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Butterflythree
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Date Joined Oct 2007
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   Posted 10/7/2007 8:37 PM (GMT -7)   
In November I will be 42 years old.  My husband and I have been together since I was 15.  We have been through alot together.  I wan't prepared for my husband's cirrhosis.  I have known for a long time that I would have to face it someday, after all the years of begging and pleding for him to stop drinking and telling him that it was killing him.  He wouldn't stop even afer being diagosed with hep C.  I wasn't aware of all the things a person goes through with cirrhosis until doing research on my own.  I have to say that I am very afraid.  I don't know how to do this on my own.  My husband has always been my strength, and I feel like he is leaving me here alone.  I am angry, I am scared, and I am very ashamed for the feelings I am having.  When ever something tragic happens the human mind always trys to go back in time and fix things, (if only I had done this, or if only I had done that).  I know there is nothing I could do to prevent this, but I still can't stop going back there.  I blame family members that would say "Oh, come on, one won't kill you", when they knew he wouldn't stop at just one.  The truth was, who was going to buy if he wasn't drinking?  Where are they now when he is too sick to be the life of the party?  They sit in denial and try to pretend that he is fine.  While I am here watching him slowly slip away from me.  I know it may be several years before cirrhosis takes his life or he gets a trasplant.  But I also know that I am losing him to this disease more and more every day.  He is my friend, my love, my life, and I don't want to do this but I have no choice.  What I wouldn't give to be able to look into his eyes and see "him" again.  I noticed changes in his personality a couple years ago and didn't know what was going on.  Now I do.
Forgive me for feeling so sorry for myself,  but I felt the need to vent.
 

hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 10/7/2007 9:03 PM (GMT -7)   
{{{{{{{{{{{Butterflythree}}}}}}}}}}} Sending you a big hug. Has your husband stopped drinking? If so, has he gotten treatment for his hep C? There's not a lot that can be done for cirrhosis, but cutting out the alcohol would be number 1. Also, if he is still drinking, he would not be a candidate for a transplant until he goes to AA and has 6 months of complete sobriety. I have both hep C and mild cirrhosis, and am recovering from the right side of my liver being excised, due to cancer caused by the hep C.

Is your hubby seeing a hepatologist? If so, he would be able to give answers to the questions you might have. I can only say, "Don't give up!" Seek out information regarding your hubby's specific case. Each person is different.

There's an old saying, "Don't should on yourself." So please don't let the thoughts of what you should have done or could have done plague you. In the end, it's up to him. There's really nothing you could have done except what you did.

Hugs,
Connie

Pink Grandma
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Date Joined Nov 2006
Total Posts : 2445
   Posted 10/8/2007 7:32 PM (GMT -7)   
Butterfly3, Connie is absolutely right. Stop blaming yourself and don't give up. All the would of and could of's won't change anything now. I have done the same thing to myself since my husband passed away so I know how hard it is to stop doing it. It's not healthy for our minds or bodies. Just keep getting educated about the diseases and try to lead your husband down the right path. It is really up to him on whether he wants to live longer or have a better quality of life.
You do not have to apologize for venting. That's part of what this forum is about. We are here to lend support to each other when times get tough or we get weak. Most of us has been there just where you are at now and have had others lending support to us. Hang in there Butterfly. My thoughts and prayers will be with you.
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going!


Butterflythree
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Date Joined Oct 2007
Total Posts : 954
   Posted 10/10/2007 7:23 PM (GMT -7)   

Connie & Pink Grandma,

Thank you for all your help.  I would have gotten back with you sooner, but I had computer problems.  My husband stopped drinking about a year ago.  He is seeing a hepatologist and has been on the antiferon/ribovarin treatment a couple times.  He was in remission for about 6 months several years ago and started drinking again.  The virus returned.  He was put on the treatment again but there was a big insurance mess up which caused him to skip several weeks of treatment and when he started back up he had severe side effects, which caused him to lose his job and insurance.  We are presently waiting for the Union at his plant to get his job back. 

His hepatologist has not mentioned anything about having CT scans everything 3 to 6 months.  They do blood test every few months but never say much.  Should we ask them about the CT scans?

Again, thank you so much for being here.  It is so much help to me.


Pink Grandma
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Date Joined Nov 2006
Total Posts : 2445
   Posted 10/10/2007 8:16 PM (GMT -7)   
Yes if it were me I would talk to his doctor about the abdomin CT scan. Tell the doctor that you want to make sure that your husband has not developed liver cancer. If your husband hasn't, then they won't have to order it so often. How long ago was he diagnosed with the hep C and the cirrohsis? And how long has he been under the hepatologist's care? Does your husband know everything that may happen to him before he either gets a transplant or dies. My husband didn't want to talk about it. He hated for me to ask his doctors questions. I did anyways even if it meant an argument later. But here and googling is where I got the real education about liver disease. His doctors were not very forth coming with information. And working with the insurance companies are a nightmare itself. Take care.
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going!


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 10/10/2007 8:29 PM (GMT -7)   
Pink Grandma,
My husband was diagnosed with hep C in 1994 and with Cirrhosis July 2006. He had a CT scan in Oct 2006. No cancer was spotted. He has been seeing a hepatologist at SLU in St Louis MO since 1994. He was involved in a study they were doing on interferon/ribovarin right after he was diagnosed. My husband is not aware of everything that may happen to him. I explain some of the symptoms he is having and he gets angry with me for talking about it. I am afraid to tell him all the other things I have learned about the disease since I started researching it. He tells people he has mild cirrhosis, and I think he believes it himself. When I talk to him about the complications like portal hypertension, he never remembers that he has it and wants to know what it is. Do you think I should talk to him more about possible complications? I've been afraid that telling him might make him worse (if that makes any sense to you). Even when I try to talk to his family they act like they don't want to hear it, and they want to pretend he is fine.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 10/10/2007 8:57 PM (GMT -7)   
Hi, Butterfly!  Well, it's great that your hubby has a year of sobriety.  That's the best thing he could do for himself and his cirrhosis/hep C.  It sounds as though he is in deep denial, so I wouldn't push things too much.  I had tried 2 different rounds of interferon treatment in '93, and both times I had to be taken off due to very low white counts.  My current hepatologist says that they now are able to prevent that from happening, so I will try treatment again, once I get my medical problems taken care of.
 
I think you should request that your husband have an abdominal CT scan every six months, to find out how his liver is doing.  As for labs, he can request a copy of those, or at least go over them with the doctor.  Make sure they are doing a liver profile and an alfafetoprotein, which is a tumor marker.
 
Hugs,
Connie

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 10/10/2007 9:09 PM (GMT -7)   
Connie, I hope your medical problems get taken care of real soon. I know the interferon/ribovarin treatment can be helpful. My husband was on it for a couple of months the last time and his viral load dropped tremendously. The treatment can be very harsh though. It made him very sick and irrational at times. But he does plan on trying it again.

I do have a copy of his labs emailed to me every time he gets them. His alfafetoprotein always comes back high. He is involved in a study because of this (link between alfafetoprotein and liver cancer). He doesn't have to do anything. He just gave them permission to see his labs.

I want you to know I think you are a very strong person, and of great help to me. You are always in my thoughts and prayers.

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 10/10/2007 9:34 PM (GMT -7)   
Butterfly, if it has been a year since his last CT scan then his doctor should not have a problem with ordering another one. I know just how your feel about talking to your husband. I was afraid of how mine would react ....like maybe giving up and throwing in the towel. And his family in effect said well he wouldn't listen so it's his fault. I can not stand the blame game. It doesn't matter anymore how he got it. And yes it is up to the patient to do everything the the doctor orders. But when you have an addiction and you're are a certain type of individual... quiting that addiction is not as easy as some seem to think it is. I know if I was diagnosed with any liver disease I would be soooo scared. The first thing that I would probably do would be to light up a cigarette. Even knowing that it would be bad for me to smoke. It is my part time addiction. When my stress level goes sky high it's always been my old faithful. I am sure it is that way for most people who have any addiction. People need support not blame when they are facing a life threatning illness. You know your husband better than anyone. So it is up to you to decide how much is too much to tell him. Maybe a little bit at a time will work. That's what I kind of did with my husband. He'd call me Doctor Dianne and ask "What medical school did you graduate from?". I would reply the University of the Internet. He actually knew that I was telling him the trueth, but it was very hard for him to accept. Good luck with what ever you decide.
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going!


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 10/10/2007 9:50 PM (GMT -7)   
Pink Grandma, Thanks for the advice. I agree with you and addiction. I am a smoker and I was thinking about my husband's illness the other day, wishing he would have listened, then a thought, I have no right to judge. My kids have been asking me to stop smoking for years now and I still do it knowing it is bad for my health. I use it as a crutch, as others do with alcohol, food, and drugs.

I think that as complications from his disease arise I will try to explain them to him so that he will understand what is going on. That is why I am here. So I can know what to expect and understand what is going on. To be better prepared to help him.

Also, I keep forgetting to ask. Does cirrhosis cause vision problems? I don't remember reading it on any of the sites I have been on.

Thanks again for your help.

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 10/10/2007 10:03 PM (GMT -7)   
Your welcome Butterfly. I do know that my husband did start having problems with his vision. I believe it was part of the illness but I have never been told that it was. So I maybe wrong. There's so much that can start going wrong when the liver gets damaged it's not funny. It's like a dominion affect it seems. Have a good night.
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going!


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 10/12/2007 4:26 PM (GMT -7)   
Pink Grandma, Thanks so much for answering my question. He has been complaining about cloudy vision for a while now.

On a good note he has really seemed like himself the past couple of days. It has been really good seeing him that way. I have been making sure he takes the Lactulose regularly.

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 10/12/2007 7:50 PM (GMT -7)   
Yes that is the key. Them taking the lactalose regularly. It does make a world of difference huh? My husband was watching a TV that had a red tinge to it with little white lines in it and didn't realise it. Once I saw the screen I asked him about it and he said that he didn't notice them. I knew then that he was alot sicker than I had realized. He used to be a stickler about a clear picture on the T.V. I ended buying a new TV for him, not because him wanted it but because I wanted him to have a clear picture even it he couldn't tell the difference.
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going!


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 10/15/2007 5:12 PM (GMT -7)   
Pink Grandma, Your husband was very lucky to have you. I know that no one will ever be able to take his place, but I am so glad that you have children and grandchildren to fill your life. I know my kids (I have 3 - 1 son 21, 2 daughters 19 & 13) and one grandson 4 months, are what makes life worth while. Although sometimes the 13 year old can sometimes make me second guess that LOL! Shes at that age. Hopefully she will be out of that by the time she reaches 18.

mom's "will" to live
Regular Member


Date Joined Oct 2007
Total Posts : 111
   Posted 10/15/2007 8:03 PM (GMT -7)   
BUTTERFLTHREE, I left you a message on my thead! Before, I read yours! I want to say. For 2 weeks I have not told Will about what the Dr. said for fear of his reaction! Last night I had to tell him, he has a live in girlfriend that came over with him last night, she was sick with flu, virus or something and I told her in the politest way I know how, that Will cannot get sick at all! Of course she blew me off! Thank goodness she had to go to work. So I told him what the Dr. said to me! Will knew he was bad sick but, he had no clue it was this bad! I'm really worried because he is not showing emotion! At least you know your husband hears you if he gets angry. Have you gone threw this? I don't think I'm ready for this ride! God, please!!! gives us all everyone a miracle!!!
Toni

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 10/15/2007 10:11 PM (GMT -7)   
Butterfly, thanks for the nice words! It seems that many people (mostly men) are in denial, or don't want to know what the diagnosis means. Personally, I like to be an active participant in treatment of my diseases. I believe that knowledge is power.

I had only been in a second marriage for about 3 1/2 years when I was diagnosed with hep C. I did not have the energy to work full time any longer, so went to a P/T position with the same organization. Hubby resented my P/T status, as it meant I couldn't contribute as much to the household financially. When I tried to explain to him what hep C was like, he would chide me by calling me Nurse Connie. We divorced after nearly 5 years of marriage. His attitude and lack of support was a part of it, but there were other reasons, as well.

I've never heard of hep C or cirrhosis causing vision problems, but anything is possible.

Connie

Butterflythree
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Date Joined Oct 2007
Total Posts : 954
   Posted 10/16/2007 8:45 PM (GMT -7)   
Connie, Sounds like you are better off without him if he couldn't be supportive.

I read some of the earlier post lastnight. I think you mentioned a gentleman friend Bill??. Is he still in the picture? Do you have family members or friends close by? I dump a lot of my worries on my two oldest kids. After it comes out of my mouth I think I should have kept it to myself, because I don't want them to worry too.

You mentioned in another post that you were a medical transcriber. I wondered how you kept up on the spelling of all the medical terms. I know I have seen some of the terms numerous times and still when it comes time to use them I can't remember the spelling.

Take Care

1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 10/27/2007 3:31 PM (GMT -7)   
Butterflythree,
I am new to this site and for that matter I am new to relying on anyone at all. I am an RN and my heart aches for you and for everyone with a loved one who is so gravely ill. For 25 years I have been a caregiver, advocate, and all the things nurses are supposed to be. Now I too am suffering watching my mother with end stage liver cancer. She never drank at all but as a result of hepatitis many years ago she developed chirrosis which led to her liver cancer.
It is so very difficult to see the ravages of disease on our loved ones. Your feelings of anger, bitterness, lonliness, etc. are all very normal. We as human beings want to place blame on someone or something for the sorrow we are facing. This too is normal and certainly part of this package we call life. I have cried so much over my mothers condition and rapid deterioration I sometimes think there can't be anymore tears and yet I continue to cry. In some respects it's a stress reliever to cry and often just what I need to do.
My father is 85 and is the primary caregiver for my mom. She has lost all quality of life with no dignity left. That I suppose is what is the hardest of all. She is in a constant state of confusion which appears to be getting worse on a daily basis. She is neither a candidate for surgery nor transplant. As a family we have had to come to terms with that as hard as it may be.
Getting through each day with the difficulties that may arise is my goal. One day at a time!
I want to tell you that I have read several posts you have responded to and I for one believe in you. You are a strong and intelligent woman. You have a loving and kind heart. You will survive this onslaught of depression and woe. Believe me when I tell you that. It is painful and disheartening but you will survive it. Look in the mirror when you are all alone, tell yourself out loud that you are a good person and a smart woman and tell yourself you will survive this. It may sound trite but it does work.
Express your grief, sadness, and fears to those that understand. It is a cathartic. It's OK!
Take time for you too. Get your hair done, get your nails done, see a movie. Just know that you are important too.
 

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 10/27/2007 6:43 PM (GMT -7)   
Shelly, Thank you so much for your kind words. I can't find the words to say, but I really appreciate your words. Hearing your story breaks my heart. I know that it must be really hard watching your mother slip away from you. My mother died 14 years ago, and I still miss her so much. I still catch myself thinking of a question I need to ask her the next time I see her. I wish know one ever had to watch a loved one go through this terrible disease. Watching them slip away more and more each day tears a person apart. I have also been trying to take it one day at a time. Although I catch my mind making plans for the inevitable. I know I have to stop thinking that way. I am trying to enjoy the good days and not think about what may lie ahead. I do take time to cry when I am alone and feel the need.

Thank you for your advice. I will try to take it. You and your family will be in my prayers.
Butterflythree


1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 10/27/2007 8:23 PM (GMT -7)   

Butterflythree,

You are right, no one should have to see the ravages of disease but the fact is we are destined to lose our loved ones to something or other. What the other is I don't know. That is the one part of life I can actually say I hate. My heart breaks for all of us and I wish I had a magic cure of some kind. I have dedicated my life to attempting to heal the sick and now I find that I can't make my mom better. Worse yet I am a daughter first and a nurse second so I am not too objective right now. The truth is I feel sad that I can't "fix" my mom. The one thing I want to hang on to is my mother's philosophy on life. She is the perfect story book mother. She baked homemade bread twice a week, she attended all of our sports games, taught us how to cook and clean, but most of all she taught us how to love. She has always viewed life as one big adventure. Good-bad-and inbetween it is still all an adventure. That concept has helped me on many occasions when I didn't know how to feel or act. When I told myself that the event or occurance was an adventure I was able to muddle through it without too much anxiety. When I read some of the posts I started to cry. I realized very quickly that many people are suffering and I am certainly not the only one. Thanks for your kind words and prayers.


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 10/27/2007 9:08 PM (GMT -7)   
Shelly, I think more people should live by your mother's philosophy of life. It certainly sounds like it could help us all get through the tough times. She sounds like a wonderful person that has raised a wonderful daughter.

I realized the same thing after reading the posts here. This forum has caused me to open my eyes in a lot of ways.

Take care
Butterflythree


butterflyfour
New Member


Date Joined Oct 2007
Total Posts : 12
   Posted 10/28/2007 6:35 PM (GMT -7)   
Butterflythree(mom), You know you can talk to me about this anytime. Even if you think I won't understand, that's what daughter-mother relationships are for. Love and support.







--Butterflyfour

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 10/28/2007 9:27 PM (GMT -7)   
Butterflyfour, I know that is what daughter-mother relationships are for, but sometimes mother's need time to share certain things with daughters. Mother's are here to protect their children. Not vice-versa. I love you.
Butterflythree
 
There is always hope!


butterflyfour
New Member


Date Joined Oct 2007
Total Posts : 12
   Posted 10/28/2007 10:32 PM (GMT -7)   
Butterflythree, Yes, Mothers are here to protect their children, but yes, daughters are also here to make their mothers feel loved. and I feel as if I haven't been doing that well of a job lately.
I love you, too.
tongue
ButterflyFour.<3*


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 10/29/2007 2:01 AM (GMT -7)   
Butterflythree, I'm just now catching up on this thread. To answer your question, Bill is/was a b.f. for the past 13 years. However, all the surgeries I've had in the past 5 years have changed the relationship. I still speak on the phone with him almost every night, but don't see him much at all anymore--and it's always when I suggest going out to eat or something. There's been no physical relationship for about 2 years. However, he is the one person I know whom I can depend on. Aside from him, I have no family here. My daughter and granddaughter moved to a different county and none of us drives. I have an aunt in a different city within the state, but she's 80. I do call her quite often and she has helped me out financially. I only have one friend here whom I still talk to and see, but she has her own problems and is 78 years old. So you can see how much this forum means to me, to be able to connect with others battling some of the same demons.

Hugs,
Connie
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