Medical Forum / Diseases and Disorders / Hepatitis / April 2007
looking for a doctor...
|
|
Thread rating:  |
Sick Boy - 19 Mar 2007 04:04 GMT Hi guys,
I posted here a few days ago for a first time. I've become quite convinced that I should do this treatment thing, and do it soon--partly because I'll be left without any insurance early next year...I'll lose my Medicaid since I have a job now that will make me ineligible, and at the same time I don't work enough hours to qualify for insurance on the job.
That aside, I am busy with the impossibly difficult task now of looking for the doctor who'd be in charge of my treatment. I have Medicaid that's linked to AmeriChoice (a private, shitty program)...but I did some research, and I can link my Medicaid to another, hopefully slightly less shitty program, instead. Also, AmeriChoice doesn't cover Manhattan, and there are certain negative aspects associated with pracising medicine in Brooklyn. Manhattan is full of GI and Hepatologist guys. I did some research, and I learned that if I switch to HIP program with my Medicaid, then I'll have access to quite a lot of specialists.
I was a bit overwhelmed by the large list, but I did find some names that I'll try to research further...for example, David Feldman, a GI from St. Vincent's hospital. Apparently, he's a HCV specialist and also a big shot, giving speeches and writing articles. Anyway, he was in the network of physicians of the insurance plan that I think I'll switch to.
However, in case it doesn't work out with that doctor, or I can't get him to treat me--how do I find a good GI/Hepatologist, especially when I have many options, as there are many of them in NYC? I can't just make an appointment with a dozen of random Dr's and ask them a list of questions. Is there anyone out here who can actually recommend me docs in NYC? (and do you think I should try to get treated by this Feldman guy?)
I got a bit of hope when I got told here that my case is an easy one, and was explained that I'm at an advantage, having g3a and for only 7 years, etc., relative to many others or myself several years down the road. I'm trying to get it done this year--preferably, start it soon so that I spend as much time as possible feeling shitty during May-September, the warm months (or maybe even begin in April, if I'm lucky). As I said, I'll probably be without insurance next year, so it's also a big factor. Also, since I'm a NYS resident, my insurance won't cover an out-of-state doctor...sigh.
So, if you can suggest any NYC-based doctors, or refer to a forum/thread where people discuss their liver docs based on a region, that would be great...I know how stupid that sounds. But, I truly don't know where to begin--don't even know what I'd ask the doc, for f.ck's sake--and ANY help would be much appreciated. I guess I should change my network for the one that seems much better, for now, but then what? Any comments, suggestions? Thanks...
 Signature Sick Boy
Sick Boy - 19 Mar 2007 04:39 GMT P.S. I can't believe it, but I saw the name of Douglas Dieterich on the list of providers, as well...last time I met him was in 2003, when I had my viral loads checked at the hospital he works at. He recommended me the treatment, but I refused back then. After that, I was saddled with AmeriChoice, and he didn't take it...but he takes HIP with the Medicaid, and I'm planning to switch to it now. He's been highly recommended to me, but seemed a bit hurried and short on time. Still, I just read an article (and old one, it seems) where he's claimed to be managing anemia with some other drug, not by reducing interferon.
Anyone heard about him? I am quite sure he's very competent and experienced, but I don't know if he'd have time for me personally to discuss various aspect of treatment. True, he has many assistants and very professional and warm nurses, but I have a feeling I'd not see him much. I keep telling myself that it's better to trust a pro and if I have a problem, then make sure he addresses it--at expense of a more personal relationship with a liver doc who may or may not be great. Arrggggghhhhhhh, this is bloody torture! Please, any opinions!
 Signature Sick Boy
dort - 21 Mar 2007 04:04 GMT > Hi guys, > [quoted text clipped - 48 lines] > change my network for the one that seems much better, for now, but > then what? Any comments, suggestions? Thanks... Hey SB...
Grey addressed this aspect of selecting a doctor. From what I read here is sounds like your gut...(no pun intended)... is telling you to check this guy out again. Pay close attention to his staff, since more than likely they will be seeing you on most of your visits. Make sure you feel comfortable with them to address all of your concerns and that they are responsive and willing to help with everything that comes down the line. If this guy is good he'll get you through it and his staff will monitor everything between yourself and what he needs to be made aware of. Make any sense?
The important thing here is not to panic. You are entering unfamiliar territory but there are many here to help you along. It's scary as hell, but you are doing good homework and are becoming well informed. That's the key, educate yourself as much as possible and get 'er done.
We'll all be here for you when you need us. Just make the appointment and go see this guy and get the ball rolling. Once you do, I am sure you will find things fall into place.
I sure hope this helped. It sucks trying to find a caring provider when you don't have people in your area that can recommend one. Good luck and keep posting...most important..relax!
dort
Gordo Mondragon - 21 Mar 2007 16:13 GMT [...]
Is there an Edward Goldberg on your list on E 79th St?
Sick Boy - 31 Mar 2007 04:53 GMT >Is there an Edward Goldberg on your list on E 79th St? Sorry, I just checked in...no, this Dr isn't in my plane. Thanks.
I'm still undecided about it. I'm working now, so my Medicaid/HIP will not be renewed for 2008, in all likelihood. I'll get my new insurance card soon, and hopefully get an appt. with my PCP in the first week or two of April. However, the liver doctor that I'm thinking about to treat me, Dr. Douglas Dieterich, is a renown specialist, and I'm afraid I'll have to wait for my appointments, and besides, he won't really have enough time to dedicate to my treatment (and it's not like I'm really a pain in the arse, wasting doctors' time...I just want not to be rushed out of the room after 5 minutes). He teaches, lectures, works at 2 or 3 hospitals...very little time for actual patients at the office.
And again, there's this question of my insurance, like a sword over my head...I've 3a genotype (last time I checked, at least), and I've been told that biopsy isn't really necessary to optimise my treatment regiment. That would save me a lot of time and anxiety, if I didn't have to go through it. Same goes for length of treatment...I'm not sure if I should contradict my future liver Dr. on this, but some Docs like to do the full 9 months regardless of a genotype, I've been told. Any opinions on this? (btw, I haven't forgotten the answers to the questions I've already asked, but if some of my questions seem to overlap, it's for reasons of posting coherency, etc.)
I would take more time, and possibly wouldn't really worry about biopsy (or even length of treatment) that much, if I didn't have my insurance cut off in January of next year, I'm pretty sure. However, that is an important aspect I cannot ignore...nor can I postpone it until some day I'll have a full-time job with health insurance. I'm working P/T...no benefits, can't qualify for Medicaid, either. For this year, they still renewed it.
Err...this is turning long, so these are the key points: a) The only HepC Dr. I've been recommended is an excellent specialist, but he's REALLY lacking in time he can dedicate to the patients in his practice. He does have a good team of nurses and Phys. Assistants (or whoever those white-robed people with him were). Any opinions on this situation? b) Insurance will be likely cut off in January next year. I've HCV, G3a, have had since 2000. Concerned that biopsy will take up extra time, besides other issues. Is biopsy recommended for a better-tailored Tx, in my case? c) Same for length of treatment. Is it normal for G3's to do it over 6 months? Or should I just let the liver Dr. decide, and sort it out later? (again, the bloody insurance issue) d) Any Brooklyn/Manhattan-located doctors that anyone can recommend?
Thanks a lot.
 Signature Sick Boy
greyhackles - 31 Mar 2007 14:17 GMT >>Is there an Edward Goldberg on your list on E 79th St? > [quoted text clipped - 37 lines] >whoever those white-robed people with him were). Any opinions on this >situation? It's pretty typical for a patient to see the doc only a few times through the course of therapy. The PAs are the key, they are the ones you'll see, they are the ones that will consult with the doc if problems arise. Having an excellent specialist backing them up is a major plus.
>b) Insurance will be likely cut off in January next year. I've HCV, >G3a, have had since 2000. Concerned that biopsy will take up extra >time, besides other issues. Is biopsy recommended for a >better-tailored Tx, in my case? G2 and G3 tx-naive patients don't really need a biopsy to embark on treatment. Folks who are considering *not* doing therapy may need a biopsy.
>c) Same for length of treatment. Is it normal for G3's to do it over 6 >months? Or should I just let the liver Dr. decide, and sort it out >later? (again, the bloody insurance issue) No, this isn't normal. G2/G3 first-timers do 24 weeks of therapy. I haven't read or heard of anyone doing more on their first go.
>d) Any Brooklyn/Manhattan-located doctors that anyone can recommend? That one I can't help you with...
Cheers
/greyhackles
Sick Boy - 31 Mar 2007 23:46 GMT Thanks a lot--again--that really took a weight off my shoulders. I hope to get started ASAP. Knowledge is power! SB
>>Err...this is turning long, so these are the key points: >>a) The only HepC Dr. I've been recommended is an excellent specialist, [quoted text clipped - 30 lines] > >/greyhackles
 Signature Sick Boy
Sick Boy - 03 Apr 2007 02:14 GMT >Hey SB... > [quoted text clipped - 21 lines] > >dort Thanks for your suggestions, mate...thank you everyone who responded, especially Grey--I really can't overestimate how much you've inspired and supported me to not deviate from the chosen path and do this thing ASAP (before my insurance is discontinued).
Some news...tomorrow, I'll see my PCP, and ask for a referral. The doctor I've talked about before, Douglas Dieterich, the world-renown hepatologist...I'm not going to go to him. I called his office, and I can't even get an appointment earlier than May...totally booked. Since time is a very important issue for me, I decided it's not a good idea to have him treat me--and besides, it's virtually impossible to get him on the phone, even if he's in the office. As good as they say he is...well, I'd rather have a more personal Dr who'd remember me and pay some attention to my Tx.
So...I was recommended two doctors who work for Beth Israel hospital in NYC, Dr. Albert Min and Dr. Douglas Meyer. They teach as well, under renown liver specialist Henry Bodenheimer. Min specialises in treatment of Hep B and C, and is involved in clinical trials that have to do with these two. Meyer is also treating HepC patients; at school, he is "Medical Director of Liver Transplant", and his specialty at the grad school is "Liver Transplant, Chronic Liver Diseases", while Min is "Director of Hepatitis Research", working on "Hepatitis B, Hepatitis C, Hepatocellular Carcinoma, Liver Transplant".
I've been told that both of them are really excellent doctors, both treat HepC. I spoke to the secretaries of each Dr (they are colleagues, teaching together and seeing patients in the same office). I was able to make appointment early next week. Both secretaries were nice, informative, and empathic, despite my stupid questions.
I've a difficult choice to make, as both docs seem to be very knowledgeable and experienced in the area, although I tend to lean toward Dr. Min (Hep B and C is one of his specialties, although Meyer is also an expert in the area). Oh well...it's a great weight off my shoulder, knowing that I can trust whichever Dr I choose to treat me, and not worry about not being able to reach him in an emergency, or something.
(Btw, something that gave me pause...Dr. Min's secretary, after my question about how long it would take to get me started on Tx, said they'd have necessary test results back within a week or two...and then she mentioned something about endo- and colonoscopy. I hope she didn't mean that I'd have to go through that before starting the Tx...do doctors do that, at all? I mean, shove tubes in all your holes, before treating you for HCV?)
Unfortunately, I could only speak to the secretaries. But then, I realised that I don't really know what to ask the doctor. I mean, besides the questions about his approach to treatment in my case (genotype 3a, has had for 7 years)--does he think biopsy is necessary, and is 6 months enough. As usual, I welcome any ideas and suggestions about what kinds of questions (specific and general) I should ask my liver doctor-to-be.
I'll try to find any articles--maybe on PubMed, or something--by the doctors. Dammit, they're both considered to be great experts in the area, so it's a bit difficult to choose. But, I must do it before tomorrow noon, when I get that referral. I curse myself for having waited when I didn't have to worry about my insurance expiring, but...
I would like to hear some suggestions about what to ask the doctor on my first visit.
Another thing...for the fatigue/lack of energy effect of the meds, is a stimulant like Dexedrine (or perhaps Provigil) indicated? If I can talk my PCP or the liver doctor into writing for something like that, of course...I used to get Adderall for day-time sleepiness, but the peripheral effects were really unpleasant. Since then, I've tried Dexedrine that a friend gets every month, and it's much more effective, and at lower amounts than Adderall. Does this apply to the lack of energy during Tx at all? I'm not trying to get a legitimate excuse to try to get a script for speed...really asking if amphetamines (or Provigil) help. Thank you.
 Signature Sick Boy
Paul - 03 Apr 2007 09:10 GMT On Tue, 03 Apr 2007 01:14:06 GMT, Sick Boy <sick-boy@norco.net.nz>, in message ID <uia31350bfu36nm56htgtlov7imiqf51is@4ax.com>, in the newsgroup alt.support.hepatitis-c wrote:
>>Hey SB... >> [quoted text clipped - 98 lines] >amphetamines (or Provigil) help. >Thank you. A lot of stuff you're asking there. I suppose you should be asking how they deal with low blood counts for starters - i.e. do they prescribe neupogen and/or procrit or do they reduce the dosage (possibly decreasing the chance of succesful outcome). Do they give anti-depressants if depression hits you? I'm surer that other will add plenty more.
One thing that sounds a really bad idea to me (I am NOT a medical worker BTW). I think taking speedy type drugs on tx sounds really awful. I can see where you are coming from re fatigue though. Tx drugs can produce enough extreme mood swings on their own without assistance from the extreme mood swings that can be caused by speedy stuff IMO. Also, to take this stuff on tx you would probably need to persist with it throughout because drugs like that can produce nasty comedowns. A comedown on that added to tx style depression sounds pretty heavy duty stuff to me. VERY bad idea IMO.
Sick Boy - 03 Apr 2007 16:07 GMT >On Tue, 03 Apr 2007 01:14:06 GMT, Sick Boy <sick-boy@norco.net.nz>, in >message ID <uia31350bfu36nm56htgtlov7imiqf51is@4ax.com>, in the >newsgroup alt.support.hepatitis-c wrote: [snip]
>>I would like to hear some suggestions about what to ask the doctor on >>my first visit. [quoted text clipped - 29 lines] >pretty heavy duty stuff to me. >VERY bad idea IMO. I hear ya, mate...thanks. I was thinking of taking small amounts, though--without depleting dopamine, I'd be able to experience some energy and perhaps anti-depressant effects, too (which d-amphetamine is actually good for, unless one goes on a binge, taking bigger and bigger amounts). But, I've no experience how one feels during Tx.
I'm curious if anyone has tried Provigil during Tx, though. It's a non-amphetamine stimulant...it has no come-down, and it's good for low energy/sleepiness during the day more widely now, since amphetamines are more tightly controlled. I guess I'll ask the liver doctor about that, if need arises.
 Signature Sick Boy
Randy T. - 24 Mar 2007 02:17 GMT i hid from my docs for yrs. only to learn they are still around..... ahahaha.... good luck. i finally have taught one of my docs to sit up in a straight backed chair and eat pinto beans..... dont tell me i cant train a half-human half arogant animal!
|
|
|