Yesterday was a busy at work. Thank God because it does help the day go by.
I came home from work, set the poker scores up, ate some supper, did my Procrit shot, took a shower and went to bed. Wednesday was done.
I can't help but wonder why my hair falls out even more after I wash it. I try not wash it very often but my scalp is so painfully dry that the cool water always feels so good.
I'm thinking that when Jimmy and I go to NY to see Terry and Magda next weekend, I'll look around for a scarf or something to hide my bald spots. Maybe a hat....I don't know. If there is any place in the world that I can find something that looks ok on my head, it'll be in NY. Not to mention that Jimmy will be there to help me decide.....left on my own to pick it I'd walk away, after hours of looking, empty handed.
On Monday we're meeting Iris in Hershey after my appt. I'm looking forward to hanging out with her. We chat back and forth on our blogs quite a bit but we haven't seen each other for months. She's been such a help for me throughout this treatment. Seeing her on Monday will be a treat and a half!
Maybe getting out and around people outside of just work will help my mood. Life has been nothing more than work, couch and sleep.
Today isn't starting off half bad. The extra sleep last night seems to have helped.
This day has to be good....the weather outside is beautiful!
My fingers are crossed.
Have a nice Thursday!
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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
8 comments:
Should I bring the dark brown wig I bought for you to try on? Let me know. ;-}
I was pulled from treatment today! I am so upset. I was never offered any rescue drugs, nausea meds, I even referred myself to the shrink (against the interferon nurse's advice).
I fainted the other night after getting home from the trip. I had gotten up too quickly and went to my room to lay down and recover. Well my stomach had another idea, it was cramping terribly and I had to jump up to run to the bathroom. This made the diziness real bad! I ended up overheated, cramping and dizzy in the bathroom dry heaving. I got up from the bathroom to go to my room since I was not actually getting sick, just dry heaving, and when I got out that door, my boyfriend said I turned and suddenly fell backwards, fainting. After waking up a couple seconds later still in pain from my stomach, he put a fan on me and I recovered.
I emailed the nurse, who called me up basically scolding me. When I mentioned possible dehydration, she said, oh that can't be mentioned, that would mean you are not in compliance with this Treatment! I said I had been on a trip drinking my water as I usually do (I am a pro at drinking fluids!) etc. Anyway, she asked me if I could come do labs, I agreed and went last night immediately after work.
She called me this AM and said she had gotten my labs back, spoke to the GI and that my labs are abnormal, but not low enough to prescribe any rescue drugs. She said they pull people all the time off tx and that my body is not handling it.
I don't trust her judgment. I am emailing the GI herself to see what was the real reason for pulling me. My labs are not up online yet so I don't even know what she had in front of her when she called me.
I am pretty upset. (also tired and fatigued and pale).
She snapped at me when I asked if she had anything to relieve me of my current symptoms and let me know that my body should be feeling better in the next few days. I feel like maybe I should pursue this a little more.
I am going in for the second time this week to have blood drawn. The counts are low again but not low enough to stop the shot just keep it at 1/2 shot. The blood work tommorow will be a last ditch effort to see if the virus has dropped since the 24 week visit. If not I too will be off the program by mid week ,next week. The counts are at 463 VL Low platlets.I don't really know how I feel at this moment except depressed. I keep finding little things to be grateful for like at least all my hair didn't fall out and now maybe it will grow back but the big picture here just plains sucks 186 days so far just for the fun of it all with no real results. Ok I am whinning but I just need to and I figures ya all wouldn't mind LOL Laurie no matter what happens next week I will be following your blog throught your adventure cuz I just have a feeling you will make it. I wonder how long before the brain fog goes away? Terry Lee are you out there? Take Care all and a really big special thanks to you Laurie!
Iris,
I think I'm going to try to wear scarves and hats.
I just can't nentally bring myself to wear a wig. I don't know why.
Thank you for offer though. You are a wonderful friend!
((Hugs))
Laurie
Lisa,
Your nurse sounds like a real Witch! Wow! Amazing! She makes me want to jab her with Interferon for a few weeks and see how she handles it!
SHE HAS NO CLUE AND SHOULD NOT BE WORKING WITH HEP-C TX!
What your describing sounds just like me first few weeks just as my blood counts were starting to really drop. I didn't hit the floor, but only because I made it my bed in time to stop from passing out.
I was on a trial drug along with the tx that you're taking....but still you describe exactly the way that I was feeling. About a week later I started rescue drugs and then I wound up with the blood transfussion.
Your Nurse is a real bitch! Even on regular tx they usually try to adjust the dosages of Ribavirin and Interferon before completely permentally ending tx.
They have had me hold back for a week even 2 weeks from taking any of the drugs to see if my levels will go back up. Then they started me back off with lower dosages and built me back up slowly over weeks. Even now today I'm not on the full 100 units of Interferon. I'm still at 75....and hoping to stay there.
Maybe the witch was'nt explaining it right....maybe they'll just hold you off to see if your counts go back up.
No Matter How You Look At It This - It Is Not Your Fault!!!! The drugs are cruel and just have to be adjusted.
Don't give up! Even is you have to go find a different Doctor!
By the way, I dehydrate horribly and I drink gallons of water! We all do! It's the Ribavirin.
You've been doing an awesome job!
Hang in there and let us know what happens!
((Hugs))
Love
Laurie
Good Morning all, Rosie and Lisa, I am so upset for you
Lisa, it sounds to me as if you need to get another doctor. The nurse sounds horrible, saying you were not in compliance because you "might" be dehydrated. Of course you feel horrible. why would she tell you any different? I know I had a PA tell me I would get used to being sick in 4 to 8 weeks, that was not true. This tx is a roller coaster ride where one day you are ok the next day you think you can't make it. I am sorry you are having such a tough time, I think you are right, one episode should not kick you off the trial, I would go talk to the doctor, just my humble opinion.
Laurie if you find any scarves let me know, I can not bring myself to wear a wig either though I have tried those hair strands attached to a barette. They look ok You put them under your real hair and you as long as the color is close you can't see them. They do help with the self esteem. I saw a cool scarf but it was $60 and I just didn't have the money. Oh well the search continues. Laurie I hope your shot is nie to you this weekend. I pray the same for both of us as I will take mine tonight
I hope everyone has a nice weekend
Lots of hugs your way
Dorene
Oh Rosie, My heart goes out to you. I know you've come a long way.
My fingers, toes and legs are all crossed hoping that your viral load has dropped for this test! Lot's of prayers are coming your way.
I'm sure that Terry will be by shortly.
I'm pretty sure that his sides started letting letting up within a couple of weeks after getting off of the drugs.
Our prayers are that you won't have to find that out yet.
Please, Please, Please let us know how you're VL turns out.
Our thoughts and prayers are with you!
((Great Big Hugs))
Love
Laurie
Thank you soo much. I am at home today waiting for a response from my doctor whom I emailed yesterday.
I have gotten labs in and they confirm the way I was feeling.
My whites are way down, and also the reds are now flagged. My nurse is a witch and I love the concept of her taking the meds herself. I have a lot of respect for nurses because as I work in a clinic, I have good friends who are nurses and dedicated to their patients. This nurse is a piece of work. After my mind clears and my anxiety level decreases, I plan on viewing my medical record thoroughly and then proceeding with a complaint. Meanwhile, I emailed the doc asking for a rescue drug or dosage adjustment. Today, I am short of breath, exhausted pale with racoon eyes.
Thanks for all your support.
Lisa
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