I couldn't get a second opinion during tx.. What are your experiences with this?

I go to the VA Hospital. I've found that it isn't easy for me to get advice from a second doctor. I live in New Haven, CT. A friend of mine got me the name of a big heptologist (liver doctor) in New Haven. I phoned the doctor's office, the receptionist third question was about my insurance. I told her I didn't have insurance, that I was being treated at the VA Hospital and just wanted a second opinion, and that I could pay with my own money for the doctor's visit. She told me to go to a free clinic and got me off the phone as fast as possible.

I tried to email my question to Dr. Dieterich, but got no reply. I rewrote and shortened my question and emailed Dr. Dieterich again and still got no answer.

I went to the head doctor in the liver clinic at the VA Hospital. I showed her a printout I got on a web site about Neupogen. I asked the doctor if I could get Neupogen. She said they would use it if I needed it. Later, at my regular doctor's visit, I told my doctor that the head doctor had said I could get Neupogen. My doctor said that the head doctor was now away on vacation in Europe. They continued to cut my Pegasys dose until finally at week 12 I was given a new doctor at the VA. I asked my new doctor for Neupogen, and he called the pharmacy right away and got it for me. After that I was able to go to full dose of Peg.

I asked at the VA Hospital if I should extend my treatment. They said I didn't need to extend because I got 80% of my meds 80% of the time. I was undetectable at 12 weeks; they said was the important thing. I've finished my 48 weeks and hope for SVR.
Bob

[NYgirl]

I can see why you'd want to extend.  I am trying to type civilly here but there are SO MANY curses floating in my head at how you were treated you might have to bear with me.  I mean it.

I don't remember which GT you were, but assuming you were UND at 12 and are UND now (which is how long after tx stopped I just can't remember sadly) I guess CLEAR is CLEAR is CLEAR right?

Why isn't anything cut and dry with this stuff? It sounds so SIMPLE when you start.

I'm sorry I don't have any advice but after reading what you've been through reaLly just wanted to offer some encouragement and that would be...you are clear...and you are going to stay that way.  I don't necessarily believe that extra time makes a difference - just my personal opinion. When it is DEAD it is DEAD and that is the end of that!

:)

[doglover28]

I am so sorry to hear how rude the person at the doctor's office was on the phone.  You might want to call the office manager.  The primary care practice that I go to had a problem a couple of years ago with employees being rude to the patients. They even posted a notice where the sign it sheet was stating to inform the nurses or doctors if anyone was disresepctful.

[jmjm530]

That's terrible. I'd call back that doctor's office and ask to speak to the office manager, nurse, or doctor himself. You have every right to be seen. Sounds like sort of no-insurance/vet  discrimination to me and I wouldn't be afraid to use that word.

As to Dieterich, last time I checked he no longer is on the "The Body" web site and that may be why you didn't get a reply. If you want to see him, why don't you simply call his office and make an appointment? Another excellent doctor in the New York area is Dr. Ira Jacobson, and I believe NY Girl is going to get a second opnion from him. Sometimes you have to be nicely agressive/persistent to get in sooner than their busy callendar allows. The person who answers the phone generally cannot slip you in earlier, so often you have to speak to the office manager or nurse and have your situation relayed to the doctor who can make the decision. The fact that you're currently on treatment and need a consultation ASAP should suffice. Good luck!

-- Jim

[friole]

That is scary.  What does the government do - threaten independent doctors?  I can't believe they can turn you down and wonder if you can file with the medical board -- not that that will help here.

Moniker, since you were clear at 12 weeks, I am wondering if anyone will extend your treatment.  That 12 week marker is a biggie -- but, doesn't the VA use those antiquated <600 PCR's?  What was the sensitivity of your final PCR?  Is there any way you can get a regular doctor to order one if the VA will not?   I would think there would be more comfort level in knowing you are clear at this point to a very low number.

Rather than Dr. Dietrich, you might want to email Dr. Cecil who works a lot with vets.

http://www.hepatitisdoctor.com/

frijole

[Moniker]

Thanks everyone. Actually, I finished treatment one week ago. I did 48 weeks. The VA uses <50 PCR, and I was undetectable at 12 weeks with <50 PCR. I was undetectable at 24 weeks too. I'll get my first post tx PCR test in three more weeks - that will be one month after finishing treatment.  

Really, the VA has done a lot for me, and has a lot of experience with hep c. I think I got good treatment at the VA. I'm not complaining at all about the VA Hospital. I'm complaing about doctors in general.

A friend of mine, who has good health insurance, told me about his experience at Yale New Haven Hospital. One day, my friend felt that he was having a heart attack. He drove himself to Yale New Haven Hospital and went to the emergency room. He waited a long time and then they told him to go home and take an aspirin. He went home, felt sicker and drove himself to the VA Hospital in West Haven (the same hospital I go to). He went to the VA emergency room, said he thought he was having a heart attack, and right away they put him on a machine and found that he was having a heart attack. They checked him right into the VA Hospital and treated him. The VA hospital in West Haven is a good hospital.

My mother used an HMO. My mother got sick, and her HMO resisted giving her an MRI. My mother died of a brain tumor which might have found sooner if her HMO hadn't been so reluctant to pay for the MRI. They wanted to save money more than they wanted to save my mother.

It's just our health system in general which makes me mad.
Bob

[NYgirl]

Oh I'd say that even my insurance company which is awesome wouldn't most likely approve you to do more treatment.  I am going to have to do 72 BUT I have two separate strains (1A and 1B), I was not clear at 12 but was at 24.

Since you have been clear for so long honestly I can't see any reason why you would really WANT to do longer.  You've been clear a very long time and were on full dose for a good period after that right?

I would go on with my life and enjoy my SVR my friend. :)  Be positive and keep saying I am SVR for a year then say I was cured for good of hepC and be HAPPY~

[Moniker]

Thanks a lot nygirl. Good thoughts! Thank you!
Bob

[Mister beagle bailey]

Sorry you had to go through this but NYgirl is right.  You've been undetectable for so long that I wouldn't worry at this point. However, that new Dr. they gave you at the VA sounds like she knows what she's doing and got you what you needed to finish tx at full dose, so if you need to see a dr see her.
Please enjoy your life now as your on your way to SVR. :)

Beagle

[jmjm530]

Not sure, but I think it's academic about extending treatment, if you are to miss one peg shot at this point. In other words, extended treatment to be most effective should have no interruption of peg shots or riba. So, if you think you want to go that route, I'd move pretty fast if you're still inbetween shots.

Usual protocol is 48 weeks if clear at week 12, however, my doc did extend my treatment to 54 weeks based on age (59) and histology (stage 3). Two other hepatologists said 48 weeks was enough based on my week 6 non-detectible TMA. I went with 54 weeks and no insurance issues. BTW, since Dr. Cecil's name has been mentioned -- my understanding is that Dr. Cecil would treat a geno 1, stage 3 for two years.

-- Jim

[jmjm530]

Kalio says: f the patient doesn't like the doctor's policy of not accepting insurance they are free to choose another doctor.
-----------------------
I agree but I think Buzz is saying something different. What he appears to be saying is that if someone has medical insurance, then this doctor will not accept them as a patient, even as a private pay. That limits his practice only to people who have never signed up for medical insurance. Maybe I'm not getting something. Dunno.

[jmjm530]

Could be wrong, or maybe you're saying the same thing,  but I believe what the doc means is that they don't TAKE insurance, not that they won't take patients who have insurance.  I'm pretty sure if you call up and when the insurance issue comes up, simply say you will pay privately, they'll book your appointment. Then, if your insurance has out of network coverage, you can submit his bill (with diagnosis) code to your insurance company.

-- Jim

[buzz01]

Nope, the Doc I'm referring to will NOT take anyone who has insurance regardless of whether you want to pay privately.  I know it sounds odd but that's his thing. I myself would think as a Doc, one would want to help all, but this guy is focused on those who don't have insurance.

[buzz01]

jmjm530, you're correct. He will not take on a patient if they have medical insurance, even as a private pay. He will only treat patients who do not have health insurance.

I know, sounds so weird but that's his focus. Also, I remembered his name, it's Dr. Jack Ross.

Too bad, I've heard so many great things about him.

[jmjm530]

Assuming he really doesn't take anyone with insurance, unless he's subsidizing his patients tx drugs, that would mean that his patients have to fork out -- what did we estimate a year's worth of meds, rescue drugs and visits cost -- like $100,000 to treat. The other point being don't most people who can afford insurance have medical insurance? So, who does that leave him to treat :) Something sounds wrong here.

[buzz01]

Kalio1, excellent point of view and it's probably dead on.

jmjm530, I know it sounds weird, but I believe he receives grants...Patients do not pay to see him...I'm unsure if they receive free meds thru him or another way. From what I've been told by my friend who knows him, he's an excellent man, doctor and is very caring. His focus is HCV. I'll have to find out more and post back. :)

[buzz01]

Moniker,
I'm in CT too. I can understand your frustration but the great news is you cleared at week 12...that's HUGE!  Also, congrats on finishing. I'm currently on week 39.

Reason why I'm posting. I heard of a top notch doctor affiliated with Hartford Hospital who will only see patients without insurance. I wanted to see him so bad, and know a friend who knows him, but GD, he still wouldn't see me. Apparently the guy is just awesome. I forget the name right now, but can easily find out if you want...just post back here and then I'll make a call and get the name.

PS, I have plenty of Yale stories too but will hold off for sake of my own sanity right now....lol

[dog_lover]

What I would do is get a referral from an Internist (Outside the VA system if you have one or can obtain one) for the liver specialist and when they ask you about insurance don't mention the VA, just say that you don't have insurance, you are not lying.  I use the VA in Portland, Oregon and the ***** I have is their system of doing everything by teams.  Not only do I have to meet the disease criteria for treatment but I have to pass muster with a mental health. I had a series of personal crisis in the last two years that make me ... well ... suffice it to say, depressed as hell. Bottom line they won't treat until I get through the depression.  Hope this helps, I kept an "outside" Internist when I lost my insurance from my last scan. She is the absolute best and is about to refer me for a second opinion on my Interferon treatments.
Peace
Dog_Lover

[stangshelly]

make your appointment and when asking if you have ins. say yes. you do and after you see the doc. when checking out just pay cash or say bill ins. all will end up billing you. it is your patient right to seek a second opinion and if they refuse just mention discrimination and a lawyer and you'll be seen. don't offer more info. they have to see you by law. if you need to fill out paper work put in your va ins primary and say you forgot your card for secondary ...play dumb..