When TIPS doesn't work...

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.

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

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. 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

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.

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.