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Post by Deceived Wife on Feb 16, 2014 22:56:08 GMT
I learned about my husband's condition of ESLD from ICU staff following a major GI Bleed. I had NO Idea what was happening to him, it was the most frightening time of my life. He ultimately ended up on Life Support in a Hepatic Coma ( at this point even the ER / ICU staff were unaware of the diagnosis). I was called at 7am to inform me he had had a heart attack, was on life support and get to the hospital ASAP. They questioned me as to his primary and any other doc's he sees..... I provided a few names, they reached out and got the records. They had a social worker & doctor sit down with me and tell me what was going on and as it turns out he was very well aware of his condition. Thankfully, he woke up after 5 days and survived. I had to learn really fast about ESLD and the education provided by the medical community was poor. I did most of my learning online.
Following that, I also learned I had been removed from a sizable life insurance policy. What a slap in the face and shock that was!! The date of removing me was in line with the diagnosis of Varicies. He did change it and put me back on and remove those 3rd parties. Not long after, those 3rd parties began telling husband horrible lies that I was rarely at the hospital, it seemed I wanted him to die etc..... he believed them!!! I couldn't believe it. I had found him and called 911 and never left his side.... he didn't know it b/c he was in a coma!! Even after he woke he was out of it for 2 days..... the little Asian people were chasing him and he was frustrated that I couldn't see them.
Over the past few months, he has gone on to remove me from most every asset which will leave me pretty much broke upon his death. Unfortunately, I'm in a position where I now need to file for divorce to preserve the marital assets from being bequeathed to 3rd parties.
ESLD sucks!!!
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Post by Onomatopoeia on Feb 17, 2014 0:02:12 GMT
I've been handling being a caregiver for my husband for four years now. Until recently I was doing it alone then I began looking for help. After a few bumps in the road such as non-productive forums elsewhere and just being far from a city for resources, I found this forum with the help of caring and helpful person who is quickly becoming a friend and led me here.
I hope we all find friendship here, information we can use in our lives, a helpful listening ear if we need to vent, as well as the tough truth that we find as caregivers some people aren't able to handle quite yet.
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moon head
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Post by moon head on Feb 19, 2014 22:30:16 GMT
My name is Pam and my husband is Ron. Ron was diagnosed with Hep C in 1992; he was accepted in several Hep C trials, and was a non-responder. Many years we lived happily with Hep C in the background. In 2009 a mass was found in his liver and he was accepted by the Mason Transplant clinic at Piedmont Hospital in Atlanta, GA. He had a MELD score of 8 and once the mass was diagnosed as cancerous his MELD score jumped to 22. He was listed on the transplant list in August 2010 and he received a liver transplant February 3, 2011 (MELD 28); 9 days later he was back in surgery for a bile leak. In November 2012 he had a heart attack and triple bypass heart surgery, he went into a deep depression and became suicidal. He had become addicted to pain medication along the way. He was hospitalized for treatment and this year is the first year we have lived without health (mental or physical) issues.
Although this story fits neatly in the above paragraph, I have to say, it was (and sometimes is) the hardest thing I've ever gone through in my entire life. To love someone with a terminal disease, and see them disappearing before your eyes, mentally and physically, I thought I would lose my mind. Ron is stable now, but I'm always waiting for the other shoe to drop. He has a new liver but with ever blood test we wait to hear if his liver is 'happy'.
I say all this to say........if I can be of help to anyone through this....I am more than happy to do so.
I'm glad to see a forum for caregivers; there were many times I wanted to post on the Hep forum and worried about hurting the feelings of those living with with terrible disease - not that we all don't live with it - but you know what I mean.
Pam
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Post by Deceived Wife on Feb 20, 2014 11:13:55 GMT
Welcome Pam. Thank you for joining our community.
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Post by Onomatopoeia on Feb 22, 2014 6:12:53 GMT
Hi Lena and Pam. I'm glad you're here. Thank you for all your input.
It helped to hear rcmoonpie's story. You made it!!! That's hopeful for me. It seems all parties involved if the liver failure is from hep c or alcohol or drug use should be involved in coping skills. The transplant must just be part of the road along the way to life and living well. Not the destination.
Again, thanks for sharing. I sure hope newbies to being a caregiver find our stories helpful and are able to prepare before the madness sets in.
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Post by needhelp on Feb 24, 2014 20:04:41 GMT
My brother has had Hep C since he was 13. He was in a auto accident and lost his spleen. It took 5 units of blood during the operation and one must have been full of Hep C. He was sick a few weeks later, but no one knew why. Then 10 years ago during a life insurance exam they found out he had it. No fault of his own and now its all I can do to keep him from hurting himself. He has HE and is harmless,but I'm scared he will get in the car and drive, or set himself on fire using the stove. I make sure he drinks his lactulose and takes zifxin daily. Does anyone have any ideas on how to manage a loved one in this condition? His meld is 16. We are trying to get him on a transplant list, but live in the country and it isn't easy to get to a good hospital.We have a small farm, but now that he's so sick, I have to try and do both of our jobs and take care of him. I won't let him down, he has always taken care of me until last year. I'm afraid of losing him.
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Post by Deceived Wife on Feb 24, 2014 23:45:49 GMT
Hi Needhelp & Welcome.....so glad you found us. We are a small group of caregivers all struggling with loved ones with liver disease. I hope you have read other introductions to see a glimpse of what some of us are going through. Your job is hard and we get that. I'm fairly new to all of this. I'm just 8 month's into my role as caregiver, though my husband knew of his status and hid it for years.
Is your brother compliant with his medications?
The HE is the most horrible part I think. At least for me.
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Post by Deceived Wife on Feb 25, 2014 2:31:11 GMT
Thanks for sharing your blog, Pam. I'm off to bed soon, but I will read it tomorrow morning.... my usual morning ritual is surfing the net while I have a few cups of coffee, often before anyone else is awake. It's my quiet, peaceful time.
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Post by maybee on Feb 27, 2014 2:18:36 GMT
My twin brother has end stage liver disease due to alcoholism. I'm his caregiver. He has no family and my children are grown and have families of their own. I go home when I can and ready to move my brother home with me. My husband helps when he can but travel for work makes it difficult for him to do much. We have a lot of doctor appointments and ascites is a problem. I just need answers and someone to talk to. Thank you.
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moon head
New Member
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Post by moon head on Feb 27, 2014 19:08:22 GMT
Maybee - please check your messages on the board. I sent you contact information.
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Post by maybee on Feb 28, 2014 0:00:25 GMT
rcmoonpie, how long did it take your husband to get his strength back?Is his mind back to normal?
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moon head
New Member
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Posts: 19
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Post by moon head on Feb 28, 2014 0:52:45 GMT
My husband went back to work (half days - sales) 8 weeks after surgery - but they suggest 3-6 months. He received his liver in February and in July we were at the beach with the grandchildren. The HE disappeared after the surgery; we battled with hallucinations until they got his anti-rejection meds adjusted - but he's very sensitive to medication - others do fine and don't experience the medication side effects.
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Post by maybee on Feb 28, 2014 3:07:06 GMT
How often must he take the anti rejection meds?
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moon head
New Member
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Posts: 19
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Post by moon head on Feb 28, 2014 22:57:01 GMT
Ron takes his anti-rejection medication twice at day @ 10:00 a.m. and 10:00 p.m.
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Post by maybee on Mar 3, 2014 16:53:19 GMT
Thanks.
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