end stage liver failure

If your coordinator says that your state is blessed with donors maybe your meld score won't have to go too high to receive a liver. Meld scores tend to fluctuate a bit though. Now you are at 16 next appointment you may go up or even back down. In California there seems to be a longer wait then some other states. The lack of energy and the problem of sleeping are 2 of the most common problems. Here's to hoping you have a short wait. Hang in there and take care.

Butterflythree,

   Welcome to the forum, Since I have been coming here I have gotten alot of answers, Since Pink Grandma has already been though what we are as being sick or as caregivers, I always wait to her advice and help remind me to also take care of our selfs and to fight for answers. Kinda like she is our teacher and we are students, and we take what we can and go from there. Connie is great also, and has some great answers and great questions, makes you stop and think.

   Now about your husband sounds like my mom, she can't remember how to work the stove, the tv remote. Gets kinda fustrating when you have gone in and fixed the tv for the 10th time in one day. We are never able to leave her alone. It is so hard to see her like this. Not only for me but from my brother who also has hep c. My mom believes she has another room in the house, that my dead father and brother has been here. We have started giving her her meds to make sure she takes them right, makeing her her dinner plates. Speaking of Pink Grandma, I gave my mom a dose of the lactalose this afternoon, along with her other meds and she seems a little more right this evening. Dont kmow if it can realy work that fast, maybe it is just me hoping LOL. My moms meld score is a 10, but during seeing the transplant team they have found something wrong with my moms heart and lungs. So now we go in for more testing. I wish I had a laptop so while we are down for her testing this next week I could be in contact with everybody here.

    Pink Grandma, so what kinda cookies did you make? I made ultimate fudge browies with peanut butter chips in them. If nobody mind me asking where is everybody from? I am from Minnesota. Everybody stay well tonight and take it one day at a time.

 

Peace,

jamie

Jamie

Thanks for your advice. I have been reading the posts and noticed that Pink Grandma seems very knowledgable.

My husband's meld score is also 10. His doctor's said that he wouldn't be worked up to be put on the liver transplant list until his score reached 15.

He hasn't completely forgotten to use the remote. Sometimes he looks he will put the tv on guide and just look at the remote forever. I no that it is hard to see your mother this way. It times I feel like I am watching my husband walk away from me. This is not what I imagined our lives to be like in our 40's. But I am trying to hang in there and be strong. Everyone tells me that I am a strong person, but I have never felt that way. They don't see me when I am alone. I guess I am good at putting on a happy face in front of others.

Coming here has already made me feel alot better. I'm glad you guys are here.

Hello Jamie and Butterfly, I just want to thank you. You both have me crying. You are the reason that I stayed here at healingwell after my husband died. It was to help others as I was helped when I first came. By no means am I an expert on hep C or cirrohsis. I just know what I and my husband went through. From diagnosis to the evaluation, to being denied, to being listed, unlisted and finally death.
If our experiences can help someone else go through this process a little easier than I am happy. If I can help someone else go through the hoops of the quest for a liver transplant then I feel my husband did not die invain. So even if I am helping you ....you in return are helping me. So thank you for that. But the real hero here is Connie. She is going through it herself and still is giving to others. She has my deepest respect and she has me in ahh of her. I love her silly.

By the way Jamie, I didn't get to make those cookies yet. My son called and invited me to go to a pumpkin patch with my granddaughters. Boy did we have fun. Maybe I will get Peanut Butter cookies made this week.

Lactalose can work fast sometimes. It think it all depends on what is going on with the patient at the time. Because sometimes it took forever to work. But those times were probably when my husband had an infection going on. Both you are strong. And even if you don't feel you are. You both found this site. It proves that you were looking for answers and to me that is a sign of strength.
By the way I am in California. Take care.......thoughts and prayers are with you both.

Awwww, Pink Grandma!  And Jamie and Butterfly!  As PG said, it helps me to be able to help others a little.  Maybe that's why I have had to go through so much--in order to be helpful to others going through the same things.

The Lactulose does seem to work wonders in returning minds to a normal state.  Fortunately, I've never had to take it.  When I read some of the posts about this, it almost seems as though the patient is suffering from Alzheimer's.  There is still no test for that, as far as I know--just a process of elimination.

I have to get to sleep reasonably early tonight, as I have my cleaning gal coming tomorrow.  She will take me to the grocery store, and while I'm shopping she will be cleaning.  The following day, someone else will run me around on errands (I don't drive.)  I am paying for these services out of my own pocket, and it gets to be quite expensive.

I haven't felt very well lately and am afraid the cancer may have returned in another part of my body.  I will know for sure after next week.  I have 2 back-to-back days of scans, tests, and doctor visits next Thurs. and Fri., and 2 doctor visits and hip x-rays the week following that.  Color me exhausted!

Hoping everyone is having a good evening!  Oh, and I'm in FL, though I still think of myself as a New Yorker, as I lived in NYC (Manhattan) from ages 10 to 33.

Hugs,

Connie

Post Edited (hep93) : 10/10/2007 10:30:05 PM (GMT-6)

Connie,

I hope you are feeling better soon. I will say a prayer for you tonight that all your scans and tests come back ok.

Thanks again for everything

Well if we have to start a new one guess we will LOL. Good afternoon,

  I do understand the back to back doc appointments, thats the way they set up my moms since we live almost 4 hours from the transplant center. We just got back last night around 9 and was dead tired and still am today, matter of fact I just woke up from a long nap. You are right when you say it seems like when their toxin levels go up it is like they have Alzheimer's. And act like little children when they don't get what they want. Like my mom keeps a litter box in her room casue one of our cats adopted her and stay with her all the time. I went in the get her laundry and there was no litter in the box, I asked her where it was, she said she used it, don't quite know yet what she did with it since it was a scoople litter. Or her coming out and telling me the cats knocked over her tv. She has a 32 inch tv. So you tell me lol. Oh she does not lile to be told no.

   Anywho like I said we just got back from 2 days of testing. Her MELD score went from a 10 to a 13 in little under a month. But if things keep going the way they are she wont be able to have a liver tansplant She has sever lung problems, they docs could not believe that she was not on more inhalers then she is. She has to go back useing her C pap machine and 100% stop smoking, loose some weight and get out of her room more. That one we have been working on. But if she looses up to 5% more of her lung serfuce she wont be able to have the transplant. So it loose like we could be going for lungs instead of a liver. We have to go back in a couple of weeks to have her nuro testing and EEG or EKG  done. She is at this point on the transplant list, just very low on it.

    We have a wonderful social worker there, she worked with my moms worker here and our room for the 2 nights only cost us 45 out of pocket and we both got a pre-paid food card for the restruant in the hospital. And the amounts we could spend where realy good per meal.

    Connie I am dido with pink grandma, if we where closer I would drive u also. Good luck on your testing. Hugs and prayers always.

    Well since I feel like I just wrote a short story for readers digest, I should close. Oh one more thing, in the gift shop at the hospial they have a t-shirt I want to get, it says ( The ulatament Recyling Organ donation. Please for give my spelling errors.

As always,

Jamie