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Judith
Regular Member


Date Joined Apr 2008
Total Posts : 131
   Posted 4/30/2008 3:15 PM (GMT -7)   
 
My husband is curently waiting to get on the liver transplant list, his MELD score is 17 and he is very ill, he has lost 35lbs. in the last six week's and sleep's a lot.  The hospital is requiring him to go to A.A. meeting's because he used alcohol in the past, this is very tireing for him but he is doing it, I don't understand that he has to get sicker before they consider him for the surgery, does anyone know the average waiting time for a transplant??
 
Judith

exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 4/30/2008 7:31 PM (GMT -7)   

Hello Judith and welcome.  My husband has a  MELD now of 16.  His was 18 then 13 now 16.  Its a very complicated disease as you will see.  Read some of the old posts and you will learn a lot.  Everyone here is very helpful.  I don't think you can put a time on it.  When my husband was first diagnosed I thought for sure he was going to die the next week.  That was almost a year ago.  He has not touch alcohol since but they are making him go to AA also and counseling.  I get more out of the counseling then he does.  It really helps me to vent.  Especially after all the hassle just getting him listed.  My husband really has trouble with the AA meetings also.  He has a lot of trouble with vomiting and has had to leave the meeting because of it.  Just hang in there and learn as much as you can.  That has really helped me. 

JoAnn


Judith
Regular Member


Date Joined Apr 2008
Total Posts : 131
   Posted 5/1/2008 7:57 AM (GMT -7)   
Thank you Joann, this is a horrible disease and it really take's it's toll.  My husband isn't vomiting anymore but has diarrhea daily which make's it difficult also.  He dosen't talk to me about all of this and I wonder what's going on with him emotionally, we have been married for 44 year's and sometime's I don't think I know him anymore.  He is suppose to eat five small meal's a day and do some light exercise which he has no interest in, he rarely leave's the house anymore and I feel guily if I'm gone very long.
I have read quite a few of the other post's and it does help, thank you.
 
Judith
 

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 5/2/2008 12:13 AM (GMT -7)   
Hello Judith and welcome to HealingWell,

Sorry that your husband has this disease.
And I know how frustrating it is to keep waiting and jumping through hoops while your husband is getting sicker. As far as going to AA they just want to make sure that he will not drink again if he should have a liver transplant. They'd consider it wasted if the patient were to drink again.

I was only married to my husband for 8 years and it took it's toll on me. I think it must be a guy thing the part about not wanting to talk about it. Mine didn't either.

And about not knowing him anymore. I understand that... but if he should get a liver transplant he will go back to the same old person almost. Right now it's not him..........it's the disease that is making him act the way he is.
Even knowing that, it was hard to deal with my husband some times. No ....a lot of the times. I did a lot of walking in our yard to calm down or I would have brained him a few times.

Do nice little things for yourself. He can't pamper you right now, but you can. Read a book. Sit in the sun. Anything thing that brings joy to you just for a few minutes when ever you can grab them. It will surprise you how just a few minutes of some kind of peace will keep you going.

Have a good day and 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.


Judith
Regular Member


Date Joined Apr 2008
Total Posts : 131
   Posted 5/2/2008 9:18 AM (GMT -7)   
Thank you for your word's of encouragment, I am so glad I found this forum as it really help's to know that other's are going through the same thing, sometime's I think I just want to go somewhere and just scream!  We retired four year's ago and bought a travel trailer and had so many plan's and then he got sick after one year on the road and it's been one thing after another, he show's no interest in anything anymore and sometime's I feel so resentful and then guilty for feeling that way.  Anyway, thank you again for sharing with me.
 
Judith

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 5/2/2008 10:33 PM (GMT -7)   
Hello Judith,

Wow I can totally relate to you. My husband and I had a lot of plans for our retirement. But it was not to be. One thing that I have learned over the years is how to change gears. Change is not always fun..... but I have been trying to look at it as an adventure. Thanks to one of my very good friends. (You know who you are my friend.)

And as far as screaming ...........come here and scream all you want. I can guarantee that we can not hear you. But we can all understand why you feel the need to scream sometimes. We all feel that need sometimes.

And the resentment and guilt feelings are too..........quite normal huh everyone? You will go the the wringer of feelings with this disease. But always know that we are here to listen, to cry with you or even laugh with you. You are not alone 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.


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 5/3/2008 3:55 PM (GMT -7)   
Judith, I just wanted to welcome you to the forum and say I know how you feel. My husband has cirrhosis and has personality changes. I miss him so much. When I am feeling really sad I think "This is not how it was supposed to be". I am really hopeful that someday it will be.

Just no that there are many people here that understand and care about you you are going through.
Butterflythree
 
There is always hope!


Judith
Regular Member


Date Joined Apr 2008
Total Posts : 131
   Posted 5/4/2008 7:45 AM (GMT -7)   
Thank you Butterfly, it is comforting to know other's are going through this with me.  I miss my husband so much even though he is here with me everyday, he has no interest in doing anything or going anywhere.  He seem's to have lost interest in everything he use to enjoy.  Mostly, I feel like I'm just a caregiver and not a wife anymore, it is so sad.

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 5/4/2008 8:05 AM (GMT -7)   
Judith, My husband has also lost interest in everything. He used to be a very outgoing, social person. Now he sleeps and watchs tv. Once in a great while he will go for a ride. But that is very rare these days. You are right, it is very sad. I try not to let him know that my heart is breaking.
Butterflythree
 
There is always hope!


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 5/4/2008 2:58 PM (GMT -7)   
Judith, welcome to the forum!  There seem to be many more caregivers here than patients.  As a liver disease patient, I'd like to shed some light on a couple of things:
 
First of all, the wait time for a transplant depends a lot on where your transplant will be done.  Mayo Clinic (Rochester, Minn., Phoenix, AZ, and Jacksonville FL) have the shortest wait times in the nation...a matter of weeks after all the preliminary testing has been done.  If they require a certain length of sobriety prior to receiving a transplant, that could dely things.
 
As a chronic active hep C sufferer, cirrhosis patient, and liver cancer survivor, I can tell you with certainty that your husband's seeming indifference to doing anything is directly related to the enormous fatigue he feels.  Anyone with liver disease has that fatigue.  It's nothing that sleep can remedy.  I once heard someone say that it is "like walking through molasses."  That's the best and most accurate description I've ever come across.  Therefore, it's a real chore just to shower, get dressed, and make medical appointments and do things you HAVE to do.  That takes so much energy, there is none left over for the things we used to enjoy doing.  Then, the inability to do those things, or to plan on activities, causes depression.  Kind of a vicious cycle.  And, of course, there are the other symptoms from the disease and perhaps side effects from medications or "procedures."  I was on Paxil for quite awhile, but finally took myself off about 9 mos. ago.  I didn't see that it was doing any good, and I had also gained weight while on it.  Oh, and that's another thing--the bloat or ascites.  Another reason not to want to go anywhere--looking so blown up and nothing fits right.  I know that was a big concern to me, until I got on Lasix and Aldactone and lost the water weight.
 
I hadn't been anywhere at all for 3 years, beyond grocery shopping and doctors' appts.  However, on April 14th I flew to NYC and stayed there 5 days.  I felt alive there for the first time in years.  I think I was just going on the adrenaline of excitement.  Now that I'm home, I'm back to dragging around.  It's now 5:30 PM and I'm still in my nightie, with a sink full of dirty dishes, garbage that needs to go out, ironing that needs to be done, and here I sit...feeling like I really want to go back to bed and sleep.  I have to will myself to stay up and do what must be done, as I live alone.
 
I don't expect this info to make you feel any better, but perhaps you can understand a little more where your husband is "coming from." 
 
Hugs,
Connie

Judith
Regular Member


Date Joined Apr 2008
Total Posts : 131
   Posted 5/4/2008 3:31 PM (GMT -7)   
Wow, thank's for the insight Connie! You have pretty much described most of his symptom's, he is waiting to get on the transplant list at the California Pacific hospital in San Francisco, his doc is pretty confident he will eventually get on the list after completing A.A. meeting's for six month's. I will look into the Mayo clinic in Phoenix as the doctor tell's us that they share information, he has had most of his pre-testing done.
 
What is your prognosis? I hope everything turn's out great for you and thank's for the patient's view,
 
Judith

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 5/4/2008 7:29 PM (GMT -7)   
Hello All,

Judith, that's the hospital that my husband made the list on. I live in the central valley where abouts do you live. If you want hear some of our experiences with CPMC my email is in my profile.

Connie I am sorry that you are dragging today. But if it makes you feel any better....I had to hire 2 of my nephews to help me to clean my house and do so long over due yard work. I've been dragging for over a month. But I'm thinking that I am finally at the top of the hill. So going down it will be a lot easier.

Butterfly, As always you and yours continue to be in prayers.

Thoughts and prayers to all..........
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.


1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 5/5/2008 6:37 AM (GMT -7)   
Hi Judith and welcome to Healingwell. As you can see this forum is filled with many wonderful caring people. It really seems as tho the caregivers on this forum are totally exhausted as well as depressed. (understandibly so)!!!!!!!!!! Everything you have described is really a common standard of issues with us all so don't feel isolated or alone in this. I just wanted you to know that you are doing a wonderful job and I know that your hubby appreciates it very much. He may not be able to tell you what a great job you are doing or he may not thank you verbally but I know he would if he could. The illness is consuming him both physically and mentally. The person he WAS is still inside the person he IS today. The WAS part of him just can't find his way thru the fog of this disease. Keep posting and know that we care and NEVER EVER GIVE UP HOPE!!!!!!!!!!

 Shelly
 

“Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."

 


Judith
Regular Member


Date Joined Apr 2008
Total Posts : 131
   Posted 5/5/2008 9:48 AM (GMT -7)   
Thank you Shelly, I really appreciate all the kindness from this forum and it is nice to know there are other's out there going through this with me.  The one thing I am truly greatful for is that my husband is not in any pain, he was first diagnosed with fatty liver disease in 2006 and it has gotten worse since then, because he used alcohol in the past they are requiring him to do the A.A. thing which he dread's because he is a retired police sargeant.  I think what bother's him the most is the almost daily diarrhea, he say's he feel's like a prisoner to the toilet, the doctor's have precribed different med's to try to help but so far nothing has.
 
Everyone think's I am doing so well, if they only knew!  Thank's for being there,
 
Judith

Judith
Regular Member


Date Joined Apr 2008
Total Posts : 131
   Posted 5/5/2008 10:31 AM (GMT -7)   
Thank you Dan's brother, I didn't know Noah was an alcoholic???  Please tell me more!  Yes, there are quite a few professional people in my husband's group but he dosen't consider himself an alcoholic and after reading some of his A.A. book I guess I don't consider him one either, he has totally quit drinking and I don't think he ever will again after all of this.  Anyway, I'm just happy that he is getting out and being with other people as he dosen't do much of that anymore.  Thank you so much for your imput,
 
Judith

1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 5/5/2008 11:24 AM (GMT -7)   
Judith, my father is a retired Detroit Policeman so I fully understand what your husband is thinking in relation to AA. I would suspect that he fears running into someone that he has had issues with in the past. That is a possibilty but unlikely to cause any problem for him. In any event your husband may not want to go to AA but if he wants to be on the transplant list and he has any kind of history related to drinking alcohol then he is required to go. I appreciate the fact that the transplant team has to decide who is willing to participate and at the same time be reasonably assured that the candidate is not going to ever drink again. You know the old cliche' "Actions speak louder than words". There are alot of benefits to AA so he may want to go for the added benefits as well as the encouragement to not drink ever again. Is he currently reading the posts on the forum? I hope so as it will help him alot.

Dansbrother, I have a minor in religion and have never been aware that Noah was an alcoholic. What scriptures did you reference to come to this conclusion? I am very curious.
 Shelly
 

“Life is not the way it's supposed to be. It's the way it is. The way you cope with it is what makes the difference."

 


Caregiverx3<3
Regular Member


Date Joined Mar 2008
Total Posts : 197
   Posted 5/5/2008 12:05 PM (GMT -7)   
Hi Judith,
Welcome and nice to meet you.
I haven't been very active on the forum, but like you, I am very glad that I found it. I am caregiver for my husband and I could say what we are going through, but would just be repeating everyone's posts. I am thankful that there are people here that can give us more insight as to what our loved ones are going through. My husband doesn't talk much about is dealings either, physically or emotionally.
His team wanted to get him listed for a transplant, but my husband was noncompliant also. He developed HCC and by the time I talked him into going to AA, his tumor had grown too large to be a candidate. We only made it to the initial meeting and then got the new diagnosis, so he chose to not continue with AA.
I am not saying that your husband will develop HCC, but I sure hope he continues with AA.They wouldn't even have listed my husband until he went to AA for 6 months. Just keep encouraging him to go. It would have been very hard on my husband to go also, but he was willing to try.

Take care of yourself, too! Stop and smell the flowers.

Carol
 


Judith
Regular Member


Date Joined Apr 2008
Total Posts : 131
   Posted 5/5/2008 1:53 PM (GMT -7)   

Hi back Carol,

What is HCC??? I am learning something new everyday it seem's. This forum is so helpful!  How is your husband doing?  Mine is asleep as usual.  He is attending the A.A. meeting's thank goodness although I have to push a little sometime's.  Thank you for sharing,

 

Judith

 

 


Caregiverx3<3
Regular Member


Date Joined Mar 2008
Total Posts : 197
   Posted 5/5/2008 2:44 PM (GMT -7)   
HCC is hepatocellular carcinoma (liver cancer). Try this one-HH (hereditary hemochromatosis). He has that also. It causes a build up of iron in the liver and can damage other organs also. Some people have their blood drained to lower their iron levels. He also has HCV and Cirrhosis and gastric varices.
Terry sleeps a lot also, but is awake now. I guess he got hungry. Do you remember the commercial where a man was sitting at his computer and it told him that he had reach the end of the internet?!! Well, Terry has reached the end of television. He has seen everything. Sometimes he does read a little, but that is getting harder and more frustrating for him.
We were uneducated about HCV and Terry's job involved travel and staying in other states for long periods of time.It was hard to coordinate all the appts and then to convince him to quit his job. The Dr's kept telling him to quit, but we didn't know how we would survive without his income. We didn't know that he could receive SSD and Terry, being the kind of man he is, wasn't about to quit his job. So, he was never treated for his HCV, even though he did stay home for awhile to receive treatment. His GI Dr wanted him to be off alcohol for 1 year before he would treat him. So,it was back on the road for him. There is a lot to learn and it is mind boggoling for me. My short term memory is not that great and I have to reread everything over and over again. I got my computer last year while I was caring for my Dad, to learn about stroke and dementia and caregiving. Education on HCV was thrown in here and there. Sounds terrible, I know, but my Dad kept me busy 24-7. I felt that Terry was a grown man and capable of learning on his own, but he wouldn't even read what info I managed to print out for him. After Dad passed on, I got more involved with Terry's treatment process.
Judith, learn all you can and be his advocate, but remember to see the signs when you are getting too overwhelmed with info and "take a break."

Carol
 


Judith
Regular Member


Date Joined Apr 2008
Total Posts : 131
   Posted 5/5/2008 2:59 PM (GMT -7)   
Geez Carol I am so sorry to hear about your husband!  They are watching my husband's blood test's as they say his liver disease can escalate to liver cancer also and kidney failure but then they say that would bump him up on the list (unbelievable).  My husband used to love to read but he get's frusterated now because he can't seem to focus, I ask very little of him but there are some thing's around here I just can't handle so he does try to help.
 
I don't think we can get S/S disabilitly help but it would be nice, hopefully his Medicare will pick up all these expenses?  Thank's for sharing with me.
 
Judith

exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 5/5/2008 8:36 PM (GMT -7)   
Judith I know exactly what you mean about frustration and short memory loss. I have no memory at all any more. Sometimes I will be having a conversation with someone and can't remember a simple work. Its crazy. I also snap a lot at my husband and feel so bad. I just can't help it. It helps to know that someone else is doing the same thing.


Carol You mentioned that Mayo Clinic has the shortest waiting time to get a liver. How can that be when I thought everyone is on the same list. I also had the impression that organs are received by areas. So why can Mayo get more organs then other hospitals. If anyone can explain this to me I would be grateful.

Thank you JoAnn

Cape Caz
New Member


Date Joined Apr 2008
Total Posts : 15
   Posted 5/5/2008 9:04 PM (GMT -7)   

nono  Hi all.   I think the donor list is based on the area in which the person had died and recepriant needed. *((xcept for certain BLOOD types.  I believe  if a gun shot victim  who dies in Boston. and his liver type is needed in Los Angles, it will stay in Boston unless it is a very rare situation . I don't really know, I am going on what I have been told.   This whole transplant thing has me so worried but it has also made me ask all my friends and family be a part of it.

 

What I really wanted to say after reading all of your scripts is. "TAKE CARE OF THE CARE GIVER.  WITHOUT THEM THE PATIENT WILL NOT GET THE CARE THEY NEED. GIVE MOM. DAD. SIS, BRO, FRIEND ETC. a break.  Our loved ones who are sick can be so demanding but lets take care of ourselves first......So we can be there for them.


God have mercy on us all.


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 5/5/2008 10:07 PM (GMT -7)   
Hello Cape Caz,
There's different donor regions. ( Not sure regions is the right word to use, but I can't think of the correct one right now.) But yes you are right. The donated organ has to be transplanted with in a certain amount of hours to be a viable organ to transplant. Transferring across country uses up too much precious time.
So I am pretty sure that they don't send them cross country.

Good night and 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.


Caregiverx3<3
Regular Member


Date Joined Mar 2008
Total Posts : 197
   Posted 5/5/2008 10:37 PM (GMT -7)   
Hi JoAnn,
How are you doing? I never did get back with you about the "popcicles". I think you might have me and Judith and Connie mixed up. I don't know anything about the Mayo Clinic. I get mixed up too. I have been rereading old posts tonight and trying to catch up and also learn more. I'm the one with the short term memory problem. Probably an age thing. I try to be very patient with Terry, but sometimes he just purposefully pushes my buttons. When I realize what he is doing, I calm down. Maybe it's his way of helping me relieve some stress.He can get me laughing when I need it. Then he will snap at me for moving his inkpin or the remote or something else.I just find the thing and put it back.
How is Jerry doing?

Carol
 


Judith
Regular Member


Date Joined Apr 2008
Total Posts : 131
   Posted 5/6/2008 10:09 AM (GMT -7)   
Thank you all for sharing, this forum is a life saver tongue .
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