hepatologist or gastroenterologist?

[chevyelcam79]

The confusion continues.....  What is the diff between a hepatologist and a gastroenterologist?  My doc is a gastro, is that ok?  I am located on the eastern shore of Maryland.  Would rather go to docs in annapolis, MD.

[Forseegood]

Hi, well, usually youre better off with a hepatologist, cause they specilize in liver issues exclusively, if I'm not mistaken...and a gastro does the whole gastro district so to speak...but my gastro is pretty famous, on a lot of hep c panels, boards, etc...he goes to many of the Hep C conferences and knows all the big players...and he specializes in Hep C related issues...so in his case, he's great for someone with Hep C...

guess the rub is you have to go to a doctor who is very familiar with Hepatitis C issues...not all of them are...some people here know more about the 'disease' itself (course, not the physiology of the liver or anything medical) then many docs out there...which brings us back to the all important issue of patients edcucating themselves as well as they can about this disease...then at least you know the good questions to ask, and if youre going with a good doc for hep, or not...best of luck to you, only my opinion...

[mycoldfeet]

I have both, I don't see my Hep Doc as often as my gastro, but they keep in touch by fax and phone, and my gastro worked his residency in a liver transplant hospital so he knows his stuff too. My hep Doc is about 3 hours drive, so I rely heavily on my gastro. Much of what happens with Hep C and liver problems affects other parts also, like the intestines, spleen, thyroid, and others so it's not bad to have both, you have a built in second opinion. He also does my biopsy, endoscope, and ultrasound and MRI tests locally, and is there for me in the ER waiting when things have happened.

[jmjm530]

First off, a hepatologist is a gastroenterologist. They just happen to specialize in liver-related issues such as hepatitis and cirrhosis. Everything being equal, a hepatologist should serve you better in regard to treatment.

-- Jim

[FlGuy]

I guess I'm similar to coldfeet. Saw a hepatologist who designed a tx plan and my local gastro is executing on the plan.  In addition, I see and endocrinologist who keeps track of his stuff. And, they all swap stuff.  Johns Hopkins is a hotbed of HCV learning, many docs have their clinical roots there. So, if you are looking for a second opinion, after the gastro, I think you have a pretty good source in your neighborhood.

[Myown]

Took your advice and am going to up to Boston. Actually works out well, thank God. Going to Boston before Ny.

going day before and grabbing a hotel room. I won't be stressed trying to find the office then. I would imagine there are many buildings by the hospital and don't want to be running around last minute on a search.

let me know what to expect it you get a chance. Routine exam or just go over labs or both? Be nice if the scan is thrown in, but if not, it will be good to hear what he has to say about current tx and upcomming tx etc.

if ya can think of anything let me know. I'm going to eat dinner and will be back on computer later.

thanks again for telling me about Boston.

[jmjm530]

I'm glad it worked out like that. I'm assuming the appointment is specifically with Dr. A?

Like you say, Fibroscan or not, it's definitely worth the consult. But if it were me, now that you have the appointment locked up, it might be worth a second call regarding Fibroscan. Just tell them your doctor thought it would be a good idea and you'd want to make sure that they booked you enough time and that the tech will be there the day/time of your appointment. That's how I'd go about it, but I'm a bit pushy about those kinds of things :)

You want to bring with you copies of all recent bloodwork and any thing else relevant like ultrasound reports, etc. In fact, you might want to fax it to the office in advance as well, but of course speak to them first.

Lastly, if it's like most of the big city hospitals I'm familiar with, regardless if they said they will take your insurance -- I'd still make it a point to call the insurance person in Dr. J's office well in advance of your visit to make sure they have received any required referrals and to go over all paperwork. Better to do as much as possible in advance on the phone than be bothered the day of your appointment.

I'm somewhat familiar with Boston and the best place for you to stay would be at the Best Western Inn which I think is on Longwood Avenue. In any event, it's the one closest to the Hospital. Are you driving, flying or taking the train? I think they have a new express train running up and down the Eastern corridor that might make a relaxing trip.

I'm sure this will be worthwhile venture.

Be well,

-- Jim

[Myown]

Yes I made the appointment specifically with DR.A. She said he is taking on new patients. I wanted to make sure of that. The insurance seems to be taken care of. They took all the info, plus I called my insurance co to see if he was on the list.

What about the fibroscan,,,since its not FDA approved, insurance can't cover(?), but does that mean that there is no charge for it? I'll just keep my fingers crossed that he will do it. Did you ask ahead of time about it or he just did it? I still think that maybe because I don't have a bx, to compare it to, a fibrosure may not be of interest, so we'll see. Worse comes to worse, I may have to get a bx over NY if DR D insists on one.

The girl on the phone mentioned best western and holiday inn also. we were planning on driving. We do fly,,, but both HATE to fly, so if its within driving distance like Boston or California,lol, we'd rather drive. Train is something to think about, but then again, we would have to hope the crypts or bloods didn't get us in Newark where we would be boarding the train. I guess you'd be able to say that saying "she didn't die 'from' hep,,,, she died 'with' hep. lol


The guy down at AAA told my husband that he thinks the hotels may not have parking,,, right outside of town, they would. But I'll call,because i don't want to wander around too much. I like everything boomp, boomp, boomp,,,quick and simple. The more simple the better.

so I'll see. I have an appointment with a local dr. tommorrow. I'll tell him I'm going to the others too, I guess. Maybe he'll want to have more labs ordered to bring up to Boston.

Think of anything else, let me know, thanks for your help.

[Sweetie6852]

Hi - I have Dr A for a Dr.  He's the best and will be aggressive as needed.  He's also never on schedule so get used to that and his PA's and Nurse Practioners become right hands through treatment.  I can email them anytime and get answers within an hr - you can also email Dr. A.  There is a patientinfo site at BI https://www.patientsite.org/  that you can register and get your lab work, any of your biopsy etc sometimes before you get home.  I've had a rocky road with anemia and have 48 weeks total and on week 9 - my genotype is 1 and my viral load started at 15 million and week 8 it was 2460 - I'm very pleased.  I went originally to my local Gastro guy who told me I had a lot of a weak virus - because I was stage 1 grade 2.  That's sort of like being a little pregnant.  The Gastro also told me the fatigue, brain fog and symptoms I was having couldn't possibly be the Hep.  Dr. A's office told me my symptoms were common and they'd heard everything and I didn't feel like a leper.  So good luck with him - you won't be sorry - that office has been a life saver, all the Drs., PAs and NPs - they are the best.  Only 39 more to go.

[JazzCat]

I flew in from the west to visit Dr. Afdahl in Boston earlier this year for the FibroScan.  There's a couple of things you should do in advance to get the most from your visit.  It's fine that you scheduled a general apppointment with Dr. A, but you're making a big mistake if you're presuming that he'll "scan" you while you're there just because you want it done.

The FibroScan clinical study has strict eligibility criteria which every participant must meet.  Your eligibility must be determined in advance of your visit, not on the fly when you're sitting there in front of Dr. A.

You need to start by talking to someone in Dr. A's office who is involved in adminstering the clinical trial.  Back when I did this, that person was Rory Farnan, but he has since moved on.  Find out who's taking his place and talk to that person on the phone.  

As far as accomodations go, I highly recommend staying at the Newbury Guest House.  It's less than 2 miles from Beth Israel and can be accessed easily on the "T" (or you can walk, like I did).  The Newbury Guest house is a B&B on swanky Newbury Street, but you can get a quaint room, complete with a delicious hot breakfast, for $120.  

[jmjm530]

Wouldn't worry about being charged for scan since it's still FDA approval pending. That was just a hypothetical how I might handle the situation -- you really have nothing to lose.  Scratch the Holiday Inn and go with  Best Western. Don't think the Crypts take the whatever the superline train is called, but if you have the car all gassed up, probably the easiest since you're traveling with hubby. Dr. D. has a pretty agressive rep, so he'll probably not only want to poke you liver but put it on a spit and turn it over a flame of Peg and Riba. That's why you should get several opinions. Any one of these alphabet soup docs can you treat you -- a, d and j-- but they might have different takes on whether you should. But at the end of the day take it all home and do what's best for you. They are in biz to give you advice, not make decisions.

Be well.

-- Jim

[jmjm530]

I agree not to take the scan for granted. However, the trial is a lot more flexible than lots of people realize and not everyone scanned will necessarily end up in the trial.

That's why I suggested MyOwn see if the appointment secretary can get her scheduled for the scan first, never know.

If so, great. If not, then by all means call whoever Mr. Farnan's replacement is -- the title would be the Fibro*scan tech -- and make a good case why you should be scanned at time of visit. I believe the scan is right in the office and only takes five minutes. You might indicate to the tech that you *may* have a biopsy in the near future to compare it to. I recommended Best Western because it's less than half a mile from the hospital so you would be able to definitely leave the car parked and walk.

-- Jim

[JazzCat]

When I was scanned, the equipment was in a cramped, dark storage room.  Nothing fancy about it.  I laid down on the table and a couple of minutes later, it was done.  They did take some blood, too.  Not sure what they did with that.  The trip was well worth it though.  I liked the "score" they gave me and it convinced me to put my biopsy plans on hold.

[Myown]

Sounds like your doing good. That's great. I wouldn't be treating with DR. A, just a one time visit for consult. I have to deceide whether or not to tx yet, so just trying to see get advice from some top doctors, as Jim has reccomended, worked well for him. thanks for response

[Myown]

Thanks Jim, maybe i should call, then and see if I can get a hold of the person in charge of the scan

Jazzcat...thanks for info. you said you put your bx plans on hold. did they ask you anything about if you were getting a bx in future? what do you feel was said that made you a candidate for the scan? might be helpful info for me. i was just hoping that he figured that since i came all the way up from jersey, he might throw it in. then again wouldn't be the first time in life i was dead wrong.

[Myown]

jim said,
not everyone scanned will necessarily end up in the trial.
---------------------------------------------------------------

what do you mean? What does the trial entail?

[jmjm530]

The "trial" involves nothing more than getting scanned. The rest is what they do with the info. Don't make it more complicated than it is. You've already got your appointment. Next step if you want, is to call and ask whoever answers the phone if they have you down for the scan or not because you would like to have it. If they say you're down for the scan as an automatic, fine. If not, you can ask to speak to the scan tech and see if he will scan you at the time of the appointment. Since they prefer to have a biopsy around the time of the scan, you might say that you may get a biospy soon, which is true since you've considered it. If you're not comfortable with what I said, then just go to your appointment and discuss getting scanned with Dr. A. If he won't do it that day, maybe he'll have you back. I just thought it easier if you tried to clear the way first. Less trips to Boston.

Be well.

-- Jim

[jmjm530]

If you want to make it simpler, why don't you just call up the office and ask to speak to the scan tech directly. Tell the scan tech that you have an appointment on such and such a date and time and you just want to make sure you will get the Firbro*scan. Be assertive but nice and unassumptive. He/she probably either tell you "yes", "no", or "I'll speak to the Doctor and get back". You don't have to quiz the tech on the trial or even mention it. Just keep it simple.

-- Jim

[landfill]

The American Board of Internal Medicine has a certification exam for gastroenterology but not hepatology. There's a pilot program for transplant hepatology but I don't think they've certified anybody yet. So hepatologists are self-asserting a specialty that has no credential. Somebody correct me if I'm wrong. All I know about doctors is from getting so many diseases.

I can recommend Mark Sulkowski at Johns Hopkins. JH treats hepc in infectious diseases, not gastroenterology. Mark treats Hepc and HCV-HIV co-infections exclusively, I think. He got me through 48 weeks of tx (now SVR). He publishes JH research in hepc (google him). He sits and answers your questions for as long as you can stand it each time you go there. He has a charming administrator named Susan Clayton who spent a lot of time on the phone arguing with Blue Cross for me.

It's always seemed to me that virology is closer to the heart of hepc than gastroenterology, anyway. My best wishes for you.

[Myown]

Thanks ,,,, the only reason i asked what does the trial entail was because 'if' it meant going back up to Boston again or over several months or something, I wouldn't want them to scan me then. Like I said, I like it simple. If things get too difficult, its not worth it to me.I'll be happy with his opinion added to the pool before I make my decision about tx. I'm ready to reach down my throat and pull my liver out at this point. My liver is getting on my nerves.

You're right the hotel looks like a good choice. Location is good. thanks

[JazzCat]

I don't think it's correct to assume that they'll scan just anyone.  I was told that I could not receive a scan unless I could provide documentation that I had undergone a needle biospy within the past three years.  I met that criteria.  Perhaps they're more flexible on other criteria, but I done think they'll budge on that one.

I would get this all sorted out before you leave for your trip.  Otherwise you could be very disappointed if your primary motivation for going there isn't satisfied.

[JazzCat]

I forgot to add in my post to you above that Dr. A recommended that I not rush out to get another biopsy.  He seems to be pretty confident in the accuracy of the scan and didn't see a need to follow-up with an invasive, riskier procedure (especially since I'm between Stage 0 and Stage 1).

[Myown]

Thanks for the info. I haven't had a bx as of yet and won't be getting one before i go up, possibly one at the NY doc eventually.

I figured it would be worth to talk to Dr. A even if a scan wasn't part of the mix. I have questions about ANA and such that are not being clearly addressed when I ask doctors. I think in partly that not enough is known and thats fine, but then doctors should just say that instead of brushing things off.

My husband on the other hand is leaving all decisions up to me, but when I asked him what he thought about the trip up to Boston, he feels that if the scan isn't included that there are other doctors in NY besides the one I am going to see and to just book an appointment with 2 or 3 of them rather than go all the way up to Boston,,,but he says my choice, so here I am again scratching my head. They didn't ask me on the phone if I had bx,,,just bring all my labs or fax them.

so I'll call and see whats what...who knows maybe my husband is right and I should just go and speak to another NY doctor if I won't be getting scan.I'll think about it some more. I have a local appointment today with someone I haven't seen as yet.

[Myown]

Good to hear you are aren't showing damage with your scan. According to fibrosure test I am stage 0 also. Good news for both of us,,but I am finding it hard as to make a decison to tx or wait for better meds. Thats another reason I want the opinions of highly knowledgeable doctors such as Dr. A and D. Are you currently tx or are you waiting for better meds. Did the doctors you have seen have mixed opinions as whether to tx.

I have high energy and feeling generally good most of the time so that is good, but makes it tough as to whether to decide to tx. I mean I know tx makes you feel lousy, that I can accept, but I don't want lingering sx (who does) and if waiting for better meds might lessen the likelihood, I'd wait.But the other side is this virus is doing who knows what inside of me while waiting.

I live my life with the horse before the cart. I'm sure there is a name for "that disease." I just call it worrying for nothing or "being stupid for no reason."

Let me know if you get a chance, what decisions you have made as far as to tx or not to tx. You may help me get my horse in front of my cart.

[Myown]

cart before the horse,,,you know what i meant