Aa
V.A. Post Mortum
Once again, thank you so much to everyone who suffered through my panic at my V.A. visit last Friday. And thank you for your suggestions - they gave me plans "B", "C" and "D" if things went south.
Here's how it went down:
Friday, before I left I spoke with the one of the Patient Advocates who promised that he's look into things and call me back Monday.
Monday morning I emailed the Pat. Advo. and reminded him of what we spoke about and what I felt we needed to do .
Monday afternoon at 2:30 - no call back from the Pat Advo and my email looks like it hadn't been read (sent it with return receipt) so I called him back.
He hadn't done anything yet and looked like he forgot about the whole thing (promises? ). I asked him about he email that I sent. Turns out that the V.A. does not provide him with a desk, private phone and he's not used to reading his email. The V.A. obviously takes their Patient Advocates seriously . So I reminded him of the seriousness of the situation and asked for a call back the next day.
Tuesday morning comes and the Pat Advo calls me back and asks if I can come in that afternoon. No, I can't because I have to rent a car to travel the 28 miles to the hospital. So we arrange Wed morning. I rent a car and arrange to take off work (again).
Wed morning and my Physician's Assistant (same one) looks me over ans is treating me with kid gloves. Gets me my meds and my labs (including the 4 week quant) . The P.A. and I have a discussion - it's VERY obvious that she is trying to be especially nice but it is disappointing that she has MANY misconceptions about HCV. She tells me that my ALT (which, after three weeks of treatment has gone from 120 down to 41 - first time in 2 years(!) , doesn't mean a thing as because "the numbers go up and down all the time" . I don't think so. S
he hasn't a clue what my previous blood work stats are because she is too lazy to look them up and correlate them if they aren't on the computer in front of her. I, on the other hand, have six of my CBCs and liver panels from the last three years. The P.A. then tells me that negative HCV antibody tests don't mean a thing because "you can carry the virus around for years and not show up on the anti-body test. The Anti-body test only shown up when you get a chronic case". This is just so wrong at a basic level.
So I have to get a new treating provider - preferably a Doctor. I'll work on that in the next few months. But for now, I have the meds and I have my labs and I am closely monitoring myself.
My Wbc and RBC and neutrophils went down noticeably in the three weeks but not even out of spec as yet. My glucose which was borderline high is lowering and , as I said, my ALT is within normal limits (41 down from 120-150) for the first time in two years. I am very encouraged by that. I'll get the quant results from my 4 week back sometime next week (because I'll ask for a copy - the P.A. won't call me , I already know that)
All in all I am encouraged and hope to see a significant viral load drop when I get the results back.
Thanks to everyone who responded so supportively.
Andromeda
Here's how it went down:
Friday, before I left I spoke with the one of the Patient Advocates who promised that he's look into things and call me back Monday.
Monday morning I emailed the Pat. Advo. and reminded him of what we spoke about and what I felt we needed to do .
Monday afternoon at 2:30 - no call back from the Pat Advo and my email looks like it hadn't been read (sent it with return receipt) so I called him back.
He hadn't done anything yet and looked like he forgot about the whole thing (promises? ). I asked him about he email that I sent. Turns out that the V.A. does not provide him with a desk, private phone and he's not used to reading his email. The V.A. obviously takes their Patient Advocates seriously . So I reminded him of the seriousness of the situation and asked for a call back the next day.
Tuesday morning comes and the Pat Advo calls me back and asks if I can come in that afternoon. No, I can't because I have to rent a car to travel the 28 miles to the hospital. So we arrange Wed morning. I rent a car and arrange to take off work (again).
Wed morning and my Physician's Assistant (same one) looks me over ans is treating me with kid gloves. Gets me my meds and my labs (including the 4 week quant) . The P.A. and I have a discussion - it's VERY obvious that she is trying to be especially nice but it is disappointing that she has MANY misconceptions about HCV. She tells me that my ALT (which, after three weeks of treatment has gone from 120 down to 41 - first time in 2 years(!) , doesn't mean a thing as because "the numbers go up and down all the time" . I don't think so. S
he hasn't a clue what my previous blood work stats are because she is too lazy to look them up and correlate them if they aren't on the computer in front of her. I, on the other hand, have six of my CBCs and liver panels from the last three years. The P.A. then tells me that negative HCV antibody tests don't mean a thing because "you can carry the virus around for years and not show up on the anti-body test. The Anti-body test only shown up when you get a chronic case". This is just so wrong at a basic level.
So I have to get a new treating provider - preferably a Doctor. I'll work on that in the next few months. But for now, I have the meds and I have my labs and I am closely monitoring myself.
My Wbc and RBC and neutrophils went down noticeably in the three weeks but not even out of spec as yet. My glucose which was borderline high is lowering and , as I said, my ALT is within normal limits (41 down from 120-150) for the first time in two years. I am very encouraged by that. I'll get the quant results from my 4 week back sometime next week (because I'll ask for a copy - the P.A. won't call me , I already know that)
All in all I am encouraged and hope to see a significant viral load drop when I get the results back.
Thanks to everyone who responded so supportively.
Andromeda
I'm glad you made a strong point of getting what you need.
I changed doctors mid-treatment.
I discovered that many hospitals and care facilities have in place charity care that is not well known. ( I don't have insurance) You have to ask. This reduces your fee or is free depending on you financial situation.Even quest labs has it available to those in need.
I landed up going with CPMC, the Gish group, a group of well known hepc researchers that have clinics in Northern Ca.
I received all my meds for free, interferon and riba through Roche.
My point is, don't give up, don't let them get you down and demand the right treatment for you. GO TO IT!!! And listen to your intuition. It is real and true.
Best of luck, OH
I changed doctors mid-treatment.
I discovered that many hospitals and care facilities have in place charity care that is not well known. ( I don't have insurance) You have to ask. This reduces your fee or is free depending on you financial situation.Even quest labs has it available to those in need.
I landed up going with CPMC, the Gish group, a group of well known hepc researchers that have clinics in Northern Ca.
I received all my meds for free, interferon and riba through Roche.
My point is, don't give up, don't let them get you down and demand the right treatment for you. GO TO IT!!! And listen to your intuition. It is real and true.
Best of luck, OH
I will totally agree with you --- with the caveat - if they have previously treated or studied HCV -- or have taken the TX themselves....
I'm so very glad that you are advocating yourself.
She sounds like a nitwith. LOL!
Hugs darling!
Meki
I'm so very glad that you are advocating yourself.
She sounds like a nitwith. LOL!
Hugs darling!
Meki
Meki,
You bring up a lot of interesting points and thank you very much for your comments - hope that you are feeling better yourself. I'd like to address one of your comments where you say:
"And it would only take a moment for you to say:
Since getting HCV I have absorbed as much information as possible about the virus, the treatments and all of the signs, symptoms and side effects of the virus and the treatment. I understand about labwork, and know what labwork results can mean."
Did that - pretty much exactly that - even tried to make sure that I deferred to her "professional" status. The response I received was not what I expected. Anytime I pull up lab results she poo-poos them away as not meaning anything (which I interpret to mean that she doesn't really know what they mean.)
She makes unwarranted assumptions and conclusions. Case in point: She asks about my symptoms and I tell her about the extreme tiredness that had me taking off work4 days a couple of weeks ago. She immediately responds , "That's because you aren't drinking enough water - you need to drink more!" Notice that she never asks me "how much water are you drinking?" first.
I inform her that "I make it a point to specifically drink a minimum of 75 oz of water a day and most days it reached 100 oz. I know this because the water bottles that I use are marked 25oz and I drink 3 to 4 of them a day. " She looks abashed and shrugs a bit as if to say, "oh..." and has nothing more to say. I've exhausted her knowledge base when it comes to reasons for "tiredness". She's a compendium of knee-jerk, simplistic responses that appear to be born more from repetition and convenient one-liners than any actual study or understanding. In short she's probably qualified to give out cold medicine and (maybe) antibiotics - but treating Hep C? Don't think so. She is the PRIMARY care person for that entire clinic - one of 2 devoted to the treatment of HCV.
I show her my lab tests for the past 3 years , refer her to the ALT levels which halved in the first 3 weeks of treatment and went to normal for the very first time in 3 years of testing. She tells me the numbers "don't mean a thing because they go up and down all the time". I believe that she sees numbers go up and down all the time and doesn't really understand the significance of them and hence her answer. sorry , but lowered levels to normal the first time in 3 years and occurring after 3 weeks of treatment DOES mean something. They might go up again, sure but SOMETHING positive is happening. But the P.A. isn't aware enough to see that.
There's more and I am writing them down and documenting them for others to look over but the bottom line is that some treating providers are incompetent and frankly, a P.A. with two years of training does NOT have the innate, nor learned, ability to correctly treat this very complex disorder. Heck, even a General Practitioner does not have such training - that's why we seek out trained G.I's and other specialist.
I intend to make (force) a change in that regard in the next 6 weeks - want things to settle down a bit before I force that hand.
My opinion to anyone here just starting treatment - if you have ANY other choice - if any other choice is POSSIBLE for you, do NOT accept treatment from anyone less than a specialist DOCTOR in this field. Physician Assistant's and Nurse Practitioners do NOT have enough training to make adequate decisions regarding HCV treatment.
You bring up a lot of interesting points and thank you very much for your comments - hope that you are feeling better yourself. I'd like to address one of your comments where you say:
"And it would only take a moment for you to say:
Since getting HCV I have absorbed as much information as possible about the virus, the treatments and all of the signs, symptoms and side effects of the virus and the treatment. I understand about labwork, and know what labwork results can mean."
Did that - pretty much exactly that - even tried to make sure that I deferred to her "professional" status. The response I received was not what I expected. Anytime I pull up lab results she poo-poos them away as not meaning anything (which I interpret to mean that she doesn't really know what they mean.)
She makes unwarranted assumptions and conclusions. Case in point: She asks about my symptoms and I tell her about the extreme tiredness that had me taking off work4 days a couple of weeks ago. She immediately responds , "That's because you aren't drinking enough water - you need to drink more!" Notice that she never asks me "how much water are you drinking?" first.
I inform her that "I make it a point to specifically drink a minimum of 75 oz of water a day and most days it reached 100 oz. I know this because the water bottles that I use are marked 25oz and I drink 3 to 4 of them a day. " She looks abashed and shrugs a bit as if to say, "oh..." and has nothing more to say. I've exhausted her knowledge base when it comes to reasons for "tiredness". She's a compendium of knee-jerk, simplistic responses that appear to be born more from repetition and convenient one-liners than any actual study or understanding. In short she's probably qualified to give out cold medicine and (maybe) antibiotics - but treating Hep C? Don't think so. She is the PRIMARY care person for that entire clinic - one of 2 devoted to the treatment of HCV.
I show her my lab tests for the past 3 years , refer her to the ALT levels which halved in the first 3 weeks of treatment and went to normal for the very first time in 3 years of testing. She tells me the numbers "don't mean a thing because they go up and down all the time". I believe that she sees numbers go up and down all the time and doesn't really understand the significance of them and hence her answer. sorry , but lowered levels to normal the first time in 3 years and occurring after 3 weeks of treatment DOES mean something. They might go up again, sure but SOMETHING positive is happening. But the P.A. isn't aware enough to see that.
There's more and I am writing them down and documenting them for others to look over but the bottom line is that some treating providers are incompetent and frankly, a P.A. with two years of training does NOT have the innate, nor learned, ability to correctly treat this very complex disorder. Heck, even a General Practitioner does not have such training - that's why we seek out trained G.I's and other specialist.
I intend to make (force) a change in that regard in the next 6 weeks - want things to settle down a bit before I force that hand.
My opinion to anyone here just starting treatment - if you have ANY other choice - if any other choice is POSSIBLE for you, do NOT accept treatment from anyone less than a specialist DOCTOR in this field. Physician Assistant's and Nurse Practitioners do NOT have enough training to make adequate decisions regarding HCV treatment.
"How about the many people who do not have the internet or the knowledge to be able to do what we are doing here? "
They're screwed.
Marcia, you live in the Netherlands, which is a very civilized and socially aware country. Welcome to my country. Many here envy you and where you live.
And my having complained means really zero - the administrators are all AWARE that the care is substandard. They simply do not care. It's all about keeping your own job and your OWN health care. And by the way - in a recent study I saw on HCvets.org , over 85% of ALL V.A. employees do NOT use the V.A. system for their own health care - they use the outside insurance.
They're screwed.
Marcia, you live in the Netherlands, which is a very civilized and socially aware country. Welcome to my country. Many here envy you and where you live.
And my having complained means really zero - the administrators are all AWARE that the care is substandard. They simply do not care. It's all about keeping your own job and your OWN health care. And by the way - in a recent study I saw on HCvets.org , over 85% of ALL V.A. employees do NOT use the V.A. system for their own health care - they use the outside insurance.
I'm glad to hear that something happened, even though the care they are providing is still long from satisfying. I am just thinking of all the people who do NOT have your knowledge. Not everyone has the privilege to be able to educate themselves like we do. How about the many people who do not have the internet or the knowledge to be able to do what we are doing here? They should be able to get just as good a treatment. If you hadn't screamed and hollered, you would have gotten nothing out of it and a failed tx on top of that. She should be ashamed of herself for having treated you and probably a lot of other people the way she did/does. I hope she will learn her lesson from you having reported her.
Hugs, Marcia
Hugs, Marcia
Remember this Andromeda...
When you become infected with the disease - you become the expert in that field.
What the PA sees is thousands of diseases every week. And they have to know a "little" bit about that disease.
A hepatologist is narrowed down to just liver diseases.
Sometimes it is very difficult to know that you know more about what is going on than your doctor - and that the doctor would talk like they know more than you.
PAs are basically doctors without the extra 4 years of schooling - having gone through it usually as an EMT - Paramedic.
It's hard Andromeda - for them to see us as real people --- and it's hard for them to know everything when they see so many people.
They get into a rut sometimes --- just like we do ---- in our own jobs.
And it would only take a moment for you to say:
Since getting HCV I have absorbed as much information as possible about the virus, the treatments and all of the signs, symptoms and side effects of the virus and the treatment. I understand about labwork, and know what labwork results can mean. I have taken months to figure it out --- and I have been a really good student at studying it. You see so many patients with so many diseases, you probably haven't narrowed down your research to just "my" disease. But I have really worked at getting this information - So, if you have any questions or need to learn about HepC, I'll be glad to help you out - or help other patients out, if you'd like.
That lets them know that you are a capable patient --- and that they can turn to you - without feeling as if they have lost their "godhood" doctor status.
It gives you more authority - and provides them with a learning option or ---- even better... a challenge to learn more!
Just hang in there --- and YOU keep advocating for yourself.
Much love,
Meki
When you become infected with the disease - you become the expert in that field.
What the PA sees is thousands of diseases every week. And they have to know a "little" bit about that disease.
A hepatologist is narrowed down to just liver diseases.
Sometimes it is very difficult to know that you know more about what is going on than your doctor - and that the doctor would talk like they know more than you.
PAs are basically doctors without the extra 4 years of schooling - having gone through it usually as an EMT - Paramedic.
It's hard Andromeda - for them to see us as real people --- and it's hard for them to know everything when they see so many people.
They get into a rut sometimes --- just like we do ---- in our own jobs.
And it would only take a moment for you to say:
Since getting HCV I have absorbed as much information as possible about the virus, the treatments and all of the signs, symptoms and side effects of the virus and the treatment. I understand about labwork, and know what labwork results can mean. I have taken months to figure it out --- and I have been a really good student at studying it. You see so many patients with so many diseases, you probably haven't narrowed down your research to just "my" disease. But I have really worked at getting this information - So, if you have any questions or need to learn about HepC, I'll be glad to help you out - or help other patients out, if you'd like.
That lets them know that you are a capable patient --- and that they can turn to you - without feeling as if they have lost their "godhood" doctor status.
It gives you more authority - and provides them with a learning option or ---- even better... a challenge to learn more!
Just hang in there --- and YOU keep advocating for yourself.
Much love,
Meki
Have an Answer?
You are reading content posted in the Hepatitis Social Community
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
