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Posted 10/24/2007 5:01 AM (GMT 0)

Hello everyone, I am new to this site, and I would like to thank the lord for finding it. My husband was diagnoised 11 years ago with hep c but we didn't find this out until a couple of weeks ago. He had a liver biopsy back in 96 and was told everything was fine. This past March he started getting really tired and sleepy all the time. Then his legs and ankles started swelling. I finally talked him into going to get checked out. His new doctor ran blood work and found that his liver enzymes were very elevated. He told her that he had it checked out in 96 and his doctor at the time told him he was fine. She sent for all of his records. She said that the blood work in 96 showed that he had hep c, and the biopsy showed liver damage. He was NEVER told this by that doctor. Now, we have learned that he needs a liver transplant and I'm am so mad. If this doctor would have told us then what was going on, he could have started treatment and it wouldn't be to the extent that it is now.  They are saying that "his liver is badly damaged", he has ascites, portal hypertension, enlarged spleen with collerated vessels, low platlet count,etc....the list just seems to be getting longer with every test. My question is, {if anyone knows the answer}, how long until all the really bad stuff starts that I've been reading about on here? We meet with the hep c doc Nov. 13. I just would like to have some idea of what to expect and when. God bless everyone of you that has been hit with this awful disease and your loved ones. Any information would be greatly appericated.     

Posted 10/24/2007 4:32 PM (GMT 0)
Welcome to the forum HepHater!  I would be going ballistic if I found this info had been kept from me!  I did have a similar situation, though.  I was told in '91 that my liver enzymes were elevated somewhat, but not to worry about it.  They did not even have a test for hep C then.  In late '92, I had a new doc who did pursue the elevated enzymes.  Told me it was either mono or hepatitis.  It came back as hep C.  She told me that they did not have a test for it the previous year.  Anyway, from there I was referred to a GI doc and had a biopsy.

If I were your hubby, I'd try suing for medical negligence.

As for the "bad stuff":  Nobody can tell you when or if your husband will go into end-stage liver disease/failure.  If he's been told he needs a transplant, then his liver is severely compromised.  I will leave it to others who have experienced this, or have partners or family members who have.  Each person is different.  You just have to deal with it one day at a time, one symptom at a time.

Prayers for you both,

Connie

Post Edited (hep93) : 11/12/2007 8:59:44 PM (GMT-7)

Posted 10/24/2007 10:35 PM (GMT 0)
HEPcHATER, Welcome to the forum. I am sorry to hear that your husband has this terrible disease. My husband was diagnosed with hep C in 1994. He has been monitored by doctor's ever since (biopsies every couple of years). We found out about a year ago that he has cirrhosis. He has the same complications as your husband-ascites, portal hypertension, enlarged spleen, enlarged liver, low platelets and varices. I also found this site looking for the same answers. From what I have learned so far cirrhosis is different in everyone. Some people have severe complications right away while others go years before they set in. There is no way of knowing when to expect things to start happening. That's what is so frustrating with this disease. There is no way of planning. You just have to take it one day at and time and pray for the best. I know it is hard watching someone you love so much go through this. When I read your post it reminded me off myself. There will probably be times that you feel so alone, but know there are people here ready and willing to listen and help when they can. Keep coming back. I am fairly new here and just knowing there are people here who understand what I am feeling has helped a lot. You and your husband will be in my prayers.
Posted 10/25/2007 1:56 AM (GMT 0)
Hello and welcome HepCHater. Good name. That says it all for all of us. Both Connie and Butterfly3 are right as rain. Each person is different. Your husband may get some of the symptons and not others. The important thing is to follow his doctors orders regarding drinking,smoking, diet,exercise,rest and tests. The better your husband takes care of himself the longer some of the symptons will be held at bay. Hopefully your husband is a candidate for a liver transplant. If he is not now... that what he needs to focus on... is doing everthing possible to make it happen. As far as how long it will take for the really yucky stuff to start happening ....for my husband once he had his first encephalothopy epizode it was all down hill from there. It seemed like every couple of months or so something else would start going wrong. Stay on the doctors about making sure that all the tests are ordered when they should be. Also make sure you call for all the results. Don't leave it up to them to call you. They drop the ball all the time. It's your husband's life your talking about don't just leave it in someone else's hands... be very proactive.
Please excuse my spelling. I am just too tired to get my dictionary tonight. Have a good evening . And if you have any questions or need any support just come back and we will be here to help you any way that we can. Thoughts and prayers.
Posted 10/25/2007 3:44 AM (GMT 0)

Hello and thank all of you for your response and input. I just feel so lost not knowing. There's more to this that I didn't want to get into in my first posting. I didn't want babble on. When he had a ultrasound for his liver a couple of weeks ago, they found a mass in his gallbladder. He had surgery this past Monday, the 22. We will find out if it is cancer next Wed. They looked at the liver while they were in there and said it looks pretty bad. They didn't want to take another biopsy of it because of his low platlet count. He says he feels that if one doesn't get him the other will. That really bothered me because he isn't one to whine or think negative. I'm just so worried about him. I feel like I'm bothering him when I try to talk to him about it. Which also bothers me because we have always been able to talk about everything. This disease makes me so mad. I feel like it is tearing our world apart. I keep telling myself to take one day at a time, but he means the world to me and the thoughts of losing him scares me to death. He isn't a drinker, but he does smoke. We are going to quit together. Thanks so much for listening to me ramble and vent, it really helps. God bless every one of you, and you are all in our prayers.

Oh.... Grandma, don't worry about the spelling, My husband keeps having episodes of forgeting how to spell, small, everyday words here lately, so I've gotten used to it.

                LOVE LIKE THERE IS NO TOMORROW 

Posted 10/25/2007 6:01 AM (GMT 0)
"Grandma, don't worry about the spelling, My husband keeps having episodes of forgeting how to spell, small, everyday words here lately"

This could be a sign of early encephalopathy. Make sure they test his amonia level when he has blood work done.
Posted 10/25/2007 4:12 PM (GMT 0)
Hello, HEPcHATER,

I'm fairly new here to! But, in the past few weeks I've gotten alot of support and great advice! Don't ever think no news is good news, like we did. Will is my 21 yr.old son and he AML Leukemia 1987-1992 remmission. 2002 went for 10yr. checkup thought everything was fine, life was good! On his visit we were told there were side effects to chemo ect. Will had Chronic Hep B for app. 10- 12 yrs..As of 8/07 he is now cirrhosis and Dr's. say will need Transplant! I so know your frustration,anger and every other emotion (list to long)that you and your family are going threw.It's a very SCARY disease and I feel that if we had knowledge of this beforehand it could have been controlled! This is a great forum and you will learn alot! some info not so good but, don't give up! Hang in there and know you and your husband are in our Thoughts and Prayers!!!

That, that does not break our spirit only makes us stronger! And, my Will say's even tho his life dreams have been crushed, He'll just make new ones!!! Live and Love each day to the fullest!!! Good luck!

TONI

 

Posted 10/25/2007 11:43 PM (GMT 0)
HepCHater, Connie is right about the early signs of encephalopathy. I started seeing it in my husband before I knew he had cirrhosis and didn't know what was wrong. He would forget things, seem very slow, get confused easily. He just didn't seem as intelligent as he always was. I started researching cirrhosis and learned about encephalopathy. I talked to the doctor about his symptoms and she prescribed Lactulose. It has helped a lot. I know what you mean about being scared. There is not a day that goes by that I don't think about the future and the uncertainty. If feels like all your hopes and dreams are slipping away from you. It really scares me. I know that I just have to be there for him, try to keep him happy and as healthy as possible. He makes that hard sometimes. He has to watch his sodium and has developed an addiction to "Chick O Sticks" (candy from the 70's or 80's). It wouldn't be bad if he could have just one. He usually buys five at a time. What's a girl to do?lol
Posted 11/12/2007 5:14 PM (GMT 0)
bump for Medwife
Posted 11/12/2007 10:37 PM (GMT 0)
Hi HepChater,

I am new to this also (the site not the disease).  It has taken 29 years for this disease to turn into cirrosis (I can't spell half of this stuff).

Here are some of the things that have helped me:  I gave up eating all flesh, no red meats whatsoever!  Do not cook with cast iron, the foods absorbs the iron.

The liver loves and is a very forgiving organ (Thank Chris Jesus), ice water with chunks of lemon in it, this seems to detox, grease, and just is good for the liver.  Diet is very important.  No over the counter medications.

This disease laid dormant until 1998, in my system.  I can tell you that it's a RNA virus, therefore, no vaccine will ever be made to combat it.  I was honored to have address Congress on this disease.  I brought each member a home test kit, figured since I am a veteran, and received the blood from the Air Force, they should deal with it at a more personal level.  There is no federal funding for Hep C., and Dear Sweet Jesus in Africa, there is Hep K.  This isn't going away.

I was just approved to be excepted into KU Liver Center, but while in the hospital I was fired now I have no health insurance.  I have no idea what stage of cirroris (there are 7) I have, and I'll have to wait until I get Federal Disability, which is near impossible for this condition.  Plus fighting the VA, etc. 

I just thank God for the life He has given me, I thank God, that the disease didn't pass the placenta to my daughter, because I had the disease and didn't know it.  My son feels bad because I had to have a pint of blood the day after his birth.  I tell him I am honored to have him as my son, and would have taken the blood knowingly, just to have held him in my arms and to see what a fine man he's turned into.  I am a young woman 48 with a seven year old grandson, I just pray that the Lord will allow me to dance at his wedding.  If not, I'm ready to go, I don't fear death, I think that the grave is a doorway to something much better then this place and time. 

God Bless you all, I know the frustrations you are going through.  But, you are strong, this disease replicates 78,000 trillion times every eight hours.  The Hep C Connection out of Denver is very helpful with information.

Got to Scoot!

 

Posted 11/12/2007 11:29 PM (GMT 0)
Hi Tambo and welcome to the forum, My husband has hep C and cirrhosis. He has no idea how long he has had the hep C but was diagnosed in 1994. Last year he found out he has cirrhosis. My husband lost his job in May due to the illness and is also without health insurance. He filed for social security about a year and a half ago, was denied and is now waiting on a hearing. Hopefully we will have good news soon. God knows we could use it. I wanted you to know that I understand what you are going through and that you are in my prayers.
Also thanks for the info on transmission of hep c.

Take Care
Posted 11/13/2007 4:17 AM (GMT 0)
Butterflythree, just wanted to mention that in the time that you are waiting for a hearing date, SS often goes ahead and approves the claim without it reaching court. That's what happened to me. I heard from my lawyer that I was being approved and did not need to go to court. Everything happened quickly after that, including receiving a large lump sum payment. It had been 2 yrs. since I had first filed. Does your husband have a lawyer?

Good luck!
Connie
Posted 11/13/2007 11:37 AM (GMT 0)
Tambo

Just wanted to welcome you to the forum. I hope you the support that I have here.

Lucy
Posted 11/14/2007 12:53 AM (GMT 0)
Connie, My husband does have a lawyer. They have told him that his name should be coming to the top of the list. I think he was probably denied because of his income. His job was a union job and they had really great benefits with sick pay so most of his earnings were from sick pay. He received a lump sum payment for 02-03 due to his health problems and was told by Social Security that the next time he applied he wouldn't have to go through all this again. As you can see that was not true. Do you know why Social Security approved your claim without going to court? Did anything change in your situation?

I also wanted to thank you for explaining to me the problems you have with Hep C. It explains a lot of my husbands problems for the past several years. I wasn't even aware that it could cause extreme fatigue. I talked to him tonight, and he was never told that. He has been in and out of the doctor's office through the years complaining of fatigue, sinus infections, viral infections. The doctors would send him home with a prescription and never take the time to explain anything to him. I feel so guilty for not taking the time to research Hep C as I have with cirrhosis. The only thing I really knew was that he should not drink. A lot of things would have been a lot easier to handle if I had known what I know now.

Thank you for being here Connie. You are always in thoughts and prayers.
Posted 3/14/2008 12:29 PM (GMT 0)
Bump for confussled.
Posted 3/14/2008 5:26 PM (GMT 0)
"Do you know why Social Security approved your claim without going to court? Did anything change in your situation?"

Butterflythree, I apologize for not answering. I am just now seeing your post. There are times I get so busy with surgeries, doctors, etc., that I don't have a chance to get in here and read through everything. Anyway, in answer to your questions:

The lawyer I had did not really do his job. I was sending him updated medical reports, x-rays, etc., to copy and then forward to SS. Apparently, he failed to do this, so they did not have complete info on my case. When he was fired and another lawyer in the firm took over my case (whom I had originally requested to be my lawyer, but he was tied up with a criminal case at the time), things got done and moved quickly. My SSD was awarded based on several problems, not just hep C. I had undergone bilateral hip replacements due to osteonecrosis or ON (aka avascular necrosis or AVN.) This is much more damaging than arthritis. The bone dies and collapses. I had the left hip redone 3 wks. after the first surgery, and was placed in a body cast for 3 weeks and a locked hip/leg brace for another 5 wks. Due to my immobility, I was in a skilled nursing facility for 7 weeks. Both hips still bothered me too much for me to continue working as a medical transcriptionist (couldn't sit that long), nor could I walk much or stand for more than a few minutes. In addition, the hep C fatigued me so much that I had only been able to work P/T since '93. I also had some depression. I hadn't yet been diagnosed with liver cancer or had another revision on the left hip, at the time I received my award from SSD.

It always helps a case to have more than one thing going on, and especially if there is a mental/emotional problem in addition to the physical. My b.f. received his SSD within 9 mos. w/o going to court, as he not only had a really messed up back and neck (had surgeries on both and still has pain), but also was diagnosed with clinical depression. BTW, we had the same lawyer. I believe I would have gotten my SSD sooner, had I gotten the lawyer I originally wanted from the get-go.

Hugs,
Connie
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