Re: Islet Cell Transplant Registration-Clinical Trials

[Guest guest]

Andre,

I am not familiar with that site but I am recovering from a Total Panc

with Islet Cell Autotransplant (had surgery on May 15th). Sounds like

you probably signed up for a trial for just a Islet Cell Transplant

and in this regard the kind where someone receives a donor's (living

or cadaveric) islet cells. This is done for people with Diabetes Mellitus.

Since you have pancreatitis I presume you actually want what I

had...cut the panc out, and have one's own islet cells transplanted

back into the body most likely in the liver.

I had my total panc and islet cell transplant done at the University

of Cincinnati Medical Center and I believe I am the only person on the

list to have had it done there. I'm doing real well. Recovery takes a

long time.

Dr. Sutherland is the undisputed king of the procedure so get info

from Shirley or Dave or one of the others and talk to him ASAP. Not

sure how your previous procedures may impact your candidacy for the

surgery...I know that I was an excellent candidate because I was not

diabetic at all and had by the grace of the Goddess and God managed to

not have a totally ruined pancreas despite 15 hospitalizations in 3

years for acute pancreatitis.

I am at the 5 week mark post surgery and here is where I am at:

my blood sugar levels are very stable and are excellent but to ensure

things are safe I am on a very strict protocol and do take insulin. I

generally take 3 or 6 units of regular a day, and 2 shots of 11 units

of NPH

I am very ambulatory and am walking a lot to help gain stregnth and

endurance back.

I have NO pancreatitis-type pain. I do have post-op pain which is

lessening over time and is very manageable. I will in short order

finally be free of my duragesic patch and oxycodone which sustained me

for 7 months and helped me to somehow keep working, some at least.

Often people are sent home with a G-tube and J-tube. My J-tube was

removed on Wednesday. The G-tube will be removed in 10 days. It was

almost a waste that they put them in me because except for the first 4

days after surgery neither were used.

The only problem I have is that I managed to have a hematoma on part

of my incision which has hampered one spot from closing. And like

clockwork it got infected. The infection is in the wound itself and so

the treatment of choice is drainage and debridement. My wife takes a 4

x 4 of gauze and stretches it out all the way, soaks it in .9% saline

solution, wrings it out, fluffs it up and packs the wound with a

sterile qtip to push it in. This is changed 3 times day. Its working.

Its annoying, but its doing the trick.

The surgery involved removing my spleen, my pancreas, and part of my

stomach. My gallbladder had already been removed. Because of the

partial stomach removal I have had to reduce the portions of food I

can eat. Sometimes I cannot eat much at all, but it is getting better.

In time that'll go away. I can eat anything now. =) I have embraced

cheese, something that would trigger attacks when I had a pancreas.

Its been awesome!

I have been told the length of recovery for a total panc is close to a

whipple recovery. I have also been told that in 3 or 4 surgeons in

this country that can do a total panc. it is safer than a whipple

because there is less risk of fistula, and bleeding out. I know I only

had one drain inplanted, a standard jackson-pratt and it was removed

within 24 hours of surgery because I had no drainage. And I have

prothrombin mutation and require anticoagulation.

I am rambling but I am trying to share the dangers and payoffs. I will

never lie to anyone: this surgery is intense, and recovery is intense.

I don't think its a silver bullet (its not appropriate for all cases)

and it takes a strong mind and will to face. A person undergoing this

will need to be ready to put it all on the line as well as willing to

joyfully face pain each day until things are healed. Its like this; in

1991 I had a ruptured appendix and resultant perotonitis. I had to

have an open appendectomy and exploration to find and remove the pus.

Though I was very sick then and in a lot of pain, it was a walk in the

park compared to the total panc and the first 4 days or so. But it was

" almost " a no-brainer: better than 50% chance of reclaiming a normal

or near normal life (might become insulin depandent).

Wow, I can be verbose. My apologies. =)

Blessed Be,

Bert

[Guest guest]

It depends on what your medical problem is that you are trying to

correct. If you have insulin dependant diabetes BUT DO NOT HAVE

PANCREATITIS then you may be a candidate to receive a transplant of a

DONOR'S islet cells to augment your own. This is becoming increasingly

more common.

If you have CHRONIC PANCREATITIS your may well be DISQUALIFIED from a

total pancreatectomy with islet cell AUTOtransplant IF YOUR ARE DIABETIC.

For diabetes patients that get islet cell donation the procedure is

not that involved. However, because the cells that are added to your

body are NOT YOUR OWN you will require anti-rejection medicine.

For pancreatitis the surgery is VERY MUCH MORE COMPLICATED. The

treatment STOPS your pancreatitis by REMOVING your pancreas. You live

your life from that point on WITHOUT a pancreas at all. In order to

prevent being a brittle diabetic your OWN islet cells are removed from

your removed pancreas and reintroduced into your liver where they

will hopeful start working and prevent your from being a diabetic.

GENERALLY if you have pancreatitis and you want to have the total

pancreatectomy and islet cell transplant you CANNOT be diabetic. Being

diabetic before surgery almost insures your will be EVEN MORE diabetic

after surgery.

I hope this explains it. Please don't take my all caps as shouting.

Its just to try provide emphasis and clarity. I hope it helped but if

not keep asking the question. Someone will be able to find a site or a

better way of explaining it I am sure.

Blessed Be,

Bert

> That very interesting......is that true that you have to have

> diabetes to be qualified for the Islet Cell Transplant surgery? I

> hadn't ever thought about that before! Now I'm very confused.....can

> anyone give us any answers? Thanks!

[Guest guest]

Bert,

I think you explained it just terrifically....(smile).

With hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina

SE & SW Regional Rep

PAI, Intl.

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

should not be substituted for professional medical consultation.

> I hope this explains it. Please don't take my all caps as

shouting. Its just to try provide emphasis and clarity. I hope it

helped but if not keep asking the question. Someone will be able

to find a site or a better way of explaining it I am sure.

Blessed Be,

Bert

[Guest guest]

Andre

here we used to talk on a regular basis back when I first

joined the group... Yes you can have the surgery for pain relief... Crystal and

Myself had this procedure done for that exact reason besides a few others.. One

of things that you have to be is a none Diabetic in order to have this

surgery... One of the reasons that you have to be a none diabetic is your Islets

cells don't work properly if you have Diabetes.. Of you would like Email me

personally and I will give you as much info as I can.... my email us

D87@...

Greater New Olreans La

Area rep PAI

[Guest guest]

,

Of course I remember you. You're from my home town-The Big Easy!

Boy, do I miss that city, you have no idea. Especially when you

consider that the reason I left New Orleans to come here to Atlanta

was due to a job

promotion I received. Ironically, now that I am here and

fairly entrenched, I no longer have the job that brought me here in

the 1st place(nor any job, for that matter) I would love to " chew

the fat " with you once more as you and Shirley are a wealth of

information on this Islet Cell Transplant surgery. Besides, the more

information you can get, the better prepared you are when it comes to

making those important decisions concerning ourselves. The problem I

am having is with your email address. I think the message cut off

part of your address so if you can send me your address again, I will

definitely get in contact with you. If you would like, you can send

your address to me via my email address:

acastenell@...

Or you can just send it by return post. It really doesn't matter to

me as I check this message board just about every day.

Take care my friend. Like they say back home " laisse les bon ton

roullette " (please excuse my poor French spelling-I guess I've been

out here in " Falcon Land " a little too long).

Andre'

[Guest guest]

In a message dated 6/23/2003 1:02:07 AM Eastern Daylight Time,

ajcastenell@... writes:

> as you and Shirley are a wealth of

> information on this Islet Cell Transplant surgery. Besides, the more

> information you can get, the better prepared you are when it comes to

> making those important decisions concerning ourselves.

Hi Andre, Gail and Sue Rebello who have both had the TP/ICT are

expected to be at the symposium also. They had their surgeries before I had

mine

and Sue is the person who wrote Sue's Story which introduced me to the TP/ICT in

the beginning. Without her writing her story and giving out all of the

information about herself and Dr. Sutherland I would never have found out about

the

surgery that helped me so much. I am so eager to finally meet Sue. Gail I

have already met. She is a wonderful person. She is an RN and She had the

Whipple before she had the PT/ICT so I know she will be able to give you loads

of

information. While I was recovering in MN she flew in to visit me from

Wisconsin. A perfect stranger doing something so kind for me. They are great

people who help those who suffer from cp. Shirley

[Guest guest]

In a message dated 6/25/2003 9:53:28 PM Eastern Daylight Time,

ajcastenell@... writes:

> your note of encouragement. I am pretty down in

> the dumps at the moment and have been for the past several days,

> that's why it's taken me a while to respond to your up beat and

> encouraging message concerning others who have ahd successful

> surgeries with Dr Sutherland. I too am looking forward to this

> asymposium, even more so now that I am once again seriously

> contemplating one more surgery. I just wish this would all just go

> away and leave me alone, but I know that this won't happen.

> Sometimes I feel as if I am stuck in some sort of nightmare and can't

> extricate myself by waking up...

>

>

Dear Andre, you know that I understand and everyone else in this group

understands how you are feeling. You more than anyone has gone through so much.

Surgery after surgery after surgery and still pain. Andre, hang tough and

collect all of your medical history and bring it to the symposium. I don't know

if

Dr. Sutherland will have the time to look at it but I know he will listen to

you tell him your history and then he should be able to tell you if you are a

candidate for the surgery. I would also be very interested in learning if he

thinks you have a chance of being pain free. I would want to know the

negatives of one having the pancreatectomy after having three pancreas

surgeries.

You have so many questions to ask. Since I feel that I know you so well and

know how intelligent you are I know that you will be prepared with a list of

questions. I want you to talk with Gail also. She had the Whipple before

having

the pancreatectomy. She now has stomach emptying problems. Her stomach

empties slowly. She doesn't regret having the surgery though. See you at the

symposium. Shirley

[Guest guest]

> In a message dated 6/23/2003 1:02:07 AM Eastern Daylight Time,

> ajcastenell@y... writes:

>

> Hi Andre, Gail and Sue Rebello who have both had the TP/ICT

are

> expected to be at the symposium also. They had their surgeries

before I had mine

> and Sue is the person who wrote Sue's Story which introduced me to

the TP/ICT in

> the beginning. Without her writing her story and giving out all of

the

> information about herself and Dr. Sutherland I would never have

found out about the

> surgery that helped me so much.

Thanks Shirley for your note of encouragement. I am pretty down in

the dumps at the moment and have been for the past several days,

that's why it's taken me a while to respond to your up beat and

encouraging message concerning others who have ahd successful

surgeries with Dr Sutherland. I too am looking forward to this

asymposium, even more so now that I am once again seriously

contemplating one more surgery. I just wish this would all just go

away and leave me alone, but I know that this won't happen.

Sometimes I feel as if I am stuck in some sort of nightmare and can't

extricate myself by waking up...