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!
Post Edited (Pink Grandma) : 6/16/2008 10:47:09 PM (GMT-6)
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.
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, my hubby has had a tps also for 7yrs now. They had to plug the thing up in april as it started flowing to fast so nothing was filtering and he spent 37 days in hospital not knowing his name most of them. I guess it is rare they have to do this but there was no options. They tried experimental stuff and it was a no go. There has been alot of improvement in mental status from then but he still goes in and out but now were back to the 3-5lbs a day weight gain. The petition to move him up the list failed as our region is scarce in livers and they dont do live donors. He calls himself the ever expanding boy. His MELD is 20-23 and they usually dont transplant till 30-40 even on the B list. We just hope and hang in there. Wishing you the best also.
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.
Hi Sue and Hopeful-First of all I want to welcom you to this forum. It has been the best medicine for be and I think you will find that true for you also. My husband has always drank a lot. We have traveled the world and seen everything but now he's too sick to go to work. He complained to his Primary Care Dr. for a year about a hernia that was really bothering him. The Dr. told him to just live with it as long as he could because its major surgery. He has been seeing this Dr. for 25 yrs. His stomach just kept getting bigger and bigger. Well, that spilled milk. That was 13 mths ago. For the first 8 months he was in the hospital as much as he was out. I leaned to sleep in a chair. We were building a second home in SC to retire. I ended up doing that from the hospital. He was so sick. They tapped 24liters from his stomach in one week. That is when his Gastro sent him in an ambulance to Vanderbilt to do a TIPS. Vandy wouldn't do it. Another long story. After man months and lots of stress he is on the list at Vandy. He actually managed to stay out of the hospital for 3 months from Feb to May 08. He was in a week the first of June home a week and back in. WE just got home today. It has been a total nightmare. He has now lost 80 lbs he has has some crazy times with ammonia but his big problem all along has been fluid and dehydration. That bring me to my question. I keep thinking Vandy should have done a TIPS but they didn't. Why did your husbands have a TIPS. It sounds to me that it could have made this last year so much more livable. We only been to our wonderful retirement home twice. Our children are having fun but he is usually too sick to go. I would love to hear more about the Tips. Also Vanderbilt does do a live transplant. My husbands youngest son want to presue it and also there are a few of his employees that are interested. Thought you might be interested in that. Also My husbands MELD is now a 17. He's only been on the transplant list about 3 mths. Again Welcome and hope you can laught at some of us crazies. Please excuse typos and spelling. Most of my life is sleep deprived these days.
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
I'm continuing to wear an abdominal binder to push the fluid in...otherwise, it looks like I still have a hernia or am pregnant (and that would be quite a trick at 65!) Perhaps y'all could ask the hospital to provide one of these when your hubbies next are admitted. That's where I got mine. I wore one out and requested another one after this last hernia repair. It also helps to prevent the hernia from returning.
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, 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