Re: Bill's comment about duct reconstruction

[Guest guest]

Penny,

This was discussed about a month ago on here. Here is a brief recap of the back and forth conversation that took place and the source of my input to the discussion. Maybe Laurie can enlighten us on any discussions she had with the docs at her evaluation.

Synopsis of earlier discussion:

_________________

2/15/1999

As for me, I had liver surgery in '89 which I'm sure has held off my liver transplant. I had a blocked main duct which they repaired & replaced.

Laurie

_________________

2/16/1999

Laurie,

Thanks for the response. I didn't know they could repair or replace the main bile duct. Is this common? I have had my duct unblocked via endoscopy 4 years ago upon diagnosis and haven't had a blockage since. I'll know more after my visit to Boston Medical Cntr. in March.

Janet

__________________

2/16/1999

Janet--

I don't know how common it is to replace the main duct. All I can say is that I was the first one to have this done at Mayo. Lucky me. That was back in '89, so I'm assuming it's more common now.

Laurie

__________________

2/16/1999

Laurie,

I too was told that you couldn't have the main duct replaced. Can you give some more background on this? Or lead me too a source?

Larry

__________________

2/16/1999

Larry--

What they did with mine was clean out the scarring and use the gallbladder as a patch over the top of it, thus creating a new duct. I was the first one to have that done at Mayo. The dr. said he had read where another doctor had tried it earlier. He said my gallbladder was in a good position in relation to it and it just seemed right to do it. I have no source to refer you to other than it was done in 12/89 at Methodist Hospital, Rochster, MN by Dr. Nagorney of Mayo Clinic. I'm sure it's written up somewhere--they said I was a good one for the textbooks. (Not what you really want to hear, esp. from Mayo.)

Laurie

__________________

2/16/1999

I have also been told by my hepatologist that the main duct cannot be replaced when I questioned why they can't do something like bypass surgery, and also told me that they cannot simply remove the scarred sections. Although I don't fully understand the reasons, it has something to do with the nature of the duct tissue. We tend to think of it as a passive tube through which the bile passes, but in fact the entire duct is active in storing and passing bile as necessary.

A procedure name would be helpful in tracking down whether this is something that is not routinely done, or is no longer done.

Russ

_________________

2/17/1999

On the Bile Duct Restructuring, I've had discussions with my gastroenterologist on several occasions. He had talked about a specific doctor here in Philadelphia that was good at it and also about a hospital in Boston that has a good reputation for this kind of surgery. But recently he has told me and I have read elsewhere that this surgery isn't being done much because it makes subsequent liver transplant very difficult. As a matter of fact, the author of one of the articles is at Mayo, an article by J. Eileen Hay (e-mail jhay@...)titled " Liver Transplantation for Primary Billiary Cirrhosis and Primary Sclerosing Cholangitis: Does Medical Treatment Alter Timing and Selection? " appeared in the September issue of " Liver Transplantation and Surgery. " Here is one appropo quote from the article: " In the past, extrahepatic strictures were occasionally managed surgically, but such therapy makes subsequent liver transplantation technically much more difficult and is now contraindicated. " You may not want to hear this, Laurie, but it may give all the more reason for you to argue to stay at Mayo since that's where your original bile duct reconstruction was done and the docs there know your situation well from twelve years of treatment.

Hope this helps, and good luck to all.

_________________

2/17/1999

Bill

Regarding the second subject, you're right--not good to hear, but then I've always said I'd rather know than not. This is something I will definitely bring up to the drs. in Omaha & ask them if they have done a liver tx w/my type of previous surgery (also had my large intestine removed, which won't make it any easier). I've always heard that prior abdominal surgery makes it a more complicated liver tx, but never specifically re: the duct. As far as the article in the Sept. issue of " Liver Transplantation and Surgery, " I don't suppose you have a copy of that article? or know where I can put my hands on one?

Thanks for all the good info., Bill. Really appreciate it!

Laurie

_______________________

2/18/1999

Laurie,

I found this article on the " Liver Transplant and Surgery " website. The URL for this specific article on that site is

http://www.ltsjournal.org/cgi/content/full/4/5/S9

If you don't have any luck getting to it this way, let me know and I'll be glad to mail you a copy.

Bill

Bill, 4/8/1999

_______________________

-----Original Message-----From: PR Weller Sent: Wednesday, April 07, 1999 11:37 AMTo: egroupsSubject: Bill's comment about duct reconstruction

After this episode my regular doctors referred me to the Hospital of the University of Pennsylvania for an evaluation. There was a little thought given to bile duct reconstruction now because of these recurring cholangitis episodes even with the stentig. But my regular gastroenterologists as well as the transplant team hepatologist/gastroenterologist and surgeon all agreed that this isn't a good idea because subsequent liver transplant is rendered very difficult if not impossible by this kind of surgery. So that, Peg, is how I got to the transplant evaluation process at this point.Bill, What do you mean by reconstruction making tx difficult if not impossible? This scares me since my bile duct was replaced. The whole surgery was done by the tx team and I was listed thereafter so I assumed that the surgery was done with tx in mind--I was most concerned about scar tissue and adhesions....... Please elaborate! Penny

eGroups Spotlight: " innovative-teaching " - keeping teachers up to date with Internet resources. http://clickhere.eGroups.com/click/18

[Guest guest]

At my tx evaluation I specifically asked the surgeon if

my prior surgeries (one being the colectomy where my

large intestine was removed and the second, more

importantly, the one where my main duct was operated

on) would make me ineligible for liver tx. His response was

" No. It's a concern, but it won't keep you from it. "

We explained to him that both surgeries were done at

Mayo in Rochester and both were done w/the knowledge

that a liver tx was going to be needed later on and that

they did whatever they could to make it as easy as possible

for later liver tx.

Laurie

------------------------------------------------------------------------

[Guest guest]

I also want to comment on Bill's statement about transplantation after bile duct surgery. I too had this surgery because they had no choice -- my common bile duct was completely closed off by the time the problem was discovered. Patients who have had this surgery CAN be transplanted although in the past they have had poorer outcomes than patients who have not had reconstuctive surgery. According to a transplant surgeon at U of Penn that I spoke with, recent developments have improved the outcome of these patients, and the survival rate is now only slightly lower than with " regular " transplant patients. It is important, however, to be transplanted by a surgeon who's dealt with these situations before.

Bill's comment about duct reconstruction

After this episode my regular doctors referred me to the Hospital of the University of Pennsylvania for an evaluation. There was a little thought given to bile duct reconstruction now because of these recurring cholangitis episodes even with the stentig. But my regular gastroenterologists as well as the transplant team hepatologist/gastroenterologist and surgeon all agreed that this isn't a good idea because subsequent liver transplant is rendered very difficult if not impossible by this kind of surgery. So that, Peg, is how I got to the transplant evaluation process at this point.Bill, What do you mean by reconstruction making tx difficult if not impossible? This scares me since my bile duct was replaced. The whole surgery was done by the tx team and I was listed thereafter so I assumed that the surgery was done with tx in mind--I was most concerned about scar tissue and adhesions....... Please elaborate! Penny

eGroups Spotlight: " innovative-teaching " - keeping teachers up to date with Internet resources. http://clickhere.eGroups.com/click/18

[Guest guest]

--

Thanks for the info. I heard, too, that the handling of

the duct in the tx surgery is dependent on its size, etc.

Laurie

------------------------------------------------------------------------

[Guest guest]

H. -

I don't remember the exact particulars, but it has something to do

with the size/condition of the recipient's outer ducts as to how they do it.

Sorry I don't recall more--it was just info. overload when we were there &

I really didn't want to remember too much of that part. They did give me a

booklet which has quite a bit of info. on the actual operation itself. If you

or anyone is interested, I'll type it out if someone wants me to. One

sentence

sums up what I remembered " There are two different ways to connect the bil

duct to the intestine, depending on the liver disease of the patient. "

Laurie

------------------------------------------------------------------------

[Guest guest]

Jacquelyn--

I think a support group for pre tx patients would be good

for you. I wish we had one here. The support group I

went to one time was post tx of all types, not just liver.

Laurie

------------------------------------------------------------------------

[Guest guest]

I WOULD LIKE THE INFO WWHEN YOU GET A CHANCE THANKS MARSHA

------------------------------------------------------------------------

[Guest guest]

Laurie--

Thank you for the response. My work and education backround leads me to get

a little too graphic at times.

I tend to be a little too detail-oriented anyway, and having this dx seems

to make my curiousity even worse-maybe as a means of feeling some control

over the unpredictable situation. Anyway, hope my question about tx surgery

didn't bother anyone. Take Care.

H.

Re: Bill's comment about duct reconstruction

H. -

I don't remember the exact particulars, but it has something to do

with the size/condition of the recipient's outer ducts as to how they do it.

Sorry I don't recall more--it was just info. overload when we were there &

I really didn't want to remember too much of that part. They did give me a

booklet which has quite a bit of info. on the actual operation itself. If

you

or anyone is interested, I'll type it out if someone wants me to. One

sentence

sums up what I remembered " There are two different ways to connect the bil

duct to the intestine, depending on the liver disease of the patient. "

Laurie

------------------------------------------------------------------------

eGroups Spotlight:

" Kosovo-Reports " - Direct reports from Kosovo/Serbia/Yugoslavia.

http://clickhere./click/5