Aa
unhappy with doc
I asked my doc if I could have my viral load checked at 8 weeks. He said no, stating that it is an expensive test and the results would not effect tx either way. EEEEERG... might not effect tx but will effect my peace of mind.
My viral load went from >700,000 (my doc didn't do a more exact test, another bone I'd like to pick with him) to 67,000iu/ml at my four week. I would have felt better about my prospects if I went UND at 8 weeks.
Why do I always have problems with my docs. As soon as they see that you take a proactive approach to your own health, they give you attitude. They can't stand it when you research about your illness or ask questions.
Okay there is my rant of the day!
Jessica
My viral load went from >700,000 (my doc didn't do a more exact test, another bone I'd like to pick with him) to 67,000iu/ml at my four week. I would have felt better about my prospects if I went UND at 8 weeks.
Why do I always have problems with my docs. As soon as they see that you take a proactive approach to your own health, they give you attitude. They can't stand it when you research about your illness or ask questions.
Okay there is my rant of the day!
Jessica
what area of the country are you from? Maybe someone knows a better doc where you are too because that is just ridiculous. It's YOUR insurance, not your doctor's. What dog does HE have in that race? My doc tested me at four weeks and didn't have me slated again until 12 weeks. When I went to see him I said, hey, can we test at 8 weeks too? He said, sure, whatever you want, I'll write it in your chart. I mean, he's been awesome. He gave me an immediate hematology referral, getting me into see the guy in a matter of a few days, increased my number of viral load tests at the drop of a hat, is willing to work with me to keep me on tx even with my critically low hgb, he'll fit me in to see him whenever I want, he's just very responsive, especially for a guy with 400 other HCV patients. He even did an immediate MRI of my liver on two days notice when he found out I had some benign tumors because he wanted a baseline at the start of treatment but didn't want to delay my treatment. He's got a great personality. He's not a hepatologist though, but a gastro. So I am getting a consult together with a him and a hepatologist and my hematologist.
Also, I usually have a game plan when I see my docs of certain things that I want to discuss, and certain things that I feel I need medically. And I write them down before I go in so I don't forget. Now certainly I am open to their suggestions too... LOL But over the years since I've had some fairly complex health concerns I've learned to ask for what I want and to be pretty adamant about it. It WORKS.
I say, "I wanted to discuss a few things with you," and I go down the list. Usually they are agreeable to most of what I want and if not, they'll explain why its not a good idea and I can respect that. But by organizing myself this way before I go in, I at least feel "heard" and I get more of what I feel are my "medical needs" met instead of going home and feeling "oh, I forgot to ask this, or that."
I say, "I wanted to discuss a few things with you," and I go down the list. Usually they are agreeable to most of what I want and if not, they'll explain why its not a good idea and I can respect that. But by organizing myself this way before I go in, I at least feel "heard" and I get more of what I feel are my "medical needs" met instead of going home and feeling "oh, I forgot to ask this, or that."
Screw that. You don't have to put up with it. DON'T PUT UP WITH IT. It's bs. do you have insurance? If so, insist on it. And. In the meantime look for another doctor. An arrogant doctor who doesn't listen to his patients is not a great doctor, Period.
Doctors are highly educated and specialized contract labor. Nothing more and nothing less. So get a good one. God knows they get paid enough. You wouldn't get a contractor for your house who wasn't doing a job you liked and you most certainly should not settle for less when it comes to your health and your body. Do not be afraid or intimidated simply because they have a couple of degrees and some letters after their name. They still put their pants on one leg at a time and YOU are the customer. If they aren't treating you as a customer should be treated, go elsewhere.
Doctors are highly educated and specialized contract labor. Nothing more and nothing less. So get a good one. God knows they get paid enough. You wouldn't get a contractor for your house who wasn't doing a job you liked and you most certainly should not settle for less when it comes to your health and your body. Do not be afraid or intimidated simply because they have a couple of degrees and some letters after their name. They still put their pants on one leg at a time and YOU are the customer. If they aren't treating you as a customer should be treated, go elsewhere.
thanks for the info, this is the second time i've heard his name mentioned on this forum, i think i'll check it out.
No, he's not the best in the area, and "arroganc" dosn't score points in my book. Here's arguably the best doc in Boston and he's not arrogant. I'm sure he (or someone else in his office) will give you an 8 week test.
http://www.bidmc.harvard.edu/sites/bidmc/Find_a_doc/doc_detail.asp?sid=41414547424742
http://www.bidmc.harvard.edu/sites/bidmc/Find_a_doc/doc_detail.asp?sid=41414547424742
He is a specialist, at Mass General Hospital in Boston, I don't think my options are good (I think he's probably the best in the area). He's probably a great doc, just arrogant and doesn't listen to patients. I'll probably find the same thing with another doc. I don't want to sound paranoid but I think that a lot of the problems I have with docs lies in the fact that they know I once was a drug addict. When or if this hcv clears I am not going to put that on my med record anymore!
Tell him nicely that you want the test. You will be willing to pay for it if it's not covered by insurance (call them first and make sure it is...but don't tell HIM that it will be) but that one way or the other you want it for your own sense of peace of mind.
Most of the time if you say it that way they'll give in and give it to you.
I did get a one time consult with one of the big liver docs. I had to pay cash because he didn't take insurance BUT he was willing to consult with my doctor on anything. My doc wasn't bad or anything he just wasn't up to date on the studies and such. Well...after he talked to Dr. Jacobson he realized the need to read all the new stuff coming out. NOW he's up to date so I feel like I helped all the other patients he would get someday. THAT made me very happy.
If you can't switch over to someone who might have a bit more knowledge who could work WITH you to up your meds and such...try and do it this way but it seems like you are right and you're not responding well enough. He should be trying something!
Most of the time if you say it that way they'll give in and give it to you.
I did get a one time consult with one of the big liver docs. I had to pay cash because he didn't take insurance BUT he was willing to consult with my doctor on anything. My doc wasn't bad or anything he just wasn't up to date on the studies and such. Well...after he talked to Dr. Jacobson he realized the need to read all the new stuff coming out. NOW he's up to date so I feel like I helped all the other patients he would get someday. THAT made me very happy.
If you can't switch over to someone who might have a bit more knowledge who could work WITH you to up your meds and such...try and do it this way but it seems like you are right and you're not responding well enough. He should be trying something!
Unless you're lucky enough to live in an area with some good hepatologists (liver specialists) the problem you describe is a very real one.
Based on what I know now, if I lived in such an area (no liver specialists) and hypothetically needed to treat, I would probably get a one-time consult from an out-of-town hepatologist who could then plan and coordinate my treatment with a willing local GP. Blood results, etc, then would go to both doctors, as well as yourself of course.
This IMO would be preferably to working with a local GI who is unable or unwilling to follow some of the more up to date protocols such as early testing, helper drugs, etc, etc.
Based on what I know now, if I lived in such an area (no liver specialists) and hypothetically needed to treat, I would probably get a one-time consult from an out-of-town hepatologist who could then plan and coordinate my treatment with a willing local GP. Blood results, etc, then would go to both doctors, as well as yourself of course.
This IMO would be preferably to working with a local GI who is unable or unwilling to follow some of the more up to date protocols such as early testing, helper drugs, etc, etc.
It seems like a lot of doctors dealing with hep c don't want you very involved. I'm having the same problem. It was ok until I wanted to know my VL at 4 weeks. They told me the same thing, it's very expensive, it's best not to know. I had to insist on an 8 week VL and they gat mad when I wanted the results. I can't get the Doctor or the PA to call me back. They may not be getting my messages I don't know. These meds have me on a short fuse and I'm trying to be as diplomatic as I can.
I wish there was a list of good doctors that treat hep c patients but I haven't seen one for my area.I'm going to see another doctor (his Pa) in 3 weeks. I hope it's not too late though, I'm looking like I might be a nonresponder.
I'm in Nashville Tn. You would think there would be someone here that doesn't mind a patient that wants to be involved in their own care.
Finding a good doctor is not always as easy as it sounds.Don't give up though. What part of the country are you in? There are people on this site that might know someone in your area.
I wish there was a list of good doctors that treat hep c patients but I haven't seen one for my area.I'm going to see another doctor (his Pa) in 3 weeks. I hope it's not too late though, I'm looking like I might be a nonresponder.
I'm in Nashville Tn. You would think there would be someone here that doesn't mind a patient that wants to be involved in their own care.
Finding a good doctor is not always as easy as it sounds.Don't give up though. What part of the country are you in? There are people on this site that might know someone in your area.
Don't ask him, *tell* him nicely, but firmly that you understand his position, but you still want the test. And make sure it's a sensitive one. Something that goes down to 5-10 IU/ml like Heptimax from Quest Diagnositics. If he won't give it to you, ask your primary doctor. And if the relationship just isn't working, look for a new doctor.
-- Jim
-- Jim
As a test, ask him for copies of all your lab work and the biopsy report. If you feel any negativity from him, RUN AWAY.
A good doc will not mind giving you full test reports.
A PCR test is expensive but is he paying for it? At this time you do not know what your log drop is because you do not know what your starting VL was.
I would most likely try to find another doc at this point if it can be done without stopping the tx. You want at least an UND by 12 weeks but knowing if you are an EVR or SVR before 12 weeks will let you know your odds of SVR a bit better.
A good doc will not mind giving you full test reports.
A PCR test is expensive but is he paying for it? At this time you do not know what your log drop is because you do not know what your starting VL was.
I would most likely try to find another doc at this point if it can be done without stopping the tx. You want at least an UND by 12 weeks but knowing if you are an EVR or SVR before 12 weeks will let you know your odds of SVR a bit better.
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