cirrhosis denied

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bluebird60
New Member


Date Joined Apr 2008
Total Posts : 3
   Posted 4/17/2008 10:03 AM (GMT -7)   
Hi, I am a new member today and I have read the forums here for awhile. I have a husband of 30 years and 54 years old who has hepatitis c and has evolved into cirrhosis which is end stage. he is very sick and the doctors told us a year ago when he had sepsis that he acquired endocarditis with  mitral valve regirgitation. they told us maybe a year maybe more. he elected to not have a transplant. but even so he is not a canditate, he would not survive. he dinies that he is this sick and talks of doing things he just can't do anymore. he still drinks, and he smokes also, he still gets in his car and still drives and he is very fragile and weak. lost hair on his entire body and his color is more muddy than yellow. has ascites and 18 bands on varices. has bad nosebleeds every so often and a lot of mucos in his lungs. encephalopathy tends to get bad sometimes and he has developed sores on his arms and abdomen, don;t know what from, its something new to me. I am his care giver and I try to work 2 days a week if he is doing ok. but this is very hard on me I am 61 now and i have so many emotional days. I know he is dying on me and no way to prevent it. but he can be so selfish most of the time that i feel lost and hurt. I guess i just needed to come somewhere where people have the same problems to vent a little. thank you for listening. punkin

getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40601
   Posted 4/17/2008 10:12 AM (GMT -7)   

Hi Bluebird,

I lost a friend to hep C and my sister to chirrosis.  I know how hard this is for you.  Later I lost my first husband to lung cancer.  It is so hard watching them waste away to nothing.  But have faith that when the time comes, they are going to a better place.

I know that I am not help to you right now, there is so much that I don't understand.  But I wanted to welcome you to Healing Well and the hepatitis forum.  You are among some wonderful people here who have lived with these things and I am sure that they can be some better help to you than I can.

You and your husband are in my thoughts and prayers.

Luv and hugs, Karen


  Moderator-Depression
 
fibromyalgia, Chronic fatigue, depression,allergies


1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 4/17/2008 1:28 PM (GMT -7)   
Bluebird, Hi and welcome to HealingWell. I am sorry that your husband is so ill and that you are suffering right along with him. It is so difficult as a caregiver to be everything to everyone except yourself. I worry about him drinking and driving though. It is certainly his choice to continue driving but I fear for others on the road when he decides to get into the car and take off. So many of us have lost a loved one to Liver disease we can appreciate how you feel right now. Is there other family members that would stay with him for a few hours a couple times a week? I think that if the opportunity arises and you can get a little help you may be able to do something for yourself. Caregivers seldom take time out for themselves and then get completely burned out. Consequently you can't help your husband or yourself then. Even if it's just to take a walk or get your nails done or whatever it will help some. We are here for you so feel free to vent, ask questions, or add your comments to others' posts. It really helps to get on the forum. Keep us posted.

 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."

 


JohnCT
Regular Member


Date Joined Mar 2008
Total Posts : 202
   Posted 4/18/2008 12:49 AM (GMT -7)   
Hi bluebird60,
I am so sorry for what you are going through. As an 'ESLD from HepC' patient, I dread what my friends and family will have to bear when my mind-fog becomes selfish and mean. Your husband is fortunate to have you caring for him. I trust that you fully realize how much of the negative you see is the disease and not necessarily your husband.
Please, please, please, take time to care for yourself. I lost my ex-father-in-law to HepC ESLD and it was brutal watching my ex-mother-in-law's spirit dwindle from the strain. Find ways to renew yourself, whether it's a massage or going to a museum (for me it's impressionist paintings) or whatever. But don't skimp on keeping your spirit strong. You'll need the strength now and later.
As a person living alone with the disease, I envy your husband for having you there to support him. I can only imagine the burden you carry and the loss you face. My thoughts and prayers are with you in this most difficult of times.
As you know, this community is caring and knowledgeable so don't hesitate to vent.
Be well, John
If I weren't having so much fun with you guys,
I'd love to be out sailing on Long Island Sound
Woodmont on the Sound, Connecticut


exhaused
Regular Member


Date Joined Nov 2007
Total Posts : 445
   Posted 4/18/2008 10:00 PM (GMT -7)   

John  I just wanted to say I always feel better when I read your writings.  Your compassion comes through so well in your words.  I am watching the love of my life and my best friend waste away from this horrible disease.  So as you know there are some really bad days.  I just wanted to say Thank you for giving this forum and all the people on it your wisdom.

 

JoAnn


JohnCT
Regular Member


Date Joined Mar 2008
Total Posts : 202
   Posted 4/18/2008 10:33 PM (GMT -7)   
Hi Joann,
Thanks for your note. I wish that there were words that could ease your pain but words can only do so much.
I wish you and your husband the best that is possible.
Be strong, be well, John
If I weren't having so much fun with you guys,
I'd love to be out sailing on Long Island Sound
Woodmont on the Sound, Connecticut

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