Duke has financial assistance. If you have no insurance, Duke will work with you and, depending on your income, you can get financial assistance. My friend goes to Duke for her medical care and she pays on a sliding scale. I know she does not pay much because she does not make much.
You really do not have to 'suffer' though a biopsy. They are easy.
Not knowing the health of one's liver seems to me to be harder than any liver biopsy I've ever had. Really and truly.
As far as when they new meds will be available, nobody knows for sure when they will be approved. Let's hope for 2014 but unless you have are a fortune teller, it's anybody's guess.
Thanks, I have since heard that 2014 may indeed, bring something new and better in the way of tx. Also since posting yesterday I managed to telephone Duke Medical Center and secure a referral to their hepatitis 'division' and will be heading there in October. I figure I surely will have to suffer through that biopsy and hang on til the new drugs get here or even sign up for a trial.
Well, I should say I will do what the doctor orders provided he isn't like the one I found two days ago that said he had to shine a light up my hind end. I think Duke may be one of the best though. The gastro oufit did say there was no big hurry now.
Take care all of you and thanks for reading this.
treatment twice. had no hepatolist in the area. wish there was one. a oncologist supervised treatments. good luck.
Hi. I saw my kidney specialist Monday. My kidney problem has progressed a bit since last year (was 51% functional, now I'm at 47). She took me off my currant medication for my high blood pressure because of problems. She put me on a different one. I have to see her in a month with more blood work results.
I also went to Miami transplant center to see better doctor. He was very nice and informative. He did not rush me out the door. I was so bent out of shape that I had to have my friend take notes for me. The good news is I don't need a transplant as of now, however because of my kidney problem, there might be a problem concerning treatment. He strongly suggested that I do a clinical trial, so when one comes around they will let me know. He also talked about the new treatment coming out in January. If I wait for that, I think he said I might be able to clear up the virus. But as far as the cirrhosis goes, it is not going to get any better and I must take care of myself by diet and excerise etc. He told me a lot of foods to stay away from. He aslo said because because I am genotype 2 b, I am not eligible for some kind of treatment ( I don't remember everything). I might have mixed up a few things. He mentioned sobisar and something about side effects not being bad in the new treatment. I don't know what I am talking about. I have to see him again on October 7th for more testing, and have to have blood work done 1 week prior to visit. There is so much to remember, I hope I can do it. Thank god I have a few good people willing to help me. I did ask him how fast the cirrhosis can progress, and he really cant answer that. Hopefullly not soon. I guess I just have to do the best I can with understanding as much as possible as I go along. I hope everyone else can see this post, because some people asked me to let them know what's happening. I am too tired to repeat it. Well thanks for listening. I hope you all are well, One day at a time.
I think an eye exam is a sound idea if you're treating with interferon. Retinal damage is associated with that drug - I just saw an article yesterday on that issue but I don't have it here. I suffered 2 retinal tears while treating.
I did treatment twice and never was it required that I have an eye exam,psych exam, and colonoscopy prior to treatment.
It is understandable to want a biopsy to know exactly how the health of your liver.
If you have little or no fibrosis, you might choose to wait to do treatment until the new better meds which are currently in clinical trial become available.
Also, without insurance, you might consider to enter a trial as they would cover your costs.
Good luck.
Fast reply, this is what I like. Thanks!
Reading yours and Hector's I do realize I must go far away to find a hepatologist and that is what I will do. I am going to try TCM (Cathay has promising results in the literature and can be found on the US Dept of Veterans Affairs site in the hep c pages) in the meantime.
I am going to keep up with this community here and hope all of us can continue to help one another as we can. You all have helped me already in the first hour. Best of all to you, Lili
Hector,
I feel fortunate to have found this site earlier today and I am grateful for your advice. I live in outside of Jacksonville NC and it seems gastroents. are the 'way to go' in these matters. A search for hepatologists leads to gastroenterologists that treat hepatitis. Yikes! I realize I will have to go as far as Raleigh or Charlotte (as soon as I post this I will google).
Re. your 3rd paragraph, oh absolutely. I know I might be in a real leaky boat and at this stage have no way of knowing. I certainly see why a biopsy might be ordered straightaway.
You can see the profitable circular pattern of referring some of these 'specialists' seem to be taking part in: gastro > eye dr. > psychiatrist > colonoscopy > gastro for hepatitis - a real racket.
Hector, I am going to look for the hepatologist and figure on a biopsy and interferon/riba therapy will probably be on the horizon. Yesterday at the gastro's they said there is no hurry for the tx and to go ahead and do all I want to get done travel wise etc. before commencing (b/c of the side efx). They scheduled me for a follow up in 3 mos. I was considering doing the Cathay Herbal TCM (found it within the US Dept of Veterans Affairs site in the hepatitis pages) treatment til then unless I find the hepatologist sooner.
I hope to hear from you again. I also hope that whatever posts I can contribute to or make here can have a use and help other folks someway somehow. The powers that be have been very good to me and I want to pass it along if possible. Lili
Whether a person needs a hepatologist (liver disease specialist) or gastroenterologist (specializes in diseases of the gastrointestinal tract) depends on many factors including availability, stage of liver disease, and co-existing medical issues and well as the knowledge and experience of the gastroenterologist with hepatitis C and its treatment.
"I was recently diagnosed and have been asymptomatic apart from fatigue. I am at a correct weight, primarily vegetarian, have never smoked or drank alcohol, and until about 3 months ago I engaged in intense cardio training 6 times a week at my gym."
Having all of these factors doesn't exclude you from having early cirrhosis and could lead to complications during hepatitis C treatment with the current available treatments. (Low platelet counts, anemia, neutropenia, depression, etc.) So a hepatologist who is experienced treating cirrhotics can be an advantage. This is one of the reasons why a biopsy is so important to have before starting treatment. To assess the stage of liver disease.
For those with early liver disease and are generally healthy a HCV knowledgeable and experienced gastroenterologist can be adequate. The amount of expertise needed is largely dependent on how difficult treatment may be for an individual based on multiple factors.
Hector
And BTW, welcome to the forum
It is always better to seek out a hepatologist when possible as they are dealing with this on a daily basis. While I agree with the eye exam the other two I see no reasons for.... I have treated twice, the last time was in a trial and even they did not require the last two.
There is enough costs involved in treating and adding to them doesn't help. Wishing you the best.