yes, it doesn't seem to matter what country, age, gender or infection source we come from, we all have a pretty similar reaction to being told we have a potentially deadly disease. Especially as that seems to be when the waiting game starts.
So For what its worth, we all empathise with you and hope you can get hooked up to a hepatologist network soon.
Like Tig, I would be treating the sore lump as something else - the liver doesn't have any nerve cells and it's unlikely to be associated with hep C, but you deserve to know what it is. Pester your GP pronto.
Many of us suffer from anxiety and because the effects of hepatitis are so widespread and pains in the abdomen are frequent, it's easy to become over wrought about our symptoms.
At the same time being that "squeaky wheel helps enormously.
Its a juggling act. This forum has been tremendously helpful for me, firstly from an educational point of view and secondly as a place to journey with others on a road that can seem lonely and frightening. You will come to admire some special people, for each of us that group will differ, and in the end some of their bravery,acceptance and kindness rubs off on you.
Good luck.
Syd
Tig said
May 18, 2016
Hey Mark,
It doesn't matter how you were infected, honestly. The only people that do are the ones that don't know the first thing about it. I was either infected by a bunch of unsterile tattoos or in the Navy from blood contamination. Some were infected by IVDU, transfusions or a myriad of ways. We don't care. What we do care about is getting people educated and in treatment if possible. We also can help each other deal with the things life throws at us because of HCV.
If you haven't received a HCV RNA Viral Load test, you don't even know if you are infected yet. The test you had done is the antibody screen. 20-25% of the people infected with HCV are able to clear the infection on their own. The antibody test only indicates that you were exposed to HCV at some time in your life. We will all have a positive antibody test for the remainder of our lives, even when you are cured of the disease. We have had many people here that tested antibody positive and when they had the viral load test done, the results were undetected for Hep C. So you need to get that test done before you sell the farm.
There are many supplements out there that claim to be beneficial to the liver. Milk Thistle is another one that many people, including myself took for years before treatment. Some think it helps, others think you're wasting your money. I don't know enough about Selenium use and liver function to give you an opinion. I don't take anything anymore, because there was never any proof that I gained much from it. I often wondered if Milk Thistle slowed down the progression of my fibrosis and/or inflammation, but who knows. Some people never develop severe fibrosis from this, your mileage may vary. You need to have a fibrosis staging test done to determine the extent of that if and when you start treatment. There are a number of ways to do that and your doctor will advise you after your initial testing is complete.
The lump under your ribcage is something your GP should be able to determine prior to your July meeting with the Gastroenterologist. Who found the lump? I would think that a painful lump should be something they would want to investigate further. I darn sure wouldn't let them put me off if I could feel something like that!
Take a look around and start reading the various posts listed in our Homepage Index. If you want to try out our search function at the top center of each page, enter a keyword or two and you'll get a list of threads associated with them. We're not doctors, but informed past, current and future Hep C Warriors with plenty of miles behind us and we're all planning on many more. So welcome to the club, I'm glad you're here!
JimmyK said
May 18, 2016
Greetings,
In that it was just this past February that your were diagnosed that news is likely playing heavy on your mind. To have set an appointment for July indicates to me they do not sense an emergency type situation here. The comment regarding "nothing they can do" means it is simply not their specialty and if Hep C treatment were to be initiated, it would not come from a Hospital or a primary care physician.
There are many new treatment options and the prognosis is pretty good now days. There are a lot of tests to be run in order to determine the best path forward.
Read up on the Forum here and equip yourself with the right questions to ask and try not to worry so much. If you had to get Hep C now is the best time to deal with it.
Again, welcome!
JimmyK
Steampunk said
May 18, 2016
I'm not infected due to drugs I'm infected due to tattooist who used unclean equipment
Steampunk said
May 18, 2016
Thankyou tigg for your reply all I can say at this point is I was originally informed by my doctor that I had none alcoholic fatty liver disease and I altered my diet to hopefully help with this it was only through advice from a friend that I asked for blood test which came back positive for hep c, I have also had an ultrasound at the hospital I've not been given any viral load information or ultrasound test results I have to see a gastroenterology doctor in July I am suffering with aching joints mainly in my finger tips I have begun taking selenium tablets as I've researched the impact hep c has on the cells of the liver as the virus strips selenium from the cells and causes damage to the liver as a result selenium can be found in Brazil nuts or tablet supplement and research says that selenium support will slow the virus damaging the cells which can cause cirrhosis. The pain I'm suffering is quite bad and now I've noticed a lump just under my ribcage on the right which is painful to touch.
Pablito said
May 18, 2016
Welcome Mark
I'm in the UK too. The best way to get things through the NHS is to become what I call a "polite pest". You are entitled to treatment but, as you'll know, the whole system is overburdened with demand.
Contact one of the support groups, like the Hep C trust. Try and find out through your hospital's Patient Advice and Liaison Service if the wait to see the hepatologist is greater than the target they have been set to see new referrals (and there will be a target).
Where are you based? If you are in a city then you can consider changing your care to another hospital through the Patient Choice/Choose and Book system. Different hospitals have different demands depending on the population they serve.
I don't want to form any judgements, but are you plugged into any addiction service? Can they help? Some, like mine, have blood borne virus nurses embedded in their service. Do you see a psychiatrist for your depression/anxiety? Can they liaise with the hepatologist to speed up the referral? The wait is making your anxiety worse, etc. etc.
But most importantly: you are entitled to treatment with the new direct acting antivirals. As of the 1st of March this year the National Institute of Clinical Excellence (NICE) guidelines decree that anyone with HCV (in England and Wales) is entitled to treatment regardless of fibrosis stage...don't be afraid to quote these guidelines if you meet resistance, but do it in a nice (no pun intended!) way.
If you don't feel up to these things yourself ask an assertive friend or family member to assist you.
I know you are probably very frightened at the moment, but you are very lucky that for the first time ever there are now truly effective treatments for HCV that are relatively side-effect free.
Pablo
Tig said
May 18, 2016
Hi Mark,
Welcome! You found the right place Brother! Lots of great people here and we're all going to do our best to help.
First things first, don't worry about this. That's common to begin with, but it doesn't help. The whole process can start out pretty mind boggling, and we'll do our best to explain things and answer your questions. It's not unusual to have to wait to see a liver specialist. I'm not terribly familiar with your NHS, but we have members here that do and will be able to help you navigate that better. We have the same wait times or longer here in the States.
The pain, if it is your liver, is usually caused by the inflammation from the underlying disease (HCV). The liver itself doesn't have pain receptors, so it's not your liver that's hurting, it's the area around it and the supporting structures that hold it in place. As the liver swells, it causes the tissues with pain receptors to raise hell. That's generally why you present yourself to the doctor or ER and they find nothing really wrong. It would help if they would explain to people what I'm telling you now. You could be experiencing some gall bladder discomfort too. The large bowel loops up under the liver in this area and if you've been experiencing any digestive problems, it could be impacting you that way. This disease can cause many things to behave abnormally. Arthritis, joint and muscle pain, digestive disorder, abdominal pain, I could go on for awhile. Most of them are things that will improve greatly or altogether once you get treatment underway and stop this virus from causing any additional surprises.
Do you know anything about your condition? Have you had any blood tests or testing to determine what your Hep C genotype is, liver ultrasound or fibrosis stage? If not, that's what you will be finding out in July with your liver specialist.
In the meantime, you may have to start by adjusting your diet to see if that is causing some of your discomfort, it often can with this. Your physical activity may be irritating things a bit as well. Fill me in on what you know about this, what tests you've had done. I assume you must've tested positive for the Hep C Antibodies, but you'll need a HCV RNA Viral Load blood test done to determine if you have an active infection. Some people test positive to the antibodies but don't have the chronic infection.
So do your best to chill and don't let this drive you nuts. It's an easy process to deal with now, not like the old days. We have a lot of folks that will be along to welcome you in and I think allay some of your fears. So don't worry Mark, we'll get you through this!!
Steampunk said
May 18, 2016
I've been diagnosed with hep c in February and I've been in considerable pain I've been to hospital 3 times and discharged and I've been to see my doctor who told me that there's nothing else they can do I'm not scheduled to see the liver specialist until July and the pain I'm suffering is causing me concern and worry also I suffer with depression and anxiety which is aggravated by my condition and I don't know who or where to turn to for help and support.
Hi Mark,
yes, it doesn't seem to matter what country, age, gender or infection source we come from, we all have a pretty similar reaction to being told we have a potentially deadly disease. Especially as that seems to be when the waiting game starts.
So For what its worth, we all empathise with you and hope you can get hooked up to a hepatologist network soon.
Like Tig, I would be treating the sore lump as something else - the liver doesn't have any nerve cells and it's unlikely to be associated with hep C, but you deserve to know what it is. Pester your GP pronto.
Many of us suffer from anxiety and because the effects of hepatitis are so widespread and pains in the abdomen are frequent, it's easy to become over wrought about our symptoms.
At the same time being that "squeaky wheel helps enormously.
Its a juggling act. This forum has been tremendously helpful for me, firstly from an educational point of view and secondly as a place to journey with others on a road that can seem lonely and frightening. You will come to admire some special people, for each of us that group will differ, and in the end some of their bravery,acceptance and kindness rubs off on you.
Good luck.
Syd
Hey Mark,
It doesn't matter how you were infected, honestly. The only people that do are the ones that don't know the first thing about it. I was either infected by a bunch of unsterile tattoos or in the Navy from blood contamination. Some were infected by IVDU, transfusions or a myriad of ways. We don't care. What we do care about is getting people educated and in treatment if possible. We also can help each other deal with the things life throws at us because of HCV.
If you haven't received a HCV RNA Viral Load test, you don't even know if you are infected yet. The test you had done is the antibody screen. 20-25% of the people infected with HCV are able to clear the infection on their own. The antibody test only indicates that you were exposed to HCV at some time in your life. We will all have a positive antibody test for the remainder of our lives, even when you are cured of the disease. We have had many people here that tested antibody positive and when they had the viral load test done, the results were undetected for Hep C. So you need to get that test done before you sell the farm.
There are many supplements out there that claim to be beneficial to the liver. Milk Thistle is another one that many people, including myself took for years before treatment. Some think it helps, others think you're wasting your money. I don't know enough about Selenium use and liver function to give you an opinion. I don't take anything anymore, because there was never any proof that I gained much from it. I often wondered if Milk Thistle slowed down the progression of my fibrosis and/or inflammation, but who knows. Some people never develop severe fibrosis from this, your mileage may vary. You need to have a fibrosis staging test done to determine the extent of that if and when you start treatment. There are a number of ways to do that and your doctor will advise you after your initial testing is complete.
The lump under your ribcage is something your GP should be able to determine prior to your July meeting with the Gastroenterologist. Who found the lump? I would think that a painful lump should be something they would want to investigate further. I darn sure wouldn't let them put me off if I could feel something like that!
Take a look around and start reading the various posts listed in our Homepage Index. If you want to try out our search function at the top center of each page, enter a keyword or two and you'll get a list of threads associated with them. We're not doctors, but informed past, current and future Hep C Warriors with plenty of miles behind us and we're all planning on many more. So welcome to the club, I'm glad you're here!
Greetings,
In that it was just this past February that your were diagnosed that news is likely playing heavy on your mind. To have set an appointment for July indicates to me they do not sense an emergency type situation here. The comment regarding "nothing they can do" means it is simply not their specialty and if Hep C treatment were to be initiated, it would not come from a Hospital or a primary care physician.
There are many new treatment options and the prognosis is pretty good now days. There are a lot of tests to be run in order to determine the best path forward.
Read up on the Forum here and equip yourself with the right questions to ask and try not to worry so much. If you had to get Hep C now is the best time to deal with it.
Again, welcome!
JimmyK
Welcome Mark
I'm in the UK too. The best way to get things through the NHS is to become what I call a "polite pest". You are entitled to treatment but, as you'll know, the whole system is overburdened with demand.
Contact one of the support groups, like the Hep C trust. Try and find out through your hospital's Patient Advice and Liaison Service if the wait to see the hepatologist is greater than the target they have been set to see new referrals (and there will be a target).
Where are you based? If you are in a city then you can consider changing your care to another hospital through the Patient Choice/Choose and Book system. Different hospitals have different demands depending on the population they serve.
I don't want to form any judgements, but are you plugged into any addiction service? Can they help? Some, like mine, have blood borne virus nurses embedded in their service. Do you see a psychiatrist for your depression/anxiety? Can they liaise with the hepatologist to speed up the referral? The wait is making your anxiety worse, etc. etc.
But most importantly: you are entitled to treatment with the new direct acting antivirals. As of the 1st of March this year the National Institute of Clinical Excellence (NICE) guidelines decree that anyone with HCV (in England and Wales) is entitled to treatment regardless of fibrosis stage...don't be afraid to quote these guidelines if you meet resistance, but do it in a nice (no pun intended!) way.
If you don't feel up to these things yourself ask an assertive friend or family member to assist you.
I know you are probably very frightened at the moment, but you are very lucky that for the first time ever there are now truly effective treatments for HCV that are relatively side-effect free.
Pablo
Hi Mark,
Welcome! You found the right place Brother! Lots of great people here and we're all going to do our best to help.
First things first, don't worry about this. That's common to begin with, but it doesn't help. The whole process can start out pretty mind boggling, and we'll do our best to explain things and answer your questions. It's not unusual to have to wait to see a liver specialist. I'm not terribly familiar with your NHS, but we have members here that do and will be able to help you navigate that better. We have the same wait times or longer here in the States.
The pain, if it is your liver, is usually caused by the inflammation from the underlying disease (HCV). The liver itself doesn't have pain receptors, so it's not your liver that's hurting, it's the area around it and the supporting structures that hold it in place. As the liver swells, it causes the tissues with pain receptors to raise hell. That's generally why you present yourself to the doctor or ER and they find nothing really wrong. It would help if they would explain to people what I'm telling you now. You could be experiencing some gall bladder discomfort too. The large bowel loops up under the liver in this area and if you've been experiencing any digestive problems, it could be impacting you that way. This disease can cause many things to behave abnormally. Arthritis, joint and muscle pain, digestive disorder, abdominal pain, I could go on for awhile. Most of them are things that will improve greatly or altogether once you get treatment underway and stop this virus from causing any additional surprises.
Do you know anything about your condition? Have you had any blood tests or testing to determine what your Hep C genotype is, liver ultrasound or fibrosis stage? If not, that's what you will be finding out in July with your liver specialist.
In the meantime, you may have to start by adjusting your diet to see if that is causing some of your discomfort, it often can with this. Your physical activity may be irritating things a bit as well. Fill me in on what you know about this, what tests you've had done. I assume you must've tested positive for the Hep C Antibodies, but you'll need a HCV RNA Viral Load blood test done to determine if you have an active infection. Some people test positive to the antibodies but don't have the chronic infection.
So do your best to chill and don't let this drive you nuts. It's an easy process to deal with now, not like the old days. We have a lot of folks that will be along to welcome you in and I think allay some of your fears. So don't worry Mark, we'll get you through this!!