A message from Duncan

[Guest guest]

I received this from Kaye and she asked me to pass this on. I was sure that I

forwarded onto everyone, but I can't find it in my sent folder...so I must have

spaced it...sorry Kaye it took so long for me to post it. Hope all is

well.......Mark. It is from Duncan

Thank you for contacting me as I have been thinking about the group, but it had

been so long, I guess I was afraid.

I would first like to make a quick disclaimer. I don't in any way regret having

the pancreatectomy and islet autograph. As far as I was concerned, there was no

way that I could pass up something that was my only hope, and despite

everything, I still feel that way.

The first and most important thing is the fact that I didn't stop contact

because I " got better and didn't need you " anymore. Actually, it was pretty

much the opposite. Apparently I was quite critical right out of the

pancreatectomy and islet autograph only I wasn't told about it till quite a bit

later. Luckily, with God's grace and several bags of blood and platelets, I

made it through. I also had to stay in Minnesota much longer than the others;

first in the hospital three and a half weeks and then moved into a transitional

center (like a nursing home) for another three and a half weeks and then back to

a boarding house for another week till I could finally go home.

Unfortunately my results were not too great. I kept my hopes up that my results

would end up getting better as I was told that recovery would take anywhere from

6 months to a year.

I was absolutely delighted to have the ability to eat things that I hadn't been

able to have in such a long time. I'm sure you can understand. It took me a

long while to have the ability to eat enough calories and I stayed on TPN for a

little over a month and a half. For some reason I had it in my head that as

soon as they let me eat, I would be able to enjoy a six course meal, but of

course there is no way you can eat a lot after barely eating anything by mouth

for the last year.

I was very excited when I woke up because I found out I no longer had a feeding

tube. I am a brittle diabetic due to the pressure of the portal vein of the

liver (which is where they insert the islet cells) rose extremely high and

basically killed all the islet cells.

There is an incredible amount of pain after that surgery. In the first few days

it seemed there was no way to lessen the pain even a little bit; but eventually

the pain did get bearable. After the surgery up until I got off the TPN, I

supported my weight with the IV pole. The kind they had was constructed in such

a way that you could kind of lean over on to it in order to support your weight.

Once I finally got finished with the TPN and they took the pole away, I tried to

get up and walk only to realize I was unable to do it without anything to hold

on to. I don't know if I could ever explain what it felt like or what was going

on in my head when I realized I couldn't walk on my own. I didn't let myself

freak out or even rant and rave or raise a stink cause there was already so much

to worry about just trying to recover. I just figured my body was weak due to

the surgery.

I simply called the people from PT (I was in the transitional center at the

time) and they brought me a walker and wheelchair and we continued with the PT I

was already doing. We all just thought it was weakness.

Sorry to be writing such a long story; I guess I am finally getting it

out-(thank you).

To make a long story long-here I am 3 years later still in pain; occasionally

nauseous, diabetic and going from walker to wheelchair. I thought at first the

problem with my legs was become of a problem with the epidural, but now I thing

it was something already inside my body and due to the trauma my body went

through with the surgery set whatever that it was in motion. I can't tell where

my legs are unless I am looking at them and they are very difficult to control.

The part that scares me the most is that my arms keep getting major weak

episodes. I can handle having problems with my legs but I don't know if I can

handle it moving to my arms as well. The last few weeks I haven't[ been able to

be out of the wheelchair because both knees have gone out as a result of muscle

weakness letting my knee cap roam around.

Surgery positive: less nausea; pain somewhat more manageable; able to eat again.

Surgery negative: had six would surgeries due to stick abscess at original

incision; unable to walk without assistance;

pain up and down, sometimes back to where I can't sleep for

days; diabetes

I feel being able to eat has definitely improved the quality of my life. Trust

me, my weight can attest to that fact. One thing that bothered me the most is

being back in the position of having all the pain etc. without having a name or

good explanation for it. I mean I understand that most of it is related to the

chronic pancreatitis, but I can't call it that anymore, not can I explain it to

anyone. I just hate being back in the position I was before I had a name for

the chronic pancreatitis. I think you can probably understand that also.

Somehow having a concrete name and reason for something helps in giving you

something to focus and fight against.

As I said before, and I think it is very important. I do not whatsoever regret

having the surgery. Dr. Sutherland was the first and only doctor that gave me

any kind of hope. I don't see how I can ever regret taking the only chance I

had at health. Unfortunately, it didn't turn out as well for me as it did for

other people. In fact, I think I am an exception. I guess I was just so sick

when I had the surgery that my body just couldn't handle it.

I would still recommend the surgery and am grateful to Dr. Sutherland because as

I said before-just being able to eat has made my quality of life so much better.

I stopped conversing with the group mostly due to depression; I basically

withdrew from practically everyone. Now I am just trying to make it day by

day-fighting with the pain and nausea and praying that one day I will walk

again.

I hope you don't regret getting in touch with me since I ended up writing a

book. I also wouldn't mind you sharing this with the others. I still get the

digests and scan them every once in a while. Whew, I think it helped me to get

it all out.

I just have to reiterate, that I advocate the pancreatectomy with islet

autograph because it does offer hope and even though I have had a rough time,

just being able to eat is wonderful and so many others have had tons of relief

from their pain as well as freedom for diabetes. Thank you and God bless,

Duncan

I hope this finds you and yours well

Mark E. Armstrong

casca@...

www.top5plus5.com

PAI NW Rep

ICQ #59196115