral. He is a GI and going to MN to have

surgery would take business away from IN. The doctor I go to here in

Cincinnati is a fairly new doctor for me. He is a surgeon and he wants to do

a Whipple. There is no way I am going to have a Whipple. After I told him

that I wanted to go to MN and have the pancreatectomy he said that his

hospital was doing them there also and I could have it done there. No Way!!!

They are just starting their work with the pancreatectomy and islet cell

transplant. They are in the study mode. I do not want to be a study. In

Ind they did the surgery for a while and it was a failure. I think many

people died or were left being a diabetic. In MN they have been doing the

surgery since the 1970'S and they have it pretty much perfected. MN and Dr.

Sutherland are the only hospital and doctor I would allow to operate on me.

So you see what a mess I am in right now. Someway we will work it out with

Gods help.

Carole, don't let her push so hard on your pancreas. If the cyst burst what

would happen? Would the poison in the cyst go up into your chest cavity? I

have had pain like that but don't have proof it was a cyst. I know that the

pain was unbelievable. I have heard others say that they have pain on their

right side also. I do but I always contribute it to my chronic hepatitis.

Carole, it is so obvious to me that your are so kind. I want to thank you

for caring and thinking about me. I am so blessed to have friends like you.

Take care and I miss being on the PC like I used to. When I get my arm well

I will be back and typing up a storm. lol Love, Shirley

[Guest guest]

Hello Carol and Shirley,

I have always had the pain in my right side until I had the

radiofrequency done. I was told that the right sided pain is caused

from your liver. With pancreatitis the liver also gets damage from

flair-ups. I also have a cyst on my liver but no one is concerned

about it. It is a simple cyst and very common for people with

pancreatitis.

> In a message dated 10/19/00 11:22:33 PM Eastern Daylight Time,

> CJWatts88@a... writes:

>

> <<

> Hi Shirley,

> I'm sure you are feeling pretty bad about now with fasting for 12

hours.

> It's a terrible thing to have to do when you feel so bad anyway.

I hope you

> are back online tomorrow. We all have missed you. Sorry to hear

your arm

> still isn't well. I know what you mean about your doctor getting

angry if

> her instructions are not followed....mine reacts about the same

way. I,

> too,

> hope and pray you have the same success with your surgery as Sue

Robello

> did.

> We all want a better quality of life and this disease seems to

change our

> whole lifestyle day by day. I, too, believe in prayer and I will

keep you

> in

> my prayers for the success of your surgery. I do believe you are

going to

> be

> fine and understand more as to why you made that decision. Thanks

for

> explaining the TPN...sounds simply awful. You've gone through so

much to

> get

> medical help with Pancreatitis. What caused you to see things

that were not

> really there? I took some kind of pain pills one time (can't

remember the

> name) and I saw monster faces and they were so real, too. It was

very

> frightening. It stopped whenever I stopped taking the pain

medication. I

> thought I was having it rough because I have to watch what I eat

catering to

> low fat foods. Can't tolerate red meat and I try to stick to

chicken and

> fish (baked not fried). On my bad days whenever I'm having the

severe pain,

> I usually stick to liquid such as yogurt, jello and soup. So, I

eat better

> than you even on my bad days! I'm so sorry you aren't able to eat

anymore

> than you do. I wish that I could help you and I can't imagine

what you are

> going through. You are a very strong lady! Try to keep your

strength up

> for

> your surgery and I will keep my prayers coming your way!!!! Keep

in touch

> and let me know how your are doing.

>

> No, I don't have divisum. I have a 4.7 cm pseudocyst on the tail

of my

> pancreas. I have another ultrasound scheduled next Tuesday at 8

AM. The

> surgeon wants to drain it with a needle if I keep having pain with

it....I

> don't know what to do or what I should do. I dread this

ultrasound because

> the technician who did my ultrasound 4 weeks ago pushed so hard on

my

> stomach, she caused my pancreas to act up and the severe pain

lasted two

> weeks. My doctor said she must have been a " rookie " . Normally,

they don't

> have to push hard on your stomach for an ultrasound. I was afraid

she was

> going to rupture the pseudocyst. Lately, I have been having more

pain in my

> right side....don't know why since the pseudocyst is on my left

side. I

> have

> a lesion on my liver....sure hope it isn't that!

>

> God bless you Shirley.

>

> Hugs & Prayers

> Carole

> >>

> Dear Carol, I am so thankful for your thoughts and prayers. It is

getting to

> the point that when I go on line I am especially looking for your

post.

> Isn't it funny how we just seem to click with certain people.

Maybe it is

> our age.

>

> I am sorry about the pain you are having and the cyst. I will be

thinking

> about you next Tuesday when you go for your cyst ultrasound, Good

luck. I

> will be praying for you.

>

> The reason I saw the devil thru the keyhole when I had two blood

infections

> is because my temperature was so high. It was 107 and climbing. I

was sort

> of in and out. I felt I was there but then again I felt that I

wasn't there.

> I hope that I never get another infection like that again.

>

> My arm is no better and I am still putting hot compresses on it and

I

> continue to take coumadin. I am very concerned about the coumadin

since I am

> going to have surgery Dec. 8. The doctor wants me to take the

coumadin up to

> the surgery. Speaking of the surgery, I was told today from MN

hospital that

> my ins co. will pay for the surgery but not the islet cell

transplant. The

> transplant is $10.000. I guess we are going to have to prove that

I need

> that also. I also have a snag with my insurance co. concerning a

referral

> from my doctor. That might be hard to get. I go to IN at IUMC for

all my

> stents and ercp's. That doctor is so against the removal of my

pancreas. I

> know that he will not give me a referral. He is a GI and going to

MN to have

> surgery would take business away from IN. The doctor I go to here

in

> Cincinnati is a fairly new doctor for me. He is a surgeon and he

wants to do

> a Whipple. There is no way I am going to have a Whipple. After I

told him

> that I wanted to go to MN and have the pancreatectomy he said that

his

> hospital was doing them there also and I could have it done there.

No Way!!!

> They are just starting their work with the pancreatectomy and

islet cell

> transplant. They are in the study mode. I do not want to be a

study. In

> Ind they did the surgery for a while and it was a failure. I think

many

> people died or were left being a diabetic. In MN they have been

doing the

> surgery since the 1970'S and they have it pretty much perfected.

MN and Dr.

> Sutherland are the only hospital and doctor I would allow to

operate on me.

> So you see what a mess I am in right now. Someway we will work it

out with

> Gods help.

>

> Carole, don't let her push so hard on your pancreas. If the cyst

burst what

> would happen? Would the poison in the cyst go up into your chest

cavity? I

> have had pain like that but don't have proof it was a cyst. I know

that the

> pain was unbelievable. I have heard others say that they have pain

on their

> right side also. I do but I always contribute it to my chronic

hepatitis.

>

> Carole, it is so obvious to me that your are so kind. I want to

thank you

> for caring and thinking about me. I am so blessed to have friends

like you.

> Take care and I miss being on the PC like I used to. When I get my

arm well

> I will be back and typing up a storm. lol Love, Shirley

[Guest guest]

Carol,

I really don't know if the cyst is the pain problem or not. My pain

management doctor is the one who told me that the pain on the right

side under my ribcage was liver pain not pancreas pain. He said the

pancreas was further back behind everything and that' what was

causing the pain in my back under the shoulder blade. The mid upper

stomach pain is from the pancreas causing inflamation and irritation

in the stomach, they cannot block or do anything to the nerves in

your stomach cause it would interfere with digestion. My GI doc told

me the cyst on my liver was nothing to be concerned about unless it

became larger and started causing more pain. So far it has stayed at

1cm, which is not very big.

> Hi ,

> I have a lesion on my liver (they found it through a CT scan). Do

you know

> if that would be causing the pain in my right side. The doctor

told me it

> was a growth that had the appearance of a birthmark and they didn't

t-h-i-n-k

> it was anything to worry about. I just know I've never had a

lesion on my

> liver before! I don't like it when doctors say " I don't think "

when what

> that really means is, " I don't know. " I went to the doctor today

and he is

> doing blood work to check my liver for hepatitis. He was concerned

more

> about my weight loss and gave me Remeron 30mg (antidepressant)

because he

> said it would help my appetite. Whenever I'm having attacks, it

wouldn't do

> any good to have an appetite because food would make my pain

worse. My

> appetite is pretty normal most of the time. I'm just very careful

in

> choosing my food.

>

> I've talked enough about myself. How are you doing, ? Hope

you are

> having a good day and thanks for replying.

>

> Hugs & Prayers

> Carole

[Guest guest]

In a message dated 10/20/00 9:27:24 PM Eastern Daylight Time,

CJWatts88@... writes:

<<

Hi Shirley,

I know exactly what you mean but I know it doesn't have anything to do with

our age. When I first joined this group, for whatever reason, everytime I

went online, I'd look for your posts. This was quite some time before I

realized you were my age. I feel like I've known you for a long time (must

have been in a different life, (ha, ha).....and I worry about you as if you

were my sister. I often speak of you when my children are over and I print

your posts for my husband to read....so he knows Shirley, too! I just wish

I

could send some " sunshine " to you and make your day brighter!!!!

I'm so sorry you are having problems too with your insurance carrier. We

have enough problems without having trouble with our insurance paying for

the

medical help we deserve. I hope that is resolved soon....you don't need

that extra stress. I wouldn't want anyone doing any major surgery on me

either unless I knew that was their specialty and had done it many times

before with success. I agree, you need to go to MN if you are going to have

your pancreas removed especially since that's where Sue Rebello had her

surgery.

Don't worry, I'm not going to let them push so hard with the ultrasound

Tuesday. I've already decided I'll leave rather than taking the risk of the

cyst rupturing and, of course, another acute attack of Pancreatitis for two

weeks....it's not worth it! I would be in very serious trouble if the cyst

were to rupture.

Remember, I'm going to try to send some " sunshine " your way. I could send

my

grandson. He has always brought " sunshine " into my life and we've always

called him our " sunshine man " since he was a baby (he's 12 now). He and my

daughter lived with us the first four years of my grandson's life so he

feels

more like mine. I've always sang " You Are My Sunshine " to him since he was

a

baby and he says that's " our " song and will not allow me to sing that song

to

my granddaughter. I had to find another song for her. Now, here I go

telling you my life history....sorry, sometimes I get carried away.

I hope your arm improves soon. You will always be in my thoughts and

prayers. God bless you, Shirley....hang in there...everything is going to

be

fine.

Hugs & Prayers

Carole

>>

Dear Carole, I know we just sort of click don't we. I bet if we knew one

another we would be best friends. It's so easy talking with you. Where do

you live? I live in Cincinnati.

Thanks so much for thinking and praying for me. I need all the prayers I can

get. My daughter has so many people praying for me at her church and her

place of business. My sister has people praying for me at her church also.

I know that God hears my payers and will bring me thru this surgery.

It seems that my ins. will cover the removal of my pancreas but will not

cover the islet cell transplant. The transplant is $10.000. I am sure it

will all get worked out some way. is having the same surgery in Jan.

and she was having trouble with her ins. in the beginning and now they are

paying for everything even the hotel and the plane flight.

My husband wants to drive and I don't know if a 13 hour trip will be too hard

on me especially coming back home. If I think it will be too hard on me then

my daughter and I will fly home. I have never been on an airplane. I am

scared to death of them. I can't stand to have my feet off the ground. But

I have been thinking if I can lay on a table and have my body cut in so many

ways I certainly should be able to get on a plane. lol

Carole, you are so blessed to have grandchildren. My daughter is 31 and

still hasn't met Mr. Right. She is dating a man she met at her church. He

is 43 and seems quite nice. I haven't met him yet but she says he seems

nice. She is very picky in choosing a man to be her mate in life. She is

very concerned about dysfunctional men. She is very sensitive and doesn't

want a man who is hard to get along with. She is not a fighter. She is very

attractive, 6 feet tall, blond, and slim. She has her Masters in

environmental studies. So I know that there has to be a man out there who is

easy to get along with and who will give me some grand babies lol

I would love to be in your shoes with those grand babies. I would kiss and

love on them all day long. They would be so spoiled.

I am going to be thinking about you Tues. Don't let them hurt you.

I have been on tpn for several months and I am gaining weight. When I was

first put on it this time I weighed 122 and now I weight 139. I hope that I

am not too fat for the surgeon to operate on me. I am not eating today

though since I must have eaten something I was unaware would hurt me. Now I

am on our favorite diet clear liquids. lol Take care Carole, Shirley

[Guest guest]

In a message dated 10/20/00 10:19:27 PM Pacific Daylight Time,

CJWatts88@... writes:

<< Hi Steve,

Just read your post that Tam had to go back to the hospital. I just wanted

you to know I was thinking about you and I'm sure you're pretty down at this

time. How are your children? How old are they? Wish I could be there to

help you with them...I'm a pretty good " Mimi " (that's what my grandchildren

call me.) What did the doctors say caused Tam to get worse? My heart goes

out to you, Tam and the children. Wish I could say or do something to help.

This disease really makes me angry, too especially at times like this.

Steve, hang in there and I'll keep Tam in my prayers!

Hugs & Prayers

Carole >>

Thanks Carole:

My kids are devestated. They want thier Mommy home. My kids Bregan (daughter)

is 5 and Burke (son) is 3. Thank goodness for grandpa and grandma. My Mom and

Dad are great with the kids. Tams Mom is a different story. My kids go crazy

when my Mom and Dad come over. Thy spoil Bre and Burke rotten, thy say thats

what Grandparents are supposed to do. The docs don't have a clue what is

going on with Tam. When I brought her in I had to pull up to the door, get a

wheel chair and pick her up to put her in. When the triage nurse seen Tam she

put her rite in a room. Tam could not even pick her own arm up for them to

put the bracelet on. She is so weak. I hope she doesnt have to stay long this

time it is very hard on the kids and its hard on Tam and I also. Well I'll

keep chugging along. Your

friends Tam & Steve

[Guest guest]

-Hi Steve,

I am so sorry to hear that Tam is back in the hospital you and the

family are always in my prayers as for everyone in the group but you

have some special ones right now.. I hope that the stay won't be

long.I have been having some problems lately also and havent been

keeping up on my post which I am sorry to everyone this group has a

wonderful way of keeping me going and thank you for that,but I know

that you are frustrated and have every right to be just remember you

have friends here and if you need anything call me Tammy has my no.

and if you could let me know if she is up to visiters and where she

is so that I can come see her. I am having better days again and

hopfully this well stay this way I am very tired of having plans

messed up because I get sick or just because I am to scared to leave

the house. I am thankful for the puter and the group so that I don't

just lay in bed all day.. Hoping for the best for you and my prayers

are with you always... again call if you need too

your pancreatis pal

-- In pancreatitisegroups, LenhartROCKO@a... wrote:

> In a message dated 10/20/00 10:19:27 PM Pacific Daylight Time,

> CJWatts88@a... writes:

>

> << Hi Steve,

> Just read your post that Tam had to go back to the hospital. I

just wanted

> you to know I was thinking about you and I'm sure you're pretty

down at this

> time. How are your children? How old are they? Wish I could be

there to

> help you with them...I'm a pretty good " Mimi " (that's what my

grandchildren

> call me.) What did the doctors say caused Tam to get worse? My

heart goes

> out to you, Tam and the children. Wish I could say or do

something to help.

>

> This disease really makes me angry, too especially at times like

this.

> Steve, hang in there and I'll keep Tam in my prayers!

>

> Hugs & Prayers

> Carole >>

> Thanks Carole:

> My kids are devestated. They want thier Mommy home. My kids Bregan

(daughter)

> is 5 and Burke (son) is 3. Thank goodness for grandpa and grandma.

My Mom and

> Dad are great with the kids. Tams Mom is a different story. My kids

go crazy

> when my Mom and Dad come over. Thy spoil Bre and Burke rotten, thy

say thats

> what Grandparents are supposed to do. The docs don't have a clue

what is

> going on with Tam. When I brought her in I had to pull up to the

door, get a

> wheel chair and pick her up to put her in. When the triage nurse

seen Tam she

> put her rite in a room. Tam could not even pick her own arm up for

them to

> put the bracelet on. She is so weak. I hope she doesnt have to stay

long this

> time it is very hard on the kids and its hard on Tam and I also.

Well I'll

> keep chugging

along. Your

> friends Tam & Steve

[Guest guest]

This is definately worth checking in to.

Have you guys visited with Shirley at e-groups? She is very helpful. She

suggests Dr. Sutherland in Minnesota.

Has Krystal been tested for cystic fibrosis? Let me tell you, it was a total

shock when they told us had it. He is 13 and has NEVER been sick,

outside his diabetes anyway.

Thanks for your help with the info Krystal!