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Hep C Journey

Oct 04, 2008 - 0 comments
Tags:

Hepatitus C

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hep

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interferon

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Pegylated Interferon

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interferon pegasys

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ribavirin

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hepatitis:ribavirin



I completed Peg-Intron/Ribavirin treatment from Sept. 2006 to Sept 2007.  I contracted hep C in the army in 1975 from airjet guns or oral surgery.  Still in battle with the army about benefits.  
In about the very early 90s I began to experience joint pain and chronic fatigue.  Went through testing to determine what was causing it and hep C was discovered.  Had a liver biopsy.  Minimal liver damage and hep C determined to be "inactive", so on the advice of my doctor and the prospect of better treatment down the road, we decided to wait on treatment.  I had no really major health problems.  In 2006, I began to lose weight at an alarming rate.  Got down to a size 2 jeans and could still stick my fist between my stomach and jeans.  Developed a migraine headache that lasted nine weeks.  Was very light and sound sensitive as well, and became extremely tired.  During this time I went to several doctors who performed a variety of tests all saying I was fine. I persisted with the doctors, taking my two page list of symptoms with me and telling them I KNEW something was wrong.  One of the doctors told me to go make an appt with a psychiatrist and recommended one to me.  Finally a neurologist told me that he thought I had lupus, and sent me back to my PCP.   I persisted and persisted with my list until a nurse practicioner sent me to a good rhuematologist who said he didn't think I had lupus.  He finally determined that the Hep C  had gone active.  He sent me back to my PCP who then sent me to the gastroenterologist who recommended we start Peg-intron/Ribavirin treatment immediately.  He told me that he did not think I could take the treatment, discussed it with my doctor who also said the same thing.  My husband and I discussed it and as I was dying at the moment, we decided that I might as well die trying, so we opted for the treatment.  
I began the treatment and was so ill that I lost even more weight, became depressed beyond description, and couldn't keep food down. I hurt all over and was more miserable than I had ever been in my entire life.  It went beyond description.  All I could do was lie as still as possible and try to pretend I was somewhere else than in my sick body, and that some day this would stop.   I talked to my Dr. about the continued weight loss and he told me to stop the treatment.  This was about 2 months into it. I had a four month supply of meds, so I refused to quit, my husband refused to let me quit, and I continued treatment.  
It is important to note that before I began treatment I set up a support system for myself.  Number one, my husband volunteered to take care of whatever help I may need no matter how ill I got (how lucky am I?).  Then, I told my parents the situation, the depression stats, and they agreed to call me at least once a day and help me in whatever way they could.  I contacted all my friends and told them that I needed their phone calls, no visits please, as I was losing my hair and my appearance was apalling.  I asked for prayers from my church, and I found a good psychiatrist.  My GI doc had started me on anti-depressants prior to the treatment as a preventive measure.  When I told my psych Dr. about being ordered to stop treatment he started me on a rarely used drug called remeron--well known for its weight--gaining side effect.  It also helped me sleep, and I began to develop enough of an appetite to eat.
Being on the Interferon was like being in a semi-sleep state as far as being aware of the reality of my situation.  I looked hideous and about 20 years older and I never really realized how very very sick I was.  I lost the ability to make decisions, couldn't get out of bed some days to get to the fridge to get a carton of yogurt.  Couldn't take a shower unassisted.  My husband would drop in on his break at work, drop off something for me to eat and high-tail it back to work.  True to his word he took complete care of me.  I was completely incapacitated.  There were days when I just prayed to die.  I thought about killing myself every day but couldn't do it.  I made appointments with my psych dr. sometimes three times a week--my dad would pick me up, wait thru my appt. and take me home.  I was barely able to put on a hat and walk into the dr. office.  I took phenergen suppositories for the constant nausea.  The remeron caused me to gain so much weight that they had to stop it.  My shrink then put my on Zyprexa to stabilze my moods, help me sleep and keep the weight on.  The weight continued to pile on, but I figured I would deal with the excess weight after I got well.  I began to ask around for marijuana, as I thought that it might help the symptoms.  I did eventually find someone to supply it to me,  but I was just one month away from finishing treatment so I toughed it out without it.  My whole family pitched in at Thanksgiving and Christmas.  We always celebrated these holidays at our house for the last twenty plus years, so my sister-in-law came and did the entire Thanksgiving dinner.  My daughters-in-law helped get everything set up for Christmas.  My youngest son and his wife were overseas in Germany and came home for Christmas and I was bound and determined to have a Christmas tree and the holiday celebration as usual.  
While I was still on the treatment I had to have a sinus surgery.  That, again, nearly cost me my life, but couldn't be avoided.  (Long story)  
Then, in July of 2007 we sold our house as I couldn't make it up and down the stairs anymore, so on August 31, 2007 we moved.  I was unable to do much of anything but get from the sold house to the new house.  My husband hired movers and he did the rest.  On my really good days I was able to drag out of bed and pack a box.  I did this for quite some time in anticpation of the move and that's about the only physical thing I accomplished all year.  My dear daughter-in-law came and cleaned my entire house so that we could show it while it was on the market.  She even cleaned the windows!  
My friends and family remained supportive throughout the entire time, as well as my doctors encouraging me along.  I will say that when I was in a deep deep depression I did call around for help and support and it was there as promised.  I had to make an effort to reach out for it and my husband reassured me every single day that we would make it through this.  Never ever, not one time, did he make me feel like I was putting him out in any way, and he doggedly kept going and trying to keep my spirits up the entire time.  I realize that not too many people could be as blessed as I was while going through this.  I can promise that had I not had the support I did I would have just given up and died.  
I took my last treatment in my new residence on Sept 2, 2007.  After about 3 weeks it seemed like a fog started to lift from me.  I saw my face  (really "saw" it) one day, and broke down and cried.  I looked so old!  I started to feel better for about three months.  I had gradually weaned myself off the psyche drugs and was feeling like I would live.  Then, the fatigue began to increase again, and I began to develop joint, muscle and bone pain. I had severe bouts of asthma like never before.  I got so tired that I was back in bed again.  My doctor told me that my symptoms were not the result of the interferon but something else.  I don't believe him.  I started having raging anxiety attacks, sweats, my thyroid went crazy--up, down, up, down.  I developed thyroid antibodies.  I was hypothyroid before, but it got worse.  It seemed that wherever my body had a weak spot, that area became out of control.  I hurt all over, just like when I was on the treatment.  
I'm 13 months out now, and still suffering all kinds of symptoms.  Insomnia, anxiety, fibromyalgia, back pain, joint pain but no detectable arthritis, mood swings, some depression, extreme fatigue but with some good days interspersed.  If I do go about daily activities for 2 or 3 hours, I will be nearly collapsing with exhaustion.  Actually I did have days where I passed out.  I have vertigo on some days, nausea when I eat, IBS, and my memory--WOW--I can't remember ANYTHING!  It is really very very frustrating.  I write things down to remember them and I lose my lists.  I forget words, names, appointments..... Also, I have lost a lot of dexterity in my hands, my muscles have gotten weak and when I try to exercise--even lightly--I get asthma or bronchitis.  I have neuropathy in my feet and I can barely walk on them in the morning.  
The list of symptoms could go on and on.  I am not like I was.  BUT--I am alive, and I would not be if I hadn't gone through the treatment.  If I had the same choice to make over again, I would still do it, but I wish that someone would have prepared me for the aftermath.  It would have helped to know that I may not be able to go back to work and that I would still suffer from physical symptoms.  I was beginning to think I was crazy!  All my doctors were telling me I was just fine and I'm just suffering from stress, but I keep telling them it's from the treatment.  I know it is because it FEELS just like the treatment.
I still see a therapist once a week, and a psychiatrist at least once a month.  We are working on pain management and trying different drugs to help with the different symptoms.  Most of them don't work, but I am fortunate enough to have a psychiatrist who will not give up.
I haven't been able to go to work as I had planned after my treatment was done.  I have applied for disability and been turned down twice. I have hired a lawyer and we're still working on it.  
We are still trying to recover financially from the treatment.  We have medical insurance but our share of the cost has exceeded 20,000 dollars with the extended year of doctor visits and the surgery.  We may have to sell our house and move again due to the unanticipated ongoing medical costs, and the loss of my ability to produce income.  My therapist has told me that he is not sure that physically or mentally I can make another move.  
I do feel traumatized and have been working through that in therapy.  
My parents are elderly and have been suffering many life threatening episodes throughout this time as well. That's another VERY long story and the stress involved in their situation has also been life threatening for me.  This has been hard on them too, as we are very close. That has been very difficult for me handle, as I am so limited in what I can do to help them.  
I was glad to find this forum to see that I am not crazy--that others are suffering from after-effects of the treatment as well.  I was beginning to doubt myself.  I have also tested Hep C free as of Sept 2008.  My liver enzymes are perfect as well as most other tests.  
My rheumatologist told me that he couldn't help me anymore since I didn't respond to any of the standard or even the older drugs now used for fibromyalgia.  I have not started pain medication yet, as I am saving that as a last alternative.  My husband and parents have all talked with me about it and are supportive of me taking pain meds at this point because now it has come down to a "quality of life" issue.  I do well on opioid pain meds and don't experience the usual mental effects.  The only side effect that I seem to have (from the opiods) is insomnia, and I have that anyway.  I have responded well to very very few drugs.  Most have such adverse side effects that I can't take them.  
I still remain cautiously optimistic.  I know that not everyone has the great support system that I had, but if you do, or can round one up, reach out, be honest about your needs and your illness and see how people respond.  You have to let go of your pride.  After all, pride will do you no good while you're lying in a casket.  There will be those that will be there for you for the long haul.  Believe it or not, this is kind of a short version of the whole horrible story.  But in the end, I am grateful. I am grateful to God that I have my life. I am grateful to my family and friends who stuck by me through the whole terrible ordeal, and the personality changes--yes, the interferon can cause personality changes big time.  I wasn't aware of that until I began to come out of "the fog".  I began to see how it had affected me and how my entire personality had changed.  Gradually I have been coming back.  Due to the parade of drugs that I have been on, it has taken awhile for me to "discover" myself again, but I do see the old "me" surfacing from time to time.  Six months ago, I had to go to bed around 5:00 or 6:00 p.m.  Now I can make it up till nine or ten sometimes.  There are still 6:30 or 7:00 evenings, but they're not as frequent as they used to be.  If I made this kind of progress in the past year, then I believe I will continue to make slow progress throught the next year.

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