Friday, September 28, 2012

''You have hepatitis C....You have hepatitis C....You have hepatitis C'' An inspiring story of friendship, courage, persistant, overcoming obstacles, and finding support!

You have hepatitis C....You have hepatitis C....You have hepatitis C''

Those words reverberated in my head as if they had been shouted at the bottom of a deep gorge in the Grand Canyon itself. Nothing I did would make those words go away. Why had this happened to us? name is Louise, I care for my partner, best friend & soulmate who's name is Thelma. It was December 2003, just a week before Christmas, when the Doctor called with the news which would turn our lives upside down and inside out....things would never be the same again. Hepatitis C had invaded our home and our dreams. In fact, this was a nightmare just beginning and we were in for the fight of our lives. We were ready for the battle, ready to fight back and determined to evict this uninvited squatter. Bring it on, we said...bring it on. How naive we were!

The dragon had quietly gorged on Thelma's liver for around 25 years, but now it had risen from its slumber. She had been sick for two years and, looking back, the signs were all there. The typical symptoms of Hep C. Terrible crippling fatigue, nausea, itchy and blotchy skin, severe flu like symptoms and aching, loss of appetite, infections and mood swings. I still, to this day, have no idea how she continued to work full time, commuting to London every day, clocking up more than 500 miles a week. The work was challenging enough for a healthy individual, how she coped, day in, day out, goodness only knows. But things were catching up with her and eventually overtook the drive and determination not to be was time for Thelma to stop and time for me to step up to the plate. Almost overnight, I became a full-time carer and self appointed advocate for all her medical needs.

Hospital appointments were happening thick and fast...blood tests, ultrasound scans, colonoscopy, endoscopy, biopsy and an overall assessment by a gastroenterologist with a dubious bedside manner. Thelma was prodded and poked to within an inch of her life and the obvious indifference of the specialist Hep C nurse was beginning to test me to the point that I just wanted to punch him in the face. He dared to suggest that Thelma was psychosomatic and doubted the severity of her symptoms! He really doesn't know how close he came to losing both his upper limbs. I was ready to tear them off with my bare hands. Thelma, surprisingly, convinced me it was not a good idea.

Time passed by, medical tests continued and Thelma's condition worsened. I knew the difficulties of caring for a loved one, we had cared for Thelma's parents right up to the end for each of them. It is exhausting on the body and the mind and can be a severe test on relationships. I had no idea, however, how challenging it would be to care for a partner of more than 20 years. Our relationship was about to be tested to the absolute limit. It was now December 2006, almost exactly 3 years since diagnosis of the virus was made and we were about to embark on one of the darkest winters of our lives. A 24 week course of combination therapy treatment with Pegylated Interferon and Ribavirin was about to begin. The nurse administered the first injection of Interferon and Thelma swallowed the first dose of Ribavirin. It was a Friday, a cold day, but the sun shone brightly. From here on in, Friday would always be shot day and Thelma would be injecting herself. I quietly gave thanks for that. I felt bad about it for days, but still thankful that it was not going to be a part of my duties. We returned home and quietly saw out the rest of the day peacefully together. Day 1, week 1 of 24 came to a close with nothing out of the 'ordinary' to report.

By week 8, Thelma was ready to quit. I was ready to quit. The side effects of this treatment were more horrendous than either of us could have imagined. I asked questions of myself over and over. Was I caring for her in the right and proper way? Surely, it couldn't be like this throughout the whole 24 weeks, how is a person to endure such an onslaught?

Thelma cried. She wanted out and just the very thought of continuing on made her cry some more. I made the call to the 'dragon's office' and broke the news. I was met with silence....but not for long. The next 60 seconds or so felt like I was standing outside the headmaster's office, head bowed, waiting for the inevitable swish of the cane. I felt like a naughty schoolgirl who's parents would be VERY disappointed. Then it stopped because I stopped listening and suddenly the anti-authority, rebellious schoolgirl came back to say ‘hello’ and I fired at him with all guns blazing.

How DARE he speak to me in that way? How DARE he make Thelma or myself feel like an utter failure? How dare he continue to breathe?

Thelma listened on. The look on her face was that of someone who had been beaten into submission, unrecognizable to the person she was just 2 short months before. That made my blood boil further and my tirade continued.....then I was done.

Once again I was met with silence. I did begin to wonder if my splendid retort has been for nothing, maybe he had hung up on hearing my onslaught? But no, he was still there, but a lot less sure of himself than a minute or so previously. I told him Thelma was quitting and no amount of emotional, medical blackmail was going to change that. He had threatened, yes, threatened that Thelma would NEVER be offered re-treatment again, from anywhere in the UK, that she was ungrateful and a failure. Is it any wonder I almost seared his ears permanently shut with the fire in my words? I had become the fire breathing dragon and my treasure was not going to be plundered or abused. Thelma was and always will be my treasure. This 'heated' exchange ended with the intervention of some common sense. Even though it wasn't and still isn't standard practice for the 24 week treatment regime, he decided to back down and agreed that if Thelma carried on with treatment to week 12, a viral load check would be carried out to see if she was responding. If she wasn't, he agreed that treatment should stop, but if she WAS responding, he asked, rather than demanded, that Thelma might consider seeing the treatment throughout the full 24 weeks. My response was that we would consider his offer and get back to him the following day.

The 12 week test did indeed show that Thelma was responding to treatment and that the required minimal response rate had been attained. We were, naturally, delighted to hear this but several weeks later it occurred to me that we didn't actually have any proof that the 12 week test had REALLY been carried out! A kind of placebo, perhaps? Hmmm! Our mistrust and suspicions loomed again but by now Thelma was 3/4 of the way through, the side effects had continued and my heart ached for her more and more with each passing day. We were alone with this nightmare. Not one source of support did we have. No family, no friends, no one who either understood our situation or cared to understand. It wasn't the first time we were alone with our woes but never had we felt so utterly isolated from life and the world in general. Apart from each other, I felt no love being directed toward us.....not one human being cared! This only served to make me stronger, I would be our support network, I would be Thelma's source of love and compassion. We didn't need anyone else!

Finally, week 24 was at an end. Hoorah! The end of treatment blood test told us the virus was undetected. What joy to the ears! Our expectations were high. We began to laugh & joke together, making plans once more for the future. It felt fantastic to be happy again!

Devastation doesn't even begin to describe the feeling when the call came. Thelma had relapsed at the 6 month post treatment test. We cried. We held each other, Thelma gently rocking in my arms. The hurt and the feeling of loss was soon replaced by utter contempt and hatred....yes, hatred....of the virus, the treatment, which had failed us, and the complete lack of after care from the hospital. We had been dropped like a hot cake. To be honest with you, the level of 'care' had been questionable throughout, but now there was nothing, nada, a big fat zero. I stopped calling the hospital. What was the point? They didn't give a flying toss about us. That's if they ever did. Once again, we were completely alone with our woes. Nobody cared, we didn't matter to anyone. I actually only wanted people to care about Thelma, not me. I didn't matter in all this and besides, the attitude of MY family had always been one of ''Oh, that Louise, she can take care of herself!'' Oh! Really?! Well stuff the lot of you then! We started this alone and we shall finish this alone. We didn't need anyone else.

Four long years passed us by. Life went on, of a fashion, but everything had changed. Thelma was sick, very sick. My mind was always racing, trying to think of alternative ways to help make her better. We spent a small fortune on all manner of mixtures and potions. The local Health Store staff even knew my name and I was greeted with a wide smile on each visit, but had a considerably lighter purse on leaving the store! Nothing was helping. Dare I bring the subject up? Dare I mention THAT word? I hesitated, but time was marching on. I decided to bite the bullet, hope for the best and waited for the backlash!

2010 and we were back in the same department, the same corridor of the same hospital. Everything was the same here, but nothing was the same. We sat on those uncomfortable seats, the clinical walls bearing down on us with the familiar smells and sounds permeating our very souls. I felt like screaming! Poor Thelma had a look of terror on her face. I was sure she was going to do a runner from there at any moment. Perhaps she would have had it not been for an unfamiliar, deep Irish accent calling her name,

''Hello! You must be Thelma & Louise. My name's Mary, I'm very pleased to meet you both.''

The words 'Once more, unto the breach dear friends' swirled around my head. Were we crazy? Had we lost our minds? After a fair battle, the hospital had agreed to re-treat Thelma, but it was made very very clear to us that in the event of this treatment not being a success there would be no third treatment. Almost like a threat. I remember thinking that nothing much had changed then. The consultant was just as much of an arse as he had been all those years previously. I did notice that he’d shed a lot of weight and pondered on this for a while as he 'talked us through the process.' I remember wondering if he’d been on some sort of strict dietary regime or perhaps he’d been ill.
I came to the conclusion that either way, regardless of what his exterior now looked like, he was still an arse on the inside. I'm certain he picked up on my thoughts as his words started to drift back to my ears. It was the look on his face, the look of someone who’d just realised that the patient and carer had sussed him out a long time ago. Our relationship was never going to be good.

The great news was that Thelma now had what appeared to be a much nicer specialist nurse. The bad news was that the treatment duration would be 48 weeks this time! 48 WEEKS! Were they kidding us? It was explained that, in view of the fact that Thelma had relapsed on attempt no. 1 (AN1 is our code for it), the rate of 'success' had been lowered to 30%. So, it was thought that the sensible thing to do was to double the regular treatment time, but still on the standard therapy as there had been no progress with new treatments for geno type 2 & 3. But 48 weeks of that crap? Thelma was already shaking inside but she was determined to give it her best shot. We were much better prepared this time, much more informed and much less likely to put up with any bullshit from anyone - especially the hospital. And, on top of that, thanks to inheriting a trusty old laptop from a dear friend who had recently passed (R.I.P. Kay) I had found my Hepper family online via the book of face. I cannot even begin to put into words how grateful I was and how very fortunate I was to be welcomed and accepted into some wonderful support groups, with so many people I had never met, and probably would never meet. Yet here I was! One of them and I didn't even HAVE Hepatitis C. I was just a carer, but in their eyes I was as important as anyone else. I embraced the support, the encouragement, the wisdom and the love of my Facebook friends....they had become my family.

So, here were are....August 2012, 48 weeks of torment and tears are behind us now. Thelma did it! She made it to the end of treatment! I won't pretend it was easy by any stretch of the imagination. Once again we were tested to the extreme. Some days were so bad I thought Thelma would HAVE to quit, that there was just no way she could continue to batter herself with those chemicals any longer. There were many tantrums and tears, many sleepless nights and we questioned our decision to go ahead with all the grief again. We had our ups and downs with the hospital. It was never going to be any other way and we still have zero support from our families. In fact, not once has any of our blood family even called to our home to see how Thelma's doing. Not one member of our blood family has ever picked up the phone to call us. Not one member of our blood family has mailed a card with caring, loving words of encouragement. Not even a Christmas card dropped onto our doormat. But I have my Hepper family. The most caring and compassionate group of people who understand and empathise with all we have endured over the years. People who are always there to offer a kind word or advise on any concerns I may have. Without these most wonderful people, this particular journey would have been so much harder for Thelma and myself. I cannot thank my Hepper family and Facebook friends enough. There are no words, just love.

And we have each other. That is always a constant and has been for 26 years. Not bad, huh? Of course we argue from time to time. Of course we say things we wish hadn't been said. Of course we have regrets, but we have each other. The good news is that, since week 4 of the 48 weeks of treatment, Thelma's blood results have returned showing the virus as undetectable. We are so very happy at this news, but we remain calm and level headed until the final results come in at the beginning of February 2013. Will the results favour us this time? Who knows? Maybe we'll get lucky. Maybe we'll get a break. That would be nice. If the worst were to happen we will face it together. I doubt there's much chance that Thelma and I will drive off the edge of a cliff in the Grand Canyon any day soon, or in our case, off the edge of Beachy Head here on the South East coast of the UK. We are strong! We are good together! We are soul mates and we shall prevail!

The question is: To care or not to care?

Answer: To care, always!

Friday, September 14, 2012

Meet Patti: 3 time null responder, liver transplant recepient, now post transplant and on treatment, and avid baseball fan

Name: Patti
Age Diagnosed:  20
Current Age: 47
Sex: Female
From:  Keller, Texas
Genotype:  1a
Acute or Chronic:  chronic
Treatment Naive: 3 time non responder
Date Cured Hep C: Currently 37 weeks in
Treatment Length: 48 weeks
Treatment used: Interferon, Ribavirin, Incivek

I was an IV drug user.  Trying to "fit in" with the wrong crowd.  At the time, I could have told you the date that I got infected, but not anymore.  "It was 1985 & I was 20 years old.  I turned yellow, so my mom took me to the doctor".  I was diagnosed as having non-a, non-b, possibly mono.  I had to have blood work for quite a while afterwards.  Maybe a year or so, I don't really remember anymore.  Then the doc said that my numbers were fine & I didn't have to come back.  I had no idea what that meant.  Met my husband in 1988, got married in 1989.

Fast forward 20 years.  "I went to my ob/gyn for my annual check-up.  He ran blood work which showed that my liver enzymes were elevated".  He sent me to my primary, who sent me to a hepatologist.  Multiple tests and 2 biopsies later, I was told that I was in stage 4 & had 3 lesions on my liver.  That was the reason for the 2nd biopsy.  "The doctor gave me 3-5 years if I did not have a transplant".  I told her "I'm 40 years old & I still have things I want to do so how do I sign up?"  That was December 5, 2005.  In March 2006, I started treatment, Interferon & Ribavirin.  I lasted until the 12 week viral load.  I was not responding.   "On July 9, 2006 I received the gift of life".  My husband overheard that my donor was an 18 year old female.  I know she died in Dallas County.  I have written & gotten no response, but that's not what this is about.

In February 2007, my liver enzymes started going up again, so here I go again for another biopsy.  I ended up having 5 in 6 months.  I was back in stage 2.  My kidneys were only functioning at 24% so I was not eligible for treatment again.  I had to wait on my kidneys to get stronger, or I would never treat again.  I got another doctor out of the deal too.  A nephrologist.  Yay!

I started treating again in August 2010.  I lasted until the 12 week viral load.  Treatment was stopped.  I was not responding.  Right after that, they started me on Infergen & Ribavirin.  Said it was a last resort.  I made it until the 12 week viral load.  Treatment was stopped.  That was January 2011.  July 2011, I went in to the hospital for my annual biopsy & was told that I was stage 3, grade 4
The new protease inhibitors came out in May 2011.  They are FDA approved for pre-transplant patients only.  "I had already told my doctor that I was willing to be a guinea pig".  I have nothing to lose at this point.

I was supposed to start treatment in October 2011.  I would have been the first post-transplant patient, on the Immunosuppresant Rapamune, to use Incivek in the country.  Three days before I was to start tx, I went to the dentist for my 6 month cleaning.  He found several spots on the bottom side of my tongue.  He sent me to an oral surgeon for a biopsy.  It came back as squamous cell carcinoma.  A form of skin cancer in my mouth.  Needless to say, tx was postponed.  I was sent to an Ear, Nose & Throat doctor to handle it because the oral surgeon didn't know much about cancer.  I had the rest of the cancer cut out of my mouth & my throat scoped to make sure that the cancer hadn't spread.  Thankfully it hadn't.

I started tx on December 30, 2011.  The first 4 weeks were Interferon & Ribavirin.  For the first time ever, I had a 2 log drop. January 30, 2012  I had to have a picc line put in.  I had to drive 45 miles miles each way to go to the hospital every day for labs.   "Thankfully, I have FMLA coverage to protect my job".  I went in afterwards, but I missed a couple of hours each morning.  Since I am post-transplant I had to have daily blood work so they could make sure that I wasn't rejecting. For 3 weeks.  The same day I started the Incivek.  "I had my viral load done at week 4 of the Incivek.  For the first time ever, I was UD".  As of this story, I'm 37 weeks in.

"I can say that I'm one of the lucky people who has very few side effects".  I've been able to work through treatment.  I've missed a few days for doctor's appointments and a few because I haven't felt good, but not too bad.  I was anemic before I started treatment, so I've had one transfusion & my Ribavirin has been lowered & raised several times.  I'll take it compared to some I've heard about.

If you need/want any more information, just let me know.

Wednesday, September 12, 2012

Meet Mark and Becky: A caregiver's perspective: "No matter how hard, how much pain and suffering...his life..and yours are precious and are worth fighting for".

Name: Mark Mahalic
Age Diagnosed: 41
Current Age: 52
Sex: Male
From: Denver, Colorado
Genotype: 1a
Acute or Chronic: chronic
Treatment Naive: Relapser
Date Cured Hep C: Hopefully January 2013
Treatment Length: 1st treatment 1 yr., maintenance therapy 7 years, 3rd treatment 48 weeks
Treatment used: 1st treatment Ribavirin and Pegintron, 3rd treatment triple therapy with Incivek

Below is what I've written coming from a caregiver's angle of my husband Mark's battle with Hepatitis C.  I hope it will encourage others.

Thank you so much for asking me to write something, I found it healing and made me realize how much we've battled.  Also, thank you for bringing this awareness and support you are giving and sharing with others.  "It's so very important that people don't feel alone in their diagnosis".

April 22, 2002…the day that always brings back that sick feeling in my gut. I remember the events leading up to it well. 

Hi, I’m Becky. Mark, my husband of almost 26 years now was diagnosed with Hepatitis C on April 22, 2002…his 41st birthday.  Mark had been on anti-depressants for a couple of years and the doctor wanted to do a blood test to make sure the anti-depressants weren’t causing any harm to his liver.  He put it off and put it off until he ran down to the last week of meds.  I made the appointment and told him he was going.  The blood tests came back showing something off, they thought it was diabetes initially.  She asked him to come back in for another blood test.  This test would take several weeks to come back.  The doctor called on a Sunday and told us she needed to discuss his tests; we were gone for the weekend and missed the call.  We knew at that moment, that something was wrong.  Maybe it was diabetes, it runs on his side of the family. We could deal with that.  The following day, Mark called the doctor and told her to just tell him what was wrong.  She told him he had hepatitis C.  I was at work and will never forget that call.  My coworkers were standing around me and we were laughing.  I answered the phone to hear Mark say, ‘I have hepatitis C’.  I asked him what it was. He told me it was a blood disease and we were to go see the doctor and discuss options.  I remember hanging up the phone and telling my boss I needed to leave.  I don’t remember the rest of that day; "all I knew is that I was scared to death and knew nothing about this disease except that Naomi Judd had it".

The next day I began to research hepatitis C.  It was a fairly new disease and all I found was horror stories and the word death.  Mark’s GP referred us to a gastro doctor.  A liver biopsy was done and determined that Mark was in Stage 2-3.  The doctor recommended treatment right away but there would be a 3 month wait because there were a lot of people waiting for the new medicine, Pegintron.

Three months later, we sat and watched a video of how to give the injection.  We had to mix a powder together with a liquid and if it wasn’t done just right, the mixture was ruined; talk about pressure, each shot would cost approximately $500.  We both felt so scared preparing the mixture and preparing it to inject.  Treatment lasted for a year.  I won’t lie, it was tough and I wasn’t the one enduring the side effects but I was the caregiver and that job wasn’t easy either.  During this time, we knew no one that knew anything about hepatitis C. No one could relate to what we were going through.  We got through the year and at 3 months, Mark had relapsed.  Another day that rocked our world and not in a good way.  The gastro doctor recommended that Mark do treatment again.  We were devastated.  The treatment had taken a toll on his body but he wanted to live and said he would do whatever it took to fight the disease.  So he began treatment again and was referred to a hepatologist.  Several months later we went to see the hepatologist.  He recommended that Mark go on maintenance treatment which was 90 mcg of Pegintron every week and stop the Ribavirin (the additional pill that was involved in the chemo treatment).  Because Mark was a ‘relapser’ and was at stage 2-3, studies had shown that the maintenance therapy would help prevent further liver damage.  He took maintenance until August 2010.  "We had finally reached the day we and many others were waiting for which was the same treatment taken previously with an additional pill (the miracle pill we called it)".  The doctors wanted Mark’s viral load to be full blown and wanted him to stop all meds for a year and get his body ready for the next fight.

He began the new triple therapy with Incivek in August 2011 and completed treatment on June 29th of this year.  He will have his three month viral count at the end of this month (September) and we have very high hopes that he’s conquered this ugly disease that we call the Dragon.  At one month, he was still undetectable and the doctor looked him in the eyes and said she didn’t think that he would have to worry about Hepatitis C anymore.  In my opinion, it was very bold of her to say and scares me some; but on the other hand, I tell myself she wouldn’t have told him that if she wasn’t pretty confident that he’s killed the Dragon.

"If you’ve just been diagnosed with hepatitis C, don’t panic". You are so fortunate to be diagnosed in 2012.  Why??? Because advancements and progress in hepatitis C treatment and a cure for all are in the near future, if not NOW!  There are many wonderful support groups now. People that you can talk to, relate to and are in it with you.  There are many groups on Facebook and I’ve met many wonderful friends from around the world.

"I have always had the firm belief that God puts us through trials for a reason". We don’t always know the reason but I can honestly say at the end of this ten years of being a caregiver for the love of my life, I understand God’s purpose for me.  He taught me patience first and foremost.  As a caregiver for someone going through hep C treatment, I had to build a tough outer shell.  I had to learn that some of the side effects that Mark dealt with made him a very angry and depressed man.  I learned to love him and not ever take his anger and things he said personal.  I cried with him, I screamed with him and now we’ve crossed the finish line and we love each other more than ever.

So the moral of the story is, have HOPE.  You can beat this disease and advancements make cure most promising.  Get involved in support groups.  For me, it was important to find and connect with other caregivers.  It helped me feel like I was in good company.  It also helped me understand that there are many people going through exactly what Mark was going through.  I found, for me personally, online groups were more positive and encouraging.  Online groups helped me better understand WHAT Mark was going through.  Mark is my hero, he has an amazing will to live and has always been willing to do whatever the doctors wanted him to do, "no matter how hard, how much pain and suffering….his life….and yours are precious and are worth fighting for".

Monday, September 10, 2012

Name: Ralph
Age Diagnosed: 57
Current Age: 63
Sex: Male
From: New York
Genotype: 1A
Acute or Chronic: chronic
Cured Hep C: September 2012
Treatment Length: 12 weeks
Treatment used: GS 7977 and BMS 790052 (daclatasvir) without Ribavirin

One of many success stories with GS-7977 & daclatasvir WITHOUT interferon OR ribavirin! Ralph treated for 12 weeks and should be receiving his SVR12 on September 10th, 2012.

"Treatment History: Treatment naïve prior to starting GS-7977 + Daclatasvir on March 13, 2012, treatment completed on June 4th.
Treatment Issues / Side effects: The side-effects have been minimal for me; I experienced a feeling of being spaced out along with a mild depletion of my energy that would start about 45 minutes after taking the meds and last for about 5 hours.
General Comments: March 15 - Day 2 of trial ending now. It just feels like two powerful drugs working at a deep level in your body. I slept for a full eight hours the first night, something I do very rarely. I woke up this morning feeling great and very well rested. No info available yet on reduction in viral load.
Jun 05, 2012 - My 12 week trial is now over. No more little white pills with breakfast. It feels slightly poignant- I'll miss my medicine. It was very reassuring. Now it's on to SVR4, I hope. All fifteen people on this trial at my clinic in NYC are listed as undetectable according to one of the study coordinators.
The five patients that were treatment naïves are only treating for 12 weeks - in the interest of medical science presumably. It has been a privilege to be part of this brilliant experiment with this sensational drug combination. Here is hoping that all of the patients on the 12 week protocol make SVR4, just like their 24 week colleagues did.

July 17 – I made it to SVR4! I am feeling incredibly grateful and the two others that I know of on exactly the same trial also made SVR4. It turns out we're on the world's most successful trial for Genotype 1's. All of the genotype 1's on the GS-7977 + Daclatasvir protocol made it to SVR4. Four weeks post treatment and they are still listed as virus undetectable. This looks like this really is the Interferon and Ribavirin free cure. What great good fortune we had to have done it!
I've basically felt well since I stopped the treatment almost six weeks ago now. I have a bit of tiredness and sluggishness sometimes, nothing major."

Jul 17, 2012 -
SVR4 achieved!

"I was thrilled to get the news yesterday that I was UND at week 4 post treatment - early cure. So are the two others I know of who are doing this trial. We are incredibly fortunate. It really does look like this combo is the interferon and ribavirin free cure. Gilead and BMS must know if everyone who made SVR4 on the 24 week version of the trial also made SVR12. Are they not releasing the data because they don't want more pressure to go to Phase 3 trials? I suspect and hope that there was total concordance between SVR4 and 12, as there has been with other trials with 7977. Would love to know those results. But meanwhile I am a very, very happy man. Feel blessed and grateful."

Note to Supporters: If the rest of us are going to get this CURE for ourselves and our loved ones, we have got to take action! Please help by asking all you know to sign the petition and by telling everyone about the AMAZING SUCCESS of the drug combination of GS-7977 + Daclatasvir (without ribavirin or interferon). Our very lives depend on IT!

Sunday, September 9, 2012

Meet Lucinda; 59, a powerful story of survival living with Hepatitis C! "I vowed that if I lived, I would not waste those precious transfusions"

Name: Lucinda K. Porter, RN
Age Diagnosed: 35
Current Age: 59
Sex: female
From: Grass Valley, CA
Genotype: 1a
Acute or Chronic: Chronic
Cured Hep C: Not yet
Treatment Length: #1 12 weeks #2 48 weeks
Treatment used: #1 interferon  #2 peginterferon + ribavirin 
This truth never fails me: joy comes from pain, so never give up when during hard times or I will miss the treasure that is just around the corner. This has served me for more than 25 years, but before that time, I gave up easily. 

Mental illness dogged me for more than twenty years. In 1988, beaten by severe clinical depression, I gave up and took a near lethal overdose. The initial result was multi-organ failure. My liver failed, with enzymes above 18,000. My kidneys failed, my heart was going, and I was told that I would be in a coma in hours and dead within a day.

With death hours away, I tried something I never had before—I let go of fear and surrendered to the mysterious unknown. I focused on the present, with no concern about the outcome. I smiled, and asked about others. I was kind to everyone I came in contact with—my family, the medical team, and the hospital staff. In short, I was grateful.

"I am alive because of transfused blood. I vowed that if I lived, I would not waste those precious transfusions. I have kept this vow, despite the fact that I acquired hepatitis C (HCV) from the donated blood. Was HCV a gift or a burden? For me, it was a gift".

Here is what I have done because of HCV, not despite of HCV:

·       I became a nurse specializing in HCV

·       I became a speaker, educator, and advocate

·       I became a writer and author (more about that later)

·       I found my voice

Here are some gifts HCV has given me: Balance, Patience, Grace, Health. Yes, health, because without HCV, I might become careless. As a person who has tried treatment twice, am still living with the virus, how I feel and how long I will live depend upon my daily actions. This means I exercise, eat well, keep my weight under control, sleep enough, avoid alcohol, meditate, play and pursue humor like a pregnant woman looking for a bathroom.

"Another gift I got from HCV is tenacity. I plan on going through HCV treatment a third time, hoping that it will be the last time, but I will do whatever it takes to stay healthy. For me, a bit of short term discomfort is worth it. With the fabulous success rates of the current triple therapies and the incredibly exciting potential of drugs in clinical testing, cure is within reach for so many of us".

As a patient, nurse, support group leader, and advocate, I know HCV inside and out. There are many wonderful books about it, but I felt uniquely qualified to write another one. Free from Hepatitis C: Your Complete Guide to Healing Hepatitis C was published this year. My goal was to provide a voice of reassurance along with practical tips on how to manage HCV and its treatment. The feedback has been wonderful and my second book will be out next year. It will be daily inspirational readings and tips for those going through HCV treatment. It is a tool to help people to stay on treatment and know that they are not alone.

Never give up. If joy is not here, it is just around the corner and if you give up, you will miss it. Health may be around the corner too, and it is worth striving for.

Wishing you peace, health, tenacity and freedom,


Free from Hepatitis C is available on Amazon or link from my website.

You can follow my serious blog at or my humor blog at

Facebook @LucindaKPorter, @FreeFromHepatitisC, Twitter @LucindaPorterRN


Thursday, September 6, 2012

Meet Daryl: age 58, Cured! "I want to continue to be myself and not be defined by this diesease"

Name: Daryl
Age Diagnosed: 55
Current Age: 58
Sex: Male 
From: From Los Angeles lives in Vancouver, BC
Genotype: 1a
Acute or Chronic: Chronic
Cured Hep C: YES!!
Treatment Length: 48 weeks 
Treatment used: Was in a clinical trial using triple therapy which consisted of Interferon, Ribavirin, and a Polymerase Inhibitor Roche RO5024048 a Direct Acting Antiretroviral (DAA)

I would like to begin my story with a salute to all of those people that have helped me, and others diagnosed with HCV. It has never mattered to me how someone was infected. I know people that used drugs and shared needles, as well as people that have received the virus through tainted blood transfusions, and none of it matters to me. What matters most is that people with HCV need help, and that help takes many forms. I am fortunate enough not to have the severe financial burden that many with this disease face. I can’t imagine what it must feel like to face HCV without medical options as well as any semblance of a support system, which I believe is so very important.  I am deeply discouraged by the stigma that we all face when we are diagnosed with HCV.

I never knew many things about this disease until I was diagnosed .I began a journey toward understanding and knowledge, and ultimately ridding my body of this terrible virus.

The journey actually began when I was hospitalized almost 4 years ago with extreme abdominal pain. After three days in the hospital, and many scans and tests later, all that they came up with was that I needed to have a hernia repair. They asked several times “why was I there”. I am otherwise a healthy person, with the exception of having asthma that is treated successfully.

In the next several months I underwent many tests that included colonoscopy, gastroscopy, many blood tests, a CT scan, and finally while being pre-screened for the hernia repair it was discovered that my iron levels were high. This finally led my primary care doctor to check for hepatitis with more blood work. The preliminary screen showed that I might have the virus.

The second blood test confirmed that I did have Hep C. That was in July 2009.
I was devastated by this news.

The next couple of months were very difficult for me. In my mind my life was over. I was 55 years old, with so much more that I wanted to do in my life, and now I am going to die. That went through my mind over and over. As I began to research the virus, it didn’t get much better, because it seemed like it was all bad news. I was obsessed with it, and I couldn’t get it off my mind.

The next step was to see a Hepatologist. More blood work was ordered to determine my genotype, etc. It came back as genotype 1a, and I was told that it was the most resistant to treatment. It was just more bad news. It seemed like that was the only news I was going to get.

The next step was a liver biopsy in early December 2009. That produced some good news about my liver. I was happy to learn that I was stage 0-1, which means that there is little damage to my liver from the disease. I was so happy to finally hear something positive, and it was a great relief for my wife and family. The next step was to plan for treatment. I was asked if I would be interested in participating in a drug trial along with standard treatment. The Hepatologist gave me three options actually. The first was to do nothing, the second was standard treatment, and the third was with the drug trial. I decided that I would go into the trial because the drug had shown a substantial increased chance of clearing the virus, and reaching SVR. Since deciding to be a part of the trial I have undergone many screening tests to determine if I am suitable.

The only thing they found during screening was that I have a condition called optic nerve drusen. I am scheduled to start treatment in a few days, and as far as I know I have been accepted to participate.

As I begin the next stage of my journey, I have a sense of relief mixed with anxiety about how the drugs affect me. I want to continue to work as much as I can, and keep my life as real as possible.

"I want to continue to be myself, and not be defined by this disease". Something that is very important to me is that there be more awareness and education about HCV so that people will get tested, get treated, and get better, without all of the added burden of stigma, isolation, and financial hardship. I wrote this before I started treatment in 2010".

My treatment was 48 weeks, and that was a challenge at times, but I was undetectable at 5 weeks, and went on to reach SVR at 24 weeks post Tx. I just had my one year PCR a couple of weeks ago, and I remain clear of the virus, and continue to feel better and better…as time goes by.

I am more involved than ever in trying to spread awareness and understanding about HCV, and will remain committed to this for as long as I possibly can. There are some new drugs that have shown amazing results, and newer ones will show even greater promise, and one day a vaccine!

I wish for all to have the possibility for a better quality of life, and a disease free existence.

Hope and Peace

Also visit Daryl's website at


Tuesday, September 4, 2012

I cured Hepatitis C; 34 years old; Genotype 1a

Age: 34
Sex: Male 
From: New York
Genotype: 1a
Acute or Chronic: Acute
Cured Hep C: YES!!
Treatment Length: 24 weeks 
Treatment used: Interferon and Ribavirin 

Nearly two and a half years ago when I heard of my HIV and Hepatitis C diagnosis; I was terrified. As if having HIV alone was not a frightening diagnosis I was dealt a double whammy.  I was what is called co-infected, or what I like to call co-diagnosed. I was more scared hearing my HEP C diagnosis and the treatment that would ensue, than I was hearing that I had HIV.  I knew about HIV, but I knew nothing about Hepatitis C.

How could I have gotten Hepatitis C?  Hepatitis C only happens to IV drug users and Celebrities like Pamela Anderson and Naomi Judd. This is how I related to Hepatitis C.  Though I did in the past experiment with recreational drugs, I never stuck a needle in my arm to do them. How did this happen to me?

This co-infection has become an epidemic in New York City and other places around the World, and it's occuring more in people who are NOT IV drug users. It is happening through those engaging in unsafe sex, spreading just as HIV does. 20 -25 percent of people infected with HIV are also infected with Hepatitis C, conversely 5-10 percent diagnosed with Hepatitis C are also co-diagnosed with HIV.   Nearly 4 million people in the United States alone are infected with HEP C and 1 in 5 people do not even know it.  Just as with HIV you can prevent, it and be tested for it, and you too can have a chance at curing it Hepatitis C, unlike HIV - which there is currently no cure for. The key is catching it early to give you the best chance possible at curing it.

After 9 months since starting Hep C treatment (3 months post treatment), finally a happy day. I received my numbers for my 3 month follow up post Hepatitis C treatment, and the Hepatits C is gone, it has been cured! At week 6 into treatment I went from a Hep C VL of 7 million to undectable and have remained that way.  At the end of treatment my CD4 was 240,  my platelets were very low, and my wbc had dropped at one point to 1.0 and is now 3.0.  My HIV remained undectable throughout treatment, and still is today.  

Thankfully, my numbers are on the rebound. My CD4 has gone from 240 right after hep C treatment to 311 three months later, and is expected to keep climbing. My WBC was 2.0 after treatment and is now 3.0, My AST/ALT (liver function tests) once off the chart, are now in the 20's (normal), kidneys are functioning fine, and my platelet count is back to normal.  It's amazing how everyday I am feeling better and better.

This news came with cautious elation Why? Because 6 months post treatment is the final indicator of viral clearance/cure, but my doctor said I could celebrate with this last test.  Also, i know not everyone is as fortuneate as I to have caught there Hep C early, to even treat it, and further, cure it.  For many the battle with HEP C is life long.  So, while my case was a success story, I keep in mind all of you who are currently fighting Hepatitis C. With emerging new that will be less toxic with shorter treatment times, cure rates will be a certainty for most and I will be just one of hundreds of thousands cured. Stay strong, hang in there, this to shall pass.

To everyone:  If you do not know your Hepatitis C status I URGE you to get tested. Type in your zip code below and find a testing location near you. Many of the places that offer free HIV Testing will also offer Hepatitis C testing or be able to refer you to a place that does.  Visit to find a test location near you.

If you would like to contact me privately you may do so: just e mail

Also, if you have cured Hepatitis C join us 'dragon slayers' on Facebook and on twitter: