Aa
New Here
Hi--we've been lurking for quite some time and find your support and enthusiasm to be the best. Neither my wife nor I know all the acronyms, so please be patient with us.
Today my dr finally said I would be ready to go through HCV treatment, now that it appears the pancreatic insufficiency issue has been resolved, She pooh-poohed my wife's questions about when we should be considering applying for disability, saying there was no need to do so because "he might only get a slight rash", and then stated firmly there really was no need to start treatment (unless I insisted), since my liver biopsies showed only minimal damage/inflammation and my liver functions were in the normal range last testing. My wife has been force feeding me milk thistle daily, which might account for part of that. In any case, getting a really bad feeling about this dr practice (which is highly regarded in NE Florida) and considering moving treatment to Mayo Clinic, where I hope people can remember things. The last time I saw my surgeon (for an endoscopy), he appeared utterly clueless about what procedure he was there for, which was quite upsetting.
I am very sx--terrible night sweats, chronic fatigue to the point where I can easily sleep 20 hours a day, cognition impairment which varies from day to day,daily severe migraine type headaches, and issues regarding my cervical spine, which appears to be deteriorating along with the rest of me. (retired military, which may be where much of this comes from). Additionally, it now appears I have chronic pancreatitis, and something weird going on with my thyroid fluctuating wildly from one end of the spectrum to the other. After three years on non-treatment and my health and functioning going steadily downhill, I'm feeling very strongly if I'm ever going to be able to function normally again, this virus needs to be eradicated from my body ASAP. Any thoughts?
Does this sound like a doctor that can treat the "whole person" ? After the appointment today, I let her start setting things up with INS, but I'm seriously thinking I need to find someone more sympathetic to go through treatment with. Just bad bad vibes here.
My stats:
VL: 15,000,000
geome 1a
liver biopsy 1/1
Today my dr finally said I would be ready to go through HCV treatment, now that it appears the pancreatic insufficiency issue has been resolved, She pooh-poohed my wife's questions about when we should be considering applying for disability, saying there was no need to do so because "he might only get a slight rash", and then stated firmly there really was no need to start treatment (unless I insisted), since my liver biopsies showed only minimal damage/inflammation and my liver functions were in the normal range last testing. My wife has been force feeding me milk thistle daily, which might account for part of that. In any case, getting a really bad feeling about this dr practice (which is highly regarded in NE Florida) and considering moving treatment to Mayo Clinic, where I hope people can remember things. The last time I saw my surgeon (for an endoscopy), he appeared utterly clueless about what procedure he was there for, which was quite upsetting.
I am very sx--terrible night sweats, chronic fatigue to the point where I can easily sleep 20 hours a day, cognition impairment which varies from day to day,daily severe migraine type headaches, and issues regarding my cervical spine, which appears to be deteriorating along with the rest of me. (retired military, which may be where much of this comes from). Additionally, it now appears I have chronic pancreatitis, and something weird going on with my thyroid fluctuating wildly from one end of the spectrum to the other. After three years on non-treatment and my health and functioning going steadily downhill, I'm feeling very strongly if I'm ever going to be able to function normally again, this virus needs to be eradicated from my body ASAP. Any thoughts?
Does this sound like a doctor that can treat the "whole person" ? After the appointment today, I let her start setting things up with INS, but I'm seriously thinking I need to find someone more sympathetic to go through treatment with. Just bad bad vibes here.
My stats:
VL: 15,000,000
geome 1a
liver biopsy 1/1
Welcome to the forum.
By all means get a doctor you trust and who is knowlegable.
The first time I treated it was with a doctor who didn't know what he
was doing. Fortunatley, the forum questioned his practices and I made it out
alive. Seroiusly, make sure you have a Hepatologist who specializes in
Hep C. Don't settle for a gasrto doc who's trying to make a little extra money or
wants to get started with treating Hep C. If you have problems an inexperienced
doctor won't know how or what to do. It is critical you see a specialist that you
feel has the knowledge base and compassion to treat you effectively. Especially,
the knowledge. Treatment can be difficult and you need the best doctor you can
find.
By all means get a doctor you trust and who is knowlegable.
The first time I treated it was with a doctor who didn't know what he
was doing. Fortunatley, the forum questioned his practices and I made it out
alive. Seroiusly, make sure you have a Hepatologist who specializes in
Hep C. Don't settle for a gasrto doc who's trying to make a little extra money or
wants to get started with treating Hep C. If you have problems an inexperienced
doctor won't know how or what to do. It is critical you see a specialist that you
feel has the knowledge base and compassion to treat you effectively. Especially,
the knowledge. Treatment can be difficult and you need the best doctor you can
find.
Jasmine, unfortunately I already understand FMLA and the entire ridiculousness of the disability process. Due to the incapacitating headaches and abnormal fatigue, I have been on intermittent FMLA for a couple of years now.
I made a decision when my health fell apart to be totally honest with my employer, which turned out to be one of the best decisions I have made. They have been extremely supportive about my health issues, and offering extra services through my health insurance such as nursing support and case management. Unfortunately, the support people do not understand HCV and are scrambling, but they are at least another resource. I am really grateful to have an employer who is supportive, but I'm quite aware this support will not last forever!
I made a decision when my health fell apart to be totally honest with my employer, which turned out to be one of the best decisions I have made. They have been extremely supportive about my health issues, and offering extra services through my health insurance such as nursing support and case management. Unfortunately, the support people do not understand HCV and are scrambling, but they are at least another resource. I am really grateful to have an employer who is supportive, but I'm quite aware this support will not last forever!
Don't know, really. Three years ago, everything was good, and then it rapidly went downhill. As far as we know, I've had this nasty little HCV for 35+ years, so maybe it was just its time to show.
Jules-
Been through counselors both through the VA and private sectors, along with a neuro psycho-social. They have all decided depression or PTSD is not part of my problem set, probably due to the excellent care I get from my wife, who is extremely supportive. That may be why this is so difficult-three years ago, I was healthy, took no medication and was looking forward to middle/old age. Then this all struck and it's been a roller-coaster of disaster since then!
Been through counselors both through the VA and private sectors, along with a neuro psycho-social. They have all decided depression or PTSD is not part of my problem set, probably due to the excellent care I get from my wife, who is extremely supportive. That may be why this is so difficult-three years ago, I was healthy, took no medication and was looking forward to middle/old age. Then this all struck and it's been a roller-coaster of disaster since then!
I am a newbee too but I think I can now say welcome to the forum. It has been invaluable for me. Since you say you've been here for a while you may have seen this post already but if you haven't - here is what the HectorSF advice in a post.
Hector I hope its ok - I copied your post just in case - so appropriate to threepaddle's question...
The physician job is to communicate to the patient at a level the patient can understand. Patients come from all walks of life and all personalities. Some patients want to know and understand everything about their condition and many prefer to know as little as possible and they just trust to doctor to "know what they are doing" and treat them.
I believe their are two major aspects to being a good doctor.
First, they need to have the expertise and experience to understand the test results, make a diagnosis and then help the patient manage their illness whether through lifestyle changes, different therapies including medicines, and in the worse case palliative care or some combination of the above. That is why a person with a serious illness should see a specialist in the field of their illness. This is why we recommend seeing a gastroenterologist or hepatologist for someone with hepatitis and liver disease.
Secondly, a doctor needs to be able to communicate to the patient enough information so the patient can understand the nature of their condition and the options available to them. This is sometimes called "good bedside manner". As I said we are all individuals with different needs, so what my be appropriate for me may not be appropriate for you. The doctor needs to assess each patient and communicate at the correct level. Also it depends on the seriousness of the disease. A patient who is seeing a doctor for a temporary minor condition will have an entirely different level of communication with their doctor than a patient that has a life-threatening illness.
In my opinion a good doctor is one the has both qualities. Expertise in the field and empathy and compassion for the patient.
The other very important component in the relationship is us, the patients. We partner with our doctors for their medical knowledge and expertise. We need to be proactive and advocate for ourselves. If we have questions we must ask our doctor and get an answer we can understand. We should not expect the doctor to read our minds. We are paying for their services and therefore should get the services we desire and need. As easy as it is to blame the doctor, we need to step up to the plate and be involved in our diagnosis and treatment if we want to have the best outcome.
Of course if our doctor is unable to meet our needs medical or emotional we should look elsewhere (2nd opinion) for a doctor that we can communicate with.
Millie
NYC
Hector I hope its ok - I copied your post just in case - so appropriate to threepaddle's question...
The physician job is to communicate to the patient at a level the patient can understand. Patients come from all walks of life and all personalities. Some patients want to know and understand everything about their condition and many prefer to know as little as possible and they just trust to doctor to "know what they are doing" and treat them.
I believe their are two major aspects to being a good doctor.
First, they need to have the expertise and experience to understand the test results, make a diagnosis and then help the patient manage their illness whether through lifestyle changes, different therapies including medicines, and in the worse case palliative care or some combination of the above. That is why a person with a serious illness should see a specialist in the field of their illness. This is why we recommend seeing a gastroenterologist or hepatologist for someone with hepatitis and liver disease.
Secondly, a doctor needs to be able to communicate to the patient enough information so the patient can understand the nature of their condition and the options available to them. This is sometimes called "good bedside manner". As I said we are all individuals with different needs, so what my be appropriate for me may not be appropriate for you. The doctor needs to assess each patient and communicate at the correct level. Also it depends on the seriousness of the disease. A patient who is seeing a doctor for a temporary minor condition will have an entirely different level of communication with their doctor than a patient that has a life-threatening illness.
In my opinion a good doctor is one the has both qualities. Expertise in the field and empathy and compassion for the patient.
The other very important component in the relationship is us, the patients. We partner with our doctors for their medical knowledge and expertise. We need to be proactive and advocate for ourselves. If we have questions we must ask our doctor and get an answer we can understand. We should not expect the doctor to read our minds. We are paying for their services and therefore should get the services we desire and need. As easy as it is to blame the doctor, we need to step up to the plate and be involved in our diagnosis and treatment if we want to have the best outcome.
Of course if our doctor is unable to meet our needs medical or emotional we should look elsewhere (2nd opinion) for a doctor that we can communicate with.
Millie
NYC
The symptoms you are experiencing could get a lot worse with the current treatment now on the market. I would think this through very carefully before taking the plunge. I am not sure that you could actually take an interferon based treatment with an unstable thyroid functioning matter of fact.
My frist treament I had a Doc that was a real A..h... believe me it made for long. 48 wks..... the Drs I have now are so nice . It really makes a difference. They go out of their way to be helpful.
Welcome to the forum ...I have to agree with all of the above...you will find this forum to very of great help in many ways stay strong and best wishes
Hi Curt, Welcome to the forum. I also have stage 1. I decided to treat rather than wait for a number of reasons. I had been struggling for years with many of the annoying symptoms of chronic hep c and did not know that was the cause. Things had slowly been getting worse and I felt it would continue. Maybe treating would help. I had insurance, a stable job, and felt well enough to handle it. I researched my geno, viral load, stage etc against trial results and thought my chances were high for eRVR, a 24 week tx and svr.
After having been on this forum for a while and if I were considering starting now, I think I might research and consider an all orals trial as an option too. Not sure I would make a different decision but if I found the right thing and it was low risk to messing up future options to treat, low side effects, and looked promising, I might give it a try first.
I have doubts that milk thistle actually does anything of value from what I could find. If you treat i would guess you should probably not be on it. You don't know that it might not interfere with the meds. In fact do you know it's not causing issues now?
You should research fmla and disability but hopefully you will not have to execute. You could lose your job, you need to read the rules carefully. I do not believe you can get approved for disability just because you treat. I think it would take serious side effects documented by your doc or issues over time showing there is an ongoing problem also documented by your doc.
I have no regrets, yet, and hope it stays that way. It's hard on triple and there is some risk. I am on week 20 and still working (desk job) no fmla or disability, yet. Very low on sick leave. Its hard but possible for many. Researching options and talking to others will help you know you are making the right choice. Best wishes.
After having been on this forum for a while and if I were considering starting now, I think I might research and consider an all orals trial as an option too. Not sure I would make a different decision but if I found the right thing and it was low risk to messing up future options to treat, low side effects, and looked promising, I might give it a try first.
I have doubts that milk thistle actually does anything of value from what I could find. If you treat i would guess you should probably not be on it. You don't know that it might not interfere with the meds. In fact do you know it's not causing issues now?
You should research fmla and disability but hopefully you will not have to execute. You could lose your job, you need to read the rules carefully. I do not believe you can get approved for disability just because you treat. I think it would take serious side effects documented by your doc or issues over time showing there is an ongoing problem also documented by your doc.
I have no regrets, yet, and hope it stays that way. It's hard on triple and there is some risk. I am on week 20 and still working (desk job) no fmla or disability, yet. Very low on sick leave. Its hard but possible for many. Researching options and talking to others will help you know you are making the right choice. Best wishes.
Welcome!
I'd go with your feeling and switch docs.
I wonder why you are so symptomatic since your biopsies show minimal damage?
The Mayo clinic sounds like a good choice.
Good luck,
OH
I'd go with your feeling and switch docs.
I wonder why you are so symptomatic since your biopsies show minimal damage?
The Mayo clinic sounds like a good choice.
Good luck,
OH
In any case, getting a really bad feeling about this dr practice (which is highly regarded in NE Florida) and considering moving treatment to Mayo Clinic, where I hope people can remember things."
Welcome to the forum. The most important thing is that you are comfortable with your doctor and believe he is well trainned in this disease. Many of us had to go through treatment with doctors, that quite honestly, knew less than we did about the disease and it get infuriating (unless you get lucky like me and get a doctor that will listen to you and your insight that you learned here :)
If you have minimal damage you do have the luxury of deciding to wait to see if the all orals pan out or of course you do have the choice to treat now with the current medications. It really depends on your own personal situation.
As a geno1 your odds are much better these days than years ago when a lot of us treated - that being said, treatment isn't an easy thing to do for many so it's crucial you understand there might be more than just a slight rash.
Doctors...go figure.....
Good luck.
Welcome to the forum. The most important thing is that you are comfortable with your doctor and believe he is well trainned in this disease. Many of us had to go through treatment with doctors, that quite honestly, knew less than we did about the disease and it get infuriating (unless you get lucky like me and get a doctor that will listen to you and your insight that you learned here :)
If you have minimal damage you do have the luxury of deciding to wait to see if the all orals pan out or of course you do have the choice to treat now with the current medications. It really depends on your own personal situation.
As a geno1 your odds are much better these days than years ago when a lot of us treated - that being said, treatment isn't an easy thing to do for many so it's crucial you understand there might be more than just a slight rash.
Doctors...go figure.....
Good luck.
I agree with jules find a doctor you are comfortable with and welcome to the forum
Hi Curt! welcome to the forum. Just from reading your post it sounds like you "could" wait for better treatments to come along. Possibly an all oral regime without INF. But...I am NOT a doctor and this has to be your decision. If you are not comfortable with your Dr., you have a bad gut feeling, then you should definitely change physicians. I just wonder if you have PTSD from the military or other things going on. Possibly some depression in the mix also. If i were you I would find a Dr who listens to YOU so maybe you could at least get rid of the sx before you start a treatment regime.
There are some very knowledgable pros on here so I will let them chime in with the statistics and so forth. Good luck in your decision making and once again...welcome to the forum!
Jules
There are some very knowledgable pros on here so I will let them chime in with the statistics and so forth. Good luck in your decision making and once again...welcome to the forum!
Jules
Welcome to the forum here is a link to commonly used acronyms
http://www.medhelp.org/health_pages/Hepatitis/Hepatitis-C-Acronyms-Abbreviations/show/3?cid=64
http://www.medhelp.org/health_pages/Hepatitis/Hepatitis-C-Acronyms-Abbreviations/show/3?cid=64
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