When TIPS doesn't work...

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mrsquickgt
Regular Member


Date Joined Mar 2009
Total Posts : 27
   Posted 3/4/2009 8:39 PM (GMT -7)   
My Mom had the TIPS in January 09 and within the first 24 hrs they were having to drain her again.
 
She has scarring on her lungs from the numerous times of them draining her that they can't get to half the fluid. They have talked about doing a scraping but the doctors haven't talked much more about that option.  Tomorrow, Thursday 5th, we go back for a scope to see why the TIPS isn't working. She has had a UI for the past month, her lasics (sp) isn't working, and she has been on a VERY low sodium/no sodium diet since the first of the year. They will also be pulling more fluid off tomorrow after the scope.
 
My question is this: What happens now that the TIPS isn't working? I have read that it was a last resort type thing. Her memory and amonia levels have been great ever since the procedure which is another thing that has led me to believe that it never truly worked. She had a lot of clotting in her veins prior to the TIPS and had already been in for bandings 4-5 times of the varices. She is on the transplant list but not sure where her MELD score is now that the TIPS is not working.
 
Anyone in the same boat?
 
Thanks
Margaret

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/4/2009 9:09 PM (GMT -7)   

Margaret, I just wanted to welcome you to the forum.  I have no idea what happens in the case of a failed TIPS procedure.  I think your best bet is to wait and see what the outcome of the scope is and what the doctors have planned for your mom next.

I know you will receive a lot of support here.


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 3/5/2009 3:49 AM (GMT -7)   
Margaret

Just wanted to add my welcome to the forum. I really don't know anything about the TIPS procedure but I do know that there are several people here that loved ones and themselves have had it done. So hopefully they will be by soon to answer your question.

Good luck on this journey

Lucy

mrsquickgt
Regular Member


Date Joined Mar 2009
Total Posts : 27
   Posted 3/5/2009 7:50 PM (GMT -7)   
Thanks hep93 and Lucy

Today we went back for a scope to determine what had happened and the doctor saw that her portal, hepatic, and the shunt were 100% blocked with blood clots. She heard him say, "I've never encountered something like this before" while he was there looking around. He used 2 balloons and moved the clots around to the center of each canal and then added 3 more shunts. Now the fluid/blood is flowing around the edges of the veins and the shunt as well as the 3 other shunts.

I'm about to do some homework but with the clots now pushed to the center what is preventing them from traveling to her heart or brain? I was on my way there to pick her up and my sister had left just as they were finishing up with her so we both missed talking with the doctor. They also pulled 1.5 liters of fluid from her lower lung and that really didn't help alleviate her breathing difficulty. All he told her was that everything should really start to flow now.

I'm confused I guess....

Margaret

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/5/2009 9:09 PM (GMT -7)   
That is a bit confusing.  My thought was why they didn't remove the clots or give her medication to dissolve them?  I know it's difficult to get ahold of the treating physician.  Since the doctor said he had never encountered something like that before, he may need to do some homework himself to determine the best course of treatment at this point.



hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

Post Edited (hep93) : 3/5/2009 9:12:15 PM (GMT-7)


mrsquickgt
Regular Member


Date Joined Mar 2009
Total Posts : 27
   Posted 3/12/2009 5:17 AM (GMT -7)   

Good Morning all

I thought I would give an update since it has been now 1 week since we went in for the eval of the TIPS. My Mom lives alone but only 7 miles away from my sister. I call and check on her daily but live an hour away. I have spoken to her everyday this week and all seemed well right up until yesterday when we couldn't get her on the phone.

My sister went over there and our Mom was very jaundice and VERY confused. She knew who my sister was but could not get off the sentence she was stuck on. There were signs of her doing odd things around the house, things that just weren't our mother, and she had been talking on the phone....to dead air. sad My sister called the liver coordinator and he in turn called her doctor. We then got told to take her to ER.  So, off we went and once evaluated Mom knew the year, the president, but thought she was at St. Luke's (a place we haven't been in 6 years) and you could tell she was at a loss for words. The think process is there just not the words to speak the thoughts.

A round of blood work and Dr. Monsour just so happened to be there that night. (He has been with us since Day 1...18 yrs ago) Her amonia levels are at a 56, bilirubin is elevated, liver counts are elevated, but the bright side is her white blood count is good. We've had the UTI since January. She has a strong adversion to the Lactolose so he was going to have to administer it an alternative method just to get it in her and he was going to do some blood cultures as well as find out why she is having the blood clots. I asked what her MELD score was and he said he wasn't sure that he was going to recalculate it with the new numbers from last night. I told him to throw in some bonus points being we are at Methodist every week it seems.

She has such bad trembles in her hands and legs so they put her on a bed with an alarm incase she gets up. I got home late last night and after I get the kids to school I'm  headed back up there.

It upsets me that the doctors let this slip and didn't send her home, or even call in, a prescription for the Zyfax (not sure on spelling) to help with the Encephalopothy. I KNEW we would have this problem after they put in 3 MORE shunts in. I was asked to stay out of her medical decisions many years ago and to handle her financials after I tried to get her to get a second opinion 10 years ago...if not longer.

Hopefully the Lactolose has helped and we get the jaundice under control.

 

I'll post back up tonight.

Thanks for the prayers


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/12/2009 11:58 AM (GMT -7)   

Mrs. Quickgt, thanks for the update.  I am so sorry all this is happening, but perhaps your mom's urgent medical problems will be gotten under control while she is hospitalized.  I think the med you meant is Xifaxan.  There is a medical word list on the forum, probably on page 2 now.

Keep us posted.


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


mrsquickgt
Regular Member


Date Joined Mar 2009
Total Posts : 27
   Posted 3/13/2009 4:45 AM (GMT -7)   
Thanks! I'll read up on it so i can tell her about it.

Her platelettes were low yesterday so they couldn't tap her lungs again until after she received more. Her numbers are still the same after the first round of Lactolose so they were going to administer the second enema last night. They drained 1.3 liters and then the CT Scan showed that she was pretty empty so they didn't dig anymore.

Once out of her hospital room lights, and into the hall lights, she was more jaundice then the night before so I'm curious to hear her lab results this morning as to what her bilirubin and liver counts are. I still have yet to hear a MELD score so I really have no idea where we are on the list.

Our motto is "Liver or Bust!" She is scared and tired. Her skin is in very bad shape. Very dried up and scaly...(not sure if that is a word :)) Also, hair is falling out more rapidly than before.

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 3/13/2009 6:36 AM (GMT -7)   

Hello Margaret,  I just wanted to welcome you to HealingWell.  I am so sorry that your mom is so ill with this disease.   But what a great motto!  I love it! 

Xifaxan, along with the Lactlose worked wonderfully for my husband.   Sometimes when Lactulose isn't doing the trick... it's an infection causing the encephalopathy and that's where Xifaxan takes over.   So between the 2 it kept my husband's encephalopathy at bay. smilewinkgrin   Do ask her doctor about it.

 Is she on any diuritics?    Dehydration is another worry to be concerned with.  Also ask about her sodium.  We restricted my husband's sodium so much that his kidneys started acting up.  We had to up his sodium intake a little.  Everything is such a balancing act with this disease. Keep being proactive in her healthcare.  Doctors don't catch everything.  Bring any concerns to their attention. 

Take care..........thoughts and prayers.......... 

 

 

 


Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 3/13/2009 11:53 AM (GMT -7)   
Mrs. Qqt, get a bottle of lotion and use it on your mom every time you visit.  You could also request that the med. assts. use it on her, too.  Just being in bed so long will irritate the skin.  She may need Vaseline on the scaly parts of her skin.  Believe me, doing this will make her much more comfortable.  (I speak from personal experience.)  Udder Cream is a good one, if you can find it.  If not, any rich lotion will help.

hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

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