Hepatitis C Treatment Personal Stories and Experiences
These stories were shared by those living with Hepatitis C with the hope of reaching out to others with Hep C for a shared experience and comfort in a time of need. If you would like to share your HCV story with others, please email me here and include your name or initials as you would like it.
Gloria Adam's Hep C Story- First Treatment
One of the side effects of the Hep C virus is brain fog or who knows, maybe it really is just good old age setting in fast; but, lots of times I canít put exact dates on things that have happened on this journey. But, to the best of my memory, this is the way the story unfolds.
Back in late 2001 Iíd thought for a very short time that perhaps I should look at some Wage Loss Insurance because I was self-employed. Pretty quick, Iíd seen that wasnít one of my best thoughts; but didnít have time to cancel the appointment with the nurse that was sent to get some of my blood. As it turned out, she couldnít get it anyway and was convinced that it was the poor lighting in my office. So she rushes me off to one of our local blood clinics. Well, that technician was even worse than the nurse and after nearly butchering both my arms finally got enough to fill a tube. Good thing, I was going to tell her that I knew some people that were just down the street that could come and get it and teach her in the meantime.
Then, just before New Yearís, I get a call from this Insurance Agent telling me that Iíd failed the medical. I said, ďmy blood pressure was too high that day wasnít it?Ē Considering a sister-in-law had just had a heart attack earlier that morning. No, she says, didnít I know that I had Hepatitis C. Not only was that question shocking but if I knew I had Hep C, why would I be trying to get insurance? But, of course, I wasnít about to believe those bumble brains from that clinic and henceforth made an appointment with my Doctor. He assured me that he figured it was probably correct but that, of course, they would do a second test.
When that also came back positive, I spent the next 3 months in shock, trying to figure out when I could possibly have been infected. I knew lots of people with the virus; but I didnít meet the usual criteria to even be sent in for a test. However, once the diagnosis was confirmed then the Drs. try to tell you that even if you have only tried intravenous drugs once in your life, that could have been the time. To me thatís like saying Ė WE REALLY DONíT KNOW AND DONíT HAVE ENOUGH INFORMATION YET, SO WE JUST TAKE THE GOVERNMENTS STANCE ON IT AND THEY HAVE ENOUGH PEOPLE SUING THEM FOR TAINTED BLOOD SO THEYíRE NOT TAKING MUCH OF A STAND ANYWAY.
In the end, that Dr. tended to agree with me wholeheartedly, that I could not possibly have had the virus for close to 40 years, likely it was correct that I was infected by an ex-partner who had just pierced his ear with a piercing gun and then immediately pierced mine. But, what did we know back in 1986? Who knew anything about a Hepatitis C in 1986?
So, I spent about the next 2 years trying to ignore the fact that I had the unseen and mostly unfelt virus, even to the point that I seldom even got my blood work regularly.
In the fall of about 2003, I was convinced to buy into one of those network marketed, all natural products that was supposed to magically clear my system of the virus. Figured, if it did what it proposed for me, then I sure had a ready made group of people all around me that it would work for too. So, in early 2004, off I go to visit my Dr. to learn what great and wonderful news he was going to have for me. All he tells me, is that one of my liver readings came back high and the other had dropped a bit. So, I asked why that was?? Instead of explaining it, he then tells me that he thinks itís time to go and see the specialist! So, for the next 6 months, I wait to talk to the big guru that was going to answer my question and in the meantime, I have these women calling from a Liver Society to prepare me for even more blood work. At this point, Iím still thinking that this specialist is just going to answer the question, why were my ALT and AST scores bouncing.
In the middle of that wait, my mother and I decide to take a trip to Central California together, because, even though it was just before tax season, who knows how much longer I would have with my beautiful mother? So, one of those special blood tests had to be put off until we got back and then went right into getting taxes done. Who knew and ever would come close to thinking, that my health was a lot more precarious than my mother who is 19 years older than me.
By the time Iím finally about to see this specialist for the very first time, I doubted the reading from that test would be back to him; but, turned out that was OK because he just wanted to set up a Liver Biopsy and have all his information together.
So, now comes an even bigger shock than the first one !! He tells me that my Liver Biopsy shows that my liver had already deteriorated to a level 3 out of 4. That means, that my liver was full engrossed in fibrosis and leading to cirrhosis. Of course, I couldnít help but think to myself Ė and I stayed sober for 18 years but my liver was still failing anyway?? I also then understood the words, To Drink is to Die. If I had not quit drinking when I did, even though I had no idea, I would not have lived long enough to tell this story.
The day that I got that news from the specialist was absolutely shocking to me!! My little father who has to walk with a cane, had come to meet me at that office. When I came out of the little room after talking to the specialist, the only thing that was on my mind was how bad I needed a smoke. Well, thereís my little dad, toddling along behind me and talking up a storm. So, we get outside of the door, I light a smoke and then look at my dad and say, ďboy was that ever incredibly bad news!Ē Now this is funny Ė his face absolutely drops and heís looking around and I know that heís wishing for a miracle at that point, which would be that my mother somehow, magically could replace him!! I drive him home and boy, cane and all, could he ever get into that apartment and down to my mother before I hardly got in the place.
Next came several more visits with the nurses from the North Island Liver Society and plans were being put in place quickly for me to go onto the ďTreatmentĒ. At that time, that meant a once a week needle that I had to prepare and give myself, of a medication that some say is Chemo like therapy (Interon). It also meant taking pills several times a day called Ribavirin. Personally, the worst side effects I thought I had from this regime was not the weight loss Iíd prayed for; but, hair loss that I didnít need. Then there was the skin itch from head to toe. It could drive you nuts! Finally, I learned from an article from a Dr on the Internet about good old Petroleum Jelly and my life became manageable again. There was the time when my Thyroid went so out of whack that I was acting like one of those crazy old ladies. That was the point my mother decided she was coming to work everyday, to help keep my small business intact. There is a test that has to be done at the 12th week level that is looking to find if the meds are actually working enough for the powers (who ever they are) to believe that it is truly in fact, reducing the viral load.
Obviously, I passed and went on for 48 weeks. YEAH, AT LEAST GIVE ME A STAR OR A BALLOON RIGHT? NOT!!!!! Had to have another one of those PCR tests that would hopefully show that the virus was out of my system. IT WAS NOT !!!! The thinking is now, several years later, that it mutated somewhere between the 3rd month on and I was left what we commonly call a Non-Responder. In fact, even while I was on that round of meds, the percentage of people actually responding was dropping off quite quickly and now I believe that weíre lucky if itís at 50% now.
Gloria Adams' Second Treatment
So, what next for a Non-Responder? ABSOLUTELY NOTHING!!!!! The best we could hope for is that they devise another round of meds that might work, or that at the very least, the meds you just completed backed off a good deal of the fibrosis. Only problem is, the medical system seem to be loath to do any other kind of testing including
the horrible Liver Biopsy, so how would anyone know anyway. Then, there is the fact that neither doctors nor pharmaceutical companies nor researchers have been able to publish very much about ďwhatís nextĒ because they just donít know. You just know that you could be waiting for the new meds being currently tested (I was reading about them), but could then develop liver cancer or all kinds of other awful things OR your liver just may up a quit altogether. BUT THEY JUST DONíT KNOW!!!
Unfortunately, I also realized within the month of ending the medications that something else was wrong. Turned out that I had developed a very good case of Fibromyalgia which has meant that I can hardly navigate any stairs, canít walk for more than a half a block and especially my legs tire very easily. Well, there is no cure for that one either, so again you just do what you can and leave the rest.
At this point, Iíll tell you that I certainly did not look sick and so I believe, most people found it difficult to believe that I actually was. I didnít even really want to know how sick I might be in fact. So, I joined a chat group on line and began to try to research Hep C from wherever I could get information. We call it the Silent Epidemic because very few governments or health professionals are willing to admit how wide spread this disease really is. Iíve seen quoted figures that put it anywhere between 6 and 10 times, more people actually have Hep C than AIDS/HIV. To some degree, itís those that are infected or have beaten it, that are the worst enemies. They still are afraid of the stigma and therefore will not come out of hiding. (Kinda reminds me of drunks that thought no one knew about their drinking). However, the stigma some people have been afflicted with, forces them to keep silent, lest they loose their jobs. Well, I simply challenge the stigmatization!! I will not keep silent even if it means that some people in my life are offended. They are not the ones that have been struck with a chronic disease that has no cure for it and takes the old you, and molds it into
it into an entirely different version than you ever thought could happen.
I also found during the next couple of years, that I was feeling more and more emotional and that it didnít sit well with my personality. I knew that I was angry and resentful that some of those drug addicts ďspontaneouslyĒ got rid of the virus; however, intellectually I wouldnít wish this on my worst enemy. I was still angry about having it at all. Just didnít make sense! So, I did a few sessions of counseling and between that and a new pair of ears at a few meetings, finally learned that I was in fact going through a stage of grieving. Boy did that ever free me to be just the best I could be today and not feel I constantly had to explain anything to anyone.
Ho Ho, then it gets even more chaotic. Ok, now Iím all set at this point to just simply accept ďlife on lifeís termsĒ when that comedian that sits as my Higher Power decides to really have some fun. He/She has done this several times in my life; but this time did it really good.
Letís see, it all started at about 10:30 one Wednesday morning here in January 2009. I get a call from a nurse from the North Island Liver Society. She says, ďWould you be interested in a Clinical Trial that is just about to begin and is geared towards previous Non-RespondersĒ. Oh, oh I answer, Iíll have to think about that and talk to my husband. I wasnít sure I was ready to be sick for another year! She says that I wouldnít have long to think but ok, let her know. So, I figured maybe it was time to go and get my donation of 3 vials of blood done, that my specialist here had ordered up in December.
While Iím there and just as they are pulling out the needle, my cell phone rings which is extremely unusual considering I very seldom have it with me. Well, lo and behold itís the Liver Society to tell me that apparently, Vancouver needs my answer immediately, like 15 minutes ago and that she had spoken with my husband and he said I was doing it. So now, I would have to phone Vancouver and let them know. Next thing I know, I have an appointment for 10:00 on the Friday morning and the run is on because this clinical trial is done at Vancouver General Hospital and I live at least 5 hours away and includes traveling on a ferry.
Now, left to my own devices, I probably would have said that I would wait because I knew that this particular medication was going to be available in approximately two years and Iíd be ready to quit work by then. Well, you know how you should never question the Higher Power? Here was another example. First of all, after they did my liver biopsy. I saw that ugly report that shows that my liver had gone from a 3 out of 4, to a 4 out 4, which meant it was cirrhotic. It also means, we have no idea how much of my liver is actually left alive that Iíll get to live on. At some point, they want me to go for a CT Scan because there is also some kind of growth on my liver they donít like, as well as a smaller one on my kidney. Oh and by the way, the cost of this treatment when it does hit the health services is going to be twice as much as the previous one, so doctors, nurses nor we that are inflicted, can see where the Medical System is going to want to cover this any day soon. Could be held up for years!
So, my life has taken another whole different direction again. The Clinical Trial began in February 2009, so again, back to the once a week needle, the twice daily swallowing of three Ribavirin PLUS another set of pills (two each time) three times a day. However, those three times daily pills, were only for the first four months. If not for my husband, I would never have made it through the regime. Honestly, some days I forget if Iím supposed to take two or three Ribavirin and have to ask him. Along with another form of learning to live with chronic disease, you get to have erratic moods swings and for me anyway, the biggest is my sensitive side. I feel quite often that Iím ready to cry for absolutely no apparent reason and go through a lot of ďpeople donít really careĒ you know!! Actually, I am really learning that that is a fact! They donít really want to know anything, it just makes them uncomfortable. Even when they ask the question, they hardly ever wait for the answer Ė so Iím just used to saying ďfineĒ now. Thatís family or friends. It teaches me that I donít ever want to be that kind of friend Ė I want to mean it when I ask someone how he or she is and then take the time to listen to the answer.
One of the most dangerous side affects of the medications, to try to beat this dragon, is depression! Iíve found that some people are just to be avoided at all costs. Anyone that has a negative impact on any part of your life, need to be weeded out as soon as possible. They become very dangerous to your own personal well-being. Stress also needs to be avoided in every possible way. Even in between rounds of treatments, I found that if I got too stressed (which I used to be used to), Iíd probably have to stay in bed the next day because exhaustion had set in then.
So, my story still has a while to go before I hopefully can shout, that Iím finally a Hep C Survivor. Then, my dream is to go right on and be involved with Hep C sufferers!! I want to be there as support and an advocate, to help others walk their own path through this disease. I also want to be very involved in bringing this Silent Epidemic out into the light, so that the millions of others across this world that are suffering, will know that they are not alone!! I know that terrifying loneliness even with people all around you, because you simply can not slow your mind down from fear of what news might still be coming.
People who know absolutely nothing about chronic illness, either run away every time you come into the room or they try to say the words I wish they would choke on. ďYouíve just gotta keep a positive attitude and everything will be peachy keen.Ē Bullshit, I think to myself Ė if you were in my shoes, feeling like I do, there are a lot of days that I would just love the opportunity to jamb that kind of platitude right down your throat!!
So, Iíll end the story at this point for now. Iíve completed 36 weeks of treatment this time around and will find out on Friday, if I get to go on to the final end which is 48 weeks. Then, I hope that I can finish this off on a winning note and proclaim that I am indeed a Hep C Survivour!!!
Donald Christ's Hepatitis C Story
I would offer my story too, but what can I say, being a newbie and all.
That I have freaked out about having HCV more than once?
That I have spent the last year educating myself, changing my diet/lifestyle,
trying to be supportive of others who really are suffering, and trying to be an
Pretty boring stuff.
For many years I have been suffering HCV symptoms - fatigue, fog, stomach
problems, pains, weakness, etc.
When I got sick, I wouldnt heal fast.
I probably have had HCV since the early 1970's from IV drug use.
I had to quit working by 1990. I was 39.
In 2009, I turned 58.
Last summer  I seemed to be always sick.
I couldnt keep any food down most days, and had many flu like symptoms.
I ended up in the ER over and over.
I thought it was a case of reoccuring West Nile Virus that I had 3 years before.
Finally I was hospitalized, and that is where I got tested for HCV, and diagnosed.
SHOCK, disbelief, FEAR !!!!!!! OMG.
West Niles almost killed me. This was far worse.
I was sure I was going to die. Depression hit me hard.
I was a 1B genotype, and had a viral load of 86,000.
I knew nothing about HCV. Never heard of it.
I didnt die, and now a year later, I am doing so much better.
I am researching about HCV, changed my diet and lifestyle, doing sups/vitamins, etc.
Possibly my flu like symptoms may be caused by diet and/or living conditions.
I was eating a lot of fried foods, sugar, junk, when I was at my worst.
In Sept 09, I got my first labs done, and they werent all that bad.
I was scared, needless to say. My viral load jumped to 551,000.
In Oct 09, I had my first Heptologist appointment.
I was sooooo scared, I made myself sick.
I thought I was going to have to have a biopsy, and immediately do TX.
Wasnt I surprised when she told me I am not that sick, and biopsy/TX can wait
for a year or more.
Maybe long enough for the viral inhibitors to be added to the TX, shortening
TX time, and bettering my SVR rates.
She told me to get labs done every 6 months.
If I get sick fast, only then will I have to face TX decisions.
J.S. Hep C Story
I wish to add my two cents to this discussion. About ten years ago when I was approaching my first treatment episode
I had had HCV (gen 1a) for 30 years and my viral load was 800,000 something.
A biopsy revealed stage 3 (almost 4) and bridging fibrosis.
After 8 months on treatment my viral load was 17,000 something and treatment was discontinued as I was suffering
severe sides and there was little chance of clearing since I hadn't already done so.
Six weeks after stopping treatment I felt wonderful. I was running, swimming and playing happily.
My viral load was 12,000,000.
I am glad for you that your viral load is low in that if you do treatment there will be less virus to eradicate but
I want to caution you that a low vial load isn't necessarily a good thing.
I believe that our immune systems come to a balance, a homeostasis, in the struggle against the virus.
That means that your system has been able to draw a line or set a limit as to how much virus it allows at a relatively low level.
In order to do that your immune system has to continually battle the beast. This shows up as inflammation (often seen as elevated ALT and AST).
Damage to the liver called fibrosis is the result of that battle.
If your system can not clear the virus completely your liver would be better off if your system failed to see the virus at all.
That being said, I would put off treatment until the protease inhibitors are approved.
Treatment will not be any less difficult but your odds of success will have doubled.
Whether you can wait depends on the condition of your liver and that takes a biopsy or at least fibrosure(sp?) to determine.
HCV does not progress linearly, you may have it "in check" for years and then everything will rapidly change.
Don't make decisions based upon subjective feelings of well being. I am 60.
Last year I swam a mile and a half a day, ran regularly, kitesurfed, etc. and generally felt quite happy and healthy.
So good in fact that I had neglected my regular blood work. When I did go in for tests in May I got a call from my
doc who explained the results, cirrhosis and impending liver failure.
I trust her completely (she is a recognized expert in this field).
She said I couldn't wait a year for the new drugs so I ended up on treatment again.
The good news is that after four weeks I was undetectable. I have 41 weeks to go.
I could tell you a true Kaiser horror story about how they allocate resources but think it would be better to just say, "Do your research."
Go to Kaiser with copies of studies that back up your position and don't stop until you get what you want.
Good luck and great health.
It brings up issues of loneliness and a need to connect with others satisfied by a sense of being understood.
At times I accept that no one can ever completely "stand in another's shoes" but most often I am frustrated,
annoyed and hurt that others just don't seem to get what's going on with me.
I go from being self-critical around complaining too much and making everything about me and thinking I
must be terribly boring to realizing that I just don't want to be so alone with all this.
Suzi on her Hepatitis C Experience
I was actually diagnosed with liver disease in 1966-- so it was sometime before that I contracted it.
I have lots of articles concerning Dr Berkson's treatment.
One patient has her viral load way down and enzymes normal with his treatment plus LDN.
I have no clue how I might have felt if I didn't have Hep C as I have had it most of my adult life.
Also JUST diagnosed with early Diabetes 2 after all these years.
Believe that If I watched my diet better and lost some weight it would help.
For years, I really watched my weight, but don't do it now and need to get back to a healthier diet.
Most doctors do NOT talk about what you can do to slow the progression or reverse the damage---
because they don't know and just follow the standard interferon treatment.
I've never had a viral load done, but all the rest of my tests are at or just a few points above normal.
Only biopsy ten years ago.
I am not recommending what anyone else should do, but believe there is a lot we can do to mitigate the effects that Hep C
has on our lives and heal the liver.
Kat's HCV story
I was diagnosed in Oct
2006 with a viral load of almost 2 million.
I thought I was going to die. I got with an ND and he prescribed nutritional supplements and Myer's cocktails.
My liver enzymes dropped to 1/2 of what they were and
I began to feel better. It took 18 months to get well. I cut out almost
all junk and processed food.
I eat vegetables, fruits, raw nuts, whole grains, brown eggs and salmon, in that order of amounts.
I make everything we eat from scratch.
I really think what made me sick was when I put myself in the back seat
of my life, and made other people more important.
I betrayed myself and condemned myself for doing it. It almost cost me my life.
I did a lot of screaming and wishing to die too.
I got FM, cryoglobulinemia, tendonitis, exhaustion, poor digestion, fatigue, depression, and a few other things....BUT NO MORE!
I changed my thoughts and got back in the driver's seat of my life and my health improved to where I could garden
last year and start my own business this year. (and do the garden too)
Things really changed for me as I began to exercise. I started swimming.
At first I could hardly swim a lap, but I kept at it and now I can swim
a mile in under an hour.
And when I swim the muscular pain and achy joints go away.
It never hurts to do a mental inventory of what thoughts we are
thinking, because our thoughts are
acted upon by the Universal Power without any judgment. Have you watched The Secret?
If you dream of suicide daily, the Universe says, Your wish is my command.
People have gotten well on placebos because they believed in them! And because
they believe in themselves.
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