Greg Jefferys Hepatitis C blog deals with all the issues associated with hepatitis C
Every day I get an email or message from someone who has beaten Hep C through one pathway or another.
I am always grateful when a person is willing to share their Hep C survival story as such stories always help other people with Hep C to deal with the process of getting Hepatitis C treatment and then doing the treatment.
In this story, from Carole in Canada, we follow someone who was misdiagnosed with a non-Hep C liver disease and who almost certainly would have died if she had not taken things into her own hands and demanded that her doctor test her for Hep C.
We do tend to trust that our doctors know what they are doing, and mostly they do, but doctors are human and they make mistakes. It is important to take personal responsibility for our own health and do the research and make the decisions that will lead us to better health.
Certainly, talk about it with your doctor, but remember it is your body and your health and you do have the right to call the shots.
Please read Carole’s story
Hi everyone, my name is Carole. I’m a 53 year old female Hep C patient and I live in Canada.
About seven years ago I was flagged on a routine blood test because of abnormally high liver enzymes. My doctor said I had non-alcoholic fatty liver disease but offered me no diet and no treatments.
So I took things in my own hand and looked up many ways to heal my liver naturally through diet and exercises. But despite my efforts, every year my liver was getting worse and worse!
I’ve always been in great shape and have a great career.
I don’t drink or do drugs but my doctor kept blaming me for my liver disease so I kept trying different diets-avocados daily, low red meats, low sugar and low carb diet.
Five years after I was diagnosed with “liver disease” things suddenly got worse fats and my world came crashing down hard!! I lost over 15lbs in a few weeks, my skin turned yellow, my urine stank and was very dark in colour.
At that stage my doctor had been taken monthly blood work to monitor my liver functions, but was doing nothing more.
I knew that I had severe liver damage with and fibrosis score of F4 and I had cirrhosis of the liver.
My best friend saw me one day and told me I was dying and if I didn’t get this under control I would soon be dead. I said I was trying everything I could but nothing was helping!
She gave me a list of all things to tell the doctor to test me for; on the list were HIV and Hepatitis C.
So I went to the doctor and told him test me for all these, but he refused, telling me I wasn’t at risk of having Hep C and that I had never been at risk for any of these diseases.
I argued with him and finally he agreed to get the testing done.
A few days later I got a call from the doctor saying that he needed to see me immediately. I figured liver enzymes are just higher and wondered what I was gonna try next to heal my ailing liver.
When I sat down in front of the doctor he told me that my tests had come negative for all the diseases except Hep C.
He said, “You have Hepatitis C.”
I was devasted!
How do I tell my government employer that I have Hep C?
How do I tell my community that I have Hep C?
How do I tell my friends and family that I have Hep C?
And how did I get this disease??
I had never done drugs not even a joint, I didn’t live a promiscuous lifestyle. In short I never taken part in any activities that would cause me to have Hep C!
So now where do I go? Where can I get help??
The Infectious Disease Centre got a hold of me and put me through to a Hep C Specialist, but the appointment was a few months away! But by then my viral count was in the trillions, my liver was shutting down and I had developed ascites.
Here comes me not accepting anything without a fight and googling anything about Hep C treatment and cures and needing support.
I was so alone in my disease.
Only my best friend, my family and my employer knew that I had Hep C.
Fortunately my employer immediately put me on sick leave so I could either die at home or die trying to find a way to get well.
It was a matter of taking personal control of my own life (and death) and there was no way was I gonna wait months to talk to the specialist!!
I used Google and YouTube and found Greg Jefferys!!
I saw this man on YouTube and he’s about my age and he’s talking in plain terms about Hep C and talking about cures and stuff!
I grabbed all my courage and e-mailed him and wow he answered all my questions!!
It still wasn’t enough for me! I looked him up on Facebook- no I didn’t develop stalker abilities while having Hep C trauma. Ha ha!
He accepted my friend request and invited me in a private Hep C support Facebook group where I could keep my own privacy and friends wouldn’t know I’m in that group.
This group was full of people who had been through similar experiences to mine and other people who had trod completely different paths.
This helped me get things in perspective.
When I was first diagnosed with Hep C after many years of being misdiagnosed, I was shocked and ashamed at having this hugely hidden “closet” disease.
Due to my public life I felt it wasn’t safe to make any public statements about having Hep C. Instead I publicly came out as having liver disease which was safer for my work and for personal self-preservation.
Only my family knew as I asked them to be tested and also a few close friends. The guy I was dating at the time felt that our relationship was doomed, and I chose to surround myself only with supportive people for the battle of my life.
Almost every day I’d drive myself nuts thinking how did I contract that horrible disease- was it through my work? Was it by a couple of tattoos I got years ago? Was it by sex? I had never done any intravenous drugs and had no explanations for how I contracted this disease.
Probably it was from when I was 19 and I had a tattoo done in a non-approved tattoo parlour….
But even though the question of how I caught Hep C drove me nuts for a while pretty quick after diagnosis I had to get one thing clear in my mind and soul: that it really didn’t matter how I got Hep C, but that it was my responsibility to “deal” with it.
Ok so I accepted I had Hep C, great so I was ready to face treatment!
The thing was that because my liver was so sick I had to get immediate treatment now what?
I was very lucky, or so I thought, as I had a great health insurance plan through my work.
The speciality liver clinic I was attending prescribed Epclusa (Sofosbuvir 400 mg + Velpatasvir 100 mg) as the ideal treatment for genotype 3 but the drug had a label price of ,000 Canadian dollars per treatment.
But I was not worried about that because my insurance plan promised they would pay for my Hep C treatment!!
Uh! Ooh not so fast- they refused to pay for that specific treatment with Epclusa due to extremely high cost.
Instead their panel decided to put me on Mavyret at a cost of $43, 000.
I had to get a hold of the specialist and have them rewrite the prescription for the new drug. During that time the liver clinic had contacted the makers of Epclusa and they contacted me saying that they wanted to make payment arrangement plan… but why? I had a great health insurance plan (or so I thought).
It was weird how the big drug pharmaceutical would contact me! I kept insisting let’s see how that plays out, but they kept calling.
By then I had contacted Greg Jefferys and knew all the ins and outs of how to get generic Epclusa treatment cheap. I couldn’t tell my doctors or health insurance plan otherwise I’d lose coverage because it wasn’t their approved drugs! But here I was with the prescription for Epclusa, but my health insurance didn’t want to cover it!!
Breathe… it all works out.
I agreed to Mavyret for 8 weeks and the Mavyret was covered by my insurance -all of it!
My plan B if the Mavyret wasn’t covered was to not tell a word and get the Hep C drugs off Greg for a fraction of the cost and get cured that way but the insurance covered the Mavyret and I started treatment.
So, on goes the big girl underwear with my sleeves rolled up. It was time to slay this disease!
My medical service suggested that I go on mood stabilizers or anti-depressants before treatment. The hepatitis specialist said that the medicines could cause major depression in some people, so it was recommended I tried antidepressants.
So, I took the antidepressants before starting treatment.
But after a week on the antidepressants I had really bad side effects from the antidepressants. My eyeballs were really hurting from a week of bad headaches, so the doc suggested to give my body a break and try a different kind and see how that went. But then the Mavyret came in and I wasn’t willing to try another antidepressant, so I went straight onto the Mavyret treatment without antidepressants.
It was me and the Mavyret!
Because I couldn’t come out publicly about my Hep C my support circle was small. It was my close circle of friends and family and Greg’s Hep C support group on Facebook.
During treatment I felt so depressed. The things I once could do I couldn’t do any more.
I was extremely sick and in much pain. Most people have few, or very low-level side effects from Hep C treatment but I had them all in spades!
Despite the side effects I forced myself to live as normally as I could, still having a public life but under my own terms.
I slept a lot and allowed myself as much rest as possible as the battle raged on inside me.
I would take my pills religiously every day at lunch, even though I really didn’t feel hungry I made myself have healthy lunches.
I gained weight, I lost hair.
But I had to make myself ok with all that because all that was part of my journey of being a survivor!
I tried my best to keep a positive attitude and avoid self-pity. I focused on helping others within my group and outside in my community.
The pain through the Mavyret treatment was so bad that on some days I didn’t know if I’d live or die. I just knew I had committed to take my meds once a day and that was today.
I often turned to Greg’s Hep C group where I found the support I needed through this exceedingly difficult time. I cried for myself, for others and for the loss of a dear friend who also had a liver disease and died during this time.
The online support via Facebook was important because I had to do it alone while apart from my close friends and family during COVID-19 lockdown times. I also put myself into professional counselling during that time which was done over the phone. I made some good friendships in Hep C Facebook Group.
In the Facebook group it was suggested that the side effects were so bad because my liver and general health had been so severely damaged by the Hep C.
Well, finally treatment was over; I made it through the 8 weeks of Mavyret and now I’ve done it; I finished treatment and I own it all.
I’m smiling looking back on my journey to health, healing and self discovery.
So the treatment is done and my liver is healing but the big question in my mind so what now??
Now I need to be accountable for the future me and my liver health. Wow that’s a huge order!
Like many people who survived Hep C I find my body absolutely beaten after the war that I fought so valiantly on, my body and joints all hurt, my stomach is bloated.
I’m beat from a hard fight.
I did celebrate with a glass of Sangria, now to pick myself up!
I started hiking, my body hurt so bad I’d get home after only a 1km walk and I’d be shaking and crying I hurt so bad.
But I kept at it.
I increased the length of my daily walk by 500 steps every 3 days. I had to teach my body to walk and to feel exhausted. I had to have a healthy diet where the first month I cut off all carbs except two cheat days where spaghetti and breads were tops.
I had to cut back on sugary goodness and replace with fruits and veggies. I cut back my red meat intake to fish and fowl.
But there was proof that all this works and my liver loves it!
I recently went for a Fibroscan and ultrasound and was told that my liver has gone from cirrhosis F4 to a relatively good fibrosis level of F2 in only 4 months Even better the swelling of liver has stopped and my liver shrunk by 2cm.
A huge part of my journey was learning to forgive!
For 5 plus year I had abnormal high liver enzymes. For 5 years my doctor kept blaming me for my high liver enzymes accusing me of a) maybe I was a closet drinker, that maybe I was abusing drugs, maybe I had a high fat diet or that I took too many over the counter drugs. Because I wasn’t in the high risk of Hep C he never ran those tests. In Canada, where I’m from people over the age of 45 who presents with abnormally high liver enzymes should be tested for hep while mine didn’t and when things starting failing badly he was forced to run the tests where it showed I was Hep C positive.
I confronted him in a formal setting as I felt so angry and betrayed by the trust I had put in him.
In the formal meeting with him and the manager of the clinic he works at a peace came over me, he apologized and took ownership of the state of my liver as it was badly damaged over years of misdiagnosis. Instead of being angry and putting myself in the victim role I chose right there and then to keep him as my doctor and that him and I were gonna go on this big learning journey about Hep C and that his practices would have to changed! Needless to say he felt relieved at not being sued for malpractice but to know I had forgiven him.
It was also a huge weight taken off of me because letting go of all that yuckiness I could then focus on healing and forgiving myself and him. It set my mindset into not laying blame but on taking responsibility.
My depression slowly got better and my sleep improved. I felt hope instead of hopeless, my body isn’t perfect but it’s mine! I own it not the disease not the mistakes I’ve made in the past but mine in the here and now. At 53, I decided that I will become a tri athlete in running, swimming and biking. Why not? The sky is the limit. If you have Hep C or know someone who does just know the cure is here and here’s our chance❤️
If you have no health insurance please don’t delay getting treatment The cure can be done for under $1,000 usd. I was stage 4 Fibrosis, that’s cirrhosis of the liver, and it was really bad and was life threatening at that point but now am cured.
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