Bratnewton, I'm sorry you find yourself needing to be here--but welcome! There are many supportive and knowledgeable people here, so you will not feel alone any longer.
I was diagnosed with hep C in '93. I tried Interferon twice that first year, but I had very low white counts so was taken off after 4-6 weeks. The only symptoms I had for a long time were extreme fatigue and elevated liver enzymes. Later I developed ascites and edema.
about 2 1/2 years ago, I was diagnosed with a huge cancerous tumor in my liver, which had metastasized to the inferior vena cava. I was getting ultrasounds every year, and this showed up on one of them. I went to Mayo Clinic here in Jacksonville, FL, and they literally saved my life. They first did a chemoembolization and then I was part of a study for TheraSphere, a form of radiation in microscopic beads. These treatments shrunk the metastasized part of the tumor back into the main tumor and shrunk the tumor enough that I could undergo surgery. A year ago in May, I had the rt. lobe of my liver removed. During that surgery, I had a biopsy of the left lobe and was found to have mild cirrhosis. I have remained cancer free since then. I did develop 2 incisional hernias (the first repair didn't hold up) and some drainage problems, but I am doing very well now--finally.
I will go back to Mayo in Sept. for blood work, a CT scan, and a meeting with my hepatologist to discuss hep C treatment. The hep C caused the liver cancer. If the cancer recurs in the left lobe, I will need a transplant.
It sounds like you have been getting the care you need, except for the problem with the primary care physician. If you are not satisfied with the way things go in San Francisco, perhaps you could contact Mayo in Phoenix, AZ. I hear you on the testing. I cannot begin to tell you the number of CT scans and MRIs I've had, plus constant blood work.
I don't have much family, but I think the only one who understands or cares to hear about my illness is my sister in SC. My daughter doesn't want to hear about it and my aunt doesn't really understand the seriousness of the disease. So I especially appreciate having this forum, a place where I KNOW people understand. There are some really wonderful, caring people here.
Again, welcome, and I hope you will post often!
Post Edited (hep93) : 8/3/2008 2:19:58 PM (GMT-6)
I am so glad you have found this site. I am sorry that you have a need for it, but I know how important information can be to coping with everything. And just having others who understand is such a help.
I spent last week dealing with my first ascities "attack". It was miserable. Monday my Dr. removed 1.5 litres. Doesn't seem like much, but at least now I can breathe without pain.
My husband is one of those whose response to the dr. telling us I could live a long time with this or be on the transplant list in 2 or 3 years was He doesn't have to worry about it for 2 or 3 years then. He loves me dearly, and seeing my belly swell up to about 9 months preg. overnight scared him, so much so that he is now increasing his travel time so as not to deal with any of it.
I am also trying to work out Dr. Info. Luckily we have insurance which makes it a lot easier. I have a GE near my home and one at Wash. Univ. St. Louis for big stuff.
Take care of yourself and keep coming back.
Prayers 4 U
Hi, Karen! I'm glad you've had a good day! So have I! I got a spa pedicure and manicure, which I desperately needed. Because of my artificial hips, I can't reach my toes and am not supposed to bring my thigh/knee up more than 90 degrees.
Are you on diuretics ("water pills") ??? I was never drained except when they were replacing drains on me that I'd had initially put in at the time of surgery. I had 2 drains clog up. The 3rd one worked, thank goodness! I'm on Lasix 40 mg and Aldactone 100 mg daily. Sometimes I cut the Lasix to 20 mg when I feel like I'm losing too much weight or getting dehydrated. The docs know I do this and are okay with it. Even when I looked like I was 9 mos. pregnant and weighed more than that, they did not want to drain me. The Mayo docs say there is risk of infection, which is something they try to avoid at all costs.
Going to see my PMD tomorrow for a Pap test. I'll be glad when that's done!
Here's hoping tomorrow will be a good day for you, also!
Klonk/Clare and Candlelight, I just wanted to welcome you both to the forum. I'd like to suggest that you both (individually) start a "new member" or "hello" thread on the Hepatitis forum, so your presence here will not be overlooked. Just tell a bit about what you are dealing with.
Personally, I have hep C (contracted in '68 or '69) that was diagnosed in '93, which caused liver cancer (now cancer-free after treatment and removal of the rt. lobe of liver) and cirrhosis. I've had other medical problems, as well, in the past few years, but am doing quite well now.
Hi Clare and Candlelight. I'm sorry you both have the need for this forum but you have come to the right place. We are all in a similar boat so we support each other. I hope we can give you support as well. Candlelight you have no idea how long I have waited to hear from someone that has had a live liver transplant. My husband has ESLD. He is on the transplant list but his son has started the process to give him part of his liver. I have wanted to talk to someone for so long that has had this. We go to Vanderbilt in Nashville and they have only done 4 live transplants thus far. Many other hospitals have done more. If you have time would you please e-mail me. I would love to ask you questions. Also if there is anything I can answer for you I will be glad to. It sounds like you could probably help a lot of us since you have been through it before. My thoughts are with you.
I'm with LaBunna on the fluid intake. My husband is restricted to 1500ml a day also and is still fighting the fluid problems. He takes 300 ML of Aldactone every morning and still has to be drained every three to four weeks. I think the fluid intake was one of his first restriction dealing with this disease.
I'm sorry I forgot to welcome you. The people in this forum are wonderful. I know you will find a wealth of information here as I have.