Yesterday was filled with fatigue and getting dizzy. But no nausea. By the end of the day I was wiped out and feeling down.
I took the Procrit shot last night and went to bed.
I thought I was doing better. But I guess I'm just managing better now that the nausea is gone.
My blood work from last week came back. My Nuetrophils and Lymphocytes are still going down and now so is my Haemoglobin.
Nuetrophils = .48
Lymphocytes = .51
Haemoglobin = 9
Hershey has me holding the Ribavirin and my Pegasys. I took the Procrit last night and they have me taking a full shot of Nuepogen tonight and a full shot of Nuepogen on Monday. To me, full Nuepogen shots are a sentence to the day after bone pain. I don't look forward to them at all.
I go back to Hershey on Wednesday to redo my blood work. With my Haemoglobin dropping, I guess a blood transfusion is still on the table.
I guess I'm not having such an easy time recovering from the trial drug.
I knew I had an awful lot of fatigue and I keep getting dizzy spells .....but I thought that maybe it was just what I had to expect. I don't know how I should feel. I just keep trying to manage the symptoms and get through my day. It's been so much better since I got rid of the nausea....I guess I've just been excepting whats left.
As though this new knowledge has told my brain that's somethings up (or it's a coincidence) I woke up this morning feeling even more weak and fatigued.
I know I just have to go slow. I have to sit as much as I can and not rush anything.
I am becoming scared. My blood levels should have leveled off by now. They shouldn't still be dropping. Now my Haemoglobin is going too? It's been 14 days since I stopped the trial drug and still I'm not making it back. How long can a drug remain in my system?
Mentally all of this is starting to hit home. I'm getting tired.
As before, I know that my depression will change as my levels return.
But this morning I'd like to sit and have a good cry.......
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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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8 comments:
Quit the crying! Maybe you need more than 1 Procrit injection a week. Someone (cwk - liverlogger or liverblogger, can't remember which it is) had to do 3 Procrit shots a week to get through treatment.
OK, pull yourself together, this is no time for a pity party - 3 day weekend coming up!
Get some rest.
Love ya,
MYS
One hundred days in is a long time with twice as long to go. Your mind will start playing games. My worst sides were mental. Hang in there, what you're experiencing is to be expected. 9 on the hg is still OK. Bloods will stableize and rise. My only fear is that Roach might pull you from the program as they have nothing to lose by doing so. My fingers are crossed.
I say if you feel like crying just do it and get it over with. Then spend the rest of the weekend resting or playing with your new plants. I never hold back a good cry it is a release for me and I always feel better when I get it out of the way. Hang it there Laurie we are going to make it through this...all of us :)
Rosie
I don't agree with Terry - Roche won't pull you off the drugs. They already created quite a problem for you and others by giving you what I'm sure was the highest dose of study drug and that didn't turn very well for you and them, so the best they can do now is to do everything they can to keep you and as many others on treatment - remember they sell the Pegasys too - so as many people as possible clear the virus and go on to SVR. What happened to you - having your bloods crash and needing to be transfused was an 'Adverse Event,' and had to be reported to the FDA as such. Now they're in major cover their ass mode and want you to finish your treatment and go on to SVR - it will make them look slightly better than they look now after the auditors pulled the plug on their new drug study.
Hope you feel better.
This is the second time that Roach has had to halt a Hepsie study drug. The last one was 18 months ago. This may have been the fix for the last trial drug with the same results. If at first you don't succeed then try, try again.
I think they'll continue to try to raise my blood levels by increasing my Procrit and Nuepogen shots and holding the Ribavirin and Pegasys until I show improvment. I think that they're just waiting for the trial drug to begin leaving my body. My study nurse said yesterday that they really don't know how long that will take....but since I've been undectable for a while now she's not too worried about my holding treatment for a little while. I made it almost 2 weeks last time holding treatment and it didn't effect my viral load.
There is a threat of being taken off of treatment if my blood counts can't be managed with the Procrit and the Nuepogen. But threat is the same as in Standard tx.
I think your both right. They'll continue to increase the Nuepogen and the Procrit, but if that doesn't do it they'll have to take me off.
Right now it's all about the Nuepogen and the Procrit fighting with the Trial drug trying to win my blood levels over.
I think that once the trial drug is out of my body and the rescue drugs can act freely, I'll be alright in Standard tx. At least that's what we're all thinking.
Time will tell.....
Thanks you guy's. You're both always my rock of support.
Love you
Laurie
Rosie...yes I had my good cry. I found Susans shoulder and cryed all over it.
lol....funny how sometimes thats all I need to get back up. Just a little release.
We are going to make it through this. Gets hard sometimes, but we will make it.
Once this damned drug is finally gone and my blood levels return I know I'm going to feel soooo much better!
Thank you for your kind words, they always help pull me back up again!
Take care my friend.
Love
Laurie
What's the latest news Laurie?
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