Wayne and Cindy, welcome to the forum! I agree completely with what PinkGrandma has said. I was diagnosed with hep C in '93 and treatments at that time did not work for me--actually had to quit before they had a chance, due to very low white counts. At any rate, I developed cirrhosis and liver cancer--but I'm still here at age 65. I lost most of my liver to save my life, but have never been bad enough to need a transplant. I went to Mayo Jacksonville for my care (still do.)
It sounds as though your hep B was thrown off by your own immune system, though you will still test positive for B. I had the same experience. As you said, your wife was not so lucky.
Chapel Hill is excellent. Does your wife have insurance? If not, she may be able to get Medicaid now, and I suggest she file again for SSI/SSD, based on recent developments. I'm fairly certain that Medicaid will pay for a transplant.
You will get a lot of info and support here. So please continue to post and let us know how things are going, or if you have any questions that we may be able to answer.
If you mean give up - never! A transplant can be a fresh start to several years of happy healthy living! Never give up!
Wayne and Cindy,
I hope you don't give up. My mom was just diagnosed with cirrhosis. I would be devastated if she gave up. Even if it were only a few years after a transplant, it seems worth it to have your mom around.
Wayne, I am not familiar with the abbreviation DD. What does it mean? I only know of SSI and SSD, the latter being what one gets if disabled based on work record.
Please do not give up on your wife! She is still young from where I stand. Yes, there will be a lot of red tape and ups and downs on the transplant list, but isn't her life worth it? There are no guarantees in life, but at least give her the chance to live longer than she would otherwise.
Wayne and Cindy
Please don't give up. My husband was just listed in March at Vanderbilt. He turned 59 that same month. His Dr. at Vanderbilt told us he is still very young. Your wife is younger then he is. NEVER give up. Also we met someone at one of our appointments that got his new liver 20 yrs ago. He told us to "Do every thing they tell you" and you will be fine. They didn't know as much then as they do now. You two still have so much living to do. Also the transplant centers have financial department and they did all the paper work for us. We didn't have to do any of that. So go for it!!
My husband was drained as often as needed. By that I mean if he was hurting or couldn' breath. It took a year for them to get his meds right. He hasn't been drained now since May. All of last year her was being drained one to two times week. I hope that helps you. I'm sure everyone is different but just do with the dr. say and make sure you have a liver specialist. Keep up with all her blood work and learn about it. I'm sure it won't be hard for you because you are in the business. Hope this helps. And trust me you will get tougher!!!
Wayne, is she also on Lasix? Aldactone is also a mild diuretic, but mainly used to balance the potassium lost from Lasix. If she is only on Aldactone, I think I would question that...and ask about Lasix, as well. I had terrible ascites and edema, but never had paracentesis. At times, I had "weeping" of fluid from my calves. My breathing didn't get bad, and the doctors didn't seem as concerned about the fluid as I was. It hurt my feet and calves something awful, so I would get someone to massage the fluid upwards and that would give me some temporary relief. I have been on 80 mg of Lasix and 200 of Aldactone at the worst...but now am doing fine on 40 (and sometimes 20) and 100.
Post Edited (hep93) : 11/8/2008 2:22:28 PM (GMT-7)