| Author |
Message |
Michelle
Member
Username: Mponto
Post Number: 1
Registered: 02-2009
| | Posted on Thursday, September 03, 2009 - 11:19 am: | 
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Hi everyone! I received a Liver, stomach, pancreas and small bowel transplant in December 2007 and I was the first person in Western Canada to receive this type of transplant. I am hoping to find others who have had a similar transplant to discuss anything and everything that arises in these types of transplants. I am also hoping to connect with anyone who has had the ileostomy and went through the reversal surgery. My first attempt at the reversal was last October, but 2 days post op, the bowel leaked, I went septic and almost died. They had to bring the ileostomy back. I am thinking of trying for the reversal again but I am really nervous and scared after what happened the first time. I would love to hear about anyone experiences, tips, or anything at all!
Looking forward to connecting with you all!
Michelle |
Diane
Member
Username: Mary_diane
Post Number: 192
Registered: 02-2009
| | Posted on Thursday, September 03, 2009 - 12:04 pm: |
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Wow Michelle,
Where did you have your surgery done? I just had a liver transplant in Nov 08 at Vancouver General. There are a couple of people on this site who have had surgeries as involved as yours, and hopefully they will respond. There are not that many Canadians on this site....yet, but it is a fabulous site, and so supportive.
Take Care and Good Luck
Diane
Diane
Liver Transplant Nov 20, 2008
Vancouver General, BC
“Sometimes our light goes out but is blown again into flame by an encounter with another human being. Each of us owes the deepest thanks to those who have rekindled this inner light.”
Albert Schweitzer
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Michelle
Member
Username: Mponto
Post Number: 2
Registered: 02-2009
| | Posted on Thursday, September 03, 2009 - 12:22 pm: |
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Thank you! I had my tx at the University of Alberta hospital in Edmonton. It has been a very long and hard ordeal and I find not being able to have a normal life the hardest. Its hard for me because I wasn't sick. I just basically took sick overnight bleeding internally and a month later I had the tx. But I shouldn't complain because I am still here! |
Hostess Rise'
Board Administrator
Username: Risa
Post Number: 10260
Registered: 05-2003
| | Posted on Thursday, September 03, 2009 - 12:28 pm: |
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Hi Michelle
Welcome to Transplantbuddies! My heart is feeling for you. Surgery is always risky. If you decide to go for this surgery only do so when you are feeling your strongest. Eat well, get your rest and do all you can to avoid stress before surgery. Let us know if you are going to have surgery so we can pray for you. Take your time in deciding whether this is right for you.
We have Bobbie Jo and Susan P who had multi visceral transplants. If you visit us more often you will definitely meet them. Check out our Transplant stories page to read their stories.
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Missy Girl
Member
Username: Missy_girl
Post Number: 96
Registered: 06-2008
| | Posted on Thursday, September 03, 2009 - 01:27 pm: |
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Hi Michelle
I had a multi visceral transplant in October 2006 at University of Miami/Jackson Memorial. I had my stomach, pancreas, spleen, large intestine, small intestine and duodenum transplanted. I also had the ostomy for about 9 months. I had it reversed in July 2007. It wasn't a tough surgery but I had to have it postponed once because during the biopsy, the cells came back a little abnormal.
If I can be of any help, let me know. I'm glad to answer any questions I might know the answers to.
Michelle
Michelle
dx: familial adenomatous polyposis (FAP)
dx: Gardner's syndrome w/ desmoid tumor
modified multivisceral transplant- 6 organs
October 17th, 2006
University Of Miami/ Jackson Memorial
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Michelle
Member
Username: Mponto
Post Number: 3
Registered: 02-2009
| | Posted on Thursday, September 03, 2009 - 03:08 pm: |
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Thank you everyone! I have been in contact with Bobbijo once and I have found a few other Multi-visceral Tx's on Facebook.
So far almost everyone I know who has had the multi-visceral tx has had the ileostomy reversal with no issues. I have to wonder, why me?? I just feel like I may be stuck with this forever and I truly hate it! It has left me with big self esteem issues, I have missed out on things because of it and not to mention the embarrassing accidents...have I mentioned how much I hate it??
They tried the reversal 10 months post tx and the reversal did work. But I don't know if I just wasn't strong enough or what but the bowel ended up leaking causing an infection. The doctors don't know what happened...they said the surgery went great. But I am a bit of a complicated case. After the tx I had to get 7 more surgeries because of infections and bleeds...and that doesn't include the reversal.
I am much stronger now and have more weight on so I am hoping this will help. I am just really nervous because this is my last shot at this. If it doesn't work this time, my family will never let me try again. And I can't bear the thought of knowing I have to live with it.
Sorry for the long sap story and thanks for listening!
Oh Michelle, did you doctors do anything to prepare you for the reversal, like a change in meds or anything?? I am just looking for any ideas that may help! My meds are Prograf=6mg twice a day, Prednisone = 5mg once a day and Myfortic=760mg twice a day.
Thanks again! |
Missy Girl
Member
Username: Missy_girl
Post Number: 97
Registered: 06-2008
| | Posted on Thursday, September 03, 2009 - 09:28 pm: |
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No, Michelle, the doctors didn't do anything different in preparation for the reversal. At the time, I believe that I was on Medrol, and 2mg Prograf twice daily.
I wish you luck in the reversal if you do go forward with it. As Rise said, all surgeries carry risks. Just do it when you do feel strongest. Good luck. If you have any additional questions, let us know.
Michelle
dx: familial adenomatous polyposis (FAP)
dx: Gardner's syndrome w/ desmoid tumor
modified multivisceral transplant- 6 organs
October 17th, 2006
University Of Miami/ Jackson Memorial
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papillonbleu
Member
Username: Papillonbleu
Post Number: 1499
Registered: 10-2007
| | Posted on Friday, September 04, 2009 - 10:03 am: |
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Dear Michelle,
I am sorry you have had such a rough time post-transplant. Do the doctors know why all of a sudden you started to bleed internally so as to need this transplant? Is it possible that the cause of this may be what complicated the ileostomy reversal? This is just an idea. I remember what it was like having an ileostomy, and I can completely understand why you do not want to have it permanently. I truly hope that once you have really built yourself up in strength and health that you can have a successful reversal if you decide to try again. If I can help in any way, please do not hesitate to let me know. You remain in my thoughts and prayers. Many, many hugs.
Warm regards,
Bobbiejo
Bobbiejo
Forum Leader-Multivisceral
dx: GERD 1995, gastroparesis 2002, pseudo-obstruction of the bowel 2004
multivisceral transplant, 6 organs, 10/06/05
University of Miami/Jackson Memorial Hospital
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Michelle
Member
Username: Mponto
Post Number: 8
Registered: 02-2009
| | Posted on Friday, September 04, 2009 - 10:55 am: |
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The doctors aren't really sure why I needed the tx but they think it was caused by a blood clot to my portal vein. I posted my full story under the transplant story forum also.
They have no idea why the reversal didn't work. They said the surgery went perfectly.
My insides are a little screwed up tho. I had my spleen removed in 1989 and my tx surgeon said the doc did a botch job which gave me a lot of complications after the tx. But they don't think this has anything to do with the reversal.
I am now battling ovarian cysts which are causing me unbearable pain. Depending on what my MRI shows next week, they may decide to remove my ovaries. Since no other surgeon or doctor will touch me (I cannot even get a GP to see me) my tx surgeon will be the one to remove them and thinks it will be best to do both surgeries at once. It just seems like its one thing after another and I cannot get a break! |
Judy
Member
Username: Judy
Post Number: 1
Registered: 11-2009
| | Posted on Wednesday, November 04, 2009 - 04:16 pm: |
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Hi Everyone -
I just joined this website. My husband is waiting for a liver/kidney transplant. Have any of you had that surgery done? Any advice? His meld score is high and we are told it could happen soon.
Thanks,
Judy |
Michel John
Member
Username: Michel
Post Number: 1
Registered: 04-2010
| | Posted on Tuesday, April 27, 2010 - 09:18 am: |
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Hi everybody, I am here for my uncle.
He is having spleen problems. I think he has enlarged spleen. I am wondering are there any preconditions that you might have so you could not get a new organ? I'll try to get few more information so I can post about his condition.
Thank you. |
Michel John
Member
Username: Michel
Post Number: 2
Registered: 04-2010
| | Posted on Friday, April 30, 2010 - 08:41 am: |
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My uncle has diarrhea. Could this be related to spleen problem?I have found that he has similar symptoms as some of guys that are discussing the spleen problems on another forum. So I just wonder could all this be caused with enlarged spleen?
http://www.steadyhealth.com/Spleen_Problems_t55046.html |
