I went to the Doc. today. I've been waiting for 3 months to see him again. Waiting to get started...waiting to have the Liver Biopsy....just waiting.
Some good news, some "hard to get into my head" news and some bad...that I already kinda knew.
Good news....he doesn't think too much damage has been done to my liver as far as the blood work shows.
Bad news....my viral count is high. I kinda knew that
Bad News.....My Doctor here thinks I have less than a 50% chance at beating it. I knew that one too.
"Hard to get into my head" news....I'm going to Hershey.
It's hard news to me because this waiting game is so hard to deal with. I WANT THIS GONE or at least going!
I know that Hershey would be the best place to be treated, but everything about it just seems so far away. It's a couple hours of driving for each appt. and the wait to get a first appt will have me waiting longer than I am right now. My starting in October could now of have turned into December.
I know they are specialist at this.....I know the Doctor is one of best in his field....Experienced HCV staff .... Best care that I could probably get. Jimmy will hold my and drive me there when I'm not doing well.
But how do I get these things into my head and make my brain except it without the tears?
I can't even begin to explain the frustration of having this, knowing that it's alive inside of me, knowing that I have a small chance of fighting it....that that small chance will probably make me sick and the fight will be hard....gathering the strength and will to fight ....Being ready....
and then being told that I have to wait longer to begin the battle.
I just can't describe how I feel.
I think I'll take a Xanax now and get ready for a meeting in 10 minutes for another Charity Benefit.
God.....if you read this blog........I really need a break for a while........ok?....... Please?
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I don't know what they are going to do differently in Hershey (and I'm sorry I suggested it, but it seems like you were thinking of it before I mentioned it). Can't your own doctor start you where you live, then transfer you to Hershey? You may be able to get a priority appointment there, if your own doctor starts you. Or, ask to be taken if anyone cancels (this of course means you need to be ready at a moment's notice to get in the car). You should be thinking of starting your ribas 4 to 6 weeks before the interferon, and tell the doctor about this and about Tea doing this, and get the name of her doctor, if your doctor wants to talk to him. Nonetheless, even without doing that, I saw that Ample and others went from over 9 million v.l. to zero in 4 weeks.
I know this is frustrating, when you pick a date and gear up for it you want everything to fall into place.
Well, I'm all over the place with this comment...I don't know about driving to Hershey every time during the winter...I'll be back, need to think...
The Doctor that my Doctor is setting my appt. with is Dr.Thomas R. Riley III. He's a major specialist, Liver transplant surgeon and he's knee deep in HCV research.
Dr. Yoo (my doctor) say's that he wants me to start this out with him because if it doesn't work I may be able to join a test case with the newest drugs available. I take it from the way Dr. Yoo was explaining it, that in order to be in that kind of possition I have to start treatment from the beginning with Dr. Riley. I don't think Dr. Yoo wants to mess it up by starting me here.
I am going to take all of the education that all of you have and are giving me with me when I meet this guy....you have taught me soooo much.
It's probably for the best and I'm trying to hang on to "Nothing Good Comes Easy" but tonight it's just hard.
Thank you uncertain...I truly do not know what I would do without you and Teah showing me the way and teaching me.
On the bright side...I pasted the smile on and made it through my meeting.
Things will be better tomorrow...
Laurie -
Send an email to me, to the address I have on my blog, and I'll answer this from my main email address.
uc/MYS
Hi Laurie. Good news.... you have little damage to your liver so you have the luxury of TIME to make treatment decisions. Good news.... Viral loads are NOT indicative of liver damage. They are JUST a number that shows we have an active Hep C infection. Most of us are genotype 1 and have a 50/50 shot at treatment. I take it from your post you are also a genotype 1. Better news.... you might get into a clinical trial with *newer meds* (VX-950 or another protease inhibitor). The only bad news I can really see is that you could get into the clinical trial and receive the placebo. Try not to stress so much. Stress is not good for the liver. There are MILLIONS of us out here living with the Hep C virus and we will all gladly help each other. Don't isolate yourself and KEEP THAT GLASS HALF FULL! :-) I already have cirrhosis and have probably had Hep C since the late 60's. I try to keep my glass half full each and every day and try to help at least one other person. Email me at figment@nettally.com if you need someone to talk to or ask questions of - or better yet... join HepCingles2 (see addy below)
Peace
Pam
www.HEALSoftheSouth.org
www.HEALSoftheSouth.com
PS - For online support please join many of us at http://groups.yahoo.com/group/HepCingles2 A support group for all with Hep C.
Laurie, I'm sorry I have not checkeod your posts before, but you know what I was doing, running like crazy between the states.
Listen, none of the resons you've mentioned above are any reasons at all. Watever your viral load is it's not affecting either your treatment or indicates your liver damage. And why 50/50 chance? Based on what has your doctor set limits? No one knows how much chances we have to clear the virus. The only thing they can tell us is that genotype 1 is a tough one to treat, but again, there are so many people out there with geno 1 free of virus! If we do everything right, everything will be just fine.
Mention to your doctor about me, my doctor (Dr. Hillel Tobias) had started me on Ribavirin 4 weeks (I made it 7 weeks) before my first shot. I'm sure your liver specialist will know my doctor since they both are big.
Don't let anything scare you. Get your strength together and start fighting for your health.
Wishing you all the best
Tea
Oh God Teah....You will be with me at my doctor. I am taking your teatment with me and all of your experiences.
Hell I'm even taking your strength and encouragement.
Thank you my friend
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