I guess that I haven't sorted out my thoughts at this point. Too early in the process. I did speak to my Doctors assistant today. My next appointment is August 11. I will actually start the medication one or 2 weeks after that appointment.
I am really plagued by constant joint and muscle pain and lethargy these days. I should just be grateful that a cure is available today. I am 62 and if I can get 20 more years with decent health and energy that will be a good thing.
Totally do able ,,,, you may need an oil change but you got plenty of miles left on you.
We are all in this together Keep your stick on the ice. (Red Green Show)
Thom said
Jul 12, 2014
I guess that I haven't sorted out my thoughts at this point. Too early in the process. I did speak to my Doctors assistant today. My next appointment is August 11. I will actually start the medication one or 2 weeks after that appointment.
I am really plagued by constant joint and muscle pain and lethargy these days. I should just be grateful that a cure is available today. I am 62 and if I can get 20 more years with decent health and energy that will be a good thing.
Huey said
Jul 11, 2014
I get it ,, Thom
You tell the truth and nobody responds to this as you expect. I like to say that sometimes I am too honest for my own good. If you give someone too mutch information they may use it against you. I speek what is on my mind and I don't mind the disadvantage it gives me. I would rather have cleared those thoughts and moved on.
We are all in this together Keep your stick on the ice (Red Green Show)
-- Edited by Huey on Friday 11th of July 2014 07:42:18 AM
Thom said
Jul 11, 2014
Isiscat2011 wrote:
Hi Thom:
Illness and disease are not usually contemplated much by the healthy unless they work in the medical profession. Even then it is extremely difficult for the healthy to really understand how disease impacts one personally. Hepc is particularly difficult for the uninfected to understand, because we usually look healthy, even with cirrhosis if our livers are still compensating.
I have found that most people (who have a vested interest) process the information of your hepc on two levels: one is genuine concern for your well being and the other is how your disease might impact their lives. Everyone feels both of these things but to different degrees. That is just human nature. Naturally, people who are dependent on you will also be concerned for themselves. But that doesn't mean they don't care about you. Even people who really love you are not necessarily equipped to cope well with another's illness. For understanding what living with hepc feels like nobody understands as well as others who are in the same boat.
Hopefully you don't have significant liver damage but keep in mind that the virus itself causes damage irrespective of whether you have been a drinker or not. The damage progresses at different rates for different people depending on a whole host of factors. While alcohol/drug use is certainly a negative factor there are many other negative factors that we have no control over such as our genetics and our immune systems.
You will find many others here who are knowledgeable and caring and understand just what you are going through. Welcome.
I typed out a lengthy reply to this post and it disappeared.The same thing happened when I typed a reply to Mallani. I hope that won't be a regular problem here because I am a one finger typist.
As you indicated, most people are only interested in what I can do for them, and many haven't really listened at all to what I have told them and ask the same questions over and over.
As I expect to be functioning on a very limited basis for a few months during treatment and expect to lay low, I felt that I owed people an explanation and as I am essentially honest, I thought that it would be best to tell the truth.
What bothers me is that a couple of people have expressed that they believe that I have contracted a sexually transmitted disease and that I have placed the life of my wife of 37 years in danger.
It has also been said that I can pass this through any bodily fluids like HIV and now I must be very careful around all people in general.
It is ignorant attitudes like this that make me regret that I told anyone at all.
This is a partial recap of what I posted and lost, but that's all my one figer can do now.
Thom said
Jul 11, 2014
mallani wrote:
Hi Thom,
Welcome. Try to get your biopsy results. If you're cirrhotic, you will need 24 weeks of Sovaldi/Peg/Riba or you may consider waiting for Sovaldi/ Ledipasvir.
Good luck.
I go back to the Internist on August 10th and I expect to walk out of that appointment with prescriptions to start taking. He told me to go and do anything that I wanted to get done as I would be to sick once I start treatment. He said that as I have had the virus for decades that there was no reason to rush to begin treatment. I expect that the Doctor would contact me if the biopsy results were bad, but I don't expect that to happen because I haven't done anything to overwork my liver since the 1980's. I also can't assume that my insurance will cover new all oral treatment if the cost goes up. They already rejected the Doctor's first choice of interferon and I have to use another type.
mallani said
Jul 10, 2014
Hi Thom,
Welcome. Try to get your biopsy results. If you're cirrhotic, you will need 24 weeks of Sovaldi/Peg/Riba or you may consider waiting for Sovaldi/ Ledipasvir.
Good luck.
Fireman Rob said
Jul 10, 2014
Welcome Thom,
There are excellent treatment options that are coming and they don't involve interferon. With your genotype, it's definitely worth exploring the current and soon to be, all oral combos.
Good luck and keep us posted.
-Rob
jimbob said
Jul 10, 2014
Nice post Isis about the attitudes, feelings and reaction of the uninfected. I know this sounds hypocritical but I have tried to place myself in their shoes and began to realize I might feel the same way. Especially when I've known people in the past that have shunned others for various reason. We don't feel that way because we have it, and we're educated about it - but family and others?
And welcome Thom to a great forum.
-- Edited by jimbob on Friday 11th of July 2014 01:05:43 AM
Isiscat2011 said
Jul 10, 2014
Hi Thom:
Illness and disease are not usually contemplated much by the healthy unless they work in the medical profession. Even then it is extremely difficult for the healthy to really understand how disease impacts one personally. Hepc is particularly difficult for the uninfected to understand, because we usually look healthy, even with cirrhosis if our livers are still compensating.
I have found that most people (who have a vested interest) process the information of your hepc on two levels: one is genuine concern for your well being and the other is how your disease might impact their lives. Everyone feels both of these things but to different degrees. That is just human nature. Naturally, people who are dependent on you will also be concerned for themselves. But that doesn't mean they don't care about you. Even people who really love you are not necessarily equipped to cope well with another's illness. For understanding what living with hepc feels like nobody understands as well as others who are in the same boat.
Hopefully you don't have significant liver damage but keep in mind that the virus itself causes damage irrespective of whether you have been a drinker or not. The damage progresses at different rates for different people depending on a whole host of factors. While alcohol/drug use is certainly a negative factor there are many other negative factors that we have no control over such as our genetics and our immune systems.
You will find many others here who are knowledgeable and caring and understand just what you are going through. Welcome.
Huey said
Jul 8, 2014
Welcome New Guy,,
We are all in this together Keep your stick on the Ice, (Red Green Show)
Doni said
Jul 8, 2014
Hello from Dubai!
I am as new as you are, but probably got infected recently, and also willing to start this trio treatment unless I decide to wait for the new combo.
Joint pain, fatigue - it started bothering me last year. I used to work from 9 am to 1 am non stop and never felt tired. Now I am getting exhausted by 6 pm. And this is really affecting my life. So more or less I get what you are saying. Wish you soonest recovery from this nasty disease!
Matt Chris said
Jul 7, 2014
Hey Thom
Welcome to the forum from me as well, you have found a good place with caring people that give insightful knowledge on all things HCV.
Good to hear that you are scheduled for treatment , BTW did your doctor happen to mention about Gileads new all oral combo treatment due to be available in Oct 2014 ?
matt
Groupergetter said
Jul 7, 2014
Thom, you've come to a great place. Folks here understand what you're going through. Most like you have been dealing with this disease for years. The knowledge, experience, and willingness to share, make this a great forum. Good luck in your treatment.
hrsetrdr said
Jul 7, 2014
Thom, welcome to the forum. Here you will find people that can relate to your situation, and who are knowledgable and supportive. Please keep us posted on your upcoming treatment and progress.
Thom said
Jul 7, 2014
Hello everyone- I was made aware that I am HCV positive in September 2013. I will start treatment in August of 2014. I will get Interferon,Ribavarin and Solvaldi for 3 months. I have likely been infected since the early 70's. I have bad joint pain and fatigue which rises and falls in severity. Nobody seems to understand the situation among the people that I have told. They just seem concerned about what I can do for them.I have genotype 1. I have recently had a liver biopsy but don't know the results, but I expect no cirrhosis as I don't drink alcohol or use drugs. I quit that stuff in my 20's and am now 62. I quit smoking in 1999.
I am feeling adrift, without direction and hope that I can learn something and get focused on this site.
Totally do able ,,,, you may need an oil change but you got plenty of miles left on you.
We are all in this together Keep your stick on the ice. (Red Green Show)
I guess that I haven't sorted out my thoughts at this point. Too early in the process. I did speak to my Doctors assistant today. My next appointment is August 11. I will actually start the medication one or 2 weeks after that appointment.
I am really plagued by constant joint and muscle pain and lethargy these days. I should just be grateful that a cure is available today. I am 62 and if I can get 20 more years with decent health and energy that will be a good thing.
I get it ,, Thom
You tell the truth and nobody responds to this as you expect. I like to say that sometimes I am too honest for my own good. If you give someone too mutch information they may use it against you. I speek what is on my mind and I don't mind the disadvantage it gives me. I would rather have cleared those thoughts and moved on.
We are all in this together Keep your stick on the ice (Red Green Show)
-- Edited by Huey on Friday 11th of July 2014 07:42:18 AM
I typed out a lengthy reply to this post and it disappeared.The same thing happened when I typed a reply to Mallani. I hope that won't be a regular problem here because I am a one finger typist.
As you indicated, most people are only interested in what I can do for them, and many haven't really listened at all to what I have told them and ask the same questions over and over.
As I expect to be functioning on a very limited basis for a few months during treatment and expect to lay low, I felt that I owed people an explanation and as I am essentially honest, I thought that it would be best to tell the truth.
What bothers me is that a couple of people have expressed that they believe that I have contracted a sexually transmitted disease and that I have placed the life of my wife of 37 years in danger.
It has also been said that I can pass this through any bodily fluids like HIV and now I must be very careful around all people in general.
It is ignorant attitudes like this that make me regret that I told anyone at all.
This is a partial recap of what I posted and lost, but that's all my one figer can do now.
I go back to the Internist on August 10th and I expect to walk out of that appointment with prescriptions to start taking. He told me to go and do anything that I wanted to get done as I would be to sick once I start treatment. He said that as I have had the virus for decades that there was no reason to rush to begin treatment. I expect that the Doctor would contact me if the biopsy results were bad, but I don't expect that to happen because I haven't done anything to overwork my liver since the 1980's. I also can't assume that my insurance will cover new all oral treatment if the cost goes up. They already rejected the Doctor's first choice of interferon and I have to use another type.
Hi Thom,
Welcome. Try to get your biopsy results. If you're cirrhotic, you will need 24 weeks of Sovaldi/Peg/Riba or you may consider waiting for Sovaldi/ Ledipasvir.
Good luck.
Welcome Thom,
There are excellent treatment options that are coming and they don't involve interferon. With your genotype, it's definitely worth exploring the current and soon to be, all oral combos.
Good luck and keep us posted.
-Rob
Nice post Isis about the attitudes, feelings and reaction of the uninfected. I know this sounds hypocritical but I have tried to place myself in their shoes and began to realize I might feel the same way. Especially when I've known people in the past that have shunned others for various reason. We don't feel that way because we have it, and we're educated about it - but family and others?
And welcome Thom to a great forum.
-- Edited by jimbob on Friday 11th of July 2014 01:05:43 AM
Hi Thom:
Illness and disease are not usually contemplated much by the healthy unless they work in the medical profession. Even then it is extremely difficult for the healthy to really understand how disease impacts one personally. Hepc is particularly difficult for the uninfected to understand, because we usually look healthy, even with cirrhosis if our livers are still compensating.
I have found that most people (who have a vested interest) process the information of your hepc on two levels: one is genuine concern for your well being and the other is how your disease might impact their lives. Everyone feels both of these things but to different degrees. That is just human nature. Naturally, people who are dependent on you will also be concerned for themselves. But that doesn't mean they don't care about you. Even people who really love you are not necessarily equipped to cope well with another's illness. For understanding what living with hepc feels like nobody understands as well as others who are in the same boat.
Hopefully you don't have significant liver damage but keep in mind that the virus itself causes damage irrespective of whether you have been a drinker or not. The damage progresses at different rates for different people depending on a whole host of factors. While alcohol/drug use is certainly a negative factor there are many other negative factors that we have no control over such as our genetics and our immune systems.
You will find many others here who are knowledgeable and caring and understand just what you are going through. Welcome.
Welcome New Guy,,
We are all in this together Keep your stick on the Ice, (Red Green Show)
Hello from Dubai!
I am as new as you are, but probably got infected recently, and also willing to start this trio treatment unless I decide to wait for the new combo.
Joint pain, fatigue - it started bothering me last year. I used to work from 9 am to 1 am non stop and never felt tired. Now I am getting exhausted by 6 pm. And this is really affecting my life. So more or less I get what you are saying. Wish you soonest recovery from this nasty disease!
Hey Thom
Welcome to the forum from me as well, you have found a good place with caring people that give insightful knowledge on all things HCV.
Good to hear that you are scheduled for treatment , BTW did your doctor happen to mention about Gileads new all oral combo treatment due to be available in Oct 2014 ?
matt
Thom, you've come to a great place. Folks here understand what you're going through. Most like you have been dealing with this disease for years. The knowledge, experience, and willingness to share, make this a great forum. Good luck in your treatment.
Hello everyone- I was made aware that I am HCV positive in September 2013. I will start treatment in August of 2014. I will get Interferon,Ribavarin and Solvaldi for 3 months. I have likely been infected since the early 70's. I have bad joint pain and fatigue which rises and falls in severity. Nobody seems to understand the situation among the people that I have told. They just seem concerned about what I can do for them.I have genotype 1. I have recently had a liver biopsy but don't know the results, but I expect no cirrhosis as I don't drink alcohol or use drugs. I quit that stuff in my 20's and am now 62. I quit smoking in 1999.
I am feeling adrift, without direction and hope that I can learn something and get focused on this site.
Thanks, Thom