Living with a parent with Hep C

Hi,

I was just wondering if there are any of you out there...

I remember back when I was in high school there was a lifesavers assembly and one of the coaches was a boy who's dad had Hep C. Until then I really just thought that my little sister and I were the only ones who's parent had/has Hep C. It was silly I know, but we live in sort of a rural small town and things like that aren't really "polite" conversation. So Ive always just felt like an island to myself. Maybe I could give you some background...
My mum had cancer of the immune system when she was 17, she battled and battled. Had many treatments and one of those treatments was a blood transfusion. She had 2 donors, one was her older brother, the other was an anonymous lady. Unfortunately this was back in the 1980's when the medical standards weren't so high... Long story short, they didn't test the woman's blood and she was indeed Hep C positive. They had infected my mum. She wouldn't find out until she was a little older and the symptoms started to turn up.

I am 21 years old and my mum is stage 4 Hep C. When I was 13 she tried the pegatron treatment, she nearly died. Because of the cancer and how much it damaged her body she couldnt withstand the invasive treatment. She had every symptom short of heart failure. Obviously this was hard to watch. Unfortunately she cant be cured. As any treatment will kill her.
Ive watched my mum get worse and worse over the years, I know how it will end. It breaks my heart to think of it... I dont know why I decided to join a forum. This will be the first time I've reached out to anyone who could be in the same situation. I guess I wanted to know Im not alone.
Honestly, shes getting worse and Im having such a hard time coping. I am her primary care giver, I wouldnt have it any other way. Sometimes I feel like Im doing such a crap job. Im not trained for this, I just love her and I cant leave her how she is. But its hard, my mum is my best friend, it hurts so much to see her get worse. And to know it will keep getting worse.
If there's any other kids out there, whos parent has Hep C, I'd like to hear from you.

Let me know Im not alone out here, fighting this war.

Hi MC, welcome to the forum.

As Ziffle says, those here are patients, caregivers, loved ones of people suffering from various liver diseases.

My partner, Mike, has had Hep C since the late 1960s. He often donated blood before folks were tested for Hep C. He did'nt find out for a long long time, after he started getting sick. At first they called it NonA Non B Hepatitis, and they tested blood donors before taking their blood at blood drives. That's actually how Mike found out...at a blood drive!

Not good for folks like your Mom who were infected.

Mike is now 63. He has had every liver disease symptom...crazy hepatic encephalopathy where he was out of his mind much of the time, edema in the legs and feet, high blood pressure, crazy nose bleeds and difficulty clotting if he got cut, sleepless at night and tired all day, etc.

In 2010 he stopped drinking all alcohol, went to AA many times a week and got his 6 months sober paperwork done (get a calendar signed at each meeting) to get himself elegible for transplant.

Then he was diagnosed with cancer also. They found a tumor in his liver. That moved him up the translant list a bit and he qualified for the next liver in May 2011.

Now he is post transplant, doing pretty well, but still has Hep C. He cannot do the treatment just now because is kidneys are not strong enough. The treatment almost killed him in 2003 when he tried it with the combo.

Mike hopes a new treatment is approved for post transplant patients that does not include Interferon in the next year or so, then he will try the treatment again.

So...no you are not alone. Plenty of us are out here with loved ones affected by Hep C. Mike has a daughter who lives 1000 miles away. When he was so sick, she came down to Florida many times...brought the grandchildren here basically to say goodbye. It was so sad. She was frantic that he get the transplant...and he did.

I encourage you to come back, to tell us how she is doing.

Are you having any difficulty with managing her medications? Is she taking her lactulose. Avoiding alcohol? Eating a healthy diet. Those are things you can help with for sure. And then there is transportation to all those appointments. Mike couldn't drive for a long, long time.

Best to you and your Mom,

Mama Lama

Post Edited By Moderator (hep93) : 1/27/2013 11:00:13 AM (GMT-7)

Hi, MC, and welcome to the forum. I strongly suggest that you check out the Caregivers Sharing thread on this forum. Also read the info in the folder entitled Hepatitis Resources.

I've always said that caregivers have it worse than the patients. It takes a special kind of person to take on that job.

Has she ever been evaluated for transplant? If not, I suggest you seek out the nearest major medical center that does transplants. If you have her recent lab results, you can calculate her MELD score. That score is how it is decided who gets transplanted first, though other factors (such as liver cancer) can increase the score. Here's the link to the MELD calculator:

http://www.mayoclinic.org/meld/mayomodel6.html

Is your mom under the care of a hepatologist? If not, she should be. And if she sees one, you might check into the possibility of her being treated with the new, non-interferon treatments that will become available within this year. The side effects are far fewer than other treatment options.

I have hep C and had a transplant in Oct. of '11, due to liver cancer. I am preparing to try the new, 3-drug treatment soon. The sides are pretty harsh, so I'm concerned if I will be able to tolerate it. Hep C is already damaging my new liver at a rapid pace and I do not have the luxury of waiting for the non-interferon treatment.

We are glad you found us. Please stay in touch.

Hugs,
Connie

Mae, how is Richard doing now?

Hugs,
Connie

We love to hear success stories!

Ty David, hope to be in touch with you this summer, btw, not just because you live on a wonderful island in the most sought after vacation spot, Cape Cod. :)

Mae

Hi, Bail9865, and welcome to the forum. Your post nearly slipped through the cracks. It is suggested that all new members start their own thread, introducing one's liver disease and problems so people will see it and post. Just click on New Topic instead of Reply.

Thanks!

Hugs,
Connie

Welcome and from what I can tell, it is hard to know how a person will react to treatment, because everyone is so different. It is one of those things you will just have to take day to day, hour to hour.

Don't try to get ahead of yourself, because what you think may happen, or what happens to another person may not happen to your Mom. This is such a strange disease, it affects everyone a little different, just like the treatment does.

We WILL be here, so you can ask your questions and/or rant and rave (if you need to) or ask people to share their experiences. What ever you need, just ask folks for it here. It is tough to be the one watching them go through the 3 drug treatment, but you have companionship here and lots of experience. Take care and have a good evening.
Angie1953