Mom AIH update

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mrsquickgt
Regular Member


Date Joined Mar 2009
Total Posts : 27
   Posted 4/20/2009 7:40 PM (GMT -7)   
I know I've dribbled bits and pieces in others threads about my mom but I thought I'd post up.
 
Today is day 20 our of 23 that she has been in the hospital.  Since day 1 she has been drained every 3rd day anywhere from 2-4 liters. The last time they drained her it was 4 liters and they messed up and punctured her. Had to go in and drain 2 liters of blood/fluid mix. shakehead
 
That's when they discovered 2 blood clots in her lungs. This is AFTER a 7 day regimen of Lovenox/Cumiden (sorry for the spelling errors). They had her on 2 blood thinners to help with the clotting she was experiencing at the TIPS site and they learned she had Antiphospholipid Anticoagulant Disease....another autoimmune disease that is secondary to the AIH. This was nerve racking because of the portal gastopothy so they were also giving her the medicine that lines/coats the stomach. Memory fails me at the moment as so much has been added so quickly.
 
They put her on Heprin 650 and then checked her lower region for clots. They then learned of the rather large clot (DVT) in her right leg and immediately took the cuffs off her legs. Increased the Heprin to 700 and said on Saturday they were going to all get together (the hematology group, hepatologist (there are 3 of them), and the transplant surgeon) to discuss what the best option for her would be this week. The surgeon was/is VERY concerned about her clotting problem in regards to transplant. However, she is only a 13 for MELD. nono
 
Her INR has been as high as 3.8 and as low as 1.3. It was 3.8 last wednesday when she needed to be drained again so they gave her 6 bags of plasma to thicken her back up.
 
So today comes and at 7:45am they come to get her and do what is called an IVC Filter. It looks like an umbrella without the covering....just MUCH smaller. Made out of stainless steel they insert it into the vein in the leg. This will hopefully filer her blood and prevent that clot from moving up. We had no idea they were doing the procedure. We were all under the impression they were going to discuss that today. I also learned that the transplant surgeon is writing a letter of recomendation to UNOS for my mom.
 
I'm not sure if that is a good thing or not. Would he not do that if she weren't in a serious condition of not making it?  It's so hard telling when they all look at you and say that they have no idea why and they are trying to fix it. She was rather worn out today and mentally tired of the every day sit and wait. She is in surgical ICU sharing a room with 4 others. Thus far she has seen 2 men die and a 3rd put on ventilator. We have asked her multiple times if she wants a private room and shes keeps insisting that she does not. She enjoys the constant movement and attention from the nurses.
 
So, that is where we're at. A 13, a 3rd autoimmune disease, oh and I forgot to mention she is now having to take insulin. Her Blood sugar stays above 200. She has been on a catheter (spelling again) since last wednesday.
 
It's messed up. She doesn't hurt, she is in a good mood most of the time, and she looks OK. But to go back and read everything...she really isn't all that well.
 
I best get some sleep. My 1 and 2 year olds wake up early and the 7 year old shows up at 7am for school.
 
nite gang....thanks for listening.
 
M

exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 4/22/2009 7:55 PM (GMT -7)   

M

OMG  I can not immagine what you are going through.  Your mother must be a fighter!!!  I can only tell you I think the surgeon is writing a letter to UNOS to get more points added to her MELD.  I think they call it exceptions.  There is such a thing.  I will pray for your mom and your family. 

 

JoAnn


mrsquickgt
Regular Member


Date Joined Mar 2009
Total Posts : 27
   Posted 4/25/2009 1:17 PM (GMT -7)   
We had a milestone yesterday as Mom was able to go home! However, they expect her back next Tuesday for a draining and overnight observation. We'll take however many days at "home" we can get at this point.

They WOULD NOT discharge her until my sister showed up with the Lovenox injections in hand from the pharmacy. Her blood clots are pretty serious.

She has come to the realization that she lives at the hospital and they let her take a break when she is "stable" but with this clotting problem they have to drain her every 3 days or so before it gets too bad.

Thanks for the continuous support. Our next step will be to hear what UNOS has to say regarding the transplant surgeons letter.

M

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/25/2009 4:08 PM (GMT -7)   
M, I hope you all have a quiet weekend with no ER runs!

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

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