Saturday, March 24, 2012

Getting Through the Hard Part of Hepatitis C Treatment

The Uphill Part of the Journey
A weekly injection.  12 10 pills taken on a daily basis.  A treatment I give to myself in the comfort of my home.

Hepatitis C treatment might look easy on paper, but make no mistake, this is a real-life home version of chemotherapy.  Yes, I said chemotherapy, as in cancer treatment.  And yes, I am correctly using this word per the broader definition of chemotherapy that most people have forgotten about:

treatment of an ailment by chemicals, especially by killing micro-organisms.

In addition, my home Hep C chemotherapy causes some of the same side effect that cancer treatment does, like: suppression of red and white blood cells production, increased susceptibility to infections, fatigue, weakness, changes in taste and smell, changes in appetite, nausea, vomiting and diarrhea, fever and chills and hair thinning.  (For the complete list of side effect, head over the the HCV Advocate website.)

Ribavirin: The Red Blood Cell Destroyer

Truth is, I have been experiencing, at one time or another, all of the side effects I have mentioned in the paragraph above.  Thankfully, they have mostly been mild to moderate and manageable.  That is until I was confronted by the red demon anemia...

My pink "girl power" ribavirin pills are a powerful but non-specific antiviral drug.  This drug also suppresses bone marrow production of red blood cells; one of its most common side effects is something called hemolytic anemia.  Ribavirin destroys existing red blood cells and impairs the production of new red blood cells in the bone marrow to take their place.

Unfortunately for me, this kind of anemia cannot be treated by taking iron supplements or eating iron-rich foods, since the problem is not my body's ability to make red blood cells due to a lack of the necessary building blocks.

In three weeks, my hemoglobin, the protein molecule in red blood cells that carries oxygen to the cells in my body, has dropped from 13.5 to 8.5 gm/dl, a 37% decrease.  As a result, I have been experiencing shortness of breath, cold hands and feet, increased heart palpitations and devastating amounts of fatigue.  Because the drop in my hemoglobin has occurred rather rapidly, I have experienced significant anemia-related symptoms quite quickly.

More than anything else, the resulting decrease in my blood volume has made my Postural Orthostatic Tachycardia Syndrome (POTS) symptoms horribly worse.  I have been closer to passing out when I go from sitting to standing than I ever have been prior to Hep C treatment.  My pulse rate averages between 100 to 110 range at rest, my blood pressure has dropped as low as 100/66 and there are whole stretches of time where I feel so unwell I can barely move around the house.  Sometimes crawling seems like a better option than walking! 

But I was prepared for this to happen.  I called my neurologist at the Mayo Clinic and he told me that anemia and the resulting drop in blood volume would make my POTS worse.  He prescribed a steroid medication called Florinef to counteract the effects of the anemia, a medication that my liver specialist finally agreed to letting me take on March 12th when we learned my hemoglobin dropped from 13.5 to 10.5 gm/dl during the first two weeks of treatment.

Taking this medication isn't without some risk, especially if I get an infection and my immune system is compromised (more about this next week when I write about Interferon: The White Blood Cell Destroyer.)  It isn't a prefect solution, but it does make it easier to move around the house and attend a medical appointment...

Getting Serious About Side Effect Management

So I was faced with my first serious conversation about treating serious treatment-related complications this past Monday.  The topic of the day was all about anemia.

Some of the first words out of the nurse practitioner's mouth were "blood transfusion" followed by cancer clinic, which happens to be where Hep C patients are sent for outpatient blood transfusions.  And the cancer clinic she mentioned?  Why it was the same exact one where I was seen 24 years ago and diagnosed with leukemia.

However after the doctor entered the room, "dose reduction" of the ribavirin from six to four pills a day was the course of action prescribed.  Luckily for me, I had already read about ribavirin dose reduction and how researchers have discovered that Hep C treatment-related anemia actually predicted a better response to treatment. So when my doctor suggested it, I was prepared to hear and accept his recommendation.

Beside dose reduction and blood transfusions, a third option is using an inject-able drug called erythropoietin to stimulate my bone marrow to make more red blood cells.  There is some controversy about using this drug because of black box warning issued by the FDA in 2007.  Frankly, I feel better about the dose reduction option over the use of erythropoietin, but would use this new medication if faced with the discontinuation of Hep C treatment because of anemia.

I left my appointment on Monday with a follow-up lab slip to check on the status of my anemia over this weekend.  I began the dose reduction of the ribavirin right away too--as soon as I got out of my appointment it was time to take my 3 PM medications.

Because of the anemia, going to my doctor's appointment felt like running the Los Angeles Marathon--literally!  I was so completely exhausted that I slept for 3 hours once I got home just to recover.  Thank goodness my husband drives me to my appointments, because I am so debilitated right now that there is no way I could get anywhere on my own.

While my body says the does reduction is helping, the truth is I am not out of the woods just yet.  My blood counts need to be closely monitored and further refinements to my treatment may be in order, including any of the three anemia treatment options I have mentioned above.

Trudging Through the Hard Part

So you see, the uphill part of my journey has begun.  This is the part where when the going gets tough, the tough (a.k.a. me) get going.  This is also where I hope the footprints on the beach go from two pairs to one, as someone sees I need some extra help, reaches over and carries me for a little while.

PS  This is also where I need you, more than ever, to support me anyway you can.

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Anonymous said...

Selena, Your posts are so full of information and so interesting. I am so surprised that you can still find the energy to write. We had to watch my Mom's hemoglobin very closely for years. If hers went below 8.0 she was in the hospital getting a transfusion. I remember she would feel like a rag doll when it was low. I feel bad for you. Trying to get to doctor visits when you have no strength and are overwhelmed with fatigue is very difficult.

Keep fighting the good fight Selena, I for one, am in awe of your strength!

Doris said...

Having any certain disease could lessen our confidence and we somehow lose hope to live more and be happy. But we must fight, there are still many things we can do. It is not yet the end. I support your fight. Just be brave.

Dee said...

Hi I would like to say your blog is very good. I wish I had something like this when I treated back in Sept 2011 through Feb 2012.
I did have a great support group on MEDHELP though you would have been a great addition.
I had all of the symptoms and the HBG dropping from 14.8 to 9.7 was awful. I know how you must have felt. I lost 80% of my hair, was bald on sides and back, and that was the least of my sx.
Thank you again