Just had my swine flu and booked next week for seasonal flu. I don't intend to get the "real" flu lol. Thought it would be good to get all that out of the way before I start.
I think the waiting is the worse part. I'm sure everything will be fine once I get going. The thought of things is always worse than the actual. I hope.
Ah, Jan- all of us were scared to start treatment. Everyone has reservations, fears, etc; only because it's all the unknown and we read stories of others experiences and see all the "negatives", thinking the worst.
No one will ever truthfully state that treating for any disease is a pleasurable experience- it's not. But, it's not always that bad, either- I reckon it to having the flu for 48wks. Of course, some experience rougher side effects, but all of them are for the better part, manageable.
Only you can find that frame of mind that will put you into "warrior" mode, the drugs are going to be doing much of that battle, but much of this will depend upon your determination to beat it out.
Normally, the first few weeks are the worst, your body will get used to the drugs and things will even out a bit- just remember, for most of us, this treatment is doable, you're not being "infused" with cancer chemo drugs (egads, I think they are worse, really) and you'll settle into the routine of it all.
I'll be thinking of you and you keep us posted on how you are feeling about it all.
Sorry to hear about your appointment. Sadly, it is not the first time i have heard of blood results either being done wrongly/or not being there for the appointment. I think that whether fibroscan/ultrascan's are done is largely down to your pct (primary care trust). Different areas seem to have different protocals. The quantity of prescribed drugs would not be based on liver damage tho, so don't worry about that.
I can only empathise with you because we expect to get some answers at these appointments and don't really need setbacks, as you have enough to deal with already. Hope your next appointment is more beneficial, and that it is soon!! Hugs Heather xxx
Can anyone do their job right? These people are supposed to be professional and my life is in there hands - God help me. The first blood tests done were done wrong so had to be re-done. My appointment yesterday was a waste of time because can u believe they had not got my blood test results there. I have waited nearly a month for this appointment. So more blood tests done and I'm back where I started, waiting on blood test results. I was also told that because my liver looked o.k on the ultra sound scan that I would not need to have a fibroscan. I am going to request one next time I see the specialist because from what I have read on many sites the extent of fibrosis cannot be seen with just an ultrasound scan. The last thing I want happening is to be given the wrong qauantity of drugs.
At the moment I feel very disappointed in the so called specialists. Looks like I will have to keep a check on everything they do and I'm no expert.
More waiting for me then. I really wanted to get started on tx soon. Oh well, patience is a vertue seldom found in women, never in men.
I wouldn't have thought so Jan, like green tea myself.
__________________ Started TX on Jan 07 , Genotype 3a. PCR obtained in July 07. SVR reached Feb 5th 08, B cool and B tough . - Lau http://lauriebluesguy.blogspot.com/
On a personal note, I'm having issues with the swine (H1N1) vaccine on a grander scale- huge shortage and now they've reverted to the "old" way of growing the vaccine in eggs again.
I don't know how many of you remember the swine influenza scare in the mid-70's that the CDC/WHO pushed for everyone to get vaccinated for and we saw Guillain-Barre Syndrome hit the headlines shortly after- the pandemic never hit, yet a secondary world-wide problem arose- and I do know of someone personally that did get affected with GBS. She got the vaccine as a child, ended up partially paralyzed (she's in her late 30's now).
And another alert from the UK, written in August which comments about the "rush" to produce here in the US, which is scary in itself..... Yes, media coverage about the shortages and people waiting in long lines is freaky- like a mass panic.
It's a personal call and I wouldn't advise for it or against it. I personally will not be getting it, did get my "regular" flu shot and for the first time EVER, reacted horribly for 24h to the vaccine. From what I have gathered, the uh, normal flu vaccine was made up with 3 different strains- and some people do in fact have mild reactions. Mine wasn't that mild, IMO- because I've never reacted to one in 15 years.
Yes, I get one every single year.
All I can attribute the adverse reaction to is that something has indeed changed within my immune system since I treated 2 years ago. I'm not eligible for the H1N1 vaccine and maybe that is a good thing- I probably have the antibodies at this point anyway.
For those of you that have not treated and cleared, I would not only discuss this with your doctor, but research the heck out of it online. Google is a wonderful tool.
What is note-worthy is the fact that most of these newer strains of influenza do affect more young people than old, simply because we have built up immunities- but the questions does remain- those that with impaired immune systems might not fair as well, though. It is a very personal choice, whether you want to get the vaccine or not.
Good luck with your appointment. With regards to the swine flu vaccination, there seem to be mixed views about it. Here is a link that i hope will help you to make your mind up.
Hi everyone. Hope you are all good. I was just wondering if I should be vaccinated against swine flu. I would have thought it advisable if I am starting treatment soon. Does anyone have the answer. I will be seeing the specialist in a couple of weeks and will ask him then.
Good that you've got your initial appointment, even though it seems like ages away
There's a lot of waiting involved in this Hep C journey, so try and get as well informed as possible, beforehand. A good thing to do is to compile a list of questions that you want to ask at your appointment - it's really easy to forget things when you're there!
Here are a couple of links that should help you with this:
Hi Jan, Glad to hear that you have an appointment and hope you get a good , well informed doctor who will answer all your questions. I'm still waiting for the last lot of test results to start tx , I've been waiting over 18 months , though part of the delay was my choice. I still think that we are very lucky when I see the statistics for the numbers of people infected in third world countries who will never get the option of tx, many of them are children infected during inocculation against other illnesses; it could have been so easily prevented for the cost of sterilised needles ( they used the same one's on all the children ). It's great that your daughter is studying this subject, to help you and all the others who come after us, as there can be no doubt it is a growing epidemic . Re my ex-dentist : I can never know 100 per cent that he is responsible - like most of us, I don't know how long I've been infected and over the years I've had several minor operations, or it could have been a kitchen knife or a scratch . What I do know is that he was knowingly taking that risk with his patients' lives. I have a friend ( also his patient ) who is infected with the same genotype as me , and she now has a seriously damaged liver (done two years of tx but non- responder) , and another friend (also his patient) who contracted Hep B and C at the same time but recovered spontaeously ( she has the antibodies ). I know this is not evidence , but visiting that dentist is the sole known risk that we took , and he was not breaking the law !!! Best of luck to you .
__________________ ! EXCELSIOR ! ONWARDS AND UPWARDS ! MEDUSA
Hey Medusa that was very interesting and quite unbelievable. My daughter was a 1st year medical student and was vaccinated for everything and anything, tested for this and for that but can u believe not Hep C amazing.
I am going to phone today about my appointment with the Hep C clinic. I should have heard by now but with the postal strike who knows where my appointment is. I really want to get tx started. The sooner the better. Back to my daughter again, she may be doing Hep C in relation to liver cancer for her dissertation. She had a lecture on hep C yesterday and another 2day. Nothing I don't know already but maybe something new today. I think the better informed I am the more I can understand what is happening.
It's a beautiful autumn moring here so more dog walking.
Hi Everyone, Just want to pass on a warning about french dentists, as I'm almost sure that's how I caught the virus. In 2003 I asked my dentist if he had an autoclave class B , after assuring me that he had, he admitted that he hadn't and said that anyway he wasn't obliged to sterilise by french law . I checked this out with a lawyer , and found out that he was right . In France at this time, it was reccomended but not obligatory for dentists to sterilise against Hep B & Hep C. I telephoned 40 other dentists in my area, and could not find a single one who used an autoclave class B (at the time the only known method of killing the Hep virus's) , in fact many of the dentists and their assistants seemed completely ignorant of the risk. I talked to my liver specialist about this in 2008 when I found out I had Hep C , he wasn't suprised and confirmed that sterilisation was not obligatory in France up until 2007 ; he is not sure if it is now, in 2009. French government statistics I have seen estimate that there are now 6 percent of the french population infected with Hep C .(most of these don't know yet) I have at last managed to find a good dentist , who is aware of the risk, and sterilises against it. My advice to everyone is ask your dentist if they use an autoclave class B. I have heard that there is now some chemical on the market that will kill the Hep virus's, but have not been able to find out any more about it. Do any health professionals out there know about this?
__________________ ! EXCELSIOR ! ONWARDS AND UPWARDS ! MEDUSA
At the moment I don't feel like I can face the dentist and the work isn't urgent - I don't mind being gummy for a while longer. Something to look forward to - gummy and bald lol
When I have conquered this virus I will feel more in control and able to confront him (although I hate confrontation) You would like to think he would have a more professional approach. Maybe he is just bloody ignorant.
That is good news about being geno 3...i know that sounds daft, but you know what i mean!!
Re. the dentist, it is pretty shocking the attitude some take, because if they were using good practice, they would be ensuring that hep c was not an issue...to anyone. How many people are treated by dentists (with hep c), but just don't know it...
Anyway, as Gail says, it is usually suggested that any dental work be done before tx. So if it is not something you want to consider (or need) at the moment, then perhaps leave it until after tx. Either way, i hope he has a better attitude, and/or you find a good dentist!!
Hi Jan, As far as dental work, I remember reading that if you needed any done, do it BEFORE you started treatment.
As far as your dentist and your fear that he is discriminating against you, I would simply make the appointment, get in there and discuss this with him. He has no reason to worry, they do use precautions (heck, years ago, dentists help spread disease just as much as anyone else if you think about it) and..... after 25 years of your loyalty and money, he needs to answer your question(s):
1. Is there a problem? 2. Are you going to discriminate against me? and if he is, 3. Do you need to find another dentist? (I'd seriously pose these questions) 4. Is the dental work mandatory now, or can you wait till you are done with tx.
I told my dentist, right after my diagnosis I had to get some dental work done- I told the dentist. He asked me, "How did you get it?", I said, "Good question". He did his job, I went on my way- but not without an attitude and that was just the start.
I got very confrontational when I got stupid questions if I said something to someone (I live in a very small, tight rural community). Every time someone asked me, "how did you get THAT?", I'd reply with a "How did you get stupid?" Followed by, "Would you ask someone how they managed to get cancer?"
It is depressing enough to learn you have the disease, not to mention the stupid stigma that is attached to it- and "fight" is everything- don't get down, don't be alone, because you aren't.
You don't have to tell others "how" or "why", the fact is, you do have the disease, you're going in for the battle of your life and to heck with what others think-
I ended up having neurosurgery a year post-tx- I told the surgeon that I had treated and cleared- he was really cool about it and simply said, "We always take precautions, no matter what". And that should be the attitude with your dentist, if not the behavior alone (taking precautions).
Geez, it's not like influenza and it's spread by a sneeze. You tell him I said that!
Just touching base. Hope all you on tx are doing well and those waiting are being patient and not worrying too much. I am trying to keep busy to take my mind off things. Both girls are back at uni now and my husband travels alot with work. So as the song goes - This big old house gets lonely.
Recently I have stopped working out. I loved running too but at the moment can't seem to get motivated. Still play golf, which by anyones standards isn't too strenuous lol. Love walking the dog for miles. Hope she will see me through the rough times on tx.
Before I found out I had Hep C I was seeing my dentist about having implants to fill a few gaps lol and had been to see him 3 times. He said he would be back in touch aroung end august. When I found out about the Hep C my husband told him and since then I havn't heard from him. Can dentists refuse to treat you? I have been with him for 25 years. At the moment I don't feel upto speaking to him. I think I would rather wait and see when I start tx. I don't think I could face implants at the moment anyway.
Someone with some technical knowledge will come along in a minute and answer it fully, but if someone remains undetectable for a period of time (usually 6 months after treatment) then it's considered dead by most Doctors.
Someone will give a better description with better medical knowledge than me, but I believe that to be the case.
Lau
__________________ Started TX on Jan 07 , Genotype 3a. PCR obtained in July 07. SVR reached Feb 5th 08, B cool and B tough . - Lau http://lauriebluesguy.blogspot.com/
good news about your daughter - cool. Your scan sounds good too. Post your blood results as you get them. Look in the knowledge base for the type of things they will ask for, and to get a background to what it all means.
It's going to be good.
Lau
__________________ Started TX on Jan 07 , Genotype 3a. PCR obtained in July 07. SVR reached Feb 5th 08, B cool and B tough . - Lau http://lauriebluesguy.blogspot.com/
Congrats on your daughter passing her re-sit at university...Great news!
Maybe you will have a different strain of Hep C and only have to do the 24 week treatment.
I am starting week 38 (on Monday) of a 48 treatment regime. (started out with 8 million copies per unit of viral load pre treatment and in 4 weeks of treatment I dropped to 59 (over a 5 log drop) and then was undetectable) It has been a long haul but is doable providing the sides don't get the better of you. Keeping on top of your side effects and treat them medically if needed can be the difference of you staying on treatment. Having a good relationship with your Dr and hep nurses really help as well to get you through .
This forum has been wonderful with lots of advice and helpful hints to help you through it. Lots of support and encouragement.
I can see a light at the end of the tunnel now. Back in January I thought how am I going to get through or get to the summer (a season I love so much) as you have to be careful in the sun (with this treatment), I would be fatigued, etc...but here we are mid September . It went by very fast. I was careful in the sun (lots of sun screen) and didn't stay out in it too too long so it was enjoyable. The warmth felt good on my achy joints for sure.
I inject on Mondays, so I don't feel great on Tuesdays and Wednesdays but start to feel somewhat better Thurs, and not so bad Fri-Sunday. Lots of fatigue, and I have memory lapses (to be expected) but I just laugh at myself when I have those.
Only 10 more weeks yea!!!....I have been very lucky that I didn't have to work. I work for a company where I was granted short and long term medical disability. I should go back to work mid January I think and am looking forward to it. Not working has helped me while on treatment as I have a hard time getting up in the A.M. before 10:00 and I am an early riser.
Anyway, good for you for starting treatment....With this forum, and a good relationship with the clinic/hepatologist/nurses, etc, you should be able to address any issues you have which psychologically and medically will help you for sure....
Just looked at your profile. Are you still on treatment and if so how's it going. I don't know which genotype I am yet but with an educated quess I think it will be 1.
Good new's daughter No.1. passed her re-sit so back to uni with her sister soon.
Everything in the garden is rosy except for this bloody virus. More news on Friday. I'm keeping everything crossed.
Sounds like you are well on your way to start treatment. Goods news about your scan. It must make you feel a little better knowing all things are good in the abdomen!!
Had my ultra sound scan yesterday. Liver good, kidneys good, pancreas good, stomach good, gall bladder good (small stone).
If it wasn't for the Hep C I would be in perfect working order. Another appointment with the specialist a week on Friday. He will have all the blood results. So another step towards treatment, I hope.
as MC says - thank your lucky stars and focus on your treatment - it's important you get clear for your family. - So - new focus - new determination.
Excellent news.
Lau
__________________ Started TX on Jan 07 , Genotype 3a. PCR obtained in July 07. SVR reached Feb 5th 08, B cool and B tough . - Lau http://lauriebluesguy.blogspot.com/
Fantastic news. Both my girls are clear of the virus. I don't care so much about what happens to me now.
Does anyone know if this could mean that I did'nt have the virus when I was pregnant. I would have thought it highly likely that if I had it then that they would have got it.
Last night didn't realy tell me anything I didn't already know. Now I'm waiting for a CT scan. All those years of drinking red wine, uppps. Too late now, even so I have not touched a drop since knowing.
So, another few weeks of waiting and praying.
One point of interest he said was that within 2 years there will be a new drug available which is 60% more likely to work on genotype 1. Thats much better odds than the 40% chance we have now. With better results if it is the first treatment.
Hi Jan, Everything will fall into place exactly as it should and meant to be- just remember that this disease is treatable, there is a very good chance you will get through it all and come out of it just fine. All your emotions and thoughts right now are quite normal and yes, waiting is very difficult.
You are on the path now to getting treated and there are more tests to obtain before you get the "treatment plan", just take it all a day at a time, don't project and if you have any questions, just ask- no question is considered to be stupid or will be dismissed. So many of us here have been down that road and were carrying the same questions and feelings you are experiencing at this time, so you do have a lot of empathy surrounding you!
I found out about the virus donating blood too, it's a strange way of finding out, but I was grateful to have found out before getting ill.
It's a shock, but one we DO come to terms with. We are all stronger than we know, and this disease can at times bring out the best in us.
Welcome,
God bless,
Lau
__________________ Started TX on Jan 07 , Genotype 3a. PCR obtained in July 07. SVR reached Feb 5th 08, B cool and B tough . - Lau http://lauriebluesguy.blogspot.com/
Things like this have a way of making you and your love ones even closer. At 1st it is shocking but they love you and will be there for you. The same as you would be for them.
__________________ We don't need no stinkin' dragons >:o www.myspace.com/_the_word_
Thanks for all the encouragement. Just looked at your profile to see that you beat it. That's great.
Hope I can do the same. My moods are up and down at the moment. Sometimes thinking where I would like my ashes scattered then other times determined to fight it till the end. In the meantime life goes on.
More will be revealed on Thursday.
Thanks again for writing and supporting me. Think I'm going to need it.
I think I must have had this virus for over thirty years. It sounds unbelievable. No one found it before. Amazing. Even though my blood test said my liver is functioning normally, after that amount of time a hell of a lot of damage must have been done.
Hi Jan, It is not uncommon for most of us to have been infected for as long as you have- I too, was infected for at least 30 years, sick for 10 of those years and was tested/treated for everything under the sun other than a simple Hep Screen- and my liver panels were normal, too. But, don't worry about a lot of "liver damage"- even for the length of time I was carrying the disease, I was still grade 1, stage 1. I also never really drank much alcohol, but I did my fair share of drugs and the last 10 years before I was diagnosed, I was on a number of prescription medications to alleviate symptoms that the HCV was causing, which at the time, was unknown to my doctor and other specialists I kept getting sent to.
Also, HCV really goes after the immune system, so I developed severe allergies- and for 2 years, I was treated for those allergies, serum shots for a year to "get me used specific allergens" and put on steroids. Which really increased my viral load. By the time I was finally diagnosed, my liver enzymes were slightly elevated and a Hep Screen was done- the next test was a quantitative viral load, which I was up to 87mil, which I was told was quite high- but it fluctuates for some odd reason.
By the time I got into Mayo Clinic and had all my preliminary testing (ultra sound of the liver, biopsy, more blood work), my viral load was up to 89mil.
What has occurred, emotionally speaking- is you've basically been given news that is as shocking as hearing the word, "cancer". You are going to go through all the same stages of "grief" as anyone else that is diagnosed with serious illness. No one will be able to tell you or guide you though the process it takes to get to the acceptance stage and get your game on to "fight". All we can do here is support you, give you the information, share our experiences with treatment and hopefully share some things we went through that are somewhat funny, during our time on treatment.
As far as your children are concerned- I don't blame you for worrying, because my husband did use my razor at times and so far he seems quite healthy after 19 years of being together. I've worried off and on for some time, because the simple facts if intimacy, sharing razors, etc; but my husband is lacking his spleen, due to it being removed when he was a teen (he had Hodgkin's disease), so he does not fight viruses and bacteria as well as most of us do- but he's not shown one sign of possible infection of HCV. And, no- he has not been tested, yet- after what I went through and what we have on our plates here (we farm), he just isn't ready to get tested and possibly have to endure treatment.
IF your children get tested and are positive, you must remember NOT to blame yourself- right now, you need to focus on getting you on the road to healing and take this journey a day at a time. It will be very difficult for you not to worry about your children and the possibility they are infected, but try to focus on you at the moment and getting to treatment, getting through that and clearing the virus, then take on what is necessary to insure they are negative.
Part of this entire journey of healing and ridding yourself of the virus is a matter of "unloading" your plate and preparing for the crappiest vacation of your life- so just focus on you, continue to think positive and "beating the virus" out of your system.
The worst bit is they don't know anything yet. How are they going to take it.
There will be some normal shock in learning about it, but I will be willing to bet you that they are going to be more concerned for their mother than for themselves at this point. It sounds as though they are getting good educations and growing up in a healthy manner- so give them the benefit of a doubt- they will probably be more supportive of you than you ever dreamed possible. You spent many years raising them up, taking care of them to get to the point that they are becoming successful, productive adults and now you will have to allow everyone that is close to you to "take care of you" and that is very difficult for those of us that have been taking care of others most of our lives. Your parenting skills will pay off now and you should allow that to occur- have some faith in the values you instilled in them and just simply be honest with those that are close to you.
You will get through this, for it appears that you are in a stable situation, you're well on your way to getting the treatment you need and much has to be done to determine how long you will treat, etc.
You will get a ton of information here from this site and all of us are going to be right here with you!
Can't even go there at the moment. If I think I can't stop. Like, all those times they have used my razor and all the times they came out of the shower with blood pooring from their legs, having been non to careful. Like most teenagers.
The worst bit is they don't know anything yet. How are they going to take it. One of them is reading pathology and micro biology at uni so she will be well aware of the consequences.
This is a living nightmare. But on a more possitive note we will all do what it takes to beat this thing.
Welcome aboard. I found out around 10 years ago and had had it around 5 years when I found out.
I was a single mother then and would freak out about the smallest things. My kids were young and didn't understand. If one would take a sip from a drink that I had sitting on a table I would totally freak and feel like the worst Mom in the world. If I cut myself while cutting veggies; oh man it was like I needed a hazmat team to come in. I would throw out the veggies (of course) them scrub the cutting board and knife like there was no tomarrow then bleach it all then runn through the dish washer. I am still like that LOL.
I have developed certain habits such as I never leave a used razor by the tub (even though my kids are grown and I live alone LOL. My 12 year old neice might visit and decide to use it, I don't know.
I just know that the thought of giving this to a loved one is unbearable. It's ok to be over protective though. It's ok to be scared.
It will all work out.
__________________ We don't need no stinkin' dragons >:o www.myspace.com/_the_word_
That's reasuring to know that both your children tested negative. I know now what you were going through. I pray that mine are going to be o.k. It's the waiting and not knowing.
I think I must have had this virus for over thirty years. It sounds unbelievable. No one found it before. Amazing. Even though my blood test said my liver is functioning normally, after that amount of time a hell of a lot of damage must have been done. Oh well, know more on Thursday I hope.
Thanks for the positive response, it has given me hope for my kids,
Hi (again) Jan. Wish your daughter well with her re-sits. Also with both their tests. It is worrying. I had both my son and my daughter tested after i found out and thankfully, they were both negative.
It is quite usual for people to have had the virus for many years before they are diagnosed, and this should not affect your chances of a successful treatment (tx) outcome.
Good luck with your appointment and i hope you do feel more informed afterwards. We are a friendly bunch here and glad you are with us. Hugs Heather xxx
I think that whether fibroscan/ultrascan's are done is largely down to your pct (primary care trust). Different areas seem to have different protocals. The quantity of prescribed drugs would not be based on liver damage tho, so don't worry about that. 
but is doable providing the sides don't get the better of you. Keeping on top of your side effects and treat them medically if needed can be the difference of you staying on treatment. 
Having a good relationship with your Dr and hep nurses really help as well to get you through . 
