Hello

Hi I have only been on this site for a short time and it has helped me alot. I have been the caregiver for 8yrs the toughest has been the last year. You will find alot of support and help here, great advice and a shoulder. Hang in there!

Sue

Welcome to the forum, Hopeful!  You will definitely find a lot of support here.  I believe there are more caregivers here than patients (though I happen to be a patient.)  You certainly will have a lot of empathetic ears here.  PinkGrandma is so right--you have to take care of you.  It's not selfish...it's necessary.  You cannot be any good to anyone else if you don't take care of yourself. 

I look forward to seeing more of your posts here.

Hugs,

Connie

Awww...thank you all for the Welcome, it helps more than you all probably know (then again, maybe not) I'm doing better today, I think it helps knowing that I'm not alone in all of this, that there's more that's...as Pink said...been there and done that.  As I said last night, I'm not new to this, I've been doing it for about 3 years now.  Just some days are alot harder than others, just like the one's we love. 

He's doing better today, not as lethargic as he was yesterday.  I think I caught a glimpse of the 'old him' earlier and it was refreshing.  Kinda gave me hope that maybe one day I'll see more of the 'real him'.  And you know what I did?  I smiled.  I miss him ya'll.  He worries so much over the little things that really don't matter...like him growing 'man boobs'.  So silly he is, but the Dr said it's due to the disease and the meds that he's on.  Besides..if his keeps on growing, I'll just lend him one of my bras!     Too bad he didn't think that idea was the least bit funny! We have to find the humor in all of this, even if there's nothing the least bit funny about the disease.

Anyway, just wanted to add my 2 cents in for today and to thank you all for the warm welcome.  Carol, you definitely are a neighbor, I'm in Wilmington.  Hope each and every one of you have a great evening and you and your loved ones had a blessed day.

Hope~

Hey Carol:

Yep, know exactly where Oak Island is.  We're closer to Wrightsville Beach.  Moved up here from GA last year...it was the best move we've ever made.  The Dr's here are more willing to help him, especially since he's stopped drinking. 

Glad your hubby is feeling better tonight, and I hope tomorrow is a good day too.

Hope~

Hey Sue

Luckily, he doesn't have to worry about his belly anymore.  After being tapped for so long, they did TIPS on him last November and it's worked like a charm.  No more regurgitating 'Mountain Dew' anymore.  Never heard of a maturnity band, wonder if it would work on his boobs?  LOL  Personally, I don't think he looks all that bad, but it certainly effects him.  Poor guy, wished I could make him well again. 

Hope~

Oh wow Sue, I'm so sorry to hear that news.  I know about the live donor, they don't do it here either.  Closest place to us is Walter Reed.  I was going to try to give him half of mine, and to tell you the truth, I was alittle let down when I found out they didn't do it here.  My hubby's MELD is 23 (at least it was about 3 weeks ago).  He gains weight, but not all that quickly.  I think he looks good now, especially where he was back in Oct.  He got down to about 140 lbs, and looked like one of those poor Etheopian children...skin and bones but a protruding tummy.  He almost died then, I'm just so glad he's doing better now.  Oh, he has problems with confusion sometimes, but the Lactulose helps there.  So far, his TIPS is working pretty good, he hasn't vomited in quite awhile now, but they told us that it could get blocked up too.  I wish you and hubby the best too Sue, hopefully, something will break soon so that he can get the transplant that he needs.  If you ever need to talk, I'm here.  :smiles:

Hope~

LMBO!  Too funny Sue!  You know, most people wouldn't think things like this is funny, but it is.  I guess when you have someone like this close to you that has the disease, you learn quickly to grab all the comedy that you can...least it's that way for me.  Well, Brian did it too himself to a point too.  They told him to quit drinking, but he wouldn't.  Even when he was puking up blood and scared to death, he went back to drinking soon after he got out of the hospital.  We're not talking just beer, oh no..he went for the gusto and was drinking vodka like it was water.  Well, last Oct, the varaceal bleed was so bad they had to band him 6 times and then his ammonia level shot up over night to 171.  He was close to going into a coma.  Well, his O2 level dropped bad enough they put him on a mask only for him to vomit in it.  He asperated, they stuck him on a ventilator and gave him a 5% chance of making it through the night.  Many prayers and the good Lord is the only reason he's still here.  He remembers things from when he was that close to death, seeing his grandparents and all, and basically knowing just how close he came of dying and he turned over a new leaf.

So far, he's been sober for almost 9 months which is a miracle in and of itself.  They have him on Prozac which has helped with his depression alot, but he still gets confused.  I have to work and we don't have anyone around that I could really depend on when he gets bad, but we cope.  One time, he couldn't remember how to put on his shoes or open the door to get out of the apartment.  Scared the willies out of me!  Most days, he's alright...at least he tries to act like he is, but I know different.  He's a fighter though, so I think that might help in seeing him through all of this.

He's not on the list yet, but he's seeing a Hepatologist about 2 hours away.  They started him in Therapy here in our town, and he's almost 4 months into the 6 month program.  Then, they'll put him on the list.  I just hope he can hang on until the transplant.

It's been great talking to you, I look forward to doing it more.  Thanks for listening, and I hope you have a better day tomorrow.

Hope~   

JoAnn, my hubby had TPS done in 2000 after he had been tapped 2x both times was 9 and 11 liters but maybe it depends on where the most damage is done to his liver. I know the shunt is in the liver near the portal vein. I know the position has to be precise I was told if it is to close to the vein you cant get a transplant, I think if I recall. It did keep him from being tapped to much, sometimes he would slosh just like a waterbed. I do know you really need to do alot of research and honest straight questions to the DR if you should consider live donor. The liver is the only forgiving organ and a healthy section will grow a new healthy liver. There are risks to the donor you need to be aware of, the son if he is healthy will take longer to recover than your husband. I wish you all the best

SUE

Sue  I sure wish Vanderbilt would have done a tips on Jerry.  He was getting drained weekly last year.  It was horrible.  His whole body turned in to a charlie horse.  He would scream it hurt so bad.  Some nights we would be up all night because as soon as he layed still for awhile his body would start curling up.  It was a nightmare.  Then they started giving him albumin before they tapped him and that really help.  Another problem he has had is dehydration.  Vanderbilt put him on such high diaretics that his kidney just about shut down.  This was the problem this last trip.  The longest he has gone without going to the hospital is between the end of Feb to 6/1.  Now he has been in twice since the first of June.  Crazy isn't it.  He has had some problems with amonia.  Monday when we went in he kept picking his nose while we were in the ER waiting room.  Hey what can I say.  It wasn't near as bad as the time he wore my bathrobe.  Or the time I called the ambulance then had to call the police and he still didn't go. All the crab we have to go through is crazy.  That is why I can identify with your coment that your hubby will need to get two jobs to fill your list.  ONe time when we were in the ER.  I'm on a first name basis with everyone there.  One of the ER Dr. told me "Your husband is going to owe you big time when this is all over".  I told everyone that story and I got a new car!!  Its wonderful but I wish I would give up everything to have him back.  I do love driving it though!  I need to get to bed.  Thanks for listening.

JoAnn

JoAnn, why cant he have the TPS done did they tell you? My hubby spent his whole morning wondering why his ride to work wasnt here yet! He hasnt been able to work in years! I forget where he thought he lived! I told him his ride called and was having car trouble as he was getting a little anxious waiting. Its like when my mummy was alive I just went with the flo of conversation. I did have a hard time convincing that the shoes he was wearing werent good for WORK, overnight bags are difficult to walk in. I finally told him they would rub to much and he would wish he wore his GOOD sneakers hey it worked LOL

SUE

The reason Vandy didn't want to do a TIPS right away because of the amonia problem  I think that is it.  They thought his fluid problem could be comtrolled by diet.  But that poor guy has been through so much.  We tried everything under the sun to keep the salt to a minimum but nothing worked until recently.  Jerry has only really had ammonia problems twice.  The time he wore my bathrobe to the ER.  His amonia was 83 and this last time when he was picking his nose.  His amonia was 73.  So you see it really hasn't been bad.  The way I understand it when you get the TIPS its really hard to control the amonia.  Sounds like that is the case with your hubby.  Maybe someone else can put some light on that subject.  I would like to hear from someone else about this.  Maybe John he knows everything. 

JoAnn