I was 34 and he was 48 when he went to the ER from dehydration from purging for approx a month and complaining of stomach pains. We found out he was diabetic with acetosis since his sugar was over 500. The doctortold us he had unusually high liver enzymes and to follow up. First doctor (intern) he went to told him he had liver cancer and to go home and talk with his family and walked out the door. He came home in tears. I immediately set up another appt with a hep c liver cirhosis Professor. After a battery of tests including a sonogram, he tols us he had end stage cirhosis and has had it for at least 20-30 yrs from hep c either from serving his country in the Marines from 79 to 83 or his single tattoo. A new drug "Incivek" came out and we use it with pegasys and ribaviin. While he was on it his red blood cells dropped so low he was losing his memory completely. Every other week we were in the hospital for iv fluids to flush his kidneys now so he wouldn't have kidney failure. It was the most heart wrenching thing for me to watch my intelligent, outgoing, funny husband I fell in love with lose his mind. Luckily the doc realized the ribavirin was doing this and lowered his dose. In 6 weeks the virus had gone from 5 million to 0. however the y didn't do studies on that drug for later stage liver disease. His body built a tolerence and the insurance company didn't mail him his pegasys on time twice so he. missed 3 doses and its back. I asked his doc what his life expectancy but he wouldn't tell me. Maybe he wants him to stay hopeful. I looked it up -2-5 yrs. This could be his last year but I'm not telling him that either. How does a young 36 year old woman handle this let alone now any chance we had for intimacy is gone? Even on a good day he's terrified I would get hep c which I would have gotten by now. When I feel the need to cry I do it in the shower .I have to at least act like I'm strong for him. The man I met was always active and now he doesn't want to go anywhere. He's on the transplant list but in nyc you need a score of 36!!!
Welcome to the forum. Sorry to hear about your husband and the difficulties you both are facing. Someone will chime in soon to help answer some or all of your questions. Make sure you are getting the best possible healthcare you can. Just do the best you can at getting connected with liver doctors and everything in-between. If there are any Hepatitis C meetings in your area see if you can attend. Even if your husband doesn't feel like going, it may help you to deal with the unexpected. Good luck and God Bless you both!!
Sad as your story is, he is far from the only person to learn they have hep C when they already have advanced cirrhosis. It happened to me.
It's very difficult for a person who is already this sick to clear the hep C virus.
When I was diagnosed, I had a belly swollen up with ascites, fluid. I was able to control this by eating an extremely low salt diet and with diuretics.
What may be affecting his mind, has nothing to do with his red blood cells. It is a condition caused by cirrhosis, called hepatic encephalopathy (HE). Too much ammonia causes this. It is controlled with a medicine called lactulose. Also he should not eat red meat, and stay away from iron.
Honestly, I shouldn't be telling you this. His doctor, a hepatologist, a liver specialist, should be advising you.
You need to find a hepatologist experienced with liver disease and transplants.
I had a live liver transplant in April 2009. My daughter was my donor. The great thing about going this route was it didn't matter what my MELD score was.
You might want to see if live liver transplant is an option for your husband. Not all transplant centers do them.
Back to your question about how long your husband may live w/o a transplant. Nobody knows. This is why your doctor can't tell you.
When I was diagnosed the doctor told my husband I had 5 years. I had . my tp 4 1/2 years later and was very sick, so doc was close.
The reason your husband isn't active is his liver is so damaged he has no energy. I was the same. Our livers filter everything we eat and breath. His body is working hard to keep him alive, hence his tiredness.
I suggest you read up more about hep C and transplants. Try hepcadvocate.org as a place to start.
Don't give up. Go forward. Life changes. Don't look back. He can be well again.
Do take care of yourself because he needs you to help him.
OH made some great points. Please follow her advice. You will feel so much better when you realize what your husband is going through is "normal" for liver transplant patients. I would highly recommend you find out if the transplant center in NYC has a transplant support meeting. This is where patients waiting for transplants, people that have had transplants and there caregivers (you) sit around usually with a social worker and talk about your experiences, fears, concerns, what will happen as transplant gets nearer, during transplant and after transplant. Caregivers play a vital role in the recover of the patient. You will meet other wives, husbands, sons and daughters, relatives of the person that will be having a transplant.
I am a waiting transplant patient myself. I am listed for transplant at two centers including Yale New Haven in Connecticut. So I am talking from personal experience.
For get about "up -2-5 yrs. This could be his last year". He will get a transplant before his gets too ill to die so death has nothing to do with this. Without a transplant yes, we will all die in a number of years. I have liver cancer. If I don't treat and control my liver cancer (HCC) I won't live much beyond a year with that thinking. THAT IS WHY WE GET LISTED FOR TRANSPLANT. So we DON'T die. Our hepatologist will keep us alive so we make it to transplant. Your husband will not die having a MELD score of 36. There are many people right now with MELD scores of 36 and higher waiting for liver transplants.
As far as a MELD score of 36 in NYC. Yes this is standard for New York City. I live in Northern California and we also have waits until the high 30s. I know two friends of mine whose MELD scores were over 40 before they got there transplants here in Northern California. They are both doing fine and living pretty much normal lives again. This is normal for transplant centers with long waiting times. They know how to keep the patients alive until that life saving liver arrives.
So there is no reason to give up hope. Every one else is going through the same system as your husband. The great majority make it through transplant and go on to live "normal" productive lives.
You don't have to be strong for your husband. He needs to face the reality of his situation. Unfortunately due to your lack of knowledge about liver disease and transplant your are drawing many false assumptions and you don't really understand what is happening to your husband.
I am not saying it is an easy disease to understand but in time you will learn a lot if you apply yourself to it. The more that you understand everyone of us who hope to get liver transplants must go through the same things your husband is experiencing you will be able to put his illness in proper prospective. You and your husband have already done the number one thing that someone in his condition should do...get evaluated at a liver transplant center where they deal with other patients like your husband every day of the week. Being listed for transplant and being under the care of a hepatologist at a transplant center are the most important thing anyone with cirrhosis can do.
I am not saying cirrhosis is a bed of roses. No. I have been through hell myself with this disease I can tell you. But there is the option of a transplant that can save your husband's and my life. Transplant has never been safer and more understood than it is now. And by the time we have our transplants there may be new better treatments for us. So hold on. It is a roller coaster there is no doubt about it. But is you learn more about cirrhosis and treatment it won't be as scary as it appears now. Remember we are all on our journeys to transplant. We come from different backgrounds and knowledge about our condition. But in time we can all support each other as we get through this medical crisis in our lives or the life of a loved one.
If you want more information about a particular topic I might be able to refer you to some good online sources. Also the transplant center should have information about preparing for transplant. You can always call and see what literature is available to you.
Also I would like to make a plug for folks out there to be organ donors. You can save up to 8 peoples lives by donating your organs after your death. Many of us will be cremated and have our organs burned or put in the ground. Meanwhile people with hep C and many many other diseases and conditions are suffering terribly as they wait on long lists for a life saving transplant. Unfortunately a number of people die waiting. Please think about helping others by giving the gift of life. You can get more information and become a donor here.
My best to your husband and yourself.
Thank you stormy!!!
As a future liver transplant recipient myself and ambassador for the California Transplant Donor Network (CTDN) and donor... I can assure you all the people I know that have received donor organs are eternally grateful to the donors that gave them the ability to live a second life that they won't have without the generosity of all the wonderful donors out there. Yes some of my closest friends are alive today thanks to someone out there thinking of others and the gift of life they can provide. Every donor counts!
* 113,371 people are waiting for an organ
* 16,091 people are waiting for liver transplants as of today.
* 91,133 people are waiting for a kidney as of today.
* 18 people will die each day waiting for an organ
* 1 organ donor can save up to 8 lives
Because you may save up to 8 lives through organ donation and enhance many others through tissue donation.
Last year alone, organ donors made more than 28,000 transplants possible. Another one million people received cornea and other tissue transplants that helped them recover from trauma, bone damage, spinal injuries, burns, hearing impairment and vision loss.
Unfortunately, thousands die every year waiting for a donor organ that never comes. YOU have the power to change that.
LEARN THE FACTS
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FACT: Anyone, regardless of age or medical history, can sign up to be a donor.
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Becoming a Donor
Organ and tissue donation and transplantation provide a second chance at life for thousands of people each year. You have the opportunity to be one of the individuals who make these miracles happen.
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Use the link below and then select your state to register as an organ, tissue, and eye donor.
Reading this story broke my heart and then I felt hope(for myself and others) again after reading what Hector had to say.. I'm so young and know so little of this disease but the one thing i've learned from this forum is how very lucky i am that i am young and have caught the virus early.. i feel horrible for not understanding some of the heat i caught on here when talking about my chronic pain and all of the poison im putting into my liver.... Here i am young and have great chances with minimal suffering in comparison to those of you who have had to go through this hell and the transplant, and i couldn't understand where the frustration or anger towards me were coming from. well i do now, please forgive me for my ignorance, i would be so grateful to have any knowledge and help that you all are willing to share
On behalf of me, and many others, please tell your husband "Thank You for Your Service."
I am also a military veteran (1977-1981 & 1985-2001). Military veterans are known to have a higher incidence of Hep-C.
I often wonder whether or not my Hep-C resulted from the multitude of vaccinations we received (including Anthrax) that were necessary so we could deploy around the world to fight the wars. In the 70s, I didn't think much about the "assembly line" vaccinations we received as we were getting ready to deploy.
I also often wonder whether or not sharing the razor blade in the military barber shops spread the disease. I recall getting haircuts every few weeks, which included the barber shaving around my ears and shaving the back of my neck with the community razor blade he kept on the counter.
You've probably already thought of this, but just in case you didn't, your husband should consider pursuing a service connected disability.
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