Re: shirley

[Guest guest]

In a message dated 09/09/2000 4:46:08 PM Eastern Daylight Time,

shirlf3542@... writes:

<< Hi Helen, are you OK? We haven't heard from you for a while. I hope

you are having good days and that is the reason you are not posting. Did

your son go back home? I was just thinking if he did then you are alone.

Please let us know how you are. Your Friend, Shirley >>

Yes. Just had a tough week. Lots of doctor appointments and 12 vials of

blood later (they lost some of it and I had to go back the 3rd time), dryer

quit then almost caught fire, 2 cars need repair and a funeral.

My oncologist called twice this week and thought (once again - this is the

third time) that I had bone cancer. I fluffed it off the other times, but

for some reason it hit me hard this time and I was really scared. Turns out

it was nothing - just a thickening on the bone. Thank You, God. Sincerely.

Not finished yet. Have an ERCP, colonoscopy (spelling?) and a bone density

test in the near future. Have had many, many ERCPs, so sure not looking

forward to the almost inevitable acute attack. Have never had a colonoscopy

- have you? I'm anemic and the oncologist insists that I must be bleeding

from somewhere, but I've been anemic all my life....?

Thank goodness my son is still here. For the first time in all of this these

past 2 years, I really needed someone to go with me to the doctor to hear the

news. He and my sister were right there with me, and I really needed them to

be. I've been so brave, but all of a sudden, I'm not. Hope this is a

temporary lack of courage.

How are you doing? I've been reading the postings each night. Are you still

ok with your upcoming surgery?

Helen

[Guest guest]

In a message dated 9/9/00 5:55:23 PM Eastern Daylight Time,

Helen4@... writes:

<<

<< Hi Helen, are you OK? We haven't heard from you for a while. I

hope

you are having good days and that is the reason you are not posting. Did

your son go back home? I was just thinking if he did then you are alone.

Please let us know how you are. Your Friend, Shirley >>

Yes, Just had a tough week. Lots of doctor appointments and 12 vials of

blood later (they lost some of it and I had to go back the 3rd time), dryer

quit then almost caught fire, 2 cars need repair and a funeral.

My oncologist called twice this week and thought (once again - this is the

third time) that I had bone cancer. I fluffed it off the other times, but

for some reason it hit me hard this time and I was really scared. Turns out

it was nothing - just a thickening on the bone. Thank You, God. Sincerely.

Not finished yet. Have an ERCP, colonoscopy (spelling?) and a bone density

test in the near future. Have had many, many ERCPs, so sure not looking

forward to the almost inevitable acute attack. Have never had a

colonoscopy

- have you? I'm anemic and the oncologist insists that I must be bleeding

from somewhere, but I've been anemic all my life....?

Thank goodness my son is still here. For the first time in all of this

these

past 2 years, I really needed someone to go with me to the doctor to hear

the

news. He and my sister were right there with me, and I really needed them

to

be. I've been so brave, but all of a sudden, I'm not. Hope this is a

temporary lack of courage.

How are you doing? I've been reading the postings each night. Are you

still

ok with your upcoming surgery?

Helen

>>

Hi Helen, You sure have been through a lot. No wonder it is catching up

with you. Why are you having another ercp? Yes, I have had a colonoscopy.

It's not bad at all. I think the preparations is the worst part. They give

you some medicine and it makes you sort of in a twilight. Also you won't

remember much. Don't worry about having that. I assume you are having the

colonoscopy for the anemia. After all that chem. I can understand why you

are anemic. I just hate doctor's appointments and test. I have three

doctors appointments next week and I am not looking forward to them. Makes

me nervous.

I called MN. to get started with the paperwork for the removal of my pancreas

and the auto islet cell transplant but we hit a snag. When we told the

coordinator that I was positive with hepatitis B she stopped everything and

said she had to talk with a doctor about that. She will not get back with us

until later next week. I hate to be negative but I have a strong feeling

that I won't be a good candidate and if that is the case then I will have to

go to Ind. and have another pancreas surgery. Since the last four stents I

am so much worse. Now I can't eat at all most of the time. When I can eat

it is only one-half of a teaspoon of food. Oh Helen I so want that cell

transplant.

I am so glad that your son is still visiting you and there to give you help

and support. Also that was great that he and your sister went to the

doctor's with you. I understand about not being as brave as you once were.

I am the same way. I have been crying everyday and at night when I go to bed.

I am so stressed and nervous. If I only had a plan. Everything is

unsettled and I am in a holding pattern. No matter which surgery I end up

with there are very bad drawbacks.

Whew, I am so glad that the doctor made a mistake with the bone thickening.

I still have to go to the oncologist every 6 months for cancer check ups.

Isn't it scary? I dread it every time. They take a ca125 to check for

ovarian cancer and I wait every time on pins and needles. I am so glad I had

a chance to talk with you. It has been a long time. Helen just try to

take one day at a time and one test at a time. It will be OK. You have been

through the worst battle already. You can handle this. Your friend,

Shirley

[Guest guest]

In a message dated 10/1/00 2:07:04 AM Eastern Daylight Time, feuchts@...

writes:

<<

Dear Shirley,

I have noticed that you are the first one to chime in when there is a

new member. You are so eager to share and help. That is a blessing

to all of us. Your experiences help us that are searching. I am

sorry that you have had to suffer. I hope and pray that things will

go well for you. God bless and Thank you. Take care, dawn.

>>

Thank you Dawn, I also hope and pray things work out for the best for you.

Shirley

[Guest guest]

Hi Shirley,

After reading your post last night, you were the first person on my mind this

morning wondering how things went at the hospital. Glad to hear you took

Jang's advice and hope you feel better soon.

Carole

[Guest guest]

I slept too late today, so now I can't sleep tonight. Also, I think I am

anxious about seeing the kidney specialist and having the renal scan done

tomorrow (or actually today). Right now I feel like I am swollen all over.

My fingers feel really tight when I try to make a fist. I squatted down the

other day to dust a lower shelf and the skin in my legs felt like it was

going to split open. Luckily, my pain has diminished from what it was last

week. It was really not bad at all last week-just a dull ache most of the

time. I started antibiotics Friday again for a kidney/uti infection and now

the pain is sometimes just barely noticeable. Maybe I'll find out that it is

something other than the panc causing problems. If that is the case, I'll

say so long but not goodbye. I feel like I have met some of the most caring

people through this board.

Well, I will try to go back to sleep. Take care, Shirley.

[Guest guest]

In a message dated 10/9/00 7:47:58 AM Eastern Daylight Time, djssekis@...

writes:

<<

<< I keep praying but I still keep on

worrying. Shirley >>

i'll be praying for you too, shirley. anything out of the ordinary realm of

things is scarey anymore. you have been through so much already - you'll

come through with flying colors. debbie

>>

Thanks for praying for me Debbie. I hope you are right about the surgery. I

think about it all the time. It is such a big surgery and I am in terrible

shape. Pleaseeeeeeeeeeeeee keep praying for me. I am so scared. Love,

Shirley

[Guest guest]

Shirley ,,

You are in my thoughts and prayers always as for all from the group but I

have you in a special one just for your surgery.. keep your chin up ..

your pal

[Guest guest]

In a message dated 10/9/00 4:09:55 AM Eastern Daylight Time, mrsteep1@...

writes:

<<

Shirley.. I do am a night owl I guess but is usally the pain that keeps me

up.. I am glad to hear there is not clot... I have been watching the post to

see what happen.. so keep us posted would like to know all turned out ok...

good luck

your pal

>>

Thanks , I am going to the doctor tomorrow morning. I sure hope she

knows her stuff and can help me. Sorry I lost almost all my faith in

doctors. Shirley

[Guest guest]

Shirley ,

I to know the feeling of not having faith in the doctors but yet we need

them for our meds. so then to I would be lost. I was just tell a friend of

mine today that I do everything they tell me to and I still have this pain I

feel so helpless and have no control over my life anymore.. but yet as I read

here I am not alone it seems all the doctors are the same it seems that with

all of this out there they should be able to find something to help us..Hang

in there that is what I keep telling myself .. hoping you are feeling better..

your pal

[Guest guest]

Hi Shirley,

We will all be praying for you and I'm sure you are going to be fine! If we

all could, we would be there with you when you have your surgery. Hope your

arm is feeling better and glad to hear you didn't have a clot.

Carole

[Guest guest]

Hi Shirley. When I came from the hospital I kinda read quickly the posts I

dont remember why are they going to remove the entire pancreas? Shirley as

you know they just removed 50% of my pancreas and the spleen. Shirley it does

get better. poncho just gave someone some very wise advice and that was take

each day at a time. when you are in the hospital after surgery things seem

pretty bleak. just remember one thing move. i would not move much the first

day but i made a promise to myself to be active on the second day. i was, i

started walking the halls. i had a PCA pump. Which allows me to give myself

the demoral as needed? I was on 105 mg/HR if needed. I did not need that much

but when I needed it I took it and this was always the case when walking. if

you need the help from a nurse or an aide then ask for it. I went home 4 days

after the second surgery. I am walking now. Dodie will drive us to the store

and I can go in with her. I am feeling better each day. this is why you need

to take poncho's advice one day at a time. With the passage of each day your

body will repair itself and things do look better. good luck with your

surgery and keep us informed. You have alot of really great friends here

pulling for you. Jim s

[Guest guest]

In a message dated 10/9/00 1:29:20 PM Eastern Daylight Time, mrsteep1@...

writes:

<<

Shirley,

You are right my brother has had pancreatis for 23 years is now a

diabtic

and things are so different now from what they first did for him , the only

thing I don't understand with him is he now has shots and doesn't have to

have his viakose anymore which I don't understand is that part of it once

you

have sugar you don't have attacks anymore??? he as far as I know hasn't had

attack since he has had sugar. but hopefully it won't take 10 years for them

to come up with something, but that fear of it being that long is there..

god bless you and take care

>>

Hi , your brother's pancreas is probably all ready destroyed and when

that happens the pancreas stops having attacks. Is he in less pain than he

used to be in? I don't understand exactly what happens to the pancreas when

it burns up but many in this group could give you the right explanation for

it. I am so sorry for you and your brother. I hope he doesn't suffer as bad

as he used to. Hang in there you are young. You have a better chance

of getting help or a cure than I have. I am 58 and I don't know if I will be

here when research finds new medicines for our sick pancreas. Your Friend,

Shirley

[Guest guest]

In a message dated 10/9/00 2:24:13 PM Eastern Daylight Time,

CJWatts88@... writes:

<<

Hi Shirley,

We will all be praying for you and I'm sure you are going to be fine! If we

all could, we would be there with you when you have your surgery. Hope your

arm is feeling better and glad to hear you didn't have a clot.

Carol >>

Thanks Carole, you and all the other new members have added so much to this

group. Thank you for joining the group we are so lucky to have you and

please, please keep praying for me to do well with that very serious surgery.

The surgery date is Dec. 8. Thanks again, Shirley

[Guest guest]

Shirley,

He had pancreatis alot different they I have he would have the attacks go

into the hospital and then a week later be out and then go home work his way

back to solid foods and be fine until the next attack the first year or so

was hard cuz back when he first had it they really didn't know anything he

went out of state and when they told him it was his pancreas and it was 90%

diseised he took viakose with his meals up until he got sugar but he would be

fine in between attacks now he doesn't have attacks but does take shots but

no pills.. thanks for trying to explain...

your pal

[Guest guest]

In a message dated 10/9/00 3:14:19 PM Eastern Daylight Time,

rastif2020@... writes:

<<

Hi Shirley. When I came from the hospital I kinda read quickly the posts I

dont remember why are they going to remove the entire pancreas? Shirley as

you know they just removed 50% of my pancreas and the spleen. Shirley it

does

get better. poncho just gave someone some very wise advice and that was take

each day at a time. when you are in the hospital after surgery things seem

pretty bleak. just remember one thing move. i would not move much the first

day but i made a promise to myself to be active on the second day. i was, i

started walking the halls. i had a PCA pump. Which allows me to give myself

the demoral as needed? I was on 105 mg/HR if needed. I did not need that

much

but when I needed it I took it and this was always the case when walking. if

you need the help from a nurse or an aide then ask for it. I went home 4

days

after the second surgery. I am walking now. Dodie will drive us to the store

and I can go in with her. I am feeling better each day. this is why you need

to take poncho's advice one day at a time. With the passage of each day your

body will repair itself and things do look better. good luck with your

surgery and keep us informed. You have alot of really great friends here

pulling for you. Jim s

>>

Dear Jim, thanks for thinking about me. I am going to have my pancreas

removed because I believe that is the best thing for me. I have chronic

hepatitis b and pancreatitis. Due to both organs being so sick I am unable

to eat, stand very long, walk very far, and I have pain all the time. I

tried stents to prepare my pancreas for a puestow surgery but that didn't

work for me. With the stents in the small duct I still couldn't eat and the

doctor told me before he put the stents in that if I couldn't eat with the

stents in then the puestow wouldn't let me eat either. So I stopped the

stent procedure. After that I found out about Dr. Sutherland and the removal

of the pancreas and the islet cell transplant. Dr. Sutherland is in MN. He

is having great success in the islet cell transplants. With this surgery I

would have a 50 % chance of not being a diabetic with the pancreas removed.

I have a 90 % of just being a mild diabetic. I have talked with people who

have had this surgery and they are doing so well. They do not have the pain,

they are not diabetic, and they can eat all and everything they want. Dr.

Sutherland has been doing this surgery since the 70's and now he is really

beginning to get very busy since so many people with cp are finding out about

his surgery.

I am scared about having the surgery because I have chronic hepatitis B and I

am very weak and fatigue easily. I have to use a wheel chair when I leave my

house. I am not in the best shape to have a major surgery like the one I am

planning. I will not see Dr. Sutherland until the week he does the surgery.

I hope he will take me as a patient when I tell him about my stamina.

I am not sure what this surgery entails with the cutting. I know the pancreas

will go and the spleen and the duodenum, part of the stomach, something done

to the bile duct. Maybe something done to the intestines. As you can see

Jim this is a very big surgery. I am so scared. I hope I make it thru it.

I will try to take your advice about getting out of bed the second day but

walking the halls is impossible for me. I will do the best that I can do.

What do you think of the magnitude of this surgery for me? I know you would

be a good person to ask since you just had a surgery. I hope you are feeling

better every day Jim. Shirley

[Guest guest]

Hi everyone

It has been a long time since I wrote. My husband Jim has chronic

pancreatitis.

I guess it has been 4 years now since he was diagnosed. I was just wondering

when I hear people say they are having the pancreas removed. Jim couldn't

tolerate food. For a year and a half he vomited daily. In and out of

hospital

steady for a year and a half. He was normally 240 pounds and his weight

dropped to 150. In January of this year they had to put in a permanent

J-tube. He had TPN at home for a quite a while to build him back up again.

He now has 5-6 cans of Nutren 1.5 a day. He gradually started eating again

but still does his can food. Actually he does both. When he starts to get

pain and feel ill again he stops the food and continues on the liquid for

about

three days until the pain eases off. He takes 4 mls Dilaudid twice daily.

Once

a month the doctor prescribes a large bottle of Dilaudid for pain. He takes

this

and crushes gravol and injects this into his J-tube. About six weeks ago his

family doctor said we should think about pulling the J-tube out and see what

happens. Jim turned around and said, like hell I'm not going through all of

that again. I really don't think Jim could every tolerate food on a regular

basis. Jim is terrified of getting sick again like he was. He would rather

live

with the J-tube. He has

never been back in hospital since. That can food is a life saver.

I don't know where this disease is going to go. I guess the worse complaint

he has is gas (fowl smelling) and I think it is from the food. We don't have

much of a social life unless we are in open spaces. Ha! I took him to

watch professional skating and we ended up sitting in the blue section in

the corner all by ourselves. People probably thought we were lovers or

something. If they only knew. Ha! Thank god I have a sense of humour.

Anyway this is long note, but I was wondering has anyone ever had a

J-tube inserted. (To get even more personal does anyone have this terrible

gas problem like Jim?) I mean who else can I ask.

Thanks for listening.

[Guest guest]

In a message dated 10/9/00 5:40:10 PM Eastern Daylight Time,

shirlf3542@... writes:

Shirley sez

<< I will do the best that I can do. >>

That's all anyone can ask for Shirley, the old Boy Scout Motto " Do your Best "

Have faith and do your best.

Best wishes

Poncho

[Guest guest]

In a message dated 10/9/00 6:43:36 PM Eastern Daylight Time,

Northskies1@... writes:

<< Anyway this is long note, but I was wondering has anyone ever had a

J-tube inserted. (To get even more personal does anyone have this terrible

gas problem like Jim?) I mean who else can I ask.

Thanks for listening. >>

Hey Northskies,

I had a J-tube several years ago and it was placed just in case my gut

decided to quit working, fortunately I had the great luck that things went

better and they pulled the J-tube about 10 days after they installed it. As

to gas, yes indeedy, I can clear out three aisles of a Home Depot. It just

seems to go with the territory.

My only advice is to keep moving and point to someone in the opposite

direction.

Best wishes,

poncho

[Guest guest]

Jim and I both laughed at your remark about Home Depot. That's exactly what I

mean. No more dances for Jim and I. I feel better knowing we are not alone

with this problem.

Talk to you later.

[Guest guest]

Oh no there goes my bikini lol If I wore one of those everyone would run

from

me. ha ha Does it stick out? Does it get dirt in it?

Do your kids think it

is funny? Shirley

Oh NOOOOOO!!!!!

I think this falls under more info than I want to know! *laff*

[Guest guest]

In a message dated 10/10/00 9:40:11 AM Eastern Daylight Time,

briffle@... writes:

<< Do your kids think it is funny? >>

Hi Shirley, actually it is a funny curious thing to my kids LOL

[Guest guest]

In a message dated 10/14/00 5:17:09 PM Eastern Daylight Time,

tross67260@... writes:

<<

Shirley,

What a lifetime of pain you have had. You must be a very strong

person, and I will say many prayers for you.

I probably won't be reading any more e-mails for about a week as we

are leaving early in the morning for Mayo. I hope we hear the

answers we are praying to hear for .

Take care.

>>

Good luck , and I will be praying for your little boy. Have a safe

trip. Thanks for praying for me. Shirley

[Guest guest]

I can also join the ranks of the distorted navels! Mine looks like I

have two belly butons on top of each other. When I had the cysts and

ovary removed they made a new belly button for me. Gee just think I

could have all kinds of rings in it! Yuck! Mel

> In a message dated 10/10/2000 12:02:56 AM Eastern Daylight Time,

> poncho9191@a... writes:

>

> << Hey Shirley, I got the funniest navel you ever saw, after that

surgery

> that

> sucker looks sideways! >>

>

> What navel? I have a crooked slash on my stomach where my navel

used to be

> located :-)

>

> Andre'

[Guest guest]

Dear ;

I am sadly too aware of that state of being a ball between to bureaucracies.

Unfortunately, I have sometimes been one treating a person more like a ball

than a person. At times I have from 100 to 400 prisoners in my care, some

with significant health needs. The focus of our administration and the local

hospital administration, and sometimes also other police agencies, is more

who will assume the liability and pay the bills, rather than the health of

the inmate. I have played a heartless part in all of this. I hope to be more

sensitive in the future. I don't know that I can actually change anything,

but I certainly will try to keep the needs of the person suffering foremost

in my mind. It is only right.

Lockridge

[Guest guest]

,

I am sorry that you know that ball rotine,, I don't feel anyone should

have to be put through that or be treated like that, it is just sad the way

doctors just seem to forget there oath " Frist do no harm " and when they treat

you like that I feel they are doing harm.

I would not want your job at all that can not be a easy one, but you do seem

to be a caring person and senceative. I thank you for the reply and thoughts

for me god knows I need them as we all do in this group, I am very thankful

for the group it has given me so much and I hope it is giving you the same..

By the way How are you feeling?

Thanks again and chat with you soon

Wishing you all a pain free day

from Michigan