Portal Gastropathy

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

{{{{{{JoAnn}}}}}  After all you guys have gone through and now this!!  My thoughts and prayers will be with you and Jerry.

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

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