I wouldn't give it another thought. It's those little, and in this case maybe big things that build up stress. Ya can't change it so... ON FORWARD!!! as we continue fighting the good fight....B
I agree with this here that some things are very fustrating sounds like an insurance issue ? T Bear says it best sometimes ya can't change it by the time you do fight the system maybe eight weeks will be here so choose your battles and how much time you spend on them It's hard to accept but we are in this for the long hall and if the outcome is going good then thats someting to hold onto lets hope it's working for Hubby
mallani said
Sep 4, 2012
Hi Caroline, You are obviously being seen in Hepatology OPD in a Hospital. Cost is almost certainly an issue, particularly for the VL tests. Why don't you ask if you could get a referral for a Private Lab., and get an 8week VL there? I am seen Privately, and Medicare will only pay for 3 VL tests per year. I have told my Lab. that I will pay to have the Quantitative test done each time- so far they have not charged me.
Tattoo Bear said
Sep 4, 2012
I wouldn't give it another thought. It's those little, and in this case maybe big things that build up stress. Ya can't change it so... ON FORWARD!!! as we continue fighting the good fight....B
Bloomster said
Sep 4, 2012
Thanks everyone for your replies.
I rang the hospital this morning to get some clarification. The nurse mentioned that there was in fact supposed to be a week 4 VL done, but as the sample was lost due to the machine failure, a re-do was not going to be done as hubby has now started the Victrelis and the week 4 test was to show the response to inteferon. A week 8 VL was not being done as hubby is classified as cirrhotic which excludes him from the test (in our hospital at least - as I know you had it done Malcolm at yours). So we have to wait for the Week 12 one.
Next appointment we are going to request copies of test results for each visit also, so that we have our own copies. Onward for now....
Bills said
Sep 3, 2012
Tattoo Bear wrote:
I must be lucky because all my labwork and any other tests are posted online by the lab. I see them before my doctors do.
Even when I had my biopsy done they offered to call me as soon as he had the results so I did not have to wait for my next
appointment to get them from my doctor. Also my first labwork is at 2 weeks, but I'm not sure they are doing my
VL, just complete blood count to check for anemia etc.. My Doctor also gives me all the time I need and encourages me to
ask questions. He also suggested I find a site like this one so that I could talk with people that are in the same boat. It's amazing
how much difference there are between doctors. Mine must have learned from Patch Adams.
Reading that last line Where you are treated and your insurance may make all the diff I'd like to see comment from the UK if anyone wants to
BS
Bills said
Sep 3, 2012
Yes T Bear some of are lucky that way
Thats a good question who does make the policy and guideline? I know For Sure Trials are limited access and sometimes blind but you may be agreeing to their rules when you sign up I was told in my 1st trial I won't see VL till the end 48 weeks
This a google about rights in USA youll have to see what applies
??? Ask your doctor who makes that rule? A trial? / study? / Dr at their office? Or your insurance allowance????? If a doctor is not getting paid for the effort they may be able to opt out unless medically necessary ( but you may need a reason and test and maybe a visit for the script) Everything about this can really be irritating as the rectal rashes Its worth every effort Its your health Just dont get nasty about it you need them to a point
A little about my case Note I have VG good insurance and ( I'm very blessed in that way so far )
Now that I'm off "The Trial" and in standard treatment I demanded to get Viral load 1@ start date the baseline - @2 weeks, @3 weeks and @4 weeks Dependent on results it will be every 4 weeks for VL ( numbers ) after that And CBC is a Standing order as needed ( 1 a week if I need it ) They are doing it I just go They gave me all the requisitions ( scripts ) in the beginning
I do my blood draws at a Labcore ( I don't bother them to do it ) They will also e-mail me a script if they want something doneas a precaution. BTW Labcore e-mails me to get my results online and also sends it to my doc ( There are other labs that should do the same ) as T-Bear says
Bill S I wish you luck hope you can straiten that out
Tattoo Bear said
Sep 3, 2012
I must be lucky because all my labwork and any other tests are posted online by the lab. I see them before my doctors do.
Even when I had my biopsy done they offered to call me as soon as he had the results so I did not have to wait for my next
appointment to get them from my doctor. Also my first labwork is at 2 weeks, but I'm not sure they are doing my
VL, just complete blood count to check for anemia etc.. My Doctor also gives me all the time I need and encourages me to
ask questions. He also suggested I find a site like this one so that I could talk with people that are in the same boat. It's amazing
how much difference there are between doctors. Mine must have learned from Patch Adams.
Phil G said
Sep 3, 2012
I did not have a 4 week VL. My first after starting tx was at 8 weeks. I don't think the Response Guided Therapy (from the version when I as on tx) uses the 4 week results.
-- Edited by Phil G on Monday 3rd of September 2012 05:55:54 PM
greenqueen said
Sep 3, 2012
Hi Caroline,
I got asked why I wanted my copies of my bloods??? It does seem to be the attitude in some places that although it's "our" treatment, we shouldn't be bothering our silly little heads about such insignificant matters
The two links below have some good info regarding medical appointments and dealing with health care providers:
When we went in to see the specialist she actually referred to a document which stated that my husband was only meant to get the viral load done at 12 weeks. She called the nurse in afterwards and she got into trouble (she told us afterwards) that she had given us the incorrect info. I may call tomorrow to gain clarification around this.
mallani said
Sep 3, 2012
Hi Caroline, This really is unacceptable. The 4 week VL is the only true measurement of Interferon sensitivity, and is an important indicator for Rx duration. The 8 week VL after 4 weeks of Vict. is also a strong predictor. If the VL at 12 weeks is not Undet., treatment should be stopped. Surely your doc will answer questions about this.
The Lab. test is also unacceptable. I use S&N Pathology, and make sure the Tech. takes enough blood for 2 samples ( for both qualitative and quantitative PCR's). This is easy for me, being a medico, but I can understand the layperson may have problems with this. It is within your rights to demand copies of all your test results- if your doc won't provide them, I would change hepatologists! Makes me angry.
hrsetrdr said
Sep 3, 2012
Bloomster wrote:By the way, even though we really like our nurse and specialist, we have found that they don't really like you to ask questions on your results or heaven forbid read info in forums!!! Anyway, each fortnight when we have the appointment, I usually try and get some extra info out of them. Today I asked for hubby's haemoglobin figure - she said 122 (so is this 12) and from other readings on this site, still very much in the ok range? Caroline
That has been my experience as well, Caroline. I guess you could compare this to talking to any technical person that is rendering services to you(computer repair, automotive, etc), they feel uncorfortable about the possibility of being "second guessed", or perhaps unfairly judged by someone that trusts Google more than their Dr.
Construction & service pros that deal with homeowners hate Angie's List, because such people can be brutally criticized there, and have no means to rebutt derrogatory statments made.
Bloomster said
Sep 3, 2012
Well hubby and I went to the hospital today for his Week 6 visit. We were expecting to get the viral load results from Week 4 but the nurse told us that the machine had failed and the sample had been lost. Very disappointed...... After seeing the nurse, we went in to see the specialist and she said that the viral load test should never have been done as they were only doing them at Week 12 now. Even more disappointed.....
Hubby's absolutely fine with it all, I think it was me more that wanted to see the results. In any case, we'll just soldier on. I feel very positive and am believing for a great result from this treatment.
By the way, even though we really like our nurse and specialist, we have found that they don't really like you to ask questions on your results or heaven forbid read info in forums!!! Anyway, each fortnight when we have the appointment, I usually try and get some extra info out of them. Today I asked for hubby's haemoglobin figure - she said 122 (so is this 12) and from other readings on this site, still very much in the ok range? Caroline
I agree with this here that some things are very fustrating sounds like an insurance issue ? T Bear says it best sometimes ya can't change it by the time you do fight the system maybe eight weeks will be here so choose your battles and how much time you spend on them It's hard to accept but we are in this for the long hall and if the outcome is going good then thats someting to hold onto lets hope it's working for Hubby
Hi Caroline, You are obviously being seen in Hepatology OPD in a Hospital. Cost is almost certainly an issue, particularly for the VL tests. Why don't you ask if you could get a referral for a Private Lab., and get an 8week VL there? I am seen Privately, and Medicare will only pay for 3 VL tests per year. I have told my Lab. that I will pay to have the Quantitative test done each time- so far they have not charged me.
I wouldn't give it another thought. It's those little, and in this case maybe big things that build up stress. Ya can't change it so... ON FORWARD!!! as we continue fighting the good fight....B
Thanks everyone for your replies.
I rang the hospital this morning to get some clarification. The nurse mentioned that there was in fact supposed to be a week 4 VL done, but as the sample was lost due to the machine failure, a re-do was not going to be done as hubby has now started the Victrelis and the week 4 test was to show the response to inteferon. A week 8 VL was not being done as hubby is classified as cirrhotic which excludes him from the test (in our hospital at least - as I know you had it done Malcolm at yours). So we have to wait for the Week 12 one.
Next appointment we are going to request copies of test results for each visit also, so that we have our own copies. Onward for now....
Reading that last line Where you are treated and your insurance may make all the diff I'd like to see comment from the UK if anyone wants to
BS
Yes T Bear some of are lucky that way
Thats a good question who does make the policy and guideline? I know For Sure Trials are limited access and sometimes blind but you may be agreeing to their rules when you sign up I was told in my 1st trial I won't see VL till the end 48 weeks
This a google about rights in USA youll have to see what applies
https://www.google.com/search?q=patient+rights+to+medical+records&ie=utf-8&oe=utf-8&aq=t&rls=org.mozilla:en-US:official&client=firefox-a
??? Ask your doctor who makes that rule? A trial? / study? / Dr at their office? Or your insurance allowance????? If a doctor is not getting paid for the effort they may be able to opt out unless medically necessary ( but you may need a reason and test and maybe a visit for the script) Everything about this can really be irritating as the rectal rashes Its worth every effort Its your health Just dont get nasty about it you need them to a point
A little about my case Note I have VG good insurance and ( I'm very blessed in that way so far )
Now that I'm off "The Trial" and in standard treatment I demanded to get Viral load 1@ start date the baseline - @2 weeks, @3 weeks and @4 weeks Dependent on results it will be every 4 weeks for VL ( numbers ) after that And CBC is a Standing order as needed ( 1 a week if I need it ) They are doing it I just go They gave me all the requisitions ( scripts ) in the beginning
I do my blood draws at a Labcore ( I don't bother them to do it ) They will also e-mail me a script if they want something done as a precaution. BTW Labcore e-mails me to get my results online and also sends it to my doc ( There are other labs that should do the same ) as T-Bear says
Bill S I wish you luck hope you can straiten that out
I must be lucky because all my labwork and any other tests are posted online by the lab. I see them before my doctors do.
Even when I had my biopsy done they offered to call me as soon as he had the results so I did not have to wait for my next
appointment to get them from my doctor. Also my first labwork is at 2 weeks, but I'm not sure they are doing my
VL, just complete blood count to check for anemia etc.. My Doctor also gives me all the time I need and encourages me to
ask questions. He also suggested I find a site like this one so that I could talk with people that are in the same boat. It's amazing
how much difference there are between doctors. Mine must have learned from Patch Adams.
I did not have a 4 week VL. My first after starting tx was at 8 weeks. I don't think the Response Guided Therapy (from the version when I as on tx) uses the 4 week results.
-- Edited by Phil G on Monday 3rd of September 2012 05:55:54 PM
Hi Caroline,
I got asked why I wanted my copies of my bloods??? It does seem to be the attitude in some places that although it's "our" treatment, we shouldn't be bothering our silly little heads about such insignificant matters
The two links below have some good info regarding medical appointments and dealing with health care providers:
http://www.hcvadvocate.org/hepatitis/factsheets_pdf/max_appoint.pdf
http://www.hcvadvocate.org/hepatitis/factsheets_pdf/organized.pdf
Steff xx
When we went in to see the specialist she actually referred to a document which stated that my husband was only meant to get the viral load done at 12 weeks. She called the nurse in afterwards and she got into trouble (she told us afterwards) that she had given us the incorrect info. I may call tomorrow to gain clarification around this.
Hi Caroline, This really is unacceptable. The 4 week VL is the only true measurement of Interferon sensitivity, and is an important indicator for Rx duration. The 8 week VL after 4 weeks of Vict. is also a strong predictor. If the VL at 12 weeks is not Undet., treatment should be stopped. Surely your doc will answer questions about this.
The Lab. test is also unacceptable. I use S&N Pathology, and make sure the Tech. takes enough blood for 2 samples ( for both qualitative and quantitative PCR's). This is easy for me, being a medico, but I can understand the layperson may have problems with this. It is within your rights to demand copies of all your test results- if your doc won't provide them, I would change hepatologists! Makes me angry.
That has been my experience as well, Caroline. I guess you could compare this to talking to any technical person that is rendering services to you(computer repair, automotive, etc), they feel uncorfortable about the possibility of being "second guessed", or perhaps unfairly judged by someone that trusts Google more than their Dr.
Construction & service pros that deal with homeowners hate Angie's List, because such people can be brutally criticized there, and have no means to rebutt derrogatory statments made.
Well hubby and I went to the hospital today for his Week 6 visit. We were expecting to get the viral load results from Week 4 but the nurse told us that the machine had failed and the sample had been lost. Very disappointed...... After seeing the nurse, we went in to see the specialist and she said that the viral load test should never have been done as they were only doing them at Week 12 now. Even more disappointed.....
Hubby's absolutely fine with it all, I think it was me more that wanted to see the results. In any case, we'll just soldier on. I feel very positive and am believing for a great result from this treatment.
By the way, even though we really like our nurse and specialist, we have found that they don't really like you to ask questions on your results or heaven forbid read info in forums!!! Anyway, each fortnight when we have the appointment, I usually try and get some extra info out of them. Today I asked for hubby's haemoglobin figure - she said 122 (so is this 12) and from other readings on this site, still very much in the ok range? Caroline