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Posted 6/27/2013 6:19 PM (GMT 0)
Hello All,
I have been a faithful reader of ur posts since my hubby was diagnosed with ESLD in Apr. 2013. It has been a roller coaster ride since then. He was hospitalized twice in April. He was finally discharged with diagnosis of HE, and ESLD. Since then, it has been dr visits, meds, diet change, etc... He has had a total of 5 blood transfusions, liver biopsy, capsule endoscopy, and upper endoscopy. All showed no blood loss, but they have finally diagnosed him with hemolytic anemia. We have been going through the evaluation process for transplant, and his case will be presented to the board today. On our appt yesterday we were told he has Hep C, Wilson's disease, and non-alcoholic cirrhosis. We are in total amazement as to how he has contracted Hep C between April and now. He has always tested neg for the virus until now. Now with that news the hep dr wants me to get tested, as well. I can't be positive cause I am his caregiver, and get faithful check ups and blood work. We have always had a monogamous marriage for 8 years. I have held it together this long, and now the Devil strikes with another stumbling block. The doctor said it is curable in some cases, but he's too sick for treatment now, but will be given treatment post-transplant. Yesterday's appt was the worse of them all.

My question is...
Is hep c curable?
Has anyone heard of Wilson's disease?
Is it possible for him to be positive and not me?
What is the possibility of hep c coming back to attack the new liver?

Also, Connie, David, Ziffle, Mamalama you guys have helped me through really rough times since his diagnosis, and I want to thank you from the bottom of my heart :-)
Posted 6/27/2013 7:51 PM (GMT 0)
Dear Debess

Yes it is possible for your husband to be positive and you be negative. I get checked too, because my husband was positive for a long time and we did not know. While I don't think hep C is curable, I know it can go into remission with treatment. Unfortunately, when my husband had his transplant 13 years ago, he could not tolerate the treatment and is now very sick again. I can so indentify with you. I know that comeing here has helped me a lot. Keep posting. You are in my prayers.

Arlene
Posted 6/27/2013 7:56 PM (GMT 0)
Hi Dabess! So sorry that your hubby was diagnosed with ESLD, but glad you found this place. HepC could have been lurking in his body, undetectable, for years. Wilson's Disease causes an accumulation of copper in the body and also causes liver disease and also neurological/psychiatric symptoms. One of the earmarks of the disease is a faint copper edge encircling the iris of the eye. Yes, HepC can be treated and some of the newer medications have very good success rates. Also, it is very possible for your hubby to be positive and you to be negative. HepC is a blood-borne virus - blood to blood transmission. If your husband were actively bleeding and you had an open cut that made contact with his blood - it COULD be transmitted. And as for the possibility of HepC attacking a new liver - it will. The virus loves a suppressed immune system (anti-rejection meds do this) and a healthy liver to grow in.

I have to keep this short for now. But I wanted to say Hi and try to answer your questions. More members will be by shortly. Hang in there!

Post Edited (Splashdancer) : 6/27/2013 2:01:16 PM (GMT-6)

Posted 6/27/2013 7:57 PM (GMT 0)
Hi Dabess,
There's no actual cure for Hep C, though you can be undetectable for the virus. At least my docs say there's no such thing as a cure. Being undetectable is as good as not having it.

Wilson's Disease is an excess of copper in your body/liver. Like hemachromatosis sp., an excess of iron, it will cause liver failure.

You could have gotten Hep C, from another source, other than sex. It does sound strange that neither of you have tested positive until now.

As you may have read here, all of us who had a transplant, have had the disease return (actually, it never left, since it's in our blood). I have been fortunate to have taken the 2 part treatment and am now undetectable. Connie and MLs partner haven't yet been treated. We're all hoping that the new treatment that doesn't require interferon/ribavirin is going to be available in the next few months. Stay strong.
Posted 6/27/2013 7:59 PM (GMT 0)
Thanks Arlene for your response. I just don't understand where he could have contracted hep c in such a short period of time. All test were neg until now. Please keep us in your prayers. Our prayer now is to be listed on the transplant list. Hopefully, once transplanted his body will respond well to hep c treatment, and the virus won't attack the new liver.
Posted 6/27/2013 8:00 PM (GMT 0)
So sorry to hear about your news. There is information on the tab above that reads Disease and Conditions.. Some of your questions can be answered there.
What I have understood is that persons in monogamous relationships get HepC at a lower rate then those who have multiple partners or rough sex; however, that does not mean they do not get it. Also recommendations are made by the Center for Disease Control to use condoms.
It is possible for him to be positive and you to be negative. A test will tell you.
Google Wilson's disease.. you can find a lot of info that way. I believe that Hep C does come back after a transplant. The others can speak to that issue.

Most importantly, take a deep breath. Get tested. Yes, it's a shock but you are at the right place and moving forward in the process.. one step at a time.

Sandia..
Posted 6/27/2013 8:02 PM (GMT 0)
     hi dabess,   the same answer to all 4 of questions.  yes..yes..yes and yes.   hep c is curable with todays meds

         wilsons is an accumulation copper in the liver and brain

         if there is no drug abuse, the chances are slim

         yes the hep c will recur in the new liver

      you have many things going on.  being in the tp evaluation you are most likely in the right place.  keep me posted on your progress.  i have to throw this in.  your drs tell you that you will do tx after tranx.  ucsf is doing studies including treating hep c while on the waiting list.   you go into tranx being undetectable and there is no recurrence. 

                             barry

Posted 6/27/2013 8:08 PM (GMT 0)
Thanks Splashdancer and David for your response. I am trying to hold it together, but it hit me like a ton of bricks for this to be undetected until Monday. All tests have been neg until now, it's puzzling???? I have been an emotional wreck and have been in bed most of the day when I am awake it makes the reality set in that he has hep c, and the possibility that I could be infected, and maybe my son who has a yellow tint to his eyes.... This disease sucks, and it can take a toll on the caregiver emotionally. I have been strong up until now, and my mom tells me that this is the Devil's way of trying to break me down emotionally since I have been so strong...

This forum is so therapeutic and has gotten me through this far. I know that this is "a minor setback for a major comeback" and we will come out on top.

Thanks so much guys!

Post Edited By Moderator (hep93) : 6/27/2013 3:28:34 PM (GMT-6)

Posted 6/27/2013 8:18 PM (GMT 0)
Barry, they said that the treatment won't be good to start now since his liver is so sick. And I get that his confusion is prominent, loss of muscle mass is prominent, and memory loss is prominent. I love him dearly and hate to see him this way. He is currently taking Lactulose but recently decreased due to extreme diarrhea and he had BM 8 times a day. It was too much from him. I am going to stay optimistic that it won't attack the new liver with the new meds. The doctor speaks highly that it is curable with the new meds.

Thanks Sandia, I will go on the resource tabs you provided and read up on the info. I can't understand how this Wilson's and hep c have just surfaced??? All right before transplant enlistment??

Post Edited By Moderator (hep93) : 6/27/2013 3:29:59 PM (GMT-6)

Posted 6/27/2013 8:50 PM (GMT 0)
Is your husband taking xifaxin? That, combined with lactulose is a huge help for HE.
Posted 6/27/2013 9:25 PM (GMT 0)
David, yes he is taking Xifaxan in combination with Lactulose. I am wondering if the Wilson's is causing a lot of the confusion??? I read copper overload can cause confusion, so that could be contributing to it.
Posted 6/27/2013 9:39 PM (GMT 0)
Dabess, unfortunately, the way the Lactulose works is through 6-8 loose BMs a day. So don't cut it down too much.

Doctors seldom use the term "cured" in regard to hep C. It's usually said to be "in remission." It could be that it was missed before or that this positive was an error. Maybe during one of his transfusions, the blood used wasn't screened for hep C (though that should be standard practice now.)

The hep C virus doesn't really "come back" after transplant. It was never gone. It is in the blood stream. In my case, it was affecting my liver one month post transplant. I haven't been able to have treatment, either, because of ongoing medical problems.

As far as you or your son contracting hep C, remember that it is a blood-borne disease. It is not that easy to contract it through sex, though perhaps if a woman has sexual relations during her period it could happen. It can be contracted through shared toothbrushes or razors, but again there would need to be a cut or open sore. So please try to relax about that.

Hugs,
Connie
Posted 6/27/2013 10:23 PM (GMT 0)
Hi Dabess. Some have mentioned my partner, Mike, who had his TP 2 years ago. He had Alcoholic Cirrhosis (but is sober now), Hep C (and never cleared with Interferon/Ribavirin before TP), and HCC (and they tossed that tumor OUT with the old liver!).

His alcoholism is under control (praise the lord), the HCC is gone, but the Hep C returned with a vengeance. His viral load is over 6 million.

I think they should retest for the Hep C. And talk to you about this sudden diagnosis as he has been in their care for a while.

Mike and I have been intimate partners 32 years and I have never tested positive for Hep C and get that test repeated every few year. I am not nervous as sexual transmission is rare and we never engage in risky behaviors (stabbing each other with the same knife, sharing IV drug needles, using the same tooth brush when our gums or bleeding or ever.) And I uses latex gloves if I am handing his blood or other body fluids...and with ESLD there can be some amazing messes.

Mike is hoping to be treated for the Hep C when a new treatment proves tolerable. He has not been well enough to qualify for a treatment before now.

I need to look up the Wilson's Disease to see if the too much copper disease is something acquired from the environment or if it is genetic. If genetic, maybe have your child(children) tested.

Mike has intermittently had too much iron in his system -- hemachromatosis. That can be genetic or acquired. We have had all the children and grandchildren in his blood line tested with one grand as a carrier but no one infected.

BE sure to ask any questions, someone here will have been through the same thing at some point!

Best,
Carol aka Mama Lama
Posted 6/28/2013 7:41 AM (GMT 0)
Thanks Carol and Connie, I will definitely ask about the sudden positive, as we are in shock, well more so me than him. I do plan on getting our son tested for Wilson's, just as a precautionary measure. But we got great news today, they decided to list him or transplant. We are elated! The speak highly of transplant and its benefits, so we are excited. You guys are my bedtime stories at night, lol, I can't go to sleep without reading the forum. Again, you guys helping me through this difficult time.
Posted 6/29/2013 2:59 AM (GMT 0)
well !!! your news is the perfect bedtime story for me. barry
Posted 6/29/2013 4:00 AM (GMT 0)
Dabess, has hubby been through pre-transplant evaluation yet? This consists of many tests and consults and he will have to get through all of them successfully before he can be recommended for placement on the transplant list. Then he will be on his way!

Hugs,
Connie
Posted 6/29/2013 4:43 AM (GMT 0)
Good Evening, Dabess.
Great news about your husband making it through transplant eval....and approved for the list. My husband starts transplant eval on Monday. We are at Mayo, AZ. Do you mind mentioning your transplant center? You have been through a lot since April. Take care of you. It really is important....but darned near impossible ;)

Hugs to you both, themiz
Posted 6/29/2013 9:02 AM (GMT 0)
Connie, yes hubby has been thru all the test.
Themiz, We are here in Texas at The Methodist Hospital.

Well, we are here at the ER at 2:15 am, hubby had a fever of 103.4 not sure what brought it on. But they have given him Tylenol to break the fever. It has went down to 101. This really sucks! I'm 35 and have dealt with more in these 3 months, than I have in a lifetime. I just want him to get better! I'm so hurt on the inside, but I can't show it on the outside cause he need me to be strong...
Posted 6/29/2013 9:03 AM (GMT 0)
Thanks Barry :)
Posted 6/29/2013 5:25 PM (GMT 0)
Dabess, thanks for clarifying that for me. So it's very good news that he is on the transplant list. Do you know what his MELD score is?

You are young, but you are about to embark on a journey that will require every bit of strength you have. In order to draw on that strength, you will have to learn to take care of yourself. GET ENOUGH REST! EAT PROPERLY! If you are exhausted, you won't be able to comprehend was is going on during and after transplant. Read some of the older transplant and post-transplant blogs on here to get an idea of what may be expected of you both.

A fever often means infection of some sort, but not always. I had to go to the ER twice, once for an elevated temp. They didn't find an infection. So some things are just unexplainable.

Usually, transplant itself goes very well, but afterwards--even months afterwards--problems arise, as they have with me, Carol's Mike, and Mae's brother. Medications will be adjusted up and down. Your hubby will have to return to the hospital many times after transplant, for blood work, scans, and consults, not to mention unexpected visits.

So you see what I mean about your needing to have the strength to go through all this as the caregiver? You will come out of this stronger than you ever imagined you could be. Do be sure to check out the Caregiver's Sharing thread, where you will get a lot of support and info.

Things are moving forward, so just take it one thing at a time.

Big hugs,
Connie
Posted 6/30/2013 1:33 AM (GMT 0)
Hep93, his MELD score as of June 26 was 27. They just told me he has a bladder infection, which, was the reason for the fever. His bp is really low and he's dehydrated. They are giving him fluids and antibiotics. They are retesting him for hep c cause some things I won't believe. I am trying to rest, but it is really hard seeng him like this. But I will try. I feel optimistic about transplant and I'm just ready for it to happen. The hemotologist will be here Mon to speak with us on his blood levels for hemolytic anemia, Wilson's disease, etc...
I will take you up on your advice of resting and reading old post.

You guys are great and I'm blessed to have found you guys.
Posted 6/30/2013 1:56 AM (GMT 0)
Dabess, with a MELD of 27, he should be at or near the top of the list. Hang in there!

Hugs,
Connie
Posted 6/30/2013 5:24 PM (GMT 0)
Thanks hep93
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