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Avatar universal

Dragons back, yup you read it right.

I knew that when I started getting hot flashes around 5 weeks post something was wrong and plus the numbness and other things. I now hope that my other self dx isn't right - Cryo.

Anyone who remembers or knows where I tx please refrain from bringing up the teams name. They will hear the things that I was not happy with when I see them in person. I don't want to attach a name of a team to my complaints on a public forum.

But anyhow I had prepared myself for this news from the time the hot flashes started along with the numbness. My NP never got back to me- even after 3 emails with me asking about these symptoms. I guess becasue geno 2 is supposed to be a 'shoe in' so I guess nothing could be wrong and it was probably just in my head. NOT

I am very fortunate that though tx failed me, I didn't have a hard time at all while tx and for that I am grateful. I know that Jesus will see me throught this all.

I thank you all for all the support you all have given me. We will all beat this disease one way or another. This failure that I am experiencing will only strengthen my faith as now I have to totally trust Him and I will. God is so good to give me peace and comfort me at this very moment. He loves us all so much.

I have to eat my dinner. Talk to you guys later or tomorrow. Please keep me in your prayers that I don't have cryo. Thanks guys.
50 Responses
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254544 tn?1310775732
Sooooo sorry to hear this.  I'm not familar with your prior history.

Being that your are a geno 2 this truly is a surprise.  Will you treat again?

Mouse
genotype 1a, Stage 3, Grade 3
Finished tx 4/13/07
Hoping for SVR on 9/20/07
Helpful - 0
104652 tn?1196600308
sending you prayers Cryo...
keep the faith..
love
darcar
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Avatar universal
What a letdown for you- I'm so sorry. Hopefully better things are around the corner. I can't remember how much damage you have, but I hope you can take a nice rest from tx- then fight the dragons again- and win. You did reach UND, and tolerated tx well- that's good.
  And faith pulls us through the worst of times- so you know God will carry you through this. You're in my prayers.
  Hugs and best wishes,
Dee
Helpful - 0
Avatar universal
I'm really shocked and so very sorry. I know you're probably not in the mood for questions but if-and-when, didn't you test UND at week 4? What week was this test and what was the viral load? You do remember that NYGirl also had an UND that later turned out to be a false positive. I certainly don't want to sugarcoat your news, but do have them run another viral load test right away just to make sure it wasn't a false positive. Also, some have a theory that in the short window past SVR, there is sort of a "handoff" from the interferon turbocharged immune system to the post interferon immune system. During this 'hand-off", perhaps the viral load goes in and out of UND until finally UND. I truly pray this is the case and that you will re-test both now and maybe in another month. So sorry again, this really makes no sense to me.

Be well,

-- Jim
Helpful - 0
16370 tn?1224507464
I am so so sorry to hear your news. I don't think I could ever be "prepared" to get those results again. You certainly have strengh, a loving family and faith on your side.

I don't know if you remember but I think we started and finished about the same time. I also was a geno 2 with not bad sides. It has been 11 weeks since I finished and honestly I feel worse now than during tx. When I email my doc about how I feel he always writes back with the same answer...."Sometimes it takes awhile."

What will you do now? Would you treat again? What are your new results?

Myown....your in my thoughts and prayers.

((hugs)) Rose
Helpful - 0
92903 tn?1309904711
I am really sorry. That totally just sucks. As Jim points out, there is aome hope to hold onto. I will be hoping for the best for you....
Helpful - 0
186606 tn?1263510190
Oh dear. I know your heart must be broken. I'm interested in the answers to Jim's questions as well.

I know you need to roll up in a ball for a while but we are here. Please know this.

Love
Deb
Helpful - 0
223152 tn?1346978371
I am so sorry.  I hope you can take it easy for awhile and regroup.
frijole
Helpful - 0
148987 tn?1287805926
Man...I'm really sorry to hear that. Shiit.  I kind of have these hot flashes and dizzyness that started just a few days ago, around 4 weeks. Now I'm freaked out.
Helpful - 0
Avatar universal
I can only imagine how you must be feeling.  Sounds like the news came today and yet you took the time, composed your thoughts and posted your news with a heart full of faith.  No anger.  No rage.  You cooked your supper, you've left your computer and gone to eat it.  I imagine you'll go through the motions, clean up your kitchen, brush your hair, your teeth, wash your face and hands, find a comfy nightie and a quiet spot for yourself for a while tonight.  I will keep you in my thoughts and prayers MyOwn.
Helpful - 0
Avatar universal
Welcome to the tried and failed/In between Tx Club. Not that its a great club to be in, especially if you are also apparantly easy to treat. Us 2&3s arent as necessarily as easy as everyone seems to think at times.

Geez relapse sucks.
I feel your pain
CS
Helpful - 0
215816 tn?1212490407
Keeping you before the throne...today, I too found myself in the same position with my results showing being right now a non-responder.  Myown, you are loved....from my heart to yours....

You and I together in Christ,
Rick
Helpful - 0
Avatar universal
I am so sorry about this news. I chose to see it as a temporary setback. Good luck, Mike
Helpful - 0
173975 tn?1216257775
Oh Jeeeeez . . . .i can't believe this . . .  .

I was so sure you had beaten it. . . . .

You must be numb but I know it's gonna work out and you will find a solution . . .

Hugs from me and the flock,

Wyntre
Helpful - 0
229344 tn?1189755837
Im sorry for the letdown and sadness. Hopefully there will be good news with Gods grace next time.
We are all praying for you.

Please take care.
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Avatar universal
I don't know what to say except I'm so sorry about your news.  Love and prayers,
pigeon
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Avatar universal
So sorry about your news...
My thoughts and prayers are with you..
Helpful - 0
Avatar universal
Myown,,,,I'm so sad to read this!  You are such a special gal and loved by all!   I just know this is a small bump in the road for you and you will beat this disease!
Helpful - 0
Avatar universal
Im truly sorry to hear of your relapse..but im glad to hear that the tx was not hard on you...

           "Beloved, I wish above all things that thou mayest prosper and be in health, even as thy soul
             prospereth"...(3 John2).
    My Own, your season of healing will come......
  
                                           Goldyn
  
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Avatar universal
Romans 8:28, jerry
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86075 tn?1238115091
sooooo sorry to hear this, but youre character comes through in your posts, you'll beat this, if not now, later on. I know this. Sending healing vibes to you My Own, be well my friend.
Helpful - 0
Avatar universal
Thanks guys for your kind words, prayers and scripture. I'm fine so please don't feel bad. I knew there was something going on in my body, so I was prepared for this.

Jim this test was august 16 and the VL was 87,300, so it doesn't look like the ole' immune system is going to knock these guys down. I finished tx june 15. 4 week post UND. The hot flashes gave me the tip off mostly and the numbness in my lips and hands that I never experienced. I only had my thumb feel weird before tx when exposed to cold. But I got sick of telling medical people - who really listens anyhow?. I am a person that knows their body inside and out. I know when something is not right. Too many medical people and even sometimes loved ones feel its the stress of the disease and worry and damsel in distress and all that. It's not and now everyone knows that all of this was not panic or in my head. It would have been nice if my hep doc office would have called my PCP back. He couldn't even get a hold of them and I was sitting right there so I know that is the case. He left a voice mail and told them about the PCR and also sent a fax. No one called back and this was at 12:30 in the afternoon. I'm not happy about that. But anyhow if I knew I didn't have cryo I would feel 100% okay, but having that hang over my head is a pain and that I have been talking about since that Ad pusher doctor I almost tx with. Also I have giant size floaters it seems. I've had them but not like this is now.

Rick I am sorry to hear that your situation didn't change. I didn't see whether or not you had another test to show either way.

I-horn - I hope that this is not the case with you.

My husband has his fantasy football thing that he goes to tomorrow but I forgot that he had to go to his team partners house tonight to do the line up. I didn't want him to stay home tonight just because of this news. I told him I have my forum friends that I can vent to and not to worry about me. So thats the story folks. Sorry for the bad news, but better days ahead.
Helpful - 0
Avatar universal
I am so very sorry to hear this.
Helpful - 0
Avatar universal
I can understand your frustration getting in touch with your doctor's office. Hopefully, it's because the office closed early for the Holiday weekend, but equally probable that that the office minions don't give a sh*t as office help these days is about on par with McDonalds.  Had the same problem with my last cardiologist. I fired him because he didn't bother to call me back after what I described to be a serious problem to his f*ckin assistant. I was fortunate that I had direct email contact with my treating doctor and he almost always responded same day.  I also had email contact with my previous liver specialist's NP, but she often didn't get back. One day she told me her workload -- several hundered patients solo -- and I realized why everything was so rushed and f*cked up. It's a war out there trying to get good medical help and you got to fight. If you haven't given up on your liver specialist's office, call Monday and don't get off the phone until the doctor himself picks up the phone. If you've given up I don't blame you. You will be in my prayer's tonight and do re-test in a month even though it doesn't look great. I also wonder if another one or two shots of Peg at this point (assuming they're still in the fridge) would make any difference. Just a thought but probably one you don't want to hear but something maybe to discuss with your doctor if you're in the mood. 87,000 isn't all that high. Just a late night thought. Def bad news but if there's a silver lining it's that you probably have very little liver damage, and after 24 weeks of interferon, your liver possibly could have healed completely. Better drugs will be out one of these days.

All the best,

-- Jim
Helpful - 0
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