Portal Gastropathy

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exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 4/18/2009 7:03 PM (GMT -7)   
Just wondering if anyone has had to deal with Portal Gastropathy?  This is our latest crisis.  Jerry needed two blood transufsion in 5 days.  He's better now but I'm terrified it will happen again.  In fact I'm sure it will. And just when I thought we had been through it all!!  And to top it all off his MELD is now a wopping 12!  Go figure.  Appreciate any input.
 
JoAnn

mrsquickgt
Regular Member


Date Joined Mar 2009
Total Posts : 27
   Posted 4/18/2009 7:25 PM (GMT -7)   
HI JoAnn

We are battling that as well with my mom and her MELD is a 13 so I feel your frustration. Our biggest complication right now is this autoimmune disease she has developed with her blood and needing to be on heprin. They have her on 2 blood thinners and monitering her VERY closely to make sure she doesn't bleed in her stomach but at the same time disolve her clots.

We learned today she has a rather large clot in her right leg so now we're not sure what is going to happen. They are even trying to hint around to us that if they can't control this clotting issue they are going to have to take her off the list.

Her last "dose" of blood was on Wednesday....6 bags.

Just stay strong for him. We keep our mom laughing...seems to help pass the time in ICU.

-Margaret

exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 4/18/2009 7:35 PM (GMT -7)   

Margaret

I feel bad even complaining after reading your post.  The MELD score issue has me so frustrated.  Jerry's liver is just putting out the numbers for his score to be high.  The only one is creatinine.  And now that has gone down.  We he was listed over a year ago his MELD was an 18.  Its been as low as a 10 then to 14 and now 12.  Its just crazy. I am hanging in there I just get really frustrated.  I hope your mom does better.  Thanks for the update.

JoAnn


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/18/2009 7:45 PM (GMT -7)   
{{{{{{JoAnn}}}}}  After all you guys have gone through and now this!!  My thoughts and prayers will be with you and Jerry.

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 4/19/2009 6:25 AM (GMT -7)   
Thanks JoAnn :)

It really is something they need to change but I think that is a general consensus amongst us with loved ones on the waiting list. This is our second attempt at being on the list in 18 years and she has been as low as 9 and as high as 16.

Have you asked about bonus points? I know you can petition UNOS to grant bonus points for different ailments. Try talking to the cordinator about it.

Don't ever feel bad for complaining. That's what this place is for. At least for me it is...to come here and type out my frustrations, emotions, questions, etc.

-M

exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 4/19/2009 9:52 AM (GMT -7)   
Yes Margaret I did ask for bonus points.  His cordinator said they could not!!  Crazy isn't it.  It just seems life threatening to me.  But what do I know.  He's doing good now but that bleeding can reaturn at anytime and I'm sure it can be worse next time.  Especially if his blood clotting facter gets worse.  His Gastro Dr. explained it to me this way.  The
INR will gradually get worse.  The Bili and Creat go up and down which is why his MELD score goes up and down.  I see his INR slowly increasing but the other two  can change radically!!  That is the frustrating part.  All the while he is wasting away to nothing in spite of the fact that he eats several small meals a day.  In fact he eats continuously.  Also drinks soy protein smoothies.  Its really hard to watch. Well I just slept 13 hrs.  I can't beleive it.  I feel like a new person.  I really think I could do that for a week.  Guess I need to be thankful I got it.  Hang in there Margaret.  I will pray for your Mom
 
JoAnn

5Joan5
Regular Member


Date Joined May 2008
Total Posts : 61
   Posted 4/19/2009 5:32 PM (GMT -7)   
JoAnn,

Good for you to get that sleep!!! I've been on spring break (I teach special ed and am going for my Master's degree) and I feel better than I have in months! We all need to take care of ourselves too, but it's hard to remember when all this stuff is going on.

Take care.

Joan
Best friend is in ESLD, has HepC and cirrhosis. 


mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 4/19/2009 7:21 PM (GMT -7)   
JoAnn,

I know how frustrated you are with the MELD score issue! My hubby's meld was creeping up and now it's back down to a 7!!!! It will make you crazy if you let it. While is liver "numbers" seem to be "okay" right now, we are battling some other issues that may or may not be related. In March he became neutropenic, got fever, infection, etc. 10 days in isolation, all that fun stuff. Since then has had a horrible headache and started having seizures. So, now in the mix of specialists, we are adding a neurologist!!

I am so sorry to hear your hubby is having complications, and pray that he does start to turn the corner and do better. I am glad you got some sleep....makes all the difference in the world.

You hang in there....

Mer

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 4/19/2009 8:18 PM (GMT -7)   

Mer, I am so sorry to hear that your husband is dealing with new issues.  The human body must be awfully tough to endure all that it does.

Please keep us posted.


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

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