Thursday, April 26, 2012

15 Ways Hepatitis C Treatment is Kicking My Butt

In eight weeks, I've moved from the hard part of Hepatitis C treatment into the uphill climb portion of the journey.  

So today I am going to share some very personal details about the many ways Hepatitis C treatment is kicking my butt.  I do this partly to vent and partly to educate.  Think of this post as a behind-the-scenes look at what Hep C treatment is really like and then file this under TMI--as in, too much information.

For starters, I didn't know that between weeks 8 and 12, the full effects and side effects of the Hep C medications rear their ugly heads.  I'm taking three different medications, Pegasys, ribavirin and Incivek, each with its own laundry list of side effects.  Which means a whole smorgasbord of things might happen to little old me. 

That, of course, is on top of all the symptoms of my other chronic illnesses. 

So here are all the ways Hepatitis C treatment has kicked my butt so far:

  1. Taste bud changes: Food just doesn't taste that same, or all that good, to me anymore.  It's making taking pills with food four times a day a real chore.
  2. Nausea: I hate feeling sick to my stomach.  The worst is feeling nauseated AFTER I take my medications.  I frequently find myself praying for everything I just swallowed to stay down while I wait for the anti-nausea medication to kick in.
  3. Fire-rrhea: A special kind of diarrhea, that closely resembled what happens after you ingest colonoscopy prep.  Only this is from the anti-viral drug Incivek and occurs on a random, but frequent, basis.  The fire refers to how my tush feels after the rrhea subsides...
  4. Anal itching: This is the aftermath of fire-rrhea (see #4).  Also known as the itch you must not scratch, because you'll invite a whole host of nasty problems into your life if you do.
  5. Pruritus: A form of whole body itching that can occurs anywhere on your body, usually in several places at a time.  That's because it's associated with your nervous system.  It can sometimes be associated with a having a rash (see #6). 
  6. Rashes:  As with several other items on this list, rashes during treatment can be caused by more than one medication--in my case, Incivek and/or ribavirin.  The Incivek rash notoriously shows up between weeks 8 and 12 and can cover a large part of the body.  I just have to wait and see what happens to me...
  7. Anemia: I've already talked about this side effect here and here, but perhaps what I forgot to mention is that BOTH ribavirin and Incivek can cause anemia.  Anemia gives me frequent shortness of breath, tachycardia, cold hands and feet, pale skin and a profound lack of energy.
  8. Rag Doll Syndrome:  Saying I have fatigue just isn't descriptive enough.  There are literally days where I feel like I cannot move because I have no energy.  And there are many nights where, completely and utterly spent, all I can do is collapse into bed and hope that some sleep can restore me.
  9. I'm Hot, I'm Cold:  No, it's not peri-menopause, it's my weekly interferon shot. That and my anemia-induced cold hands and feet.  It is making it really hard to gauge my body temperature and has led to several incidents where I have gotten overheated simply by having too many covers on my body while I am in bed.
  10. Bright Lights:  Interferon is also making my eyes exquisitely sensitive to light.  This might be a consequence of the mild (and hopefully reversible) retinopathy that has developed in my eyes over the past 8 weeks.
  11. Strange Noises:  For some reason, I can hear the background noises in TV shows as if they are in the foreground and it literally drives me crazy trying to figure out what is being said and by whom.  I also have developed tinnitus in my left ear, as well as occasional stuffiness in both of my ears.
  12. Intra-nasal Sore:  In the really weird category, after a massive pruritus attack involving my nose, I developed a sore inside my nose.  It has literally taken over three weeks, three doctor's visits and two prescriptions for it to start healing.  It's now at about 95% healed.
  13. The Sahara Desert:  Good grief!  These medications have dried out my skin, my eyes, my mouth, my finger nails and my hair.  Thankfully I have found several different over-the-counter products that help combat the dryness.  Plus I drink LOTS of clear fluids every day.
  14. Dizzy Dummy:  There are so many days now when gravity is just not my friend.  For example, a trip from the living room to the kitchen can require a slow rise from sitting to standing, a slow shuffle to the kitchen and then a nice sit-down rest once I get there.  I am also using my cane and rolling walker a whole lot more these days.
  15. The Water Works:  There are random moments every week, in response to ordinary things, where I am overcome with the need to cry.  Before you start thinking that I am losing it, I should tell you that this is a documented psychological side effect of the interferon.  So are crabbiness, feeling keyed-up and forgetfulness too.
Now I know these all sound terrible when compiled together into a list.  So I promise that next time I have the energy to write a blog post, I'll share with you all the ways I manage and combat these side effects.  I've got a handy dandy Hep C treatment first aid kit filled with over-the-counter items that are really helping me keep these side effects manageable. And where those items have fallen short, my doctors have stepped up and given me prescription medications to fill in the gaps.

Being prepared with home remedies in hand from the start has made a big difference in the course of my Hep C treatment.  I can't wait to share my tips and tricks with you next time.

PLEASE NOTE:  If you are thinking about Hep C treatment, know that everyone on treatment will experience some side effects.  You can't know until you start treatment how the medications will affect you.  Thankfully, most side effects are mild to moderate and the vast majority can be managed with the help of your doctor so as not to interfere with your treatment and its success.

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Friday, April 13, 2012

Health Care Professionals Can Be Idiots Too

Health care professionals can be idiots too.  There, I said it. 

Yup, they can be just as stupid, ignorant and clueless as the rest of us...only their mistakes and missteps can have life-altering, and sometimes life-ending, results.  Based on this alone, I want to hold them to a higher standard. 

Only I am quickly learning that what I want to do and what I need to do are two completely different things...

No Respect for My Pre-Existing Conditions

Truth is, I don't want to have to be writing this post and letting you know that things are not going smoothly for me.  I don't want to discourage anyone living with Hepatitis C from considering their options and proceeding with treatment if that is in their best interest.

But I have a BIG problem and it is not going away.  So I need to deal with it.

My problem is that I live with multiple chronic illnesses, including diabetes, fibromyalgia, chronic pain, cancer treatment late effects and, the biggest complication of all, dysautonomia.  I have repeated these diagnoses ad nauseam--over, and over, and over--to my Hepatitis C treatment team.  They nod, they write them down, but at the end of the day they just don't get it.  They don't get that my pre-existing medical conditions are affecting my Hepatitis C treatment experience.

Won't Talk to My Other Doctors

I was warned before the start of Hep C treatment by my neurologist that ANY treatment-related anemia would make my dysautonomia symptoms worse.  At the start of treatment, when I share with the hepatologist and hepatology nurse that the neurologist prescribed Florinef, an oral steroid medication, to treat any increase in my dysautonomia symptoms, they said I could not take oral steroids during treatment.  At week two, I asked my hepatologist to call and consult with my neurologist regarding my dysautonomia because, sure enough, treatment-related anemia was making my dysautonomia symptoms much, much worse.  Shortly after my request, the hepatologist agreed I could take the Florinef.

Silly me, I thought the reversal in the hepatologist's stance was because the two doctors finally talked.  That was until I talked to the hepatology nurse a few weeks later, who commented, "I thought the Florinef was preventing anemia by saving red blood cells."  "Uh, no," I replied, "It helps my body retain salt which increases my blood volume and makes up for the loss in blood volume due to anemia."

Playing Pass the Buck

I'm also not sure why, but when I started Hepatitis C treatment, I wasn't given a consent form for treatment that listed all the goals, procedures and side effects of treatment.

That was unfortunate for me, because it meant I had no idea how my hepatology treatment team was going to handle things like anemia, low white blood cells counts, side-effects, etc.  So when things have come up--and it seems like every week something new does come up--I spent a lot of time and energy bringing my concerns to the hepatology team's attention.

From there, sometime they handle the problem and sometimes they delegate it to someone else.  Either way, it always means a lot of work for me: making phone calls, making appointments, going to doctor's visits, going to the pharmacy, asking for follow-up lab slips, asking for lab results, etc.

Sadly, when they decide to "delegate" my care, it has the flavor of dumping me onto another medical service that might or might not be able to help me.

For example, hepatology tried to delegate my blood transfusion arrangements to my primary care doctor.  Only I found out my doctor was out-of-town at the time and the doctor covering for her informed me that the Family Health Clinic didn't have a way to expedite a request for an outpatient blood transfusion.  So I had to call the hepatology nurse back, let her know my primary care doc was out of town and that hepatology needed to make the blood transfusion arrangements.  The end result?  I got sent to the Emergency Room instead of the outpatient cancer center (where it turns out I would have gotten better patient care.)

The Laissez Faire Approach

I have been pushing hard to have my blood counts monitored on a weekly basis while they have been in flux.  After all, I figured if the hepatology staff had the numbers in front of them, they could be proactive in treating these side-effects.  Especially since I told them that anemia would make my dysautonomia worse...

Boy, was I wrong.

On top of that, I have to listen to the hepatology nurse constantly telling me I don't need to have my labs drawn every week.  My best guess at what that really means?  She is too busy/absent-minded/lazy to be checking my labs on a weekly basis and following up with the doctor when action is needed.

I don't agree with her.  So I ask for a lab slip and then call her weekly to ask her to check my results. 

My latest dilemma?  I just had labs drawn Tuesday, April 10th.  Based on those labs, my hemoglobin has once again dropped, from 9.8 to 9.1, in 7 days.  (The critical level is 8.5.)  But the hepatology nurse made it a point to tell me she doesn't think I need to go back to the lab this weekend and have another level drawn before my doctor's appointment on April 17th.  No, instead, if I did things her way, I would talk to the hepatologist about further side-effect management decisions, like a ribavirin dose reduction, blood transfusion or start of erythropoietin therapy, based on week-old hemoglobin results.

Of course that left me asking myself How does this make any sense?!?

Today I sent out an email to my primary care doc asking her to fax me a lab slip so I can get the level rechecked closer to my upcoming Tuesday appointment.  That way, I can get the hepatologist and his nurse practitioner to make any necessary arrangement during my clinic appointment for a blood transfusion or a prescription for erythropoietin based on real-time lab results.

I am happy to report got the lab slip a few hours later and I am good to go back to the lab this weekend.

I'm One Frustrated Patient

I am so frustrated about this ongoing situation.  I would LOVE to transfer my care to another hepatology nurse, only there isn't another one in the practice.  So all I can do is deal with my anger in productive ways by being the best damn patient advocate for myself that I can be.   Because, well, my life really does depend on it right now.

I can also list all the things that really irk me about my current hepatology health care providers.  Maybe you can relate to this list too.  After all, can you really trust health care providers who:
  • don't listen to their patients or ask them questions
  • don't look up information on the conditions their patients' have
  • don't read up on the medications their patients take
  • don't or won't take responsibility for their patients' care and well-being
  • don't or won't work with other health care providers as a team
  • don't communicate with patients by email
  • won't be proactive about the management of their patients health problems

That said, rest assured I am not going to let my Hepatitis C treatment providers injure or kill me. No way, no how--it's not going to happen. That's because I have a health care team that I can fall back on and ask for their help when I don't agree with how my Hepatitis C treatment is being managed.

Yes, today I am thankful I have other health professionals I can rely on for my care.  In particular, thank goodness for my primary care doctor! I think I am going to owe her a huge debt of gratitude when all is said and done.  What do you think?  Should get her a present?  If so, what should I get her?

Still hanging in there and taking it day by day...even on Friday the 13th!

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Wednesday, April 11, 2012

My Life, While on Hepatitis C Treatment

Welcome to Wordless Wednesday,
where the focus is on visual images.

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Thursday, April 5, 2012

The Emotional is Just a Tiring as the Physical

I know it is Thursday.  But the truth is I am still recovering from last Thursday.  Finding out my aunt passed away, after getting a blood transfusion earlier in the week, on top of coping with a painful new sore in my right nostril and dealing with the ongoing side effects from my Hepatitis C treatment, quickly wiped me out.

I hate when that happens...

I also hate how I continue to underestimate just how draining dealing with the emotional can be.

Dealing with the death of my aunt was a huge emotional upset to process.  And as loss often does, this recent one brought up feelings from previous losses and got me thinking a lot about my family too.

It's ironic that the whole blood transfusion ordeal earlier in the week had already gotten me thinking about my deceased dad and how his blood transfusions had literally saved my life during my cancer treatment 24 years ago.  Now I was losing the person who, in the years since his death, had become an important living link to his memory and legacy for me.

Besides the thoughts of my deceased dad, I also thought about my siblings, of which I have three.  My living family is not as easy topic for me: you see, my own siblings choose not speak to me.  I know that at the core, it is a legacy they inherited from our abusive mother.  What I cannot understand is why they choose to perpetuate it, when all I want to do is heal and move beyond it.

All these heavy duty emotional issues aren't exactly what I want to be feeling as I continue to struggle with the hard part of Hepatitis C treatment.  Ah, but life can be cruel like that.  You can't always control when life delivers your next shipment of lemons...

As for my aunt's story, in the days before I began my Hep C treatment, she was hospitalized for a serious infection that required emergency surgery.  I got to speak with her afterwards, at which time it looked like she had turned the corner and would be alright.  She would need to go to a rehabilitation center for three months for wound care, but everyone was optimistic she would make a full recovery.

So when my cousin called me a week ago today to tell me her mother died, well we both just cried together between the spoken moments of shock, sadness and why.  When we finally hung up the phone, I couldn't help but keep crying, grieving my missed opportunity to speak with her one last time.  You see, just the day before, my cousin had emailed me, telling me she was doing OK and giving me the number for the rehab facility so I could call and check in on her.  Needless to say, I never got a chance to do that.

I know that when I do too much activity, I risk getting flared-up.  What I constantly underestimate is how draining emotions can be on my energy too, especially when they hit all at once like they did last week.

Now I guess I could have put off dealing with my feelings.  Except that experience has taught me when I ignore or suppress my emotions I make things worse, not better.  No, despite how draining it was to deal with them in the moment, it was better to feel my feelings so they could work themselves out and then dissipate.

Given my limited energy right now, it is no wonder I am feeling both physically and emotionally drained!

So as I slowly journey back to my more usual state of mind, I am going to be extra gentle with myself and give myself more rest to help my recovery from these recent emotional upsets.

And as for those pesky unresolved issues that were dredged up last week, I choose to ponder those further when I am in a better physical place to handle that kind of energy drain.

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