Aa
can't trust Drs @ Nurses
O.K. just got off the phone with my Dr.s nurse. I asked her that when she told me that my biopsy was mild, I took it as a grade 1. NOW ! When I asked her for the #'s she told me I am a grade 2 stage 2 !!! Is that still regarded as mild ???? And big question, Can I still wait for the new med.s to come out ? I only want to do this tx. one more time !!! I am so f'in confused !! I hate Dr.s and nurses IIt is like they all work for the medical companies and not for you !!!!!!
grade 2 stage 2 implies to me you are just under moderate damage,sort of like not quite there ,half way, which is not bad and in the treatable stage and you do have a few years to wait,consider yourself lucky as i too was a stage 2 and now am cured.The PI drugs are worth waiting for
Last year I joined a study at mayo,they were useing mri to see if they cud use mri instead of biopsy
This brings up a wider issue of liver biopsy result reliability. Doctors tend to label liver biopsy as the "gold standard" of liver staging and deride blood staging tests like Fibrospect. Personally, I feel that liver biopsies are accurate but not precise:
http://en.wikipedia.org/wiki/Accuracy_and_precision
This means that any single result will be subject to intrinsic error and that you can only get a definitive answer through repeated sampling. Unfortunately, the nature of the test, coring your liver and depending on your body to properly clot the site, entails some risk. For these reasons, I believe that liver biopsies should only be used in special cases and not in the wholesale application to every hep c patient.
Most of the time, liver staging does not affect treatment, nor does it change whether to treat or not, but it may help in planning when to begin treatment.
It will be nice to see liver biopsies replaced by technology such as transient elastography ultrasound methods such as FibroScan:
http://www.youtube.com/watch?v=l_E4ZGmKooA
Because the test is accurate, non-invasive, can be repeated for improved precision and ultimately can be made inexpensive as it becomes more widely available, new information will be gained from being able to monitor patient liver staging prior, during and after treatment. I think the gap in knowledge about hep c liver disease progression, how and why people progress through stages at different rates and how much liver recovery can be expected on treatment and post SVR, can be addressed by a wide application of tests like Fibroscan.
Finally, while tests like MRE's are great:
http://www.youtube.com/watch?v=CsigfVo-SB4
I personally like the mapping, resolution and geek factor, they're way too expensive for application across a large population with frequent retests to answer these questions.
http://en.wikipedia.org/wiki/Accuracy_and_precision
This means that any single result will be subject to intrinsic error and that you can only get a definitive answer through repeated sampling. Unfortunately, the nature of the test, coring your liver and depending on your body to properly clot the site, entails some risk. For these reasons, I believe that liver biopsies should only be used in special cases and not in the wholesale application to every hep c patient.
Most of the time, liver staging does not affect treatment, nor does it change whether to treat or not, but it may help in planning when to begin treatment.
It will be nice to see liver biopsies replaced by technology such as transient elastography ultrasound methods such as FibroScan:
http://www.youtube.com/watch?v=l_E4ZGmKooA
Because the test is accurate, non-invasive, can be repeated for improved precision and ultimately can be made inexpensive as it becomes more widely available, new information will be gained from being able to monitor patient liver staging prior, during and after treatment. I think the gap in knowledge about hep c liver disease progression, how and why people progress through stages at different rates and how much liver recovery can be expected on treatment and post SVR, can be addressed by a wide application of tests like Fibroscan.
Finally, while tests like MRE's are great:
http://www.youtube.com/watch?v=CsigfVo-SB4
I personally like the mapping, resolution and geek factor, they're way too expensive for application across a large population with frequent retests to answer these questions.
Happy, if your Dr feels you can wait, wait another 9 months for PI cocktail treatment, and yes always get labs in hard copy, or have them forwarded to your computer and save them for reference.
My Dr at UCLA is great, but the treatment care Sr LVN is a lazy, disrespectful human, just assume most are and manage your treatment.
Good luck
T
My Dr at UCLA is great, but the treatment care Sr LVN is a lazy, disrespectful human, just assume most are and manage your treatment.
Good luck
T
I know it's scary finding out that your damage is further along then you thought. At least it's not so far along that you don't have time to make a clear decision and wait for better meds.
It's good that you called them to find out why they were pushing treating so much.
Be Well-Dave
It's good that you called them to find out why they were pushing treating so much.
Be Well-Dave
Unfortuantely we must be our own advocates.
This isn't always easy, especially if you have brainfog or other symptoms of illness.
Yes, always insist on hard copies of all labs and tests.
I adore my doctor and his nurse yet there are things that come up time and again where I think, I wish someone had told me.
My solution is to write down questions when I think of them so I don't forget when my appointment comes.
Goood luck
This isn't always easy, especially if you have brainfog or other symptoms of illness.
Yes, always insist on hard copies of all labs and tests.
I adore my doctor and his nurse yet there are things that come up time and again where I think, I wish someone had told me.
My solution is to write down questions when I think of them so I don't forget when my appointment comes.
Goood luck
I'm not sure how things are in other parts of the country, but in my area, it is virtually unheard of for a doctor to have a nurse working in the office. The docs in this area use "medical assistants". They are trained to check blood pressure, obtain basic medical history, help run the office, and deal with insurance companies. Do not assume that the person wearing scrubs and checking your temperature is a nurse - probably it is not.
good to have you in my corner again Deb. Missed you and everyone !!!! Yes it is good to be over obsessive with having this virus. You need to because it is so ever changing with studies and new tx's . I always say " KNOWLEDGE IS POWER ! " love you guys , Debbie P.S. Told the Nurse today that i would like to speak to the Dr. On Monday. That I have decided to wait till the new tx comes out. She was alittle reluctant of me waiting, but said " that's o.k., that is my chioce " makes me feel that they all are getting kick backs from med. companies and we are all just a commodity. Makes you wonder..........
Thank you for that dose of reality and a little kick in the *** !!! I needed that . Just wondering if while waiting for new tx. to come forht, that i should reserach a new Dr. too. And yes I just got the results back from test and they told me over the phone with no appt. set to see them. I will call them up on Monday to say that I am coming in to get copies of my results. I di do that with my other tests just recently given last month. Bill your a doll and it is good to be back and in the loop again. WOW, I have missed all the good and dedicated people on this forum. ciao for now, Debbie
Deb as Bill said always get it in hard copy. My doc told me I had no fibrosis and my ultrasound ws great. Then she changed her mind a while later and said i was stage 2 - I was shocked. Then I went to the GI and he looked and said crap you are definitely stage 3. I had to get it confirmed by another doctor because by that time i was a basket case.
There are good doctors and nurses and bad ones. Unfortunately until you are dealing with them you don't really know which is which. And unfortunately its not always a matter of asking friends because face it - they dont do research and verify things for themselves they just blindly trust what the doctor says.
I'm glad for us that we tend to be obsessive...it pays off.
As a stage 2 you can certainly wait until next year and see if the PIs are approved - in your case it would be so much better to add one.
There are good doctors and nurses and bad ones. Unfortunately until you are dealing with them you don't really know which is which. And unfortunately its not always a matter of asking friends because face it - they dont do research and verify things for themselves they just blindly trust what the doctor says.
I'm glad for us that we tend to be obsessive...it pays off.
As a stage 2 you can certainly wait until next year and see if the PIs are approved - in your case it would be so much better to add one.
I think maybe the lesson learned is to request hard copies of labs and procedures in the future, rather than relying on a nurse or office assistant to interpret them for you. Grade 2, stage 2 would generally be considered mild damage; and yes, if it were me, I’d postpone treatment through the middle of next year in anticipation of newer, more efficacious drugs being released. Be aware that no one is guaranteeing the release of PI drugs; the HCV community is expecting them based on things like mfgr press releases, etc.
These drs and nurses are the ones you’ll be relying in shortly to cure you, so try not to hate them too much :o).
Good luck and welcome back to the discussion group,
--Bill
These drs and nurses are the ones you’ll be relying in shortly to cure you, so try not to hate them too much :o).
Good luck and welcome back to the discussion group,
--Bill
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