Aa
New dc. doesn't want to treat me
Hi everyone, a brief update first. I have stage 4 geno 2 treated 24 weeks and relap 6 month post. Doctor said to reteat for 48 wk on same treatment. Said to take a couple months to prepare. I go back ready to start and find out the doctor has walked out and they are not treating anymore at the teaching hsp. I have no insurance and it was the perfect place because thats all he did was treat hep c. They are refering everyone to a GI private practice. I called every clinic around no one is treating hep c. My pcp is at another clinic and they don't treat. So I decide to just fork out the money and see this private pactice GI. He did not want to treat me. He has never treated anyone with cirrhosis and wanted to take a wait and see the new drugs. I said I need to be on treatment I have no options. At the very least I should be on maintance. He said the maintance has not been approved. He also reduces dosage instead of perscibe rescue drugs. I almost had to beg for him to treat me. He said if I get a EGD with possible rubber band ligation done at the hosp. and get a new viral load done, and sign a release of liability saying he warned me. he would do it. That cost me $150. just to hear that. If I have to shop around It could cost a small fortune just to hear them say they don't want to treat me. There are no Hepatolgist around here.
I am just so up set what am I to do. It is so easy to say get another doctor, but how do I know which doctors will take me without having to fork out the money just to get turned down.
He is willing, should I go for it?
I am just so up set what am I to do. It is so easy to say get another doctor, but how do I know which doctors will take me without having to fork out the money just to get turned down.
He is willing, should I go for it?
Continued: Also I wanted to know if anyone has had this rubberband procedure and how does it work? I just don't know what to do. I really wished I could find another dr. Anyone from Tulsa out there that has a good Doctor?
Sorry about your difficulties. A quick "google" of Tulsa's Yellow Pages comes up with only one listing: http://tinyurl.com/hs95e
If that doesn't work out, sounds like you may have to travel outside your geographic area for at least an intial consultation. Then maybe you can work something out where you see the specialist maybe once every three months and the rest of the time coordinate with your local PCP.
As a stage 4, relapser, I'd want to be seen by a liver specialist (hepatologist) at a larger, teaching hospital where they have the needed expertise and scope of experience.
As to whether or not they will take you, try and get as much information on the phone, including if they are accepting new patients and how they would work with you given your lack of insurance. Some of these places have clinics or may be running trials. Sometimes faxing over a brief treatment history, including recent blood labs, biopsy report, etc, is helpful. If you want, you might even have your PCP contact the doctor after you've done some leg work.
All the best moving forward.
-- Jim
If that doesn't work out, sounds like you may have to travel outside your geographic area for at least an intial consultation. Then maybe you can work something out where you see the specialist maybe once every three months and the rest of the time coordinate with your local PCP.
As a stage 4, relapser, I'd want to be seen by a liver specialist (hepatologist) at a larger, teaching hospital where they have the needed expertise and scope of experience.
As to whether or not they will take you, try and get as much information on the phone, including if they are accepting new patients and how they would work with you given your lack of insurance. Some of these places have clinics or may be running trials. Sometimes faxing over a brief treatment history, including recent blood labs, biopsy report, etc, is helpful. If you want, you might even have your PCP contact the doctor after you've done some leg work.
All the best moving forward.
-- Jim
I have all the info & links for all the drugs and labwork for free meds/rescue drugs etc. if you need them. Liberal ceiling on income levels. I'm uninsured as well but it sounds like finding a dr. is your biggest problem right now. I wish i could help but if you need the links let me know. good luck to you. tracy
Here in Tucson the only way you can see a Hep-c liver doctor is to be refered by another doctor. I called around one day and from what I could understand Hep-c people take up a lot of time and doctors don't want to deal with it.
Ron
Ron
Here's a list of Hepc doctors in Tulsa. Don't know if you've tried 'em all or not...they are all private practice. I see a pp doc, and other than paying for his visits ($60-80 every 3 months or so) there are options to help w/ expenses. :) good luck once again. tracy
sorry i forgot to add that maybe you could ask over the phone when calling if that particular dr. treats cirrhotic relapsers or not? and avoid a consultation fee.?...It seems they'd be able to tell you upfront wether or not you're wasting your time and money..
DUH! here's the list of GI's in tulsa...(thanks brian..)LOL
http://hepatitis-central.com/hcv/drs/ok/tulsa.html
http://hepatitis-central.com/hcv/drs/ok/tulsa.html
Sorry you've run into trouble. That EGD deal is something you want. They will look for varicies (viens that have rerouted to where they don't belong due to cirrhosis). If they find them, they will shut them down with a rubber band. You don't want to ignore that.
As understand it, it used to be that cirrhotics were not offered treatment. Then they were, but only at larger (level 1? )facilities like trnsplant centers. I would be reluctant to treat with the GI who seems to have cold feet. That dude ain't going to be aggressive, I can tell you that from here.
One path that hasn't been mentioned is to email some high falooting (sp) hepatologists and see if they will recommend anyone closer. Or maybe find one out of the immediate area who will treat in conjunction with your PCP?
What a pain, and a burden of unneeded stress. Good luck to you.
As understand it, it used to be that cirrhotics were not offered treatment. Then they were, but only at larger (level 1? )facilities like trnsplant centers. I would be reluctant to treat with the GI who seems to have cold feet. That dude ain't going to be aggressive, I can tell you that from here.
One path that hasn't been mentioned is to email some high falooting (sp) hepatologists and see if they will recommend anyone closer. Or maybe find one out of the immediate area who will treat in conjunction with your PCP?
What a pain, and a burden of unneeded stress. Good luck to you.
Thanks everyone for the info. I am going to get on the phone tomorrow and start calling. I do feel better now.
That positive attitude beats the heck out of that worried attitude , doesn't it.
Ring every telephone in Tulsa if you have to. "Somebody" will be able to direct you to the right resources. We have to take control of our disease and tx because they obviously not going to do it for us.
Good deal , I'll watch for your posts in the upcoming days/weeks ahead.
Mark
Ring every telephone in Tulsa if you have to. "Somebody" will be able to direct you to the right resources. We have to take control of our disease and tx because they obviously not going to do it for us.
Good deal , I'll watch for your posts in the upcoming days/weeks ahead.
Mark
There are some studies taking non responders now. I hope you can find one. Best of luck to you.
I had to travel 200 miles away to get a doctor to treat me after my liver failed due to the burst varicies and massive bleed.
That was 200miles each way, over a mountain range. (the Cascades)
I suggest you widen your range and see whats available w/in a days drive. We did the round trip in a day-one long day. I always got my appointment for 11:30am b/c thry always see everyone in the waiting rm before lunch. I would walk in, have my tests and walk out, often before my partner found parking, and drive right back home.
That was 200miles each way, over a mountain range. (the Cascades)
I suggest you widen your range and see whats available w/in a days drive. We did the round trip in a day-one long day. I always got my appointment for 11:30am b/c thry always see everyone in the waiting rm before lunch. I would walk in, have my tests and walk out, often before my partner found parking, and drive right back home.
Have an Answer?
You are reading content posted in the Hepatitis C Community
Learn about this treatable virus.
Getting tested for this viral infection.
3 key steps to getting on treatment.
4 steps to getting on therapy.
What you need to know about Hep C drugs.
How the drugs might affect you.
These tips may up your chances of a cure.
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
