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Posted 10/20/2010 3:02 PM (GMT 0)
Met with the interventioal radiologist  yesterday afternoon.  They want to do the tips procedure on me because my portal vein is too small and clotted to hook up to a new, transplant liver.  They have used procedure on 38 patients and have improved the portal vein in 36 cases.  They have had two failures.

They won't know if they can improve  my vein until they go inside.  In the meantime, my transplant center is getting me re-listed for transplant in case I  go into fulminant  liver failure during the procedure.

Tips is scheduled for Monday, November 8th.

I have known about the clot for a while but was not aware my portal vein was compromised.

Susie

"Giant Cell Hepatitis", crypthogenic cause

Age 49

Posted 10/20/2010 5:46 PM (GMT 0)

Susie, the very best of luck to you with the TIPS.  I hope it works out as well for you as it has for Timeless/Rick.  It will create an alternate passage between your portal vein and the hepatic vein.

Our thoughts will be with you.

Hugs,

Connie

Posted 10/21/2010 2:27 AM (GMT 0)
Rick,

How long has it been since you had the tips done?  Are you still waiting for transplant? Did the tips make your encephalothopy worse? 

 I don't have esophogeal varices or ascites but was suprised to learn that my entire portal vein is in bad shape.  The doctors had mentioned I had a clot, but I did not realize it has compromised the vein.

The radiologist is talking about giving me platelets before the procedure because he is veryconcerned with bleeding.  Depending on how it goes, he may keep me in the hospital overnight after the procedure.

Susie

Posted 10/21/2010 3:00 AM (GMT 0)
Susie and Rick - can you please tell me what the complications/risks that are involved with the TIPS. My other half has ESLD and has been getting parencentesis done weekly for about 2 1/2 months. His PCP was supposed to do some checking on the TIPS for us which we hope to discuss with him at our next appointment on the 25th, but it would be great to hear some "real life" experience and knowledge.

Thanks - Diane and Dave

Posted 10/21/2010 3:30 AM (GMT 0)

Susie, it may take awhile before Rick gets back here, but I can tell you that he improved so much that he was taken off the transplant list.  He was wrongly diagnosed with hep C.  He has cirrhosis from alcohol, but has been sober long enough that his liver seems to be recovering from the damage he did to it and he's doing great.

Hugs,

Connie

Posted 10/21/2010 1:08 PM (GMT 0)
Mike clearly had good quality of life after the TIPS was put in.. and that was for 3 1/2 years... and as Rick said he did have to follow diet etc... he feel off the wagon and I'm sure that the binging is what shortened his life... well contributed... Mike had Hep C, ESLD... anyways... the TIPs was well worth it.. he went from extreme... throwing up blood etc...high ammonia count... to a pretty good lifestyle... as long as he adhered to diet restrictions... he never went back to construction work...  Sandi
Posted 10/21/2010 4:24 PM (GMT 0)
Thanks Rick for your insight.  They are talking about going through my neck, but they may have to go through my abdomen as well.  They have mentioned the possibility of bleeding, liver failure, and death.  Right now, the portal vein would not be in condition to accept a transplant liver. 

 I want to be prepared when my meld qualifies me for transplant.  The center is currently evaluating a lesion which grew .5cm since June and an area of interest.  These conditions could put me toward the top of the list.

Rick and Sandi:

You both mentioned diet after the tips.  Right now I am on a low sodium/medium protein diet.   Are there additional dietary restrictions  I will have to follow?

Thanks for you imput.

Susie

Posted 10/22/2010 1:43 PM (GMT 0)
I had Mike see the Mayo dietician down in Rochester, MN while we were down there for a transplant consult... which never happened.. but that dietician recommended Ensure... because Mike had hard time chewing and swallowing... and had lost a lot of weight at that point... because of this recommendation (coming from the medical field) and the chewing issue... Mike was approved to have Ensure paid for by Medicare... although that approval came three days after his death... we had to fight it for 4 1/2 months...low protein...was part of this regimen... and frequent small meals... although Mike often went to Denny's and did not adhere to the diet the way he should have... I didn't have the heart to tell him no ... he said he would go out the way he wanted to...and he was't drinking so...that's the way it was...I would say a dietary consult.. sorry was so longwinded...and I'm not sure if it was Vitamen D or B for the muscle cramping but it helped right away.. Sandi

Posted 10/23/2010 7:22 AM (GMT 0)

Susie, Doug had his TPS done Dec 2001 and it was done via the neck also which I think is standard. His did have to be cleaned out periodicaly due to build up but some people never have to have the clean out done, we joked about the Roto rooter time. The poor man would slosh like a water bed when he walked. They did have to plug the TPS in 2008 due to complications that were not common with most people but then he always had to throw the doctors a curve ball. I do think you need to give yourself every chance you can to get a transplant so hang in there.

Sue

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