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HopefulInNC
New Member


Date Joined Jun 2008
Total Posts : 11
   Posted 6/16/2008 5:58 PM (GMT -7)   
Hello All:
 
A friend directed me to this website, and I must admit that so far, I've found it very informative.
 
I'm a caregiver for my husband.  He contracted Hep C due to a transfusion when he was 16 years old.  It lay dormant in his body for about 15 years, only problem was; he developed a love for alcohol.  Well, about 5 years ago, the Hep C progressed and he now has cirrhosis.
 
I guess where I'm going with all of this, is to say that it's extremely hard to keep a smile on your face day after day, knowing that they can go at any minute.  Maybe there's someone here who's experienced this and can give some advice on how to cope when all you want to do is cry.  Most days I do pretty good and I gotta admit that I'm stronger than I thought I was...I've been doing this now for going on 3 years.  Of course I know that it hasn't been all me, I could'nt have carried on had it not been for God.  Still, there's times (like today), I feel at the end of my rope.
 
Anyway, for those that have read this far...thanks for listening.
 
Hope~

shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 6/16/2008 6:52 PM (GMT -7)   

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


When I started counting my blessings my whole world turned around.


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 6/16/2008 8:35 PM (GMT -7)   
Hello Hope and a big welcome to HealingWell. I am so sorry that you are going through this. I have been there done that and can testify it is not any fun. I forgot how to laugh and didn't even realise that I wasn't laughing anymore.

So the first thing that I am going to tell you is to take care of you. Even if it is just a few minutes a day. Take a little walk, or a bubble bath, what ever brings you joy. Even though you don't feel like laughing find something to laugh about everyday. Caregiving has got to be one of the hardest jobs out there.

And when ever you get a chance come back here. Vent or ask any questions. Our forum is full of very nice and knowledgeable people. We all know what you are going through so you are not alone in this anymore.

Take care......thoughts and prayers........
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.

Post Edited (Pink Grandma) : 6/16/2008 10:47:09 PM (GMT-6)


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/16/2008 8:50 PM (GMT -7)   

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


Caregiverx3<3
Regular Member


Date Joined Mar 2008
Total Posts : 197
   Posted 6/16/2008 11:42 PM (GMT -7)   
Hi Hope,
Welcome to THE forum.
I was on my way to bed, but had to chime in on your post, since you are a neighbor. We live in Myrtle Beach. I am caring for my husband.
The best thing I like about this forum is that there are both patients and caregivers here. You'll get a great education and a lot of support here at HealingWell. We're just all trying to help each other.

Blessings to you and your husband,
Carol
 


lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 450
   Posted 6/17/2008 3:54 AM (GMT -7)   
Always here to lend an ear. I don't post to often . But I read as many of the posts as I can. I have to try and see the issue from the other side. Hope you find this forum as interesting as I do. I feel as if I know so many people here. I'm not alone . I do have to see it through your eyes, since my husband is the caregiver and I am quite impossible at times. I don't always realize it . So I have asked him to point out several things to me to set me straight. Not always this way just at times. Very greatful for all the caregivers who have shown me the way. june

frustrated_n_wv
Regular Member


Date Joined Aug 2006
Total Posts : 469
   Posted 6/17/2008 5:02 AM (GMT -7)   
Hi Hopeful

Just wanted to add my Welcome to the forum. This is s a wonderful site to gather information and recieve the support you will need for this journey. For me this forum has allowed me to realize I am not alone or as isolated as I have thought. Everyone is right in the fact that you have to remember yourself during this time. Please keep us posted on how you and your family are doing.

Lucy

HopefulInNC
New Member


Date Joined Jun 2008
Total Posts : 11
   Posted 6/17/2008 7:23 PM (GMT -7)   

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!   yeah   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~

 

 


Caregiverx3<3
Regular Member


Date Joined Mar 2008
Total Posts : 197
   Posted 6/17/2008 7:33 PM (GMT -7)   
Hi Hope,
You are close. My husbands nephew lives on Oak Island. We get up there sometimes.
 
"Man Boobs". Yep, my husband has them too. He jokes about em sometimes.
He seems to be feeling better tonight. Thank God. No more Ativan for him.
I think we will all go on to bed tonight. It's catching up to me.
 
Carol
 


HopefulInNC
New Member


Date Joined Jun 2008
Total Posts : 11
   Posted 6/17/2008 7:44 PM (GMT -7)   
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~

shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 6/17/2008 7:47 PM (GMT -7)   
Carol, glad to hear hubby is off the ativan maybe something else will work for him. Sorry to see he had those nasty effects. Hope, I bought my hubby a maternity band for when he gains the water weight it really helps support the muscles he gets very large before he can get tapped. He didnt see the humor either when I said his belly looks like 9 months so why not. LOL :) he uses it LOL.
Sue
When I started counting my blessings my whole world turned around.


HopefulInNC
New Member


Date Joined Jun 2008
Total Posts : 11
   Posted 6/18/2008 12:19 PM (GMT -7)   
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.  sad
 
Hope~

shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 6/18/2008 3:08 PM (GMT -7)   

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.

Sue


When I started counting my blessings my whole world turned around.


HopefulInNC
New Member


Date Joined Jun 2008
Total Posts : 11
   Posted 6/18/2008 4:14 PM (GMT -7)   
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~

shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 6/18/2008 4:55 PM (GMT -7)   
Hope, Doug only had to have his tps cleaned out maybe once a year and that is just done by radiology in day surgery. Sometimes they kept him overnight because of platlets. His run really low to the point an insulin shot will bruise up like someone beat him. We discussed the live donor issue as some hospitals still do it. Out of 591 done the mortality rate for then donor is 1% which is actually high, it is still used for children under I think 16, cause they only need a small section and an adult needs you to donate 2/3 of your liver. I know i read that once in awhile they take a whole liver for a child who is high on the list and divide it to 1/3 for child 2/3 for an adult. Doug says he destroyed his liver himself and noone should risk their life for his mistakes, he wouldnt want to survive then. I think the hardest part of this is the crazies. He has gotten so depressed about losing days and events and me having to do so much more, he hasnt touched his computer or camera in so long, most days he cant figure out how to work the remote for the TV or answer a phone. My mummy just passed with advanced alzeihmers at 68 and sometimes he is as bad as she was. Yet he can tell you childhood stories all day long it is so strange. So we have learned to laugh alot at the episodes. One time he was in a coma yes a coma, now I live over an hour from the hospital so they tell me stay home get some rest while I can. So I do..... finally they call and his eyes are open..... thats about it, so I pack up his jammies and other stuff to bring up for when they move him from ICU to his room. Well wouldnt you know I get there and he is sitting up like nothing happened talking to a nurse. I say Hi and let him know his bags are already in his room looking at him with my mouth open, cause he looks fine. Well doesnt he say " did you bring my laptop?". You knowI should have thought of that why didnt I bring it I am thinking to myself..... oh wait I know cause he was in a "COMA" I should have known that someone in a "COMA" would need their laptop. Didnt I inform him he was nuts and the list of gifts is growing, he better get a transplant and 2 jobs to fill my list...... it just keeps growing like weeds in the garden...LOL:)

When I started counting my blessings my whole world turned around.


HopefulInNC
New Member


Date Joined Jun 2008
Total Posts : 11
   Posted 6/18/2008 7:18 PM (GMT -7)   

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~   


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 6/18/2008 8:59 PM (GMT -7)   

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


shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 6/19/2008 2:21 PM (GMT -7)   

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 cool


When I started counting my blessings my whole world turned around.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 6/19/2008 3:38 PM (GMT -7)   

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.   yeah

Hugs,

Connie


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 6/19/2008 9:22 PM (GMT -7)   

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


HopefulInNC
New Member


Date Joined Jun 2008
Total Posts : 11
   Posted 6/20/2008 4:14 AM (GMT -7)   
Hey Joann
 
It was the same basically for us.  Brian went into the hospital in Oct for a bleed, they wound up tapping him then, and he was in again 3 weeks later for another bleed.  Each time they tapped him, they pulled off...I think 9 & 16 liters.  He's pretty bad annemic, to the point of them having to give him blood pretty much everytime he goes to the hospital.  So when he had to go back in Nov 5, they did the TIPS procedure on him.  So far, it's worked like a charm.  Maybe you could get a second opinion for your hubby?
 
Thanks for the welcome, it's great to find a place where we all can relate to what's really going on.  cool
 
Hope~

shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 6/21/2008 12:53 AM (GMT -7)   

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


When I started counting my blessings my whole world turned around.


Caregiverx3<3
Regular Member


Date Joined Mar 2008
Total Posts : 197
   Posted 6/21/2008 8:07 AM (GMT -7)   
Hi Hope,
Will Brian be going to Duke Hospital for his transplant? We thought about going there, but decided to stick with MUSC.

Sue, "overnight bags!" Just picturing it, gives me a laugh. Terry was pretty groggy this morning. He was getting dressed and put both feet in the same pant leg of his sweats. BOOM! Down he went. He said "Dern short legs." IDK He didn't get hurt, but it's hard not to laugh.

Carol
 


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 6/21/2008 9:45 PM (GMT -7)   
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

shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 6/22/2008 9:14 AM (GMT -7)   
JoAnn, you are correct about TPS causing higher ammonia levels. They blocked his TPS for that reason. I would be happy to see levels of 83, Doug shoots up to 200-300 even since they closed off the shunt. Instead of high levels daily it is now 2-3 times a week, when it gets really high he either sleeps nonstop, then I have to tell him time to go to the bathroom as he wont do it or ends out in hospital totally non responsive. He actually has the DRs scratching their heads at his dramatic ups and downs. He can recite the alphabet and 1hr later not know his name. Thankfully we have only had one episode of a coma. Our DRs told me not to worry about ammonia level numbers as I always ask, just base my care on how he feels...... everyone has a different tolerance of ammonia. Sodium is so hard to control, when I worked running a kitchen in a drug & alcohol treatment center I learned how many ways they hide sodium in labels it is amazing, same with processed sugars. Vendors are like video games THEY CHEAT..... oh man here we go on groceries again LOL :)
Sue
When I started counting my blessings my whole world turned around.

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