It was 1972. I was 19 years old. Married for only 9 months and afraid to admit, I was already pregnant. But there were many other, (so I thought at the time) more important things to deal with. Like my much older and troubled husband being in jail for attempted murder. The pain was unrelenting. Both psychologically and physically. When the physical pain got so intense that I could not stand, I crawled to find help and ultimately found myself waking up from surgery for an ectopic pregnancy that had ruptured a fallopian tube. That surgery saved my life, as did another one that followed in 5 weeks. However it also was how I became infected with Hepatitis C.
It was in the mid '80s, when the first test for detecting this virus was developed that I learned I had it. I was without symtoms for many years. In fact, I forgot all about it and led a fairly normal, sometimes raucous, single life.... until about 6 years ago when I found myself more sick than well with, primarily, gastro problems and extreme fatigue. However, it was only in late 2005 that a internist told me that there was "treatment" for the Hep C that most likely was causing all the other problems.
What follows is some journal entries I made once I started the medical treatment to rid myself of it. Some of the more personalized ramblings that would not be of interest in this format have been left out.
My hope is that all of you who are in or about to go into "treatment" will benefit from something offered here. When I started this, I didn't find anything "on line" I could relate to or gave me a real life view of what I could expect.
I truly did not expect to be one of "those people" who had all the ugly side effects. Afterall, I had no problem with side effects from any other medicine in the past...I was strong and had support of family...this was not going to be such a big deal. I was not fearful. I was not weak. I was as informed as I needed to be on the subject...well, sorta. Read on. BTW-I now have no detectable Hep C viral load
July 12, 2006
Pegasys and Ribavirin. Those are the Drugs, Medication, Treatment, whatever you want to call them. They’re nasty. But, then so is the problem they’re meant to cure, Hep C. Or, as I first heard it called, Non A Non B Hepatitis. But, I won’t digress 35 years. This is about here and now.
So far, so good is my experience. Has not been bad, but then I did just start them last Friday evening; it’s only Wednesday. If I’m lucky and they work, I’ll be on them for 48 weeks. Yes, another year in the life………
Wasn’t short work or easy time to get on this program of treatment. But, once I made up my mind, it was on. Interferon is the shot and the pills are a chemo derivative.
The decision to go ahead with it involved numerous meetings with the Internal Specialists at Wake Internal, research on the Internet, talking with people who had done it and talking it over with my employer and my family. ( Well, two of my sisters). Knowing that the cure could be worse than the curse, knowing that even then it may not work, was part of the consideration. The cost too, even with insurance, the cost was a big issue.
Just finding the pharmacy that could get me the medication (these are not drugs stocked by your neighborhood drugstore), and then finding the right size needles to give myself the weekly shot was a traumatic adventure. I was in the middle of loading the syringe when I realized it was the wrong size and would not hold all the medicine. I was sweating so much that had to keep rubbing my hands dry to make sure I didn't drop anything. While I knew, (know) it’s not that big of a deal. Millions of people must do it everyday of their lives. But, see, I’m not one of those people and I’m not medically smart. Uhhhh, experienced. However, I called the nurse for the drug supplier to find out what I could do. The only answer was to get dressed, go to the local drugstore before it closed for the evening, get the right size needle but not worry about the fact that I still wouldn't get the whole dose. What aggravation! I didn't know what size needle/syringe and when the pharmacist starting asking me if thus and so size would work...? That was when I KNEW this was my responsibility and my responsibility alone. There is no one else to depend on. It was up to me to check out all the details, all the possibilities, make all the phone calls, schedule all the insurance matters, paperwork, etc.
The Ribavirin is in pill form and I take 5/day. It's easy to take, but I can feel the effects already. Low fever, chills, nausea and extreme fatigue. Yesterday was a bad day. Today, not so bad.
July 18 2006
Yesterday = bad. Today = not so bad.
Didn't feel good at all yesterday. Worked most of the day. Made it until 2:30. Fever was the worst. Burning eyes, no energy, nausea, aching joints. Slept a little late afternoon. By 8:00ish the fever was gone but I was wasted and only worked a hour or so inputting some new prospect info into the company system.
Very fitful sleep. Finally got up about 5:30am. Didn't feel good most of morning. Nausea. Wishing I could either throw up or just lay down and go to sleep. Nurse said to be sure I drink liquids; water, energy drinks, 100% fruit juice and take ibuprofen. Had to buy a thermometer today so I could keep track. Got much better this afternoon. Temp 99.6 when I got home, about 6:00. No appetite but I have to eat so i can take the medicine, which makes me feel sick and have no appetite. Catch 22? Right now, I'm cooking something from one of those frozen bags of pasta but the smell is really getting to me. Makes me feel sick-at-my-stomach. Really hard to find something i can make myself eat. The smell of cooking food mostly makes my stomach turn but I can't live on salads, fruit and cereal. Not being hungry for sometime is brand new for me. I mean, I know I need to eat (got to in order to take medicine) and I get hunger pangs but it's so hard to decide on something then have the energy to put it together. Surely, weight loss is in the near future. Food-yuk!
November 2, 2006
The day started out as usual. I got up feeling very blah.. Thought it was due to knowing what was facing me at work. It went down from there . I couldn't keep getting ready. My mind was not right. Couldn't focus, couldn't stay on course. I found myself getting more agitated, more upset, more nervous.
Lately, I've had a few bad times. Lately, I've had a few good days. It's a roller coaster that I can't get off of and I've been holding on real tight with my eyes closed through the real scary parts. Persevere? Just keep putting one foot in front of the other. Persist? Have faith in tomorrow. Just “git 'er done!” That worked for a long time. Works on and off lately. Didn't work at all for me today! I finally realized that I was pacing back and forth, wringing my hands, saying over and over “what am I gonna do, what am I gonna do, what am I going to do?”
It's almost like watching someone else have a breakdown. I know she knows how to keep it together and she has stayed in line almost all the time. Today she can't hear me. Today she has broken and she will not stop crying!! No, I do not feel sorry for her. SHE KNOWS BETTER! She knows she will regret not listening to me and will regret involving other people in her pain. But, I am unable to keep her from doing this,,,she is breaking down despite all our good sense. What is happening to me? Why can't I get my act together? Helplessness.
Can't stand that feeling!! Too much bad emotion. Cry, Cry, Cry. Have such a feeling of anguish. Yes. OK. I know it was possible. Yes,, I know all those things smart people know about how depression works but I'm not able to take it!!!!!!1=! A failure, that's how I feel. Not able to talk about it and communicate my thoughts or feelings very well. Stutter and stammer and cry.
So I have had to call in the back-up and ask for help from everyone and anyone. Pride is totally useless and uncalled for now. Ego, get out of here. I'm too afraid of myself right now to trust me being alone. That's a brand new feeling. Alone is how I cope. Don't, can't depend on anyone else. But, I do not know what else to do. No choices. Not up to me anymore.
OK, Mel is here. It's going to be OK. I don't have anything to worry about. All I have to do now is take care of myself. OK. It's going to be OK. I am safe. I am loved. I am just having a bad reaction to the meds. It will be better tomorrow. Things will work out. I will get well and this all will be a bad memory soon. I can deal with bad memories. I know those are completely in my control. Memories fade in time if you don't give them any fuel.
It seems so far away now...the end to this “treatment”. I can do it tho'. I will see it through to the end. I'm not giving up even with this new pressure. Mel is here. I'm going to be ok. Take care of myself
. Going to bed now
. Must sleep
. So tired
. Perhaps I will dream sweet happy things........
December 12, 2006
I am so much better! Mel got me through it. She took me to the Dr. He took me off the “poison”. Even tho' the virus was getting killed and my levels were showing good results, his opinion was that I had to take a break from the meds and get my head head right. Guess the crazy lady scared the be-jesus out of him. Good to have Mel there to talk for me since I was a mess. Took me off the Wellbutrin and gave me some Effector until i could get to a psycho dr he recommended. I still wanted to continue on the meds so i could get this “treatment” over with as soon as possible, but that was not gonna happen.
I lost my mind 5 weeks ago. I lost me.
I have seen the head dr twice. Didn't want to, had to. He took a few notes, asked me a few things and gave me more Effector samples. Over the course of 3 weeks they increased dose from 75 mg to 150mg. It has made a big difference in how I feel. Getting off the Hep C meds has improved my symptoms to the point that only left over is my hair falling out. Big Time!
I'm trying not to traumatize myself about it, but----it's always been the one thing i took pride in about my looks. Vanity thy name is woman. It comes out continually. Big gobs of it when I wash it, covers my clothes. Combing it now is a heart-breaking effort. If I run my hands through it, 10 or 15 strands come out. Vacuuming the floors is another story. Have had to cut the strands of hair off the roller and it's globs and blobs of it in the canister. The top is so thin that any part is half inch wide. It's dry and ugly! What use to be the best part is now the 2nd worst. My fat face continues to be #1. Yeck!
Oh, yes. The sleeping pills. *****n CR lets me sleep all night and that's a change for the better. Only thing that wakes me up now is to pee and brushing the strands of hair off my pillow, my face and out of my mouth.
So, all was well.....for a while. Last Friday back to he Interferon shot. This Friday, I start the Ribavirin pills . I'm in line to board the roller coaster, again. But this time, I know more what to expect: headaches, nausea, upchucking, chills, fever, and extreme fatigue. Hold on tight, close your eyes, pray for the end and that the crazy lady stays in the closet.
January 1, 2007
Happy New Year! Another new start. The time that we take stock, revise plans, make resolutions. Not me. Once a year is not often enough for me. Review and revise has to be a part of my on-going week to week activity.
Been back on both Hep C meds, for over a month-or almost. Some old problems are back and worse than before. Headaches (debilitating non-stop pain), and so tired. Dry eyes, dry mouth, dry itchy skin, no taste buds, no appetite. Nausea is most bad on the night of and day after “the shot”. More trouble sleeping (getting to and staying) now, so the dosage on that has been increased. The hair loss continues. It is so disheartening.
A mystery condition that's been sporadically bothering me for years is back. Those red, sore, feverish bumps on my skin. One on an arm a few weeks ago, small. But now 2 on left thigh. And for the first time, one on my chest. I have a suspicion that they are (and have been) a sign of the viral problem going on in my blood. Maybe, when this thing is banished FOREVER from my body, they will be too!
January 15, 2007
Boy! I am exhausted! It's a good tired, but wish I still had lots of energy for the evening. It's 5:20pm and I suspect M&Ms (sisters) will be here by 7:00 (maybe 7:30?). So happy they are coming here! Mac just called and they are in Greensboro!! Yippy!! This is gonna be fun!! Just hoping they can stop thinking of me as sick and start seeing me well. I need positive energy and not sympathy.
February 2, 2007
Friday night. Use to be date night. Now, it's shot night. If it weren't for the anti-depressant, I'd probably be crying or pacing and wringing my hands. Gave myself “the needle” about 45 minutes ago. Have eaten something and taken Ribiviran and Ultase.
Had Dr's appt on 22nd. He was better this time. (Ha!) Spent more time talking to me and asking me questions. The worst thing is his pronouncement that I'll have to be on this stuff for 48 weeks, no matter where my viral load is. I had so hoped that I might be able to get off it earlier. And, now there's 5 wks to add to the end so that means Sept is the end month if all goes well. Apparently, it takes that long if you're a genotype 1B to be sure the virus is done, gone. Well, as they say.."undetectable".
Blood tests were not too unusual. Some were too low, some were too high, but no news on the viral load yet. Glucose was high, but they said it was because of the “non-fasting” blood test. Red & white counts still low-as expected. Immunity to anything that comes along is compromised. Nothing new to that, they have told me to stay away from small children or anyone who is already sick. And it does account for me catching Mac's cold when she was visiting. Mel got it too.
However, last Friday was a very sick day. I've not felt that bad in a l o n g time. Had to stay home all day, close to the toilet and Kleenex and Ibuprofen. But, I had to see psych dr on Monday. He doubled the sleeping pills and anti-depressants. That has helped a great deal. Have to see him again in 2 weeks. Beginning to feel nauseated and extremely tired now. It's time for more meds too. That bit of news was tempered some by the fact that I've lost 25 lbs. Could be more, but I'm not surprised.
Another week gone. Another Friday night. Another shot. Another chance to cure myself of Hep C. New attitude, better outlook and happier spirit.
The work get quite difficult from time to time. Had to take another day off last week. So tired that I could not stay awake at all! Slept all day and all night. Very frustrated due to loss of control. Want to feel normal and energetic again! Want My Hair Back!
It's meditation time. Monday, back to the head doc.
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