: Re: Leaning Toward Another Surgery

[Guest guest]

In a message dated 6/21/2003 8:41:15 PM Eastern Daylight Time,

ajcastenell@... writes:

>

>

> Shirley,

>

> You don't know how many times you have been on my mind these last

> couple of years. How are you doing now? Do you still consider the

> surgery a success or have you " relapsed " once again into this

> hellhole called pancreatitis. The last I heard from you, you were

> fresh out of your surgery and were " pain free' for the 1st time in a

> long time, if I remember your words correctly. You even were able to

> return to work. Is this still working out for you? I'd really hate

> to get myself involved with just another short-term fix.

>

> Andre'

>

Hi Andre, I would be wonderful really if I didn't have chronic hepatitis B.

I contracted hepatitis B thirty years ago when I was in braces. Chronic

hepatitis has made me almost an invalid. I consider the pancreatectomy and

islet

cell transplant for me a success without a doubt. I am a mild diabetic now

which is no big thing for me. My doctor said that I wouldn't have to take

insulin if I stayed on a more restricted diet. My three month test was 6.2

which is

almost normal. I only take insulin when I eat. I don't have any problems

with highs or lows when I am not eating. Over night I don't have to take any

insulin. My blood sugar is always perfect unless I eat a meal and then my bs

will elevate, the islet will kick in the second hour and bring my bs back to

normal.

I have some digestive problems once in a while but I believe that is due to

too many bowel surgeries I had before my pancreatectomy. Over the past three

years I have had terrible gas pains and vomiting ten times. No one else that I

know who has had the pancreatectomy has had these same problems with there

bowels.

Andre, if I didn't have chronic hepatitis I would feel wonderful. The

pancreatectomy and islet cell transplant saved my life and I don't regret having

the

surgery at all. I am so thankful that I didn't listen to so many doctors who

wanted to do the puestow, Whipple, and various other pancreas surgeries on

me. I searched and learned all that I could about the TP/ICT and knew that it

was the correct surgery for me. I thank God and Dr. Sutherland every day for

the miracle I have been given.

I feel that it is possible that you could have chronic pain even if you have

the TP/ICT. From what I have learned the pain wouldn't be the horrible

pancreatitis pain but pain non the less. You might have to take pain meds but

not

as strong as the meds you have to take now. You could have pain pathways to

your brain by now. From what I understand you might be pain free or you could

have pain. I have heard that a pancreas that has been operated on previous to

the pancreatectomy is more likely to give pain. We don't know what will

happen in your case or anyone else's case but I think you should consider this

and

maybe you could discuss this with Dr. Sutherland along with your other

questions at the symposium. Also I would ask about slow stomach emptying due to

previous pancreas surgeries.

I know that you have suffered so much and for so long. I understand you need

to find a cure. I had pancreas pain from 1985 until my pancreatectomy 2000.

It was hell for me with all that having pancreatitis included. So many

illnesses, surgeries, etc. You know how it is. I would love for you to have

your

entire history and present all of it to Dr. Sutherland and learn what he has

to say about you and your pancreas. You are a special case with all of your

pancreas surgeries but Dr. Sutherland operates with special cases, children and

adults everyday. It is a big surgery but you have had multiple big surgeries.

It is a big decision for you to make and I feel for you. I made it and I am

glad that I did.

I didn't go back to work since I haven't been able to work for a long time

due to chronic hepatitis. Pancreatitis is of the past. I never have any pain

what so ever due to a pancreas that I don't have anymore.

Mark, I believe has a lot of information on the pancreatectomy and islet cell

transplant. Bert, , and a few more who are members of this group

recently had the TP/ICT. I think they might be of help to you. Good luck and I

hope to see you at the symposium. Shirley

[Guest guest]

In a message dated 6/25/2003 10:09:15 PM Eastern Daylight Time,

ajcastenell@... writes:

> do you think I should send him copies of my records

> along with a cover letter explaining my situation and my attendance

> at the symposium or should I just bring them with me and present them

> to him in person (knowing that he will not have any time available to

> peruse it prior to his leaving). I'd like to hear what he thinks

>

Hi Andre, very good question. When I was scheduled for my surgery I was told

by my case worker/nurse at Fairview Hospital to collect my medical records

and send them to her. I believe that she and her staff read my records and took

care of all of my history pertaining to my pancreas disease. I don't believe

Dr. Sutherland has the time to look at the records sent to him. I would

think that the staff summarizes it and gives him the important points. He is so

busy I think it would be impossible for him to do more with medical records. I

think it would be best for you and Dr. Sutherland if you asked him questions

at the symposium and not presented your records to him at that time. In the

meantime why don't you e-mail his secretary Anne Marie Papas and ask her what

would be the right thing for you to do under the circumstances. She might even

speak with Dr. Sutherland about your question and then you will know where he

stands on your medical records presented to him at the symposium versus

questions only. I will give you Anne Marie Papas e-mail address.

papas001@...

Good luck. Shirley

[Guest guest]

> Andre,

>

> I am glad that you are planning on coming to the panel. It is

> immediately following his lecture.

>

> Karyn , RN

> Executive Director, PAI

> Symposium August 28 & 29, 2003

>

>

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