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".






1 comment:

  1. I was diagnosed as HEPATITIS B carrier in 2013 with fibrosis of the
    liver already present. I started on antiviral medications which
    reduced the viral load initially. After a couple of years the virus
    became resistant. I started on HEPATITIS B Herbal treatment from
    ULTIMATE LIFE CLINIC (www.ultimatelifeclinic.com) in March, 2020. Their
    treatment totally reversed the virus. I did another blood test after
    the 6 months long treatment and tested negative to the virus. Amazing
    treatment! This treatment is a breakthrough for all HBV carriers..

    ReplyDelete