transplant list

Is anyone else here on the liver transplant wait list?

[bystander2002]

I'm looking for some actual support

[OLDTIFF]

http://forums.delphiforums.com/n/main.asp?webtag=liverfailure&nav=messages&msg=112&prettyurl=%2Fliverfailure%2Fmessages%3Fmsg%3D112

[honey1616]

I'm sure that there is some people out there that are and hope that they will see this and take the time to make a comment.  Are you on the list right now and do you have any ideas on how long it will take?  I feel for you because I know it must be hard and please keep us posted....

[Califia]

I know a very nice fellow somewhere on the Peninsula who went through transplant & worked w/ Joanne Imperial @ Stanford.   Let me know if you'd like to connect.

[bystander2002]

Old Tiff, I thank you very much for the link. It looks like a good site and I'm going to do some more reading there tonight. Thanks :)

Chevygal55, I really appreciate it. I should tell you that I am his wife.

Honey15637, yes he's currently on the list (and it is taking too long!) I hope to God that none of you ever get to know what this is all like.

Bzzracer, what I'm really looking for right now are any experiences others have had (that could help me). I'd like to speak to others who are going through this mess. Did you get your transplant? Did you have to have TIPS while you were waiting? How high was your score when you got the call? And my main question: at what score does TIPS become unsafe to perform?

[new-sojourn]

I have a friend, Jack Slater, who wrote a series on waiting and getting and recoverying from a transplant. the series runs time to time in the Seattle Times. Seattle WA.

I just today got an email from him today and he's feeling much better now w/his new to him'used' liver.  You can contact him thru the paper and he is really nice and chatty and even had the news media in the operating rm so its all real and well written.

Since its all in 'real time', the transplant was last fall, Jack has good knowledge of the mental and emotional stuff.

[bzzracer]

I was in 2004. What do u need to know?

[honey1616]

Talk about fast delivery,,,lol  I didn't expect reply so quick from the dr.  This came from Lou at out of bounds (his dr) for those of you that know Lou,,,he was kind enough to get immediate answer for Bystander.  
I hope this helps on some answers for you both and relieves your stress a little....






From the doctor.

TIPS is trans-jugular intrahepatic portosystemic shunt............basically,
the radiologist goes with a catheter thru the right jugular, crossing thru
the heart into the liver, and makes a bridge (channel) between two sets of
veins (portal and hepatic veins).............they represent two different
sets of circulation in the abdomen and increased pressure in the portal
system because of compression by nodules in the liver (as occurs in
cirrhosis) is what leads to bleeding from the stomach, rectum, etc.  

TIPS is a bridge to transplantation..............the reason being that once
the channel is created, ammonia that is restricted to the portal system now
crosses into the hepatic veins (systemic circulation) and goes to the brain,
causing progressive drowsiness.  Therefore, it is used to buy time while
waiting for imminent transplant.  It used to be a major surgical procedure
earlier, but with new techniques in radiology, the procedure is now much
minor.  

There is no specific MELD score which predicates the need for
TIPS.........it is clinical judgement depending on each person's
condition...............any sedation used is very temporary and should not
be an issue........................additionally local anesthetic is used on
the skin so that it is pain-free.  It is a relatively safe procedure in good
hands.

[bystander2002]

mikesimon (or anyone else that would know the answer to this):

At what score is TIPS unsafe to perform?

Another question:

Also, I see that sedation may not be absolutely necessary (?) for TIPS.
Is that true? Would it be safer without sedation?

At what score wouldn't you risk sedation?


I'm sorry to come here blurting out questions, but I really need to know this right away. I have the POA and I'm supposed to decide this (!)
I read through the articles on TIPS at the other site and it seems that a TIPS at this point could be very risky.

I'll check back here tonight

[bzzracer]

The first UNOS score I received was 24 on March 9, 04. This is normal. Normal start scores range from 24-26 but all that depends on how sick your liver is. The sicker you are the higher the score. It is my understanding that no one is first rated higher than 35 at which time you're considered end stage.
My transplant was March 19, 04. No typo, eight days later I was called. I was lucky, my blood type is AB positive. This along with my tumor put me at the top of the list.
While in post op recovery, everyone I spoke to was considered dead, hours to a few days to live prior to transplant. Their scores ranged from 40-44 and ALL were type O with  2 guys non-hep infected. You see 40 is actually the top the scale but UNOS will keep rating you until you pass. Sorry, I don't know what TIPS is. If you wish to know what you have to go thru to get on UNOS' list I can tell you about the numerous tests you will have to endure prior to being accepted to a program. Other than that, I wish you the best.

[mikesimon]

I'm sorry but I don't know anything about TIPS procedure. That is one procedure I didn't need. Mike

[honey1616]

http://www.transweb.org/qa/asktw/answers/answers9511/TIPSprocedure.html

I found this and hope this well help somewhat.  You probably have read it but it will also explain more to everyone here.  I had no idea what this procedure was until now.  I will also check over at another forum and see if I can get some actual dr advice on this procedure for you and your hubby and will let you know something.  I'm so sorry that you both are dealing with this!

[mikesimon]

I was transplanted in June of 2000. I'll help you in any way I can - just let me know if there is anything I can do. Mike

[Wools]

My son (age 22) was on the list in 2001.  He waited 6 months and was told it could be up to 2 years.  We didn't feel the center was moving fast enough because his health was failing (the liver disease PSC)  We were given advise to double list him at two centers in two different regions.  We did this and listed at an agressive transplant center.  He actually got a liver in two weeks.  He is doing wonderful and leads a somewhat normal life.  He takes his meds, has routine doc visits (every 3 months), yearly biopsy, labs every three months. His overal health is good.  Some centers will let you double list, some won't.  I know the transplant list follows a different structure than they did in 2001.  Get on the UNOS web site and study the centers.  You need not only an aggressice center but also an aggressive procurement agency. Those are the people that obtain organs to transplant.  A center is only as good as the procurement organization that gets the organs. The more you educate yourself about the entire process, the better your chances are.  We were definately so fortunate to have received a liver.  Lots of prayers go along way too. I hope this helps you.....

[imkindly]

Could you give me a link to Out Of Bounds?
Thanks :)

[cuteus]

http://forums.delphiforums.com/n/main.asp?webtag=hepcotb&nav=messages&prettyurl=%2Fhepcotb%2Fmessages

out of bounds' url

[imkindly]

Thanks :)

[honey1616]

I reread this post tonight and just feel so bad about this. It seemed like a pretty easy procedure with an experienced dr. I just don't know what could have gone wrong....