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I'm trying to rationalize

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Posted 7/6/2013 2:58 PM (GMT 0)
My mother, who has been in and out if my life growing up, was diagnosed with final stages cirrhosis of the liver. She was diagnosed with Hep C 10 years ago. If I only truly knew how powerful this disease was I would of heald my mother closer. She is very quite about her disease and how's she's doing. Recently put on Chemo to see if they could slow the disease down. But it was killing her. She recently had a major blood tranfusion. She's at home now, but she has no life. Sleeps 99% of the time. Which I understand but she shuts out the world including myself. I just want to hug her and kiss her and tell her you don't have to be afraid anymore! Her stomach is completely bloated as her ankles and legs, yellow in the face and trouble urinating. I feel like maybe this could be our final months together. It's just a very sad and scary situation to be going threw :(
Posted 7/6/2013 3:19 PM (GMT 0)
Hey Ang48,

I understand how u feel. My hubby was diagnosed with ESLD in Apr. 2013. He was recently hospitalized last Sat for a urinary tract infection, high fever, lethargic, and low bp. He is still in the hospital now awaiting a liver. But when he went in he had trouble urinating, swollen, and very yellow. It is really sad to see. His mental state is in and out. It hurts me to see him go through this and there is nothing I can do about it. I cry daily, but I can't let the kids see as I have to stay strong for them. But I just wonder how long will it take for a liver to come available.... sad

Just stay positive and prayerful. This forum has helped me out tremendously. I keep saying there is a rainbow after every storm... The rainbow will come :-)
Posted 7/6/2013 3:32 PM (GMT 0)
I'm sorry you're going thru all this. It's just doesn't seem fair some days. I pray everyday that there is a light at the end of the tunnel. Thank you for your kind words and my god bless you and your family
Posted 7/6/2013 5:59 PM (GMT 0)
Ang48, welcome to the forum. I'm very sorry that your mom is so ill. Did she ever have treatment for her hep C? At this point, she is probably too ill to tolerate it. How about transplant? Was she ever evaluated for that? Again, she may be too ill at this point to survive transplant. The excessive sleeping is normal with advanced hep C. I've had a TP and still require 12 hrs. of sleep at night and a nap in the late afternoon. From constant sleeping, a patient will often go into a coma and then pass away.

If it seems that her life is drawing to a close, please be sure to have her doctor contact Hospice. They can be a huge help to both patient and family.

We have a Caregivers Sharing thread on here that can be very helpful to you and offer great support.

I wish the news was better.

Hugs,
Connie
Posted 7/6/2013 10:29 PM (GMT 0)
Ang 48,

Welcome to the HW Hepatitis Forum. Folks who come here are patients and loved ones of those affected with liver disease. I'm so sorry you had to find us..but here we are.

I am a loved one, like you, of a liver disease patient. My partner of 30+ years was infected with Hep C after high school....IV drug experimentation gone wrong! So wrong.

He was so ill we were certain he would die.

But he met with a Hepatologist and on a good regimen for all the symptoms and eventually qualified for a liver transplant. While he (and the family) was going through this we were 100% sure he was dying. But 2 years and 2 months later he is with us...still tired, still with Hep C, but he is alive and doing pretty well.

Let us know how she is doing. Ask any questions, we'll try to help.

Hugs,
Mama Lama

Post Edited By Moderator (hep93) : 7/6/2013 5:20:40 PM (GMT-6)

Posted 7/6/2013 10:32 PM (GMT 0)
There has been no talk about a transplant, at this point I feel like she wouldn't want it she's fought a long fight. I dont know what steps her and her doctors have taken she is so secerative about her illness as if shes ashamed. Hospice is something we've discussed but she has semi alright days that make you think well this to shall pass. Then there are those days were her medication needs to be monitered and she needs help beyond what we can give her. Honestly I'm very confused. This morning @ 8:30 she hugged my grandma and told her goodnight, as if she thought it was bed time. Her confusion comes and goes.
Posted 7/6/2013 10:46 PM (GMT 0)
Mama Lama I'm glad everything seemed to work out with the situations you two have been handed. Your first paragraph nailed it!! " I'm sorry you had to find us but here we are" was overwhelmingly nice to hear . .
Posted 7/6/2013 11:18 PM (GMT 0)
Ang, confusion caused by hepatitic enephalopathy is par for the course. She should be taking Lactulose, perhaps with the addition of Xifaxan. Try to find out about this. It can make a huge difference.

May I ask how old your mom is? Is she being seen by a hepatologist?

Hugs,
Connie
Posted 7/6/2013 11:25 PM (GMT 0)
She's 48. She's only seen a pain doctor and a liver specialist that I know of.
Posted 7/7/2013 4:05 AM (GMT 0)
Welcome Ang,

  So sorry you had to find us, but coming and posting here will help...gather info, vent, share.  We care, and we have all been through it or are going through it.

  It's really a roller coaster ride, and especially hard if your Mom doesn't want to share much with you.  But, some advice I received that helped, "There will be good days and bad days, don't make the good one into a bad one.  Bad ones will come soon enough." 

  Am thinking about you.  It is really a confusing time for you, I can tell.  So many emotions, huh?  Well, keeping coming back here, it really will help you get through this...whichever direction it goes.

  I am the resident candle lighter...so will light a candle for you and your Mom tonight.  May you find some common ground to share with each other. 
Angie1953

Posted 7/7/2013 4:10 AM (GMT 0)
A liver specialist is a hepatologist. That's whose care she should be under. Her youth is on her side. If she's willing to fight and open to a transplant evaluation, there may be hope for her.

Hugs,
Connie
Posted 7/7/2013 4:12 AM (GMT 0)
HI Ang.. so sorry to hear about your mom... you've found the right place. Most of us have been on one side or the other of this disease. Actually all of us have. It's tough when your mom is being secretive. Take a step back. Take care of you. This can't be easy. Understand that while you want all those connections with mom, you may only be granted fleeting moments. Grab those moments. Keep calm and take some time to talk when she can. You'll be glad you did. Or simply hold each other. My Mike used to say "Let's make a memory".. and I'm glad we did.

My prayers are with you and your mom.
Sandia
Posted 7/9/2013 2:38 AM (GMT 0)
Angie thanks for the candle. It means a lot to us :)
Arneeb you're absolutely right I will be patient and take what I can get. Some days are easier then others to understand I'm not the only one suffering so is she. It's not all about me and my needs. I will tell her I love her oh so much. As much as possible!
Posted 7/9/2013 3:00 AM (GMT 0)
Ang48,

If her will to live is there she can come out of it. I have seen my hubby at his lowest pt, and his will to live has brought him back. He's not normal still confused, lethargic, wobbly on his feet, having BMs on himself, etc... But he is determined to live. Hep93 is right, Lactulose and Xifaxan has helped my hubby a lot. Please take her to see a Hepatologist ASAP, or if its that bad take her in to the ER. The ER was actually who diagnosed him, and got him in to see one of the best Hep in Houston. They did an endoscopy, CT scan, and biopsy all to determine he had ESLD. Don't sleep on it and think its the end cause I believe it's not the end until God says so!

Be delicate with her, and pull on her heart strings she will listen. She's too young to give up. My Hubby is 41 and he knows that's too young to go out without fighting for his life. We have a 7 yr old who adores him. I think our son is his reason for life, but whatever works to push him to live.

You and ur mom are in my prayers!

Tasha
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