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  • Anyone ever have a liver shunt?

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    Old 12-03-2009, 07:29 PM   #1
    kierrasmommy
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    Exclamation Anyone ever have a liver shunt?

    Hi,
    I have a question...my Dad has been suffering with many health issues stemming from his cirrosis. He quit drinking 10 years ago and his liver did improve but over the years and now with diabete, low cell counts in his blood and bleeding varices he seems to be worsening.

    They already told him because of his health and age (67) he wouldn't qualify for a transplant if he even survived the major surgery in itself, but they will give him a shunt if worse comes to worse.

    I want to hear stories of other peoples experiences with liver shunts...good and bad. My Mom seems to think that when he gets the shunt that his health will deteriorate quicker and he wont have much time left...is that true? Or can someone live many years with this shunt?

    Thank you for your feedback.
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    Old 12-04-2009, 08:49 AM   #2
    feelbad
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    Re: Anyone ever have a liver shunt?

    hi KM, while i know i already answered your PM,there was alot i had to leave out since we are very limited in those things as to how many charchters can be used? the ONE huge thing about if your dad did recieve that TIPS is that HE would also feel much better nothaving that insane level of hypertenwsion within that upper abdominal and into the thorasic area. it just instantly relieves pressure that the bandings cannot. this was the main reason we chose to go with that TIPS in the first place one his docs had spoken to that doc in CA? he was all set to start what sounded to us like one hell of a long drawn out nightmare of ERCPs and repeated bandings on the 'latest' bleeders but never really hitting on getting rid of that main underlying generator. it just made sooo much more sense to us anyway to get rid of what just WAS a huge lifethreat at that time in him before anything else.

    while your mom has every reason to be scared, espescially with changes in treatment that you just cannot always predict the outcomes? but honestly, and for soo many different reasons KM, your dad would simply 'feel' soo much better from the huge reduction in that constant back up pressue in the chest area, the varices would immediately stop being created since the backed up bloodflow within the no longer functioning PV would now be redirected with that 'new' stented route. it really is a pretty simple procedure done all from the inside by really amazing docs called the interventional radiologists? these people just do sooo many amazing procedures every day that improve lives and save lives and its all done from within the vascular structures only. these great guys at the U did soo many different procedures on our son while he was in liver failure and also ppost transplant. they really are amazing. my life was also saved by the "neuro" form of the interventional rad when i developed an aneurysm in my brain and it was taken out of the picture when an interventional neuro rad just was able to place coils in it all done again, from within a main artery to the annie in my brain. they just do some really cool stuff in vessels.

    they go into the jugular vein at the neck and snake a stent all the way down to the liver and place it in a 'prechosen" before the procedure good vein(this is why the actual name of this is called
    "transjugular intrahepatic portosystemic shunt") whew, still remember that one. everything is just done right thru that jugular vein on the side of the neck so it is very NOT invasive to the patient at all like a surgical procedure would be? just one small cut over and into that jugular, thats it. she may NOT really understand this part of the procedure,that could be why she is so apprehensive too? i just really do think if she better understod all the pros of this procedure, espescially just to make alot of things less risky and much more comfortable for your dad right now and after, she would more than likely want it done?

    the thing here is,when any patient reaches that portal hypertension phase of liver disease, there IS NO blood flow going thru that P vien anymore. with no TIPS there are two and other possible issues you are dealing with which number one, the hypertension and the back up that is causing the fragile vessels that were never ment to carry high pressure bloodflow to now be carrying it so they break and bleed. THAT part is immediately taken away one they start opening the shunt. the other, and you cannot get around this one really at all only because the ammonia normally is simply removed from the blood as it would pass "thru' that P vein? the ammonia levels just have to be watched like they would with or without this being done, ya know what i mean? our son had to have weekly ammonia blood draws along with ALOT of lactulose which he just hated. try telling a 12 year old just why he NEEDS to always have runny poop?

    just considering the fact that your dad unfortunelty cannot have that life saving tx,anhd i really am so sorry that is not an option for him,the least that can be done is to try and make HIM much more comfortable and NOT have to keep going in for that stupid repeated banding crap. that just sounded soo nasty to us when his tx doc was explaining what they were expecting us to just do and go thru for like ever til when??? with that TIPS, that banding got cancelled and it was done as soon as the IRs had chosen that "new" portal vein vessel. they do scans so they already just know way ahead of time what vein they are going to use. then they set that procedure and its a done deal. it really does not take a huge amount of time either. but i could not more highly resommend this for your dad right now KM. i do think,espescially since he will not be getting the Tx,that this one procedure would just make HIM feel soo much better and not have to be dragged to procedure after procedure for banding. and of course the ERCPs that they have to do to even do that banding. that would ALL just be gone for him with a brand new TIPS.

    given what i went thru,what i saw and how much clearly better our son simply felt post stent,i would go with this again in a heartbeat if i had to do all over again hon. the pros in your dads situation right now FAR outwiegh any real cons, ya know? if nothing else, just have your mom actually read this. it may help?

    i do wish you luck hon and if you have anymore questions, just ask.K? hang in there KM, marcia
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    Last edited by feelbad; 12-04-2009 at 08:51 AM. Reason: cannot spell

     
    Old 12-05-2009, 08:10 PM   #3
    kierrasmommy
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    Re: Anyone ever have a liver shunt?

    Thanks Marcia,
    I too thought this was supposed to be a good procedure, but my Mom thinks (not sure if its because she misinterpreted or where she got these negative thoughts) but she thinks that the TIPS procedure was being held off as a last resort....for when everything is going downhill for my Dad and its just to make him feel comfortable for the little time he'd have left....I know it will never cure his liver condition, but how long can he live with the TIPS? In your case your son had the TIPS until he got a new liver right? How long a time frame was that between surgeries. And did they ever say that the TIPS can only last for a certain period of time before it fails? Can a person live for years after having the TIPS?

    She thinks that after he has this procedure that it will affect all his other organs to the point of his moods being unpredicable, and that when he gets to that point he may need to be hospitalized because she won't be able to handle him.

    Thanks again for all your information. I appreciate as much as I can learn.
    Joanne
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    Last edited by kierrasmommy; 12-05-2009 at 08:11 PM.

     
    Old 12-06-2009, 10:09 AM   #4
    feelbad
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    Re: Anyone ever have a liver shunt?

    in all honesty KM, tell your mom that they SHOULD have just done this right away, before even doing the very (in my eyes anyways) barbaric bandings that just have to be done over and over and over again(to me even thinking of putting our son thru that hell WAS a big old nightmare for me to even think about?). the biggest thing here about if they just HAD gone ahead and done that TIPS right away? that bleeding would have simply stopped, right after that shunt was turned on up at the jugular where they just place it and the stuff only stays there for a couple of days, then its all removed and life goes on and you do not even know from the outside that this stent is even there at all. if anything KM, the impact that getting all that huge pressure off has on all the other organs makes things BETTER for him, not worse. right now he more than likely has an overly enlarged liver and spleen and it is also impacting all of the other organs with backed up blood flow? once that stent just gets placed, ALLLL that pressure and backed up blood just has a brand new place to flow again(the overall organ size should also reduce to a certain degree when it is no longer engorged with backed up blood?). this is just sooo freaking huge KM. your mom just needs to really see this part. his condition would more than likely improve and not deteriorate like she seems stuck on thinking for some reason. if my 12 year old had this for his P hypertension, it is definitely NOT something done as a last resort, ya know? it was truely the very BEST thing they could have done for him then.

    i seriously think that your mom has equated this procedure too as the 'last resort" type thing? when this should just have been done to actually REMOVE the most major type of lifthreat from that P hypertension just being there and what that back up of blood casues? i am really just shocked that in this day and age that his docs did not actually SEE how important and crucial the TIPS was then??? this has me completely baffled actually. it was just a stupid call on his treating docs part ya know? how long has he been going thru the bandings? my son got his TIPS way back in 1999 as the very first peds at the U of MN to even try it on and it did its job amazingly, let me tell ya. i just cannot even THINK of ANY good solid real reason as to just why the TIPS was not done when his P hypertension just presented itself? thats how stupid this just sounds to me in how your dad was being treated with the 'old' bandings that do NOT take away the underlying problems like that TIPS just does. it should have been the FIRST choice, and not the last. make SURE your mom just knows that. the DOCS were stupid. sorry thats just how i feel given what that TIPS just did for my son and what better quality of life without all the crap your dad 'could' have been having all the time they chose to only band. maybe only because of the lack of being able to actually tx they did not feel that he was even going to be here as long as he has? sorry to say that but i just find it sooo crazy that they did not just do this in the first place for ALOT of solid medical reasons and your dads comfort and not having to repeatedly go thru what he has been forced to already. that just really breaks my heart for you and yourt family. it did NOT have to be that way KM.

    tell your mom that they did the TIPS on my then 12 yerar old son only because it WAS the BEST possible choice over bandings. they certainly were not looking to make him feel better before he passed away, ya know what i mean? they did it only becasue it WAS the best possible choice and what it would take away that was even creating the bleeding at all. my son said he felt sooo much pressure and pain before that TIPS was placed, once it was done and a week stay to just stabilize 'him' he was back at school, and that particular pain and pressure was just gone. also no more nosebleeds that were happening alot before it and no more vomiting up blood!

    we were told that with the TIPS our son could even wait up to ten years before any transplant would have to occur. but his actual Dx changed along the months from oct 99 when he had presented with vomiting blood and we even KNEW he was actually sick, to on may 19 2000 i had to bring him to the ER for horrid pain on his L side. it gets kinda invloved here with the new Dx he got but that TIPS just did its job til it was just removed along with the liver to make room for the transplant on june 7 2000. the only thing he had to do besides the weekly ammonia checks(which you just always have to do even with the bandings) was get an ultrasound every couple months just to make certain that there was no obstructions like possible blood clots growing within that stent? but that really was it. he was not actually placed on any blood thinners like other people are when they get stents placed, only because with the liver crap he did not HAVE good clotting ability which i am assuming your dad is kind of at too? so in that case the low clotting factors are kind of a good thing in a way?

    that TIPS placement is all just one single procedure,thats it. they find that good vein before hand(before the day of that actual TIPS placement),they snake that sucker down there and that should be IT. no more repeated crap like with the bandings at all what so ever in the norm of it all. i would very very highly recommend to ANYONE who is in P hypertension to just do that TIPS. it was just amazing in how it helped our son, and in soo many different ways.

    if you want to hon, i could answer your moms questions i think if she wanted to actually get on here and ask? i just see her not doing this one really good thing for your dad like totally out of fear and assumptions and not what actually should have been the VERY first choice. i just don't get that decision at all, not at all when the TIPS just does what it does for patients ya know?

    i hope i aanswered everything,whew. if your mom or you have any other questions KM, just ask away,K? i do hope your mom can see the true value here in just doing this one thing for him. its not at all what she seems to think it is. just tell her about my son KM. seriously. his was done becasue it was simply the very best thing to do,not to prepare him for a more comfortable death. i do hope you can change her mindset and he can get this done. honestly KM? he WILL feel soo much better and you can bypass the banding procedures forever. let me know how things are goin,K? hang in there hon,marcia

     
    Old 12-11-2009, 07:45 AM   #5
    feelbad
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    Re: Anyone ever have a liver shunt?

    just wondering how all things are going KM. let me know when you can, marcia

     
    Old 12-13-2009, 04:23 PM   #6
    kierrasmommy
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    Re: Anyone ever have a liver shunt?

    I've written a letter to my parents Dr and I'm going to mail it this week about my Dad's condition and a few issues with our mother. We are almost sure our parents have gotten confused over all the medical appointments and are making the wrong medical choices because of it...getting all the info mixed up or incorrect. I'll keep you updated...so far nothing medical has happened. Thanks for checking in. I appreciate it.
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    Old 12-14-2009, 09:00 AM   #7
    feelbad
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    Re: Anyone ever have a liver shunt?

    sounds like a REALLY great plan there KM. its hard to even know really just what they are and are not getting or really 'hearing' when they get told something so the letter is a really great idea. please keep me posted hon, take care, marcia
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