My PegIntron/Rebetol Journey
This Journey started for me October 4, 2002. I came off the wait list and got my meds and we are off and running for 48 weeks of treatment. Providing I handle the medications okay. I get frequent blood tests to check my blood count and platelet count watching closely for anemia. Also get my thyroid checked every 3 months as this can cause problems with that too.
So far the symptoms haven't been as severe as they said they would be. I was told the first injection would be the worst but it wasn't that bad. I felt like I had a mild case of the flu all weekend. Was better by Monday.
The second injection was a little worse as far as flu like symptoms and I felt bad until the following Wednesday. And now here it is Friday and I start all over again.
Today is Friday October 18, 2002 and I just took my third PegIntron injection. I will go to bed soon and wake up probably feeling okay and then around early afternoon I will start to feel bad with fever, chills and achey bones and joints. Just like I got the flu. I will sleep on and off all day. I will have the chills one minute and be sweating the next. At least that is how the last two have gone. Sound like fun? LOL
Well this is the beginning. Will keep ya'll informed as I go along with this treatment plan.October 19, 2002... 10:51pm
Woke up this am at 7:30 feeling okay. Didn't start to feel bad until around noon. But not so bad that I had to lay down yet. Headache, body aches, especially around the neck and shoulders and arms.
I ususally take my 3 pills in the am around 7:30 but for some reason, and this is the first time it has happened, I forgot. Didn't take them until around 11:00 am or somewhere in that area. Maybe closer to noon. Then around 2 started to feel like I needed to lay down. Finally aroun 3 or 3:30 pm I went to bed and slept until 6:30pm.
Right now my neck hurts and my head feels a little fuzzy.
All in all I don't think this Saturday was as bad as last Saturday. But still got the rest of the weekend to go.
October 26, 2002... 2:45 am
Howdy. Took my fourth shot tonight around 9:30pm. Last weekend wasn't too bad. Ran around all day Sunday looking at houses and went out to eat. Bought some new shoes for me and the boys... well, I didn't buy them... Jim did - LOL.
Felt great at work on Monday and then Tuesday got diarrhea and nauseated and worked only about an hour and 15 minutes. The doc wasn't there so I went home.
Felt crappy the rest of the week but not so bad I missed work. (but I was late Wednesday morning)
Felt pretty good today at work... tired. We will see what this weekend brings. The doc was out Thursday and Friday so I left work at 2:45pm today (actually, yesterday now). Went and got my hair trimmed. My granddaughter was there getting her very long thick beautiful hair cut too. She is 15 years old now and has a mind of her own. It'll grow.
I just got mine trimmed, gonna let it grow for awhile and see if I like it. I may loose it because that could be a side effect of this medicine. If I do it will grow it back after treatment they said.
Will let ya'll know how this weekend goes. Bye for now.
November 17, 2002... 3:45pm
Hello. Feel okay today. Just a little achey. Felt real achey yesterday but didn't sleep all day. I did last Saturday.
I was sick feeling all last weekend and into most of the week. But I made it thru.
This medicine is whipping my butt at times. But I am hanging in there so far. I have a real hard times in the mornings getting started. Been late for work a couple of times. Sure will be glad when I don't have to work anymore. (did I mention I was getting married Christmas Eve? Well I am!)
Till later! Will keep you informed of the progress. Oh.. I do have a rash at the injection sites. But not to bothersome.
Toodles - Oh again... I find that on Saturday I am more depressed about Josh not being here. I tend to go over the night of his death in my mind. But nothing to alert the doc's about. It is normal grief.
Toodles for real this time!
December 28, 2002...4:30pm
Hello there. Nothing new to report. Except I got married Christmas Eve!
Same just about every week so far. I do get real, real fatigued sometimes. That is when I am supposed to rest but who can rest? I do get pretty sick Saturday's. Sometimes in the afternoon and sometimes it doesn't hit me until the evening. So far today haven't felt too bad. Just achey but I have been achey anyway. I have had a cold, been coughing my fool head off.
I also have a hard time at work ocassionally. With the tiredness and I get foggy brained at times. My memory seems affected at times. Of course that could be the fatigue doing that. But so far I am hanging in there. Having a hard time keeping up with all I have to do at work. But so far again... everybody has been pretty helpful.
Well this may seem pretty boring but it may help someone else decide to do treatment. It isn't as horrible as I expected. It isn't fun but doing okay so far. Just hope it works.
Jaunuary 26, 2003.. 5:16pm
Still hanging in there. I guess I must be doing okay with this treatment thing. I still go to work everyday. I have talked to others on Combo treatment and they cannot believe I am working so much on treatment. I do get very fatigued sometimes. But I am able to do my job. I am a little slower at getting some things done but that could be laziness LOL. I have FMLA and haven't really used any of it. Others in our practice that have Hep C are filing for disability. One of the girls at work asked me why because I work. I don't know. Maybe they just don't want to work... who does? Maybe the prayers for me have been some of the reason I am able to work still. God is good. I do plan on quitting my job after Jim finds a decent job. But I am not holding my breath because of the way the economy is going. We may all be living like paupers before it is over with. I sure would like to stay home and be a granny to my babies. I have worked for so long I don't know if I would know how to act. I think I would LOVE IT!!!!
February 2, 2003...9:30am
Hello. Tried something different Friday. I usually take my shot around 8 or 9 pm but I took it as soon as I got home from work around 6:00 pm. Thinking I would have the worst symptoms thru the night and feel better Saturday... at least by afternoon. But I woke up feeling bad and didn't feel better until late that night. I was thinking maybe if I took my shot at work around noon Friday maybe that would work. I may try it next Friday.
I felt pretty bad yesterday. So far this morning I feel okay. I got up around 7:45 am and took my niece to work. (in my PJ's LOL) Been up ever since. Surfing the web.
Well - will let you know if I try the shot early on Friday and how that works out.
Toodles for now.
February 8, 2003... 1:30am
Well I took my meds to work and gave myself an injection at 8:20 am January 7. That would be 17 hours ago now. I felt pretty achey and had a slight headache around 2 this afternoon. (well yesterday now I guess). But by the time I got home I just wanted to go to bed. I couldn't. Jodi was getting ready to go out with some friends. And the baby always wants me to pick him up when I come in. I ended up crying and couldn't seem to stop for awhile. I feel so depressed. Must be the meds and maybe all this talk about war and terrorism on tv. I don't know. If it wasn't for my babies I would think death might be inviting. But I want to stay here and take care of them (I worry nobody else will) and I want to watch them grow-up and play little league. I really do. I am not suicidal. Just bumbed out I guess.
I want everybody to be happy and in the mean time I am sacrificing my own, I think. I am getting pretty wore out. Like an old shoe. I feel old. So far though I am just feeling real achey. Felt feverish earlier. My head is hurting but I have been up since 6:30 am and ran at work all day so I am pretty tired from that. Not just the meds. Well talk to ya later today. After I sleep will let ya know how I feel.
Next Day after sleeping a lot... slept all afternoon and night Saturday. Woke up to eat and back to sleep. Felt great!
Went running around all day to the stores with my hubby and out to eat and to the humane society looking for a kitten or cat. Haven't found one yet. I want them ALL!
February 15, 2003... 9:50am
Well took my injection yesterday morning at 8:30am at work. Made it through the day okay but started to feel punky around 2:30pm. Got off at 5:30pm and came home feeling real punky but sat at the kitchen table for a few minutes with Jim.. ate a little something (very little) then went to bed. Slept most all night pretty good. Woke up feeling okay this morning except for that blasted indegestion! It really hurts! Hope that is all it is. I took some maalox but it still hurts. I must go to the doc and see about it. Indegestion and acid reflux can cause some serious problems if let go too long. I don't really have much reflux. Mostly just chest pain that goes all the way through to my back like someone is stabbing me. With everything I wonder if the medication is causing it.
I am just glad I don't feel too bad this morning.
Wanted to take the kids to the humane society today but I don't think the weather is going to permit that. Well will write more later.
March 19, 2003... 11:45pm
February 23... 2:30am
Good mornin'! Been a very long week! All last weekend my chest and right arm was killing me. Felt like a heart attack. Went to work Monday morning and called my doctor. Couldn't handle it anymore. He sent me to the emergency room for a work up. Nothing was really figured out. Didn't think it was my heart. Checked my gallbladder. No stones. They wanted to possibly admit me for more tests. I didn't want that and my doctor didn't think I needed to be either. (They called him.) Stayed home from work Tuesday... and Thursday had some x-rays done of my spine and right shoulder. Worked the rest of the week feeling like crap! The week seemed so long and I only worked 3 days.
I have been very fatigued and depressed and I think it is the treatments. I felt better in the beginning when I first started them. I am so tired all the time now. Of course the pain in my right chest, shoulder and arm isn't helping. Constant pain will wear you out.
Anyway the doc called me yesterday and said the x-rays showed something but not sure if significant so he wants to do an MRI to make sure my disc's aren't pressing on nerves. He also said the pain could be intensified do to my meds. So still don't reallly know anything on it as of today. It is always a waiting game, isn't it?
I don't know how much longer I can hang in there with work and the fatigue. I can see why people file for disability now. I just can't afford to live on disability and need my insurance.
My medication went up $100.00 a month. But that is still better thank the $2600.00 it would cost without insurance. It is expensive!!
I worry that they are going to get tired of my being tired and ill at work all the time. But.... I still don't miss as much as the other people at work. I do pretty good at hiding it most of the time.
I just didn't think I would feel this bad after being on treatment this long. I felt better early on with it I think.
It's been awful the last couple weekends again. Especially this last one. I am starting to loose my hair too. It is thinning. Notice it in the shower more and if I run my hands through it it comes out in my fingers. I am still able to work though. The weekends are the worst and maybe some of that is the stress around home LOL. I have lost 32 pounds so far though on the meds. I have no appetite. That is a good thing.
Toodles for now. I know I am not telling much but it is flu like symptoms I am dealing with mostly and fatigue. But I am able to maintain through the week at work. It gets tough sometimes but I am hanging in there!
Visit my journal page too.
March 23, 2003
This weekend was a breeze compared to last weekend! I felt so much better. I was so sick I couldn't raise my head last weekend. I am not saying I felt great but better. I still felt fatigued and had a headache most of the weekend but that could be due to surfing the web all weekend LOL. The kids have been good this weekend and nobody was fussing. The house stayed pretty clean too. All in all it was a good weekend. Now the dreaded Monday and work. YUCK!! I will be so glad when I can stay home.
March 29, 2003... 10:00pmTook my shot early Friday at work. Felt bad last night... tired and achey. Slept on and off all day. Don't feel too bad right now. Got my hair cut off. I was trying to let it grow out but with it thinning I just chopped it back off. I like it.
Things are not too bad this weekend. Jim on a mission doing things like laundry. And he can't do anything else, not even talk to you while doing his mission. LOL I am getting used to it. He is probably mad b/c I said Jodi could go out tonight and I'd watch the kids. He'll get over it. Or not. I have some say where the kids are concerned. He is the new memeber to my family.
April 5, 2003Today is my birthday. The big five-0. I felt real bad Thursday night and last night. Feeling real tired today but so far not feverish like last night. I woke up at 1:30 this morning soaking wet from my fever breaking. Got up and read my e-mail and went back to bed at 3:30am. I was aching so bad had to take a vicodin. I am sparing with vicodin b/c it has so much tylenol in it and that isn't good for my liver. But when you are hurting you have to do something.
We thought this weekend would be a bad one because I felt so tired all week, especially near the end of the week. I am due for a bad weekend because the last two have been pretty good.
Jim is really trying to be more patient and loving and not get upset over little things. I think I have mis-read him a lot. I also think maybe the medication is partly to blame for my paranoia and defensivness.
I came home from work last night and there were 50 roses w/babies breath in a vase with a birthday cake for me and a lovely card. He was afraid I would be too sick today to enjoy it. He is thoughtful. I got up and Happy Birthday Rita Kay I love you was written on the mirror. His birthday is Monday the 7th. He will be 51. He is always telling me for 2 days we are the same age LOL.
Toodles for now.
April 10, 2003...8:45pm
Hello again. My hair is really thinning out but doesn't look too awful yet. It is in bad need of a color but I am afraid to color it for fear it will all fall out! My grey is really showing at the roots. A lot! LOL
Well heck.... I'm fifty now, it should be grey!
I have been so tired I can barely move. Especially in the mornings. I seem okay after being at work for a little while but have to push myself. It helps that I like my job.
By the time I get off I am beat. I come home and do nothing. I usually pick up my grandson b/c he comes running to me. Play with him or just carry him around for a little while and then sit or lay down for the rest of the evening.
Jodi, their momma, had school last night and Jim was at church so I pretty much had to entertain the baby. Josh, he's two, had his cousin to play with and his mom was here to take care of both of them. So I just pretty much had Joey, he is 12 months old and he clings to me and tries to get my goat by getting into things he isn't suppossed to. He grins when I say no and runs giggling. I love it even though it wears me out.
A couple people at work said I have gotten more aggressive since being on my meds. But that it was a good thing b/c I was always so laid back. I actually speak up now and get angry sometimes. And they seem to think it is good. They also seem to think it is funny sometimes LOL. I told them this medicine could cause suicidal or homicidal thoughts LOL. And I am sure not going to hurt myself!! (reminds me of the days of drinking, 10 feet tall and bullet proof!) But I also get my feelings hurt easily, wearing my feelings on my sleeve. And I get defensive at work not just at home. But then I get mad b/c I feel hurt and get hateful. I don't like feeling hateful. That isn't me. My friend at work said when I stop the meds I won't have anything to blame it on LOL. Theresa can make me laugh even when I am upset. She is great. I love her to death. She doesn't baby me, she tells me to suck it up! But she also knows I feel bad and helps me a lot. It's the little things that mean a lot. I know my hubby probably thinks I am a whiner b/c I am always complaining about being tired or not feeling good. BUT I AM TIRED AND I DON'T FEEL GOOD LOL! I have to keep a happy, hearty attitude at work, and most times I do, so when I come home I let it all hang out. Isn't that what home is for? (are ya listening my loving family?)
My bloodwork for my viral load is due this month to see if meds are doing anything. But I was also told won't know for sure until after 6 months of stopping meds. But I have faith, God is in control.
OH... got an uplifting e-mail from someone that read this and her hubby just started this treatment. She said it helped her know what he would be going through and what to expect. Wow! I am so glad this has helped someone. God is good.
Gonna go for now.
April 13, 2003... 5:45pmI think this medicine really plays havac with your body and mind. I took my shot Friday morning after arriving at work. By the time I got home and 6:00pm hit I was so tired, achey, chills, teeth chattering... I was freezing! I had a headache so I just went to bed. Slept pretty well. Had some weird dreams. Felt pretty good Saturday morning. Got to sleep in later than usual.
Felt good enough we took the baby and our dog to the park. I did feel fuddle brained a few times. Real bad. Couldn't remember what I just said or did. But it passed quickly enough. I did almost leave Joey in the kitty kennel! I started to walk out the door without him. Duh! I never do that! I never let the kids out of my site in a store or anywhere. It only takes a second for some fool to grab one.
After the park we went by my mom's to visit and by then I was wore out. I couldn't stay. I just wanted to come home and lay down.
After resting, I felt better again.
My daughter went out with friends and I babysat. So I must have felt better! But I couldn't sleep.
The medicine has affected me this way several times. I have used tylenol pm or ambien to get to sleep. And a couple times I have used xanax for anxiety. I don't like to use too much because of my liver. Got to be careful what you take and how much you take... and how often.
But on rare ocassion I get this wired feeling... my mind races and I talk a lot... I feel like my eyes are permanately open with no sleep in sight. But when I crash from this I am wiped out! This medication sure does weird things to you.
All in all it was a good weekend.
I think I have discovered what has been bothering my right arm and shoulder. The mouse on the computer. It isn't positioned right and my arm and shoulder are reaching upwards and my elbow is hanging off the table. I must fix that!
TOODLES for now. It is off to work tomorrow.... YUCK!
April 26, 2003...8:30pm
Hello. Been lounging, sleeping and checking e-mail, surfing websites most of today. Last weekend I didn't post but did okay. Was exhausted with fever, chattering teeth by the time I got off work last Friday and to bed I went. All thru that week felt exhausted at work.
Now this past week felt real bad on Tuesday, so tired. But didn't get enough sleep the night before. Jodi didn't get home from school until midnight and I was so wore out from watching the babies.
Got off work Tuesday and was in bed by 5:30 pm and slept until 6:00 am the next morning. And still didn't want to get out of bed.
Then had a very trying day at work too. My doctor is complaining about stupid shit! She never says thank you or you did a good job. She requested me to be her own MA. I was working for her and Dr. D but she wanted her own assistant. She is easier to work for in some ways but harder in others. She is pretty hard nosed. (a natural redhead) She is also more about money. Gets mad if I mail a stupid letter of results to patients insead of calling just to say your mammogram is normal. It costs her 37 cents! But she is only paying 1/3 of that. The other docs assisstants send letters! And she is still paying 1/3 of theirs! What is a few more. I don't send that many. Well now I don't send any at all! I play phone tag with the patients.
What has this got to do with my treatments?? Well I'll tell you. STRESS!! Undue stress I don't need when I am showing up for work everyday... even when sick. I have FMLA and I don't use it. But damn it I may now!
Dr D told me more than once how much he admired me for continuing to work on treatments. Do you think Dr N has? No she is probably judging me and wondering how I got it!
I had more adrenaline flowing thru my veins than I have had in a long time on Wednesday at work! (got a lot done though from anger, she probably thinks it is her complaints and I got scared for my job... not likely!) And then again at home on Friday. I blew my top and good.
Forgot Christians don't use that kind of language. I would have made a sailor blush. And I am still mad. My husband is in the Dr N syndrome. They can all kiss my ass! I really considered getting drunk (haven't drank in years!) with a bottle of xanax at my son's cross (accident site). But I think of my mom and kids and grandkids. Probably wouldn't affect my husband... he probably has insurance on me for that. (not really, but right this minute I am still soooo angry)
My adrenaline is flowing hard again just typing this. I have been going from depression to 10 feet tall and bullet proof for days now. That can't be good for me.
I took my shot early yesterday morning and didn't feel as bad when I got off work because of adrenaline flow but was wiped out this afternoon and depressed. Feeling tired now but not too bad. Achey as usual with a slight headache.
TOODLES for now.
May 3, 2003...3:00am
Mercy me I have been ill. So tired and achey. Almost called in at work a couple times this week. I forced myself to go in and wasn't sure I was going to make it through the week. Needed to attend a couple wakes and couldn't even do that. By the time I got off work it was all I could do to drive home.
I really feel bad about it. And guilty. But I just feel so sick and fatigued.
I was in real bad shape around 7:00pm tonight. Approx 12 hours after taking my shot. Shaking so hard I got a headache and thought my teeth were going to crack from chattering. Slept a couple hours and now I can't sleep. I just took an aleve so maybe the aching joints and headache will stop soon. Maybe then I can go back to sleep.
I am still waiting on my blood work on the viral load to get back. The blood work that has come back shows I am very anemic. Dr.'s office called and said if blood count and hemaglobin go much lower they will have to back off medication for awhile. I hope that doesn't happen. I hope and pray this is working to kill this dragon. I feel like it is killing me.
See ya - TOODLES for now.
May 12, 2003
Well I didn't post much last week, as I was so sick... missed 2 days work on Monday and Tuesday. Was in bed from Friday night until Tuesday. Then this past weekend I didn't feel so bad. Crazy meds!
We ran around a lot on Saturday and Sunday. I really enjoyed my weekend and got up this morning and went to work. Just a little tired but that is usual.
I don't know why I was so darn sick last weekend. But I felt like I was dying for sure... no I would have had to get better to die LOL. Maybe just a virus on top of everything else. I am exposed to all kinds of illness at work and don't have anything to fight it with. But done pretty well so far... God is protecting me. I have to deal with strep throats, fevers, coughs, and upper respiratory infections a lot. So far I really have done well considering all I have been exposed too.
Until later, TOODLES for now.
June 8, 2003... 5:05pm
Hello. Not a lot that is new. Been very fatigued and getting dizzy a lot. Missed getting my blood work done at the end of the month so will have to get done this week.
I am really achey lately too. Been taking more pain meds than I ususally do. I don't like to take them because I want to protect my liver as much as possible. But when you hurt you have to do something.
Work is wearing me out too. Don't think I'll ever get to stay home and be a lady of leisure!
God is in control.
For more... read my other journal:
June 26, 2003... Noon
Hi. Not a lot going on except the same ole, same ole.
The treatments are going about the same. No changes in how I feel. Still got the fatigue. Sometimes worse than other times. About one day a week, sometimes two; I get sick for awhile with fever and chills and the aches in my joints and muscle are worse. That is usually after I take my injection. I get headaches worse at that time too.
But all in all I am hanging in there with treatment. I do get awful exhausted at times and don't feel good at all. But I keep going on because I have to. Must be nice to be able to get disability but I couldn't live on it. I think some of these people on treatment just don't want to work. We have a patient at work that is filing for disability. She doesn't look too bad to me. She always comes in with her hair done and nails done. That has to be expensive. She doesn't work. She seems always in good spirits and jolly and doesn't act to sick to work, at least part-time. Oh well... that is the way of this world today.
I am not saying some are not sicker than I am, but not all of them are too sick to work.
Well Josh is wanting to eat so guess I better go fix him some lunch.
Toodles for now.
June 29, 2003....12:30pmGood afternoon. I feel pretty good so far today. I felt lousy yesterday. Didn't take my shot until 2:00pm on Friday. Last weekend took it real early so I wouldn't feel so bad on my trip to KY Saturday. But I was exhausted on the trip. Felt better on Monday though.
This weekend I think I was just still tired from the trip. But the aches and fatigue was bad yesterday. Didn't help that I did'nt go to bed until 3:00 am and was up at 5:30am with the kids. Surfing the web and trying to find info on family trees. Going to KY got me interested.
My pescription runs out on my meds July 10, need to contact the doc for another one. I am not supposed to be off meds for 48 weeks. That should be September I think. They sure don't call me much or even call me about my blood work. I work in a Dr's office within the same Medical group so I have access to it myself.
I haven't even had a Dr visit since starting meds. I did recently get a call from a new nurse they hired to monior the ones on treatment. Said someone would be calling to set me up and appointment with her. That was several weeks ago. Haven't heard anything since. Kind of scary.
Well see ya'll later. Prayers to all on treatment and with this dreaded disease!
July 5, 2003...3:15pmI am exhausted!! My anemia is worse. I may end up having to take shots for that as well. I have nothing to fight infection with and work in a doctor's office directly with sick patients.
God is protecting me for sure from getting ill.
I have been so tired this holiday weekend I can't function.
I did hear from my doctor's office telling me I missed an appointment June 17th. I was supposed to get a call from them to let me know when my appointment was. They called my old home number. Any other time they call me at work! It is resceduled for July 15th. I told her on the phone I was doing great! hah!! I feel so tired. But I guess compared to others I am doing great. I am able to work.
This fatigue is getting really bad though. I can't seem to stay awake today.
July 17, 2003...2:10am
Hello. Had a rough weekend last weekend. But better by Monday. Went to see the nurse practitioner at my doc's and she was real nice. Only been doing hep c for 5 months so still learning.
She said I was doing well but really needed to drink my water because I was dehydrated. Also said I have 6 weeks to go on tx. Will get bloodwork a month after stopping tx and then again in 6 months. Hopefully it will be gone and stay gone!
I keep telling everyone I am going to beat the hep c and then die of cancer from smoking so much. I am just so nervous. My fingernails are bitten down so far they hurt. I especially smoke a lot when on the web or just sitting. I need to keep busy but I am wiped out when I get home from work. Lately I have even woke up in the middle of the night wanting a cigarette. What's up with that???!!!
I do have a spot on my lung they keep checking. They think it is just scar tissue. I hope so. Guess I'm not too worried or I would quit smoking. But I feel the damage if any is already done. I breathe okay. My oxygen level is fine.
Maybe after tx stops I will have enough energy to exercise and quit this nasty habit.
Well going to try to hit the sack. Hopefully I can sleep.
August 3, 2003... 2:30pmGood afternoon. Been a very rough week and this weekend has been a yucky one. I have been so tired and achey. The fatigue has been so bad. My blood count is low and I am anemic, bad enough for the shots to help me but I am almost done with treatment. So I will hang in there and try to do this without having to take another shot. They told me to back off my injection by .1 ml but I didn't. Want this to work. I don't think .1 will make that big a difference.
Sure hope this works and gets rid of the virus. God is in control, so I will leave it to him.
I really need to stop smoking so much. I will beat this dragon and end up with cancer! But my nerves are pretty bad on this medicine so I just don't think I should try to quit right now. And with Josh's birthday and Heaven date so close together. I made it through his birthday in July but his date of death is right around the corner. Three years now. Doesn't seem possible to me. And it gets worse, not better.
for now. God bless all fighting this dragon. May he be slain!
October 24, 2003Well.... here's the deal.
I am what they call a rebounder.
finished my teatment the end of August. At beginning of treatment my viral load was 820,000. At week 30 of treatment my viral load was 158. Was told less than 50 was considered non-detectable. One month after treatment got my blood work done. Anemia is now gone but the viral load is now back to 800.000. The doctor's office was very surprised and said this doesn't happen often like this.
What next I ask; will get an ultra-sound of my liver, and check it yearly for cancer, they say!
I ask to see another doctor... he is out of network for my insurance but he specializes in Hep C. I ant to know what other options I may have, if any.
They will try to get me an appointment and approval to see him thru my insurance.
My skin is itiching like crazy again, just like it did before I started treatment.
Through biopsy before treatment began I had bridging fibrosis. This is what they call an F3. Cirrosis is an F4. The doctor said mv liver had time to rest and heal a little with treatment and now I was "PROBABLY" an F2.. mild fibrosis. But they can't know this without another biopsy and they don't want to do another one at this time. I have had two and there are risks to biopsies.
Will just wait and see what the other doctor says now, I guess. Nothing else to do but pray about it at this time. And wait.
Oh they did say people can live quite a while with cirrosis if they stay away from certain medicines and alcohol and high fat foods.
Sorry haven't updated in awhile but things were much the same all the time. Continued to work, got very, very anemic and tired; almost had to have a blood transfusion or meds for it. But didn't as was so close to end of treatment. And now my anemia is gone.
TOODLES FOR NOW
February 7, 2004...8:00pm
Been off treatment since August. Didn't realize just how bad I felt on it until after being off it. Lot more energy.
Insurance has approved one visit with the specialist that is out of network. Have an appointment later this month. Will keep you informed as to what he says. Won't bore you not a lot has changed in life for me at this point.
Will write again after seeing the specialist for a second opinion on my options. I don't know what I will do if he says try treatment again. The only good thing out of the first round was 50 lb weight loss. Of which I have gained back 20 of that!
I say no good thing but don't really know, maybe helped give my liver a rest.
toodles for now
TO GET AROUND IN PAGES
- BACK to Hep C page
- info on Hep C
- My Journal of Grief
- My journal after the loss of my son
TREATMENTS SECOND TIME AROUND
July 31, 2004
Well took my first shot yesterday in this second round of treatments. It is for a study at IU. Meds are free so that is very good. I am taking more Rebetol this time. Three pills in the am and three pills in the pm. The last round of treatments it was only 3 in the morning and 2 in the evening.
My first injection just about killed me this time. I started to shake horribly about an hour after the shot. I was freezing. I was aching so bad and my muscles were cramping up.
This morning... I am achey and weak but doing okay. I Feel a little headachey and nauseaus. Me thinks this time isn't going to be as easy as last time... not that last time was all that easy. But I don't think I was as bad as last night thru the whole time of treatment last time I was on the meds.
Will try to keep this updated.
Toodles for now.
October 9, 2004 9:00 am
Boy, have I been lax in writing in this journal?!
Been going about the same as last time with treatments. Sometimes I feel like I can't do this. But I keep hanging in.
Work sucks right now. Lot of stress. Short of help. Bickering and fighting. Front office against the back office. Piss poor management. *sigh*
The home front is some better the last couple weeks. I don't know why Jim and I can't seem to "click". I know a lot of it is my fault but I don't feel good damn it! I actually haven't felt good since we got married. Not a good way to start a marriage. Who the heck feels romantic? Not me. I'm sick!
I need to try harder. They are changing my Paxil to Lexapro to see if that helps. I have been on Paxil for 4 years, since Josh died. Maybe this will help but it is going to take a few weeks to tell.
I love Ginny, the nurse in this study. And Dr. Kwo is the best in his field.
Just waiting to see if this is going to work this time around. If not.... nothing new on the horizan as yet.
No pity party here. There are so many hurting suffering people in the world. And some are little babies and children. I am okay.
TOODLES for now.
Visit Josh here
March 19, 2005Hi. Just re-read this whole journal..... it is more than boring. And it isn't really helpful to anyone I don't think. Except to tell you that you will feel like death warmed over on treatments.
The 12 week therapy didn't work. I was put into the group that gets a low dose of Peg-Intron (that's pegylated interferron) for 36 weeks. No Rebatol. So I just take the one shot a week only.
I have thought about stopping treatments but they tell me it is protecting my liver from the virus. I hope so. But what about after the study? Then what? *sigh*
I have gained all my weight back too. My hair is extremely thin. And brittle. My nails are thin and brittle. Is it worth it to feel like crap all the time? Not sure.
My daughter got a pretty good job so she stopped school for awhile. She got her own place.... is moving this weekend and next. I hate it that she and the boys are moving out but she does need to have her own life and I need to let her. It is hard though! I will worry myself to death over them when not here.
Jim never talks to me much, so it will be very quiet around here!
We are in this lease until next November and then if Jodi still is on her own maybe look for something smaller and cheaper.
Toodles again. Sorry so boring but if you are reading this and want more info... check out some of the websites on Hep C... there are a lot more out there now.
April 9, 2005Still plugging along. Dad left us for the heavenly shores 3/30/05. I was with him when he left us. CHF and MI. Organ failure set in.
Still doing treatments. Starting to dread the dreaded shot each week. Never know how it is going to make me feel. Sometimes not so bad, other times... feel lousy. Last weekend my adrenaline was flowing so hard I hardly noticed my shot. Easter Sunday got the call about dad being rushed to hospital. He died Wednesday.
Hubby really stuck by my side.
A patient that said her brother in law went off treatment... couldn't handle them. I don't know how I did. Don't know how I still am.
God is helping me along.
February 24, 2006...7:00pm
Well HELLO! I'm still alive and kickin' - still on low dose interferron. Hanging in there.
I think I forgot to say my liver biopsy before I started second round was still F3 fibrosis. Wonder if it still is?
They keep telling me my liver is being protected and giving it a rest on interferron. So still hanging in there with it and wondering if it is worth all this fatigue and achiness.
I know I don't keep up with this journal but it gets pretty boring. Same shit different day ~smile~
Been thinking of upping my Lexapro but keep holding off on that.
I don't do anything but work and rest up so I can work some more. I don't think people understand that I have to reserve my energy for working and keeping my grandbabies. They don't have to be in this old sick body. So they don't understand that treatments wipe me out and probably the disease does too. I don't look sick so the think I am using it as an excuse (in fact, my soon to be daughter in law ~I'll believe that when it happens~ and her mother said that to my son) - can you believe it? AND she wonders why we don't help them more financially like her mom does. WE barely make it on ourselves. Jimmy gets real mad at them for that... it comes from her mom. She uses people a lot. She don't give as much as she gets others to give it. I guess she thinks I should sign my check over to Tonya.
There is NO better mom than mine ~bar none~ but she let us live our own lives and didn't support us. Why does Pris think I am a bad mom because I don't interfere and give them everything. Because... she is selfish and is teaching her daughter to be the same kind of person she is. But she isn't as good at it as her mom and when her mom is gone what is she gonna do?
Sorry kinda got off topic but it goes along with them thinking I am not sick. I don't visit there much because I don't like to hear them... one of these days I am going to go off and Jimmy knows it. He likes to keep peace. So I stay away and talk to him on the phone and e-mail him. They don't come to my house either and when I call if a call comes in from Pris they quickly hang up. So why bother. I love my son and he knows it. I don't see my mom everyday either. But we are close. ~sigh~ TROUBLE MAKERS STAY AWAY WHEN I TEN FEET TALL AND BULLET PROOF!! lol Which I sometimes am on treatment. Doesn't take much for me to go on a tangent.
I did at work one Friday a couple weeks ago. Took my shot too early..... Theresa thought I'd lost it for sure. And I did. Won't take it at work anymore. Never know how it is going to affect me.
Well toodles for now. I'm still kickin'
August 15, 2006... 9:36am
I am still on low dose peg. Last office visit was told they are going to dump this study and roll some of over into another study that would be Peg-inf, more Rebetol (yuck, said I'd never do that pill again) and a protease inhibitor. Maybe start in September or October.
I don't know if I am up to it or not, but what choice do I have? I have to try it.
I have been doing pretty well on my low dose peg... don't know if it is helping. I feel ill on the weekends still. But it is manageable.
Just wanted to post to say I am still around. This poor journal is sad but it is something I can look back on with the dates of when I started my meds. I feel like I have been doing treatments forever. *sigh*
For my e-mail to Heaven and other jouranling go here:
TOODLES AGAIN FOR NOW