Chrissy

[Guest guest]

Hi Chrissy,

I went back to tell my GI who put the pancreatic stent in to go back down and

check to make sure it came out...He refused ...He said my xrays and labs say

it's out...In the mean time ...I'm packing on weight and sleeping way to much.He

notice the weight gain... And I'm weak...I'm worried now...so I have to find a

good doctor again...I'm looking into Dr. Lehman.

Thanks,

Hi I hope your doing ok, I just was curious about what you

had said about having stents still in place after 2 years. Have you

had an xray of your chest and abdomen do see where the stents are.

Usually after an ercp they will do one to check for placement or

migration of the stents. Maybe you could ask for primary to

prescribe one.

Its just a thought,

Chrissy

[Guest guest]

Chrissy,

We were blessed with the weather and everything else last weekend. I hope

to have the real pictures soon, I'm not sure how long the professional we hired

said it would be, but everyone's already asking about them. I guess we'll be

spending a small fortune just getting additional copies of everything for all

the

interested parties. Austin was our family photographer, and did okay for a 12

year old, but he forgot to use the red eye blocker on the camera and everyone

looks like they're possessed! He also got some lovely pictues of people's feet

and the carpet....hehehe!

Re the TP, I'm just not sure if I want to make my already brittle diabetes any

worse, and have to deal with a lifetime of anti-rejection medications. The

doctor that talked with me about it said that my diabetes would end up being

so impossible to control that it would ruin any quality of life. There would be

the possible cessation of pancreatic pain, but he felt that the problems I'd

encounter with the wild blood glucose control would outweigh the benefits. I

truly have had minimal pain since the pancreas burn out. The only thing

causing me pain now are the pseudocysts, not the pancreas itself. I'm not

saying that I've totally rejected the idea, but right now with things going as

well

as they have been these past many months, I'm just not in the mind set to take

the idea any further. You know how you have to mentally reach a certain

level of commitment and confidence that something is going to be successful

before you'll try it? Well, I'm just not there right now.

I'm the type that does better single tasking for something of that magnitude.

Right now my personal involvement is in solving my dental issues, getting

those new teeth and adjusting to that, before I tackle the next " project " . I

should have the whole ordeal over within the next three weeks, instead of

having to wait a further six weeks for insertion of the dentures as the dentist

had orignially projected, so that should be solved much more easily.

As long as my health permits, (knock on wood), I'll continue to try to work on

one thing at a time. My GI wants me to go down to Mayo in Florida for a

consultation to see this Dr. Lange, the pseudocyst specialist, as soon as my

schedule permits. I think the appointment Monday with the GI is to discuss

this further and set up the consult, in addition to my bone density tests.

After

being off calcium for a year and a half, he's put me back on it, despite these

pesky pseudocysts that won't go away.

Then I've committed to go up to NY for a week or more to help pack up my

father's office. He's 82, and we finally convinced him last weekend to retire

from his legal business. My sister and brother are up there now setting up the

arrangements for this, and I've promised to help with the pack up/knock down

of his offices. There's 60 years of legal files that we have to go through,

send

off to clients, or shred!!! It's going to be quite an awesome project.

I am trying to take it slow, realizing, as you said, that I've been running on

endorphans for several months now. I've got several easy, yet time

consuming home projects I've saved for this sudden lull, plus now I've got 27

toile table toppers to sell. I sewed them all during the summer to use for the

reception tables, and now that it's over I've got to find a buyer for them!

Thanks for your thoughts....I'm just slowly taking it one day at a time.

With love, hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina

SC & SE Regional Rep., PAI

Note: All comments or advice are based on personal experience or opinion

only, and should not be substituted for consultation with a medical

professional.

[Guest guest]

Heidi,

I've been a 'lurker' since last december when I had my 1st acute

pancreatitis attack. The cause was 'idiopathic'-possibly drug-

related (ruled out GB, panc divisum, alcoholism,

hypertrigliceridemia, etc.) I had been taking a new med-Singulair

for allergies & it does have a rare but documented side effect of

pancreatitis. I went happily on my way thinking I knew what caused

the attack. August 14 I had another MUCH worse attack--ER Doc said

he'd never seen a lipase that high. So more tests: MRCP showed

nothing. GI wants to do ERCP/sphincterotomy. What finally prompted

me to come out is your statement about Fosamax possibly being

contraindicated for CP. The other relatively new drug I'd been

taking was Actonel (similar drug to Fosamax). I'm a pharmacologist,

and haven't found anything relating either one to pancreatitis

(acute or chronic) but that doesn't mean it doesn't. (Many side

effects do not come to light until years of 'testing' by the public--

ala the Vioxx situation.) I would appreciate any info you find on

this. By the way, they work. Just before my 2nd attack I got the

news my bone density had increased by 9% in the year I'd been on

Actonel.

[Guest guest]

Heidi,

I've been a 'lurker' since last december when I had my 1st acute

pancreatitis attack. The cause was 'idiopathic'-possibly drug-

related (ruled out GB, panc divisum, alcoholism,

hypertrigliceridemia, etc.) I had been taking a new med-Singulair

for allergies & it does have a rare but documented side effect of

pancreatitis. I went happily on my way thinking I knew what caused

the attack. August 14 I had another MUCH worse attack--ER Doc said

he'd never seen a lipase that high. So more tests: MRCP showed

nothing. GI wants to do ERCP/sphincterotomy. What finally prompted

me to come out is your statement about Fosamax possibly being

contraindicated for CP. The other relatively new drug I'd been

taking was Actonel (similar drug to Fosamax). I'm a pharmacologist,

and haven't found anything relating either one to pancreatitis

(acute or chronic) but that doesn't mean it doesn't. (Many side

effects do not come to light until years of 'testing' by the public--

ala the Vioxx situation.) I would appreciate any info you find on

this. By the way, they work. Just before my 2nd attack I got the

news my bone density had increased by 9% in the year I'd been on

Actonel.

Sorry, I hit something & it looks like I posted before I was

finished.

Caroline Burton

AR

[Guest guest]

Chrissy,

Just let me know when you get there and then we can regroup. I will come see you

whenever it is best for you. You still may be so tired on Thanksgivng that you

won't have time to be depressed. And if you are feeling great, I will pick your

butt up, take you out on a pass for the afternoon ! We can eat pureed Turkey

together !!!!!! ( yummy !)

Any clue what time your surgery is on the 16th ?

Lily

[Guest guest]

I have had both done, although not at the same time, but I can't see

why they couldn't do them during the same time slot. The scopes are

different, but they just need to do an ERCP, then remove it from

your digestive tract, unscrew it off and attach the EUS scope and

reinsert it into your digestive tract...then viola.

I would imagine that most people have it separate because they think

the ERCP will show up something first, and if not, well, you haven't

signed any paperwork permitting the EUS.

[Guest guest]

Good, I'm glad you feel better about everything. When are you leaving again?

If I remember right your surgery is Nov. 19th, correct? I work for a Ford

Dealer and I am the Assistant Parts Manager. I am mostly sitting at a desk

on the phone and computer. I really don't have any manual labor. After I got

out of the hospital I got to go right home. It is a 5 hour drive for me. My

wife drove me home and I just rested all the way. I never did get any rest

in the hospital whatsoever. They would check my blood sugar EVERY hour!

Sincerely,

Darren

Darren

Your posts sounded so upbeat and positive it has me feeling very

confident. Even though we have different surgeons your post gives

me courage. I will be in Cincy for about 3 weeks and will be

staying in the local hotel for a few days after my d/c from the

hospital. Did ya'll have to do that as well? I'm kind of looking

forward to that. I'll be alone you see and should get plenty of

rest. Dont get a whole lot now with 3 kids. Its a realy nice hotel

and I am tickled pink.

I'm sure with time the sugical pain will heal. I know it took a lot

longer after my last surgery. If you could see how they stretch the

muscles and tissue out of the way to get to those organs, and the

panc is real deep behind the stomach, kind of hard to get to. They

really pull your body around like strecth armstrong, so that does

take some time to heal. Made me flabbier once, that kind of ticked

me off...lol

What kind of work are you in? I am so very pleased to hear from

you, thank you for sharing, its has done a lot to ease my tension.

Warmly,

Chrissy

[Guest guest]

Chrissy, I'm sorry I got the date mixed up. That seems normal for me

lately. Ever since I have been on a higher dose of OxyContin I cant'

seem to think as good as I used to. I have to double check everything at

work so I don't make mistakes. Hopefully soon it will go away. I have

terrible DT's cutting down from my OxyContin. Last year I tried to taper

down by myself and I had an awful time. I was only getting 1-2 hours of

sleep per day and always felt like I had the flu and a cold. My legs

twitch and ache bad also. Now I am taking Clonidine .01mg to help me

with the withdrawals. It works great for me. I couldn't have cut down as

much as I have without it. Make sure you get something to help you taper

off. It's not worth going through all the side effects.

Dr. Sutherland did my whole surgery (10hrs.) except for the isolation of

the cells. After he removed my pancreas they took it to another

hospital. (From Minneapolis to St.). My wife didn't like the idea of

them taking my pancreas down the highway to another hospital and back!!

She said what if they get into an accident, then what!! I didn't even

know about this until after my surgery. I wasn't to impressed myself. I

thought they did it all right there. It took the other hospital about 3

hours to get my islet cells out and back. This gave Dr. Sutherland a

good break. I was in the hospital for 16 days. I don't have to go back

at all unless I have some sort of problem or feel like I have to. (I

haven't even been back once!) I do e-mail Dr. Sutherland sometimes to

answer my questions I have. He is really good about this. I do have to

see an endocrinologist this week for my diabetes.

Again, I wish all the best for you. Make sure and get lots of rest and

do a little walking in the hospital. I does help you even though it

isn't easy sometimes.

Sincerely,

Darren

Darren

The surgery is on Tuesday the 16th. I have to be there at 8am

Monday morning for a 5 hout gtt--yuck. thats when I will meet th

surgeon, Dr. Rilo, who harvest, isolates and implants the islet

cells. I have heard a lot about him and looking forward to it. Dr,

s is the surgeon who will remove it amongst other things then

put it all back together.

Who isolated your cells? Sutherland, then somebody else was

finishing up with your abdomen; there is a lot to put back together.

Do you or had you already had a follow up with Sutherland. I have

to stick around to see the s in the clinic before I can leave

OH. How long were you in the hospital all together?

Thats great going back to work without much difficulty. Any problem

with dt's. I take a lot of demerol and I have withdrawn once before

and it wasn't very pleasant and I weaned myself. My job can be very

physically demanding. Plus I wont be able to take a small amount of

any narcotic in my line of work. So I need to be really pain free

to go back to work. How is your pain going?

I expect to get a lot of rest in the hotel, certainly not the

hospital you are right about that. I happy Thanksgiving and dont

forget to eat extra portions of dressing and gravy.

warmly,

Chrissy

[Guest guest]

Hi Chrissy,

Good to hear that you are recuperating....too bad it is at a slower

rate than you would like. But when you think how big of a surgery

you had, it is still remarkable that you are doing what you are at

this point. I remember after my belly was slit open from stem to

stern that it took months and months to even feel human again.

And about a year to a year and a half before I felt close to normal

- as far as energy, mood and motivation. It takes a huge toll on

your physical and mental strength. How are you doing with the

pain aspect? Have you been able to determine if the surgery

successfully reduced the pancreatic pain? I know that it is a little

early to come to any conclusions, but...maybe you are getting a

hint of good things to come? I hope so.

Thanks for the kind words too....about Dr L and writing and stuff. I

am going to see him Monday and Tuesday the 27th and 28th. I

will drive down there on Sunday to avoid hassles of being lost

and forgetting about the time change...stuff like that. I plan on

staying overnight Tuesday if he does the ERCP otherwise I will

drive back home Monday afternoon or Tuesday morning. But I

think I will push for the ERCP to check for that pseudocyst

possibility and to see if there is anything that can be done about

my recurrence of the biliary obstruction...as well as assessing

my stenosis of the minor papilla. I hope he is willing to look at

the pancreas and biliary at the same time. The doctors that I

went to here, were not. They only wanted to do the biliary and

thought that taking a look at the pancreas was inappropriate for

some reason. So I had to go to one place for the biliary and

another for the pancreas with two ERCPs when I could have had

it done all at once. But that was before I knew the things I know

now so I think I will be a little more aggressive about getting

clear information and outlining a plan of attack.

I am psyched for going to see him. I haven't heard a bad thing

about him, although the cynical side of me says that he sounds

too good to be true. But, if there is a bad side to him, I am sure

that I will bring it out, as I tend to do that - for some reason

doctors despise me. I have never figured out why. I do not tread

on their turf, don't act like I know it all...nothing like that. So

hopefully, we will mesh well.

I'll let you know how it goes!

laurie

[Guest guest]

Hello Chrissy! I have been doing great. I am off all of my narcotics and

have way more energy now than I have in over 3 years. The only pills I take

now are Pancrease, Celexa, and a multi-vitamin. I tried going off my Celexa

but my temper got the best of me. I was getting mad over every little thing.

I am going to wait a few more months and try again. My blood sugars have

been good. I take a lot more insulin than you do. It is great to hear you

hardly need any! I had a bunch of tests done on Friday and I should know in

a few days. I had my C-Peptide test, A1c, cholesterol, liver function, and a

few others done. My endocrinologist said that I should be about a 6 or 7 for

my A1c. I don't have any pain anymore except an occasional " phantom " pain

from about 3:30 to 6:00 am. It feels like my old pancreas pain right in the

upper center of my chest. It is just a dull ache and I don't take anything

for it. It's just a reminder of what I had! I only get it once or twice a

week. Other than that all my pain is completely gone. My pain has been gone

for about a month or so. I am so thankful that I made it through everything

so well.

I am supposed to see Dr. Sutherland also for my 6 month follow-up. I am

going down the first part of April to see him. I really don't have to he

said but I would like to have him check me over once more. I do miss the guy

though! He is so fun to talk to.

I ended up breaking one of my toes yesterday. I ended up dropping a washing

machine on it. I doesn't bother me too much. Not like the pancreatitis did.

Nothing I can do I guess. I have broken 15 bones over the years so I am

pretty much used to it. I used to race motocross and that was where I broke

most of them. I am just hoping nothing else happens to my foot now that I

have diabetes. Everyone says to watch your feet when you have diabetes.

Last weekend I even went snowmobiling. I had a blast. I had to sell both of

my snowmobiles 3 years ago to help pay for my medical bills. Most of the

snow has melted here lately so there isn't much left to go riding. My son

does get bored because he can't go out and play like he does in the summer.

We live in the country so we don't have to worry much. Last week I also

started exercising a little. I did a bunch of sit-ups and boy did my stomach

hurt for the next 4 days. I guess I over did it.

Take care and keep in touch!

Darren

[Guest guest]

Let's have a Vicodin party! You and I can commiserate together. I'm

having my tooth extracted on Thursday, though, so we better make it

quick!

Jodi Z

[Guest guest]

> Hi Chrissy,

I am sorry that you are having such a rough time these past few

months with everything. Are you aware that you can do directed donor

blood transfusions? had 17 blood transfusions in the first

few months of his life. Of the 17 he had, I believe 14 were direct

donor. This is when a family member or a friend donates blood

specifically for someone. The thought of needing a blood transfusion

is always a scary thing, but I know I felt better knowing where the

blood was coming from. In order to do this, your blood type must be

compatible with Madison's, and there may be some other factors they

look for. When was a baby, I needed donors that were CMV

(cytomegalovirus) negative in addition to having a compatible blood

type. If there's a possibility that Maddy might need another

transfusion, you may want to consider this route. In the meantime,

I'll be thinking of you and your family.

Here's some info about what a directed donation is:

What is directed donation?

A directed (or designated) blood donation is one in which a person

donates blood that is reserved (at the time of donation) for the

transfusion of a specific patient at a later date. The donor is

usually a family member or a close friend that has been chosen by the

patient's family. Consult your child's physician if you are

interested in learning more about directed donation. It is

recommended that families donate in the child's name versus directed

donation, because if directed blood is not needed, it is wasted.

Blood must be donated within a month of the surgery. If not used, it

will be released.

Kim C.

> Hello everyone.

> we are here at st chris's hopsital where Maddy has been admitted.

> She is in room 486 and the hops main number is . Looks

> like they may be on the road to figuring out whats going on. She

> has an infection somewhere but they can't find it. Her hemaglobin

> has dropped to 8.5. So now they are going to start a few new meds

> and by the morning she will recieve a blood transfusion. I'm really

> not happy about this but without it she will continue to drop. I

> will keep everyone posted as much as I can.

> Chrissy

>