Hump Day! What's with hump day....I wake up fatigued on Wednesdays.
This roller coaster is bringing me back to insomnia. I try to go to bed early and I just can't get comfortable. I fall to sleep only to wake up a little while later with my achy body yelling at me to roll over and find a new position. It's a vicious circle that goes on all night long and winds up giving me a headache at around 4 am.
I know I need the sleep to manage the fatigue, but I can't seem to get it.
I thought about turning my mattress but my poor Jimmy has thrown his back out while remodeling the bars bathroom downstairs. It looks so painful....he's a trouper with it though. He went to the Chiropractor and got some relief, but he's sore as hell.
I'll make the kids help me turn it this weekend.
Tomorrow when I go to Hershey I'll ask for something to help me.
While waking up this morning is slow, I hope that the day goes better......
Lisa.....read my comment to you on day 168. I Hope it helps!
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Life and times of Dealing with a Dragon named Hep C
I found that Hep C has a nick name.
The Sleeping Dragon.
It's fitting.... Strange thing is that I've always loved Dragons.
I guess I never could have imagined that I'd have one of my own.
About Me
- Laurie
- I'm a 42 year old Mother of 5. 3 of my own and 2 of my Husbands. My 3 are 13, 17 and 21. His are 22 and 26. We have 3 boys and 2 girls. In my life I've had 17 surgeries, a tatoo and a blood transfussion. So your guess is as good as mine as to where I contracted Hep C. I do not believe it was from the tat. The gentleman that did the art was very careful with sterile tools. But who knows. I was diagnosed with Hep C on March 22, 2007. Geno type 1b with a viral load of almost 5 million. And now I turn the corner and yet a new path lay ahead of me...... A new Journey begins
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Hero's
6 comments:
Hi Laurie,
I am having a terrible time this morning. It is only Wednesday (the first shot being friday) and I have the urge to cry today over nothing. I am in a bad mood for sure.
Thanks for your posts also in response to my last nights comments!
I am at work now trying to concentrate. I wish I could go home but don't think I would get much done anyways at home, so I'll just sit it out today.
Hi Laurie, can you look at my numbers and left me know if I should worry? Since end of June all my numbers are dropping, I feel worse now than before.
WBC 1.4
RBC 3.1
Platelet 54
ANC .78
Neut .78
Lymph .32
My doctor tells me nothing I have been feeling pretty bad and thought maybe it was the blood counts dropping. Mybe it isn't anything to worry about but I have no one to ask. Hope you don't mind me asking you
Thank you
Love
Dorene
Dorene,
I just don't get whats up with your Doctor! You feel bad because your counts are low. They're not too dangerously low yet ....but they are low! If I where you I would demand that he double check with Roche about rescue drugs. My Doctor told me that Roche is even prescribing a rescue drug for the low Lymphocytes because that's another count that the trial drug really hit hard (including yours it seems) and there are a lot of people who have not been able to recover without a rescue drug for it. My Lymphocytes went back up on there own....it was one rescue drug that I didn't need. But Roche would have prescribed it if I did need it!
Just about every count that you listed here is making you feel so bad.
WBC 1.4 Low norm =4.1
ANC .78 Low norm =2.03
Lymph .32 Low norm=15.5
- You need to be very careful to stay away from anything that can cause you to get a bacterial infection. Use hand sanitizer and try not to shake peoples hands.
You still have a bit of resistance, but not a whole lot.
They have me on Nuepogen to keep my Nuetrophils up.
RBC 3.1 Low Norm =3.8 that's not too terrible, but your platelet count is pretty low. 54 ....Low Normal is 140.
Mine dropped to 19 while I was on the trial drug and that's when I was sent for the blood transfusion.
When it was at 42 I felt like living hell. Every movement that I made wore me down.
Platelets are what sort of bind you blood. When they get low you can bruise and bleed easily. You need to be careful not to cut yourself.
Absolute danger for platelets is if they fall to or below 10. At 10 you can start bleeding out. Thankfully you have a ways to go for that!
They have me on Procrit to help keep both my RBC and Platelet counts up.
I'm not a Doctor and I'm only going on my own past experience.....but I really just don't understand why they aren't doing something to work your counts back up.
Again, I don't think your in danger but it is why you feel like shit!
Trying to figure out why they're not giving you rescue drugs....maybe your counts keep bouncing back when your doses are lowered or stopped and they're working on finding the right dosage for you? Are they playing with your dosages?
Doctors are real big on procol. But if your Doctor is still saying that Roche will not allow rescue drugs on this trial, and you're on the same trial as I'm on, I'm telling you, he or she is wrong!
Have you asked them to double check on Roche allowing rescue drugs?
In the beginning they did not...but a few weeks into the trial that all changed.
I'm so sorry that you feel so bad. I don't know if this helped or not. Remember I'm not a Doctor, I can only go by what I've been through over the past 5 months.
I pray that you feel better soon. My heart goes out to you! I know exactly how you feel right now. It's a very hard place to be both physically and mentally.
Please try to remember that you are not defeated! You're fighting one hell of a battle and you're hanging in there. I know that it's hard to remember that when you feel so damn bad....but you have to hang in there. You've come a long way!
Why don't you try sitting your Doctor down and having a heart to heart with him. Find a way to make him understand that this is becoming way too ruff and that you have to have something to help you make it through it.
Take care my friend!
((Hugs))
Love
Laurie
Lisa,
One of the hardest parts of this tx is waiting for your body to adjust.
For some that adjustment happens within days....for others it takes a while longer.
I can't tell you how many times I've wanted to sit in the middle of the floor and ball my eye's out! Believe me, my poor husband has had a few extra gray hairs pop up on his head trying to figure out how to get us through this!
One day at a time. That's all you can do.
Work helped me through many many very bad days. It passed my time and drew my mind away from what my body was going through.
Still you have to find a way to rest during the day. At my work they actually set up a place for me to go lay down when I'm in real bad trouble.
If I need just a short rest and I want to avoid the fuss, I just go out to my car and lay back for a bit.
My point is that you have to be easy on yourself. I had to learn that the hard way. I've been so used to pushing through when I felt sick that I thought I could push through tx too. It's just not so. My body pushes back 2 fold when I push too hard. When it pushes back it puts me on the couch for a week and makes me pay!
Take it easy on yourself and take it one day at a time. Don't look back and don't look forward. Take care of each day and each side effect as they come.
((Hugs))
Laurie
Dear Laurie, thank you so very much for your input, I had a feeling that I was feeling so bad because my numbers have been dropping for over a month. The doctor said that isn't necessarily why I feel bad. Of course he does nothing to help me feel better and I am about to quit this trial and start over with another liver doc with the Peg and Rib and have my insurance pay. Since I can't seem to get the care a patient deserves I am seriously contemplating it.
I don't know what I am going to do, I have tried talking the doc on the trial and he just says this is what you have to deal with. I think the care depends on the doctor and this guy may be brilliant in his field but he is not treating me like a patient more like a number to get blood from every two weeks. I am in a bad place so will think it over.
I appreciate your help very much.
Thank you for taking the time to explain everything, they don't do that
Love
Dorene
Dorene,
Before you drop out of the trial, Are they playing with your dosages? They may be trying to get you into a drug level that doesn't kill off your counts.
I'd sit down and have that heart to heart with your Doctor before I'd drop out. Just tell him that you need to know what the game plan is for your low counts. Tell him you need to know the "why's" and ask him to double check on the rescue drugs.
I wouldn't just drop out though. I can't imagine changing over to a new Doctor at this point without there being a major break in tx.
It would stink to have to start over.
Maybe there's even another Doctor on staff that is involved with the trial that you could get a second opinion with or even change over to.
I would really look at all of the options before dropping out.Don't worry that you might offend or hurt your Doc.s feeling by questioning your care. Just go in there and lay it all out, including the thought of maybe quitting. Just might snap him into a new mode!
Take care my friend.
((Hugs))
Laurie
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