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Posted 10/12/2008 1:40 AM (GMT 0)
Hi, I am new to this site and was thankful to have found it.  My husband has liver cirhosis and has been extremely sick since this summer.  He was born with Hep B and has known that he has had it for about 6 years. But we just found out about a month ago that he now has cirhosis and that his liver is damaged severly.  His hepatologist told us that he would never be like he used to be but hopefully as long as he continues to take his 2 antiviral meds that he could stay the same.  We are praying that he does not have another hep flare-up.  I have read several posts on here with people talking about missing their loved ones, even though they are still alive.  I definately understand this.  I met my husband last February 2007 and we both felt like God had brought us together.  He told me at the start that he had hep B and that he was interferon at the time.  We waited until his interferon treatment ended in October of 2007 and then after recieving good news that the viral level had dropped to nearly nothing, we decided to get married.  We got married in November 2007 and had a great new life.  Then this summer, he became very sick.  By the time he went to the doctor, he looked almost gone.  He was so yellow, his skin and his eyes.  He had no strength.  The doctors conformed it was a hep B flare up and that apparently the interferon treatment that they thought had worked, didn't last.  Since the flare-up this summer, my husband has been a different person.  He sleeps all the time because he is so exhausted.  He rarely drives because of the exhaustion and also because he has such a hard time concentrating.  He used to fix computers and was extremely aware of everything around him.  Now he just cannot concentrate on anything and that also makes him mad at himself. His platelets are low and he has nosebleeds all the time.  I am wanting to talk to some people that have been through this or are in this position now.  Hope to hear from you.
Posted 10/12/2008 3:38 AM (GMT 0)

Groomergirl, I am so sorry you are seeing your husband go through this.  I have bumped a thread about new Hepatitis B treatment to the top of this forum.  Perhaps you will find some information there useful.  Basically, it involves low-dose Naltrexone combined with alternative therapies.

Your husband's diet should be high in fresh fruits and vegetables, and no red meat.  Fish and poultry are okay.  The liver has a difficult time processing red meat, which is the reason for eliminating it.  It also causes inflammation.  A good diet can go a long way towards better health.

His lack of concentration can be a symptom of encephalopathy.  Usually Lactulose is prescribed for that.  Ask his doctor about the possibility of your husband going on Lactulose.  He may feel he does not need it yet.

I'm sure you will find a lot of information and support here.


Posted 10/12/2008 12:24 PM (GMT 0)
Groomergirl

Welcome to the forum. I too am very sorry that you are having to deal with this horrid disease and having to watch someone you love deal with the effects. There are several care takers here that I am sure know exactly how you feel and will be a great support system for you.

Again welcome

Lucy
Posted 10/12/2008 4:36 PM (GMT 0)
Welcome to the forum Groomergirl. I know exactally how heartbreaking this disease is. I'm so sorry that you are both going through this, especially as newlyweds. My husband has hep C and cirrhosis. We have been together since we were 15 and 16. My husband is 44 now, and I will be 43 next month. I started noticing changes in his personality about 4 years ago, but I didn't know what was going on. A little over 2 years ago he was diagnosed with cirrhosis. It explained alot. I was so afraid and heartbroken. I know it is really hard watching someone you love go through this. Especially your soul mate. There are times that I think I can handle this, and other times I feel I'm not so strong. Usually when he has the flare ups of extreme fatigue and encephalopathy. It can be so lonely. I was really glad to find this forum also. Everyone is very helpful and understanding. It can help tremendously speaking to others that know what you are going through.

You and your husband will be in my prayers.
Posted 10/12/2008 6:41 PM (GMT 0)
Butterfly, it's extremely rare for a couple that young to stay together!  He must truly be your soul mate.  Congratulations!   :-)
Posted 10/12/2008 9:36 PM (GMT 0)
Thanks Connie. Thats why I'm still here holding on. Today I have been feeling kind of depressed, because he has been staying fatigued again lately. He went to bed at 11:00 last night, got up around 3:30 and is now back in bed. I took a couple of vacation days about two weeks ago so we would could spend sometime together, but I waited too late. That is when the fatigue started setting in again. I know that things could be so much worse. I guess I am just feeling lonely and missing him.

I am so thankful for all of you here. You are all always in my prayers.
Posted 10/13/2008 1:18 AM (GMT 0)

Butterfly, I know it must be discouraging.  Unfortunately, fatigue is a big part of liver disease.  I usually sleep for 10-12 hours at a stretch if I don't have somewhere to go or some other reason for getting up.  And of course it doesn't solve the fatigue problem.  Some days I really must force myself to get out of bed and  get moving.  Believe me, your husband misses doing things and being more a part of your life, also.

You know we are always here for you.

Posted 10/13/2008 3:53 AM (GMT 0)
Hello Groomergirl, Welcome to HealingWell. You have found the right forum, we have so many wonderful members that are willing to share their knowledge and give their support to others who are dealing with the horrific disease.

I lost my soul mate to it, so I fully understand what you are going through plus some. Hang in there.......One of the keys for you to be able to handle getting through this.......is to take care of yourself too. It's very easy to get caught up in all the caregiving and forget about yourself. It is imperative to take a little time for you when ever you can.

You are not alone in this anymore........come back anytime you have questions,ideas,suggestions or even just to vent. Glad to have you aboard............

Thoughts and prayers
Posted 10/14/2008 12:54 AM (GMT 0)
Thanks to everyone for talking with me. It is encouraging to hear that some of you or your loved ones have had cirrohis for a long period of time and still have their life. (I know their life is not what it used to be, but at least they are here.) I am so sorry to hear about you losing your soulmate, Pink Grandma. If you don't mind me being curious, did your husband get to live a long time after being diagnosed with cirrohis? We were both very scared at the first actual diagnosis because we thought his life was gone. But the specialist told us he could live for 1 month, 5 years, 10 years, nobody really knows. That gave us some hope. But somedays when he barely gets up, I fear the worst. Has anybody experienced nosebleeds like all the time. These don't hurt, I know, but they worry my husband because he doesn't want his blood getting on anyone.
Posted 10/14/2008 2:16 AM (GMT 0)

Groomergirl-

Welcome to the forum!! I think you will find that this is a very educational place to be and also very supportive. My husband also has HepC and cirrhosis of the liver. He was diagnosed 4 years ago with the HepC and cirrhoses, stage 4,  and really did not start having major problems associated with it until the last couple of years. He tried the interfuron treatments, but had to discontinue, and most recently have been put on the transplant list. He also goes through phases where he has NO energy what so ever! Right now, he is sleeping, has been sleeping since about 2:00 yesterday afternoon. When he gets up it is not for long periods of time. I don't know so much that it is caused by the cirrhosis as it is the hepatitis, which can really make you exhausted, achy, etc....as far as "time frames" go, it really depends on what stage of cirrhosis, etc.....some people can live for years with cirrhosis. But, they have to make some major lifestyle changes. No drinking what so ever, watch the protein, especially red meats, etc.....this disease affects everyone differently. I am so sorry you are having to go through this, but know that we are all here for you......

Mary

Posted 10/14/2008 2:23 AM (GMT 0)

Groomergirl, is your husband on blood thinners?  Is his blood not clotting as it should?  I'm trying to determine why he has frequent nosebleeds.  Have his doctors said anything about it?  Liver disease can affect the blood's ability to clot.  That is why when routine blood work is done on hepatitis patients, it always includes a PT and PTT.  Bruising easily is something liver disease patients also experience.  I find bruises on my legs all the time, and have no idea how I got them.  It doesn't take much for me to get bruised.  I can understand your husband not wanting to expose anyone to his blood, but it takes more than just getting his blood on someone for them to contract hep B from him...such as an open cut or sore on that person's body which his blood gets on.  When he has blood drawn or has other invasive procedures, he should always let the tech or doctor or whomever know that he has hep B--which he probably already does--so they can wear gloves and possibly masks or goggles.  I have that same concern as a hep C patient.  If I cut myself and am bleeding....even when I'm alone...I instinctively panic a bit--just a knee-jerk reaction.

For anyone who might not know, the correct way to stop a nosebleed is to pinch the nose on either side with middle finger and thumb and lean forward with the head almost between the knees.  Maintain that for a minute or so and the nosebleed should stop.


Posted 10/14/2008 2:30 AM (GMT 0)
Hi Groomergirl, People with liver disease often have problems with their blood clotting properly. That is what's causing the nosebleeds. Have the doctors told him to avoid aspirin and NSAIDS such as ibuprofen? I hope so. They can cause the blood to thin and make bleeding worse.
Posted 10/14/2008 3:08 AM (GMT 0)
Hello Groomergirl, No I don't mind sharing anything here about my husband's journey with liver disease. That's why I am still here. If I can help anyone with information about it then he didn't die in vain. Anyhow that's how I look at it.

Well he was officially diagnosed with cirrhosis in 1999 about May or June of that year. He died in April of 2007. I asked his GI doctor that made the diagnosis how long was the prognosis. He said that the average life expectancy once diagnosed with cirrhosis was about 5 years. My husband lived 8 years that was with continued drinking until January of 2005, when his first encephalopathy episode happened. It scared him and me silly and he quit cold turkey. From then, he became a model patient.........following all the doctors orders, eating right and taking his meds as he should.

As far as the nose bleeds......he had them too. A damaged liver can not process the blood as it should and most liver patients have thinner blood.
If he is having lots of nose bleeds his blood count is probable low. He may need transfusion to get back some energy. Ask his doctor about his blood count and if he needs a blood transfusion.

Hope this helps........thoughts and prayers......
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