Aa
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.
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.
I thank each and everyone of you for your kind words and prayers.
Hi Cindy, Well as you see, I didn't make it into SVR land, but I'm on the sidelines routing for you and your husband. It was fun that we did a count down together ending tx on the same day sort of like partners. I hope and pray all goes well with you guys. I think it will too.
-------------------------------------------------------------------------------------------------------
Imagine!!! Hey friend where have you been???????? Didn't you move cross country?? I don't know which end of the country you were on before you moved. I think west coast?? Well anyhow so sorry to hear of your relapse. Yeah this virus is a tricky one.You being a geno one and having 48 weeks is alot worse than what happened with me. I'm so sorry. You cleared early on just like me too, this is crazy. I'm going to be curious to see what my team makes out of this if they call me Tuesday, but I will probably have to call them.I'm not planning on tx again but I want to check other things out -cryo etc. I also have a few things on my liver that they said were probably cysts. I had asked my doctor (before I relapsed) if I need to get cat scans and Ultra sounds the rest of my life to keep an eye on things. He said no just get it one more time to make sure the size didn't change of the cysts. Well when he said that, I remembered I had an ultra sound of my kidneys a couple months before the cat scan of my liver prior to tx. I had told the Urologist that I was just dx with hep c. He brought me in to the room so the tech could do the ultra sound of my kidneys and smiles and says to the tech - don't tell her anything about her liver. This doc is a nice guy and he teases alot and jokes, but he was sort of being serious to the tech becasue at this time I didn't know what shape my liver was in and if anything was wrong I guess he would want my liver doc to tell me and not him - but I'm just guessing. So anyhow the tech starts by my liver first (I told him to tell me whatever he could about my liver -not to listen to the doc) and so he said hey your liver looks great. I asked if he could tell if a person had cirrohsis and all that and he said yes he can and it looks great. Then he said I should go get the hep C test again maybe it is gone. I said no it doesn't work like that. My liver might be in good shape but I still have the virus. The tech had Led Zepplin playing in the room while I was there. (((((memories)))))
So now what happens is I go into the other room and the doctor comes in and says everything is good with my kidneys. I said oh good, let me have a copy of the report. He said no there is nothing to see. I said yeah but I want to keep all my reports. Well for some reason I didn't push the issue I guess because he said nothing was wrong. So now when I get a cat scan (ordered from a doc that I didn't tx with) the scan says I have a couple of cysts on my kidneys (urologist probably didn't want to tell me cause they are common) AND on my liver. So now fast forward to the doc that I am tx with. So anyhow when he mentioned just get one more cat scan to see if size change with cysts (?) I thought to myself....I better go back to the Urologist and see if they noted it on the U.S. report. Winds up it just says liver is normal. I don't know whether a Uroligist would mark down a cyst if its on the liver or not. It does have a blank space for masses ...so maybe cuz its not a mass and just a cyst they don't mark it down. (((((try'n to think positive)))))) OR these little things weren't there when he did the Ultra S and then a month or so later something showed up on the cat scan - hope not. So now I will make an appointment with the urologist to find out why he didn't mark it down - they weren't there when he did the US? Or they only mark down masses and not cysts. BUT it comes down to this. I will never let anyone ever again tell me the report is fine and that I don't need a copy. Sometimes a "fine" report winds up being a missing link to the next 'not so fine' report. Gives you something to compare it with. But I'm not going to stress out over it. The stress tank is empty. I deceided I am not going to worry about this cr@p anymore. It is what it is for now but I will hold onto hope and let go of fear. I truly have peace at this time, thank God.
But anyhow thanks for your kind words. And Btw, I did get your drift. *wink*
So you're a Fantasy Football guy huh? My husband has been doing this for years. Thats funny that you think I am "some kind of woman to not raise a fuss" about him going there. LOL I know these things are crazy when you guys get together, but he never does anything with his friends anymore so I am actually glad he goes. He needs that male bonding thing in his life. His good friend that was part of his team just suddenly died only about 55 or something like that. I know it was hard for him to go with his other partner. His team including this guy that died are friends since kindergarten. How many people can say they still are in touch with their kindergarten friends?? Not too many, so it was sad that this guy died and a shock on top of it all. I told my husband that you go to fantasy football drafts too when I read your post. He told me to give you his line up or team or however he worded it to see what you think. I think thats how he said it. He's in the shower and he didn't give it to me yet so I can't post it yet. But anyhow Imagine I hope you are going to stay around on the forum. It was such a nice surprise to hear from you.
Thanks so much for taking the time to talk to me. It means alot to me, it really does. You will be in my thoughts and prayers also.
Have fun at the draft Tuesday.
My husband just gave me his teams ....
This is a Touch Down league Only
Quarterbacks Wide Receivers Kickers
Romo Dallas Steve Smith Car Mare NO
Cutler Den. Berrian Chic Folk Dallas
Ramsey Den. Branch Sea
Galloway TB
Bruce STL
Welker NE Special Teams Defense
Philly and KC Colts & Detroit
Runningbacks
Tomlinson S.D.
Benson Chic.
Tony Hunt Philly
Mike Turner S.D.
Droughns NY.G
Mike Anderson Balt.
Hi Cindy, Well as you see, I didn't make it into SVR land, but I'm on the sidelines routing for you and your husband. It was fun that we did a count down together ending tx on the same day sort of like partners. I hope and pray all goes well with you guys. I think it will too.
-------------------------------------------------------------------------------------------------------
Imagine!!! Hey friend where have you been???????? Didn't you move cross country?? I don't know which end of the country you were on before you moved. I think west coast?? Well anyhow so sorry to hear of your relapse. Yeah this virus is a tricky one.You being a geno one and having 48 weeks is alot worse than what happened with me. I'm so sorry. You cleared early on just like me too, this is crazy. I'm going to be curious to see what my team makes out of this if they call me Tuesday, but I will probably have to call them.I'm not planning on tx again but I want to check other things out -cryo etc. I also have a few things on my liver that they said were probably cysts. I had asked my doctor (before I relapsed) if I need to get cat scans and Ultra sounds the rest of my life to keep an eye on things. He said no just get it one more time to make sure the size didn't change of the cysts. Well when he said that, I remembered I had an ultra sound of my kidneys a couple months before the cat scan of my liver prior to tx. I had told the Urologist that I was just dx with hep c. He brought me in to the room so the tech could do the ultra sound of my kidneys and smiles and says to the tech - don't tell her anything about her liver. This doc is a nice guy and he teases alot and jokes, but he was sort of being serious to the tech becasue at this time I didn't know what shape my liver was in and if anything was wrong I guess he would want my liver doc to tell me and not him - but I'm just guessing. So anyhow the tech starts by my liver first (I told him to tell me whatever he could about my liver -not to listen to the doc) and so he said hey your liver looks great. I asked if he could tell if a person had cirrohsis and all that and he said yes he can and it looks great. Then he said I should go get the hep C test again maybe it is gone. I said no it doesn't work like that. My liver might be in good shape but I still have the virus. The tech had Led Zepplin playing in the room while I was there. (((((memories)))))
So now what happens is I go into the other room and the doctor comes in and says everything is good with my kidneys. I said oh good, let me have a copy of the report. He said no there is nothing to see. I said yeah but I want to keep all my reports. Well for some reason I didn't push the issue I guess because he said nothing was wrong. So now when I get a cat scan (ordered from a doc that I didn't tx with) the scan says I have a couple of cysts on my kidneys (urologist probably didn't want to tell me cause they are common) AND on my liver. So now fast forward to the doc that I am tx with. So anyhow when he mentioned just get one more cat scan to see if size change with cysts (?) I thought to myself....I better go back to the Urologist and see if they noted it on the U.S. report. Winds up it just says liver is normal. I don't know whether a Uroligist would mark down a cyst if its on the liver or not. It does have a blank space for masses ...so maybe cuz its not a mass and just a cyst they don't mark it down. (((((try'n to think positive)))))) OR these little things weren't there when he did the Ultra S and then a month or so later something showed up on the cat scan - hope not. So now I will make an appointment with the urologist to find out why he didn't mark it down - they weren't there when he did the US? Or they only mark down masses and not cysts. BUT it comes down to this. I will never let anyone ever again tell me the report is fine and that I don't need a copy. Sometimes a "fine" report winds up being a missing link to the next 'not so fine' report. Gives you something to compare it with. But I'm not going to stress out over it. The stress tank is empty. I deceided I am not going to worry about this cr@p anymore. It is what it is for now but I will hold onto hope and let go of fear. I truly have peace at this time, thank God.
But anyhow thanks for your kind words. And Btw, I did get your drift. *wink*
So you're a Fantasy Football guy huh? My husband has been doing this for years. Thats funny that you think I am "some kind of woman to not raise a fuss" about him going there. LOL I know these things are crazy when you guys get together, but he never does anything with his friends anymore so I am actually glad he goes. He needs that male bonding thing in his life. His good friend that was part of his team just suddenly died only about 55 or something like that. I know it was hard for him to go with his other partner. His team including this guy that died are friends since kindergarten. How many people can say they still are in touch with their kindergarten friends?? Not too many, so it was sad that this guy died and a shock on top of it all. I told my husband that you go to fantasy football drafts too when I read your post. He told me to give you his line up or team or however he worded it to see what you think. I think thats how he said it. He's in the shower and he didn't give it to me yet so I can't post it yet. But anyhow Imagine I hope you are going to stay around on the forum. It was such a nice surprise to hear from you.
Thanks so much for taking the time to talk to me. It means alot to me, it really does. You will be in my thoughts and prayers also.
Have fun at the draft Tuesday.
My husband just gave me his teams ....
This is a Touch Down league Only
Quarterbacks Wide Receivers Kickers
Romo Dallas Steve Smith Car Mare NO
Cutler Den. Berrian Chic Folk Dallas
Ramsey Den. Branch Sea
Galloway TB
Bruce STL
Welker NE Special Teams Defense
Philly and KC Colts & Detroit
Runningbacks
Tomlinson S.D.
Benson Chic.
Tony Hunt Philly
Mike Turner S.D.
Droughns NY.G
Mike Anderson Balt.
I am very sad to hear of your news.
I have always admired your spunk and have respected the way you stand up when some have said to lay down (if you get my drift :) )
I hope you remember me. I cleared at wk4 of 48 but relasped at the 4 month post tx mark. Most everyone said I was crazy because you can't actually feel it coming back. That might be true for most and I was telling myself it was my imagination but my body was telling me different I requested a "early" pcr to find out for sure. The pcr came back at 1 mill. So I understand what a blow this is for you. I feel for ya Myown.
You can take this for what it's worth (2 cents at the last closing bell) but try to forget all about hepc for a period of time. I know it's hard but it helped me re-evaluate "stuff". Everyone says just retreat automatically. I am not discounting that advice or not advocating that advice. For me the decision to retreat is more complex than the decision to treat. In my case the virus came back even stronger than before and actually may have accelerated the damage to my liver. I was hoping to be able to wait till 09 for hopefully the vx-950 to be approved and added to the tx regime by the FDA. I had a cat scan done about a month ago and it showed a mildly enlarged and slightly nodulated liver. I go back to my doc this Friday to discuss the details (I am real worried about the nodulated part) and will look to him for guidance as to how to progress from here. I guess what I am trying to say it can be even more of a difficult decision the second go around. I know you will reach the right decision MyOwn. You have some very heavy hitters on your side and have the ability to stand up when the virus says lay down.
I wish you the best and you will be in my thoughts and prayers. This disease sucks big time.
I would also like to say you are some kind of woman to not raise a fuss about your husband going to the fantasy football draft! My draft is this Tuesday, LOL!!!!!!!!!!!
I have always admired your spunk and have respected the way you stand up when some have said to lay down (if you get my drift :) )
I hope you remember me. I cleared at wk4 of 48 but relasped at the 4 month post tx mark. Most everyone said I was crazy because you can't actually feel it coming back. That might be true for most and I was telling myself it was my imagination but my body was telling me different I requested a "early" pcr to find out for sure. The pcr came back at 1 mill. So I understand what a blow this is for you. I feel for ya Myown.
You can take this for what it's worth (2 cents at the last closing bell) but try to forget all about hepc for a period of time. I know it's hard but it helped me re-evaluate "stuff". Everyone says just retreat automatically. I am not discounting that advice or not advocating that advice. For me the decision to retreat is more complex than the decision to treat. In my case the virus came back even stronger than before and actually may have accelerated the damage to my liver. I was hoping to be able to wait till 09 for hopefully the vx-950 to be approved and added to the tx regime by the FDA. I had a cat scan done about a month ago and it showed a mildly enlarged and slightly nodulated liver. I go back to my doc this Friday to discuss the details (I am real worried about the nodulated part) and will look to him for guidance as to how to progress from here. I guess what I am trying to say it can be even more of a difficult decision the second go around. I know you will reach the right decision MyOwn. You have some very heavy hitters on your side and have the ability to stand up when the virus says lay down.
I wish you the best and you will be in my thoughts and prayers. This disease sucks big time.
I would also like to say you are some kind of woman to not raise a fuss about your husband going to the fantasy football draft! My draft is this Tuesday, LOL!!!!!!!!!!!
Your Faith will carry you, He has plans for you...a hope and a future...which is good..
i am so sorry to hear your news, and i will keep you in my prayers...
blesiings to you and your family..
i am so sorry to hear your news, and i will keep you in my prayers...
blesiings to you and your family..
Hey girlfriend I just read this and I am stunned. I thought for sure you were SVR because you responded so quick. I dont know what to say other than I am truly sorry. I too feel like you, I have no liver damage but want this gone. I have not tested yet but will next week. If it does not work I dont think I'll treat again, at least for a while. Hang in there girl and thank God your liver is in good shape, it could be a lot worse. God will get you through this, but I'll pray you anyway ;-)
Dear MyOwn..
thanks for that indepth explanation!
also..may i add im sorry to hear about your relapsing.
But i hear your strength and faith within and i dont underestimate the power we have within ourselves as well as from our God above.
big hugs and keep the faith...one day at a time.
love.
darcar
thanks for that indepth explanation!
also..may i add im sorry to hear about your relapsing.
But i hear your strength and faith within and i dont underestimate the power we have within ourselves as well as from our God above.
big hugs and keep the faith...one day at a time.
love.
darcar
I'm so sorry to hear that it came back, but glad to hear you are thinking positively. Best wishes.
FlGal
FlGal
This is just one of the many articles on cryo.
http://www.hepatitis-central.com/hcv/cryo/connection.html
"People with Hepatitis C who suffer numbness or tingling in their extremities know from experience there is an association between HCV and neuropathy. Increasingly, their claims are finding support: according to medical researchers and clinical physicians, there is a "very strong association" between hepatitis C virus and a blood condition called essential mixed cryoglobulinemia (EMC). Among other symptoms, EMC can cause nervous system abnormalities. Researchers have not yet explained the precise connection between HCV, EMC, and neuropathy, nor have they found significantly effective treatments, but knowledge is sure to increase as more people are diagnosed with HCV and its symptoms increasingly studied.
Neuropathy refers to any disease of the nervous system resulting from localized inflammation of the nerves. If symptoms appear in the body's extremities, the condition is called "peripheral neuropathy," and most HCV-related neuropathies are of this sort. Patients complain of numbness, tingling, and muscle weakness. A physical examination may also reveal decreased deep tendon reflexes. Occasionally, arm and back pain occurs. One patient has even blamed the nerve inflammation for lost teeth.
If symptoms derive from brain malfunction, the condition is an encephalopathy, or central nervous system disease, and the symptoms are more sinister than those of peripheral neuropathy. A team led by George W. Petty reported two cases of encephalopathy in HCV-infected patients in the July 1996 issue of the Mayo Clinic Proceedings. In both cases small vessels in the brain became inflamed, impairing blood flow. One patient had numbness in the right lip, hand, and leg, weakness in the right hand and arm, and word-finding difficulty. The other patient had headaches and seizures, although the latter may have come in part from medication for the headaches."
http://www.hepatitis-central.com/hcv/cryo/connection.html
"People with Hepatitis C who suffer numbness or tingling in their extremities know from experience there is an association between HCV and neuropathy. Increasingly, their claims are finding support: according to medical researchers and clinical physicians, there is a "very strong association" between hepatitis C virus and a blood condition called essential mixed cryoglobulinemia (EMC). Among other symptoms, EMC can cause nervous system abnormalities. Researchers have not yet explained the precise connection between HCV, EMC, and neuropathy, nor have they found significantly effective treatments, but knowledge is sure to increase as more people are diagnosed with HCV and its symptoms increasingly studied.
Neuropathy refers to any disease of the nervous system resulting from localized inflammation of the nerves. If symptoms appear in the body's extremities, the condition is called "peripheral neuropathy," and most HCV-related neuropathies are of this sort. Patients complain of numbness, tingling, and muscle weakness. A physical examination may also reveal decreased deep tendon reflexes. Occasionally, arm and back pain occurs. One patient has even blamed the nerve inflammation for lost teeth.
If symptoms derive from brain malfunction, the condition is an encephalopathy, or central nervous system disease, and the symptoms are more sinister than those of peripheral neuropathy. A team led by George W. Petty reported two cases of encephalopathy in HCV-infected patients in the July 1996 issue of the Mayo Clinic Proceedings. In both cases small vessels in the brain became inflamed, impairing blood flow. One patient had numbness in the right lip, hand, and leg, weakness in the right hand and arm, and word-finding difficulty. The other patient had headaches and seizures, although the latter may have come in part from medication for the headaches."
Thanks again everyone.
mkeela, I started in January and ended in June. Yeah I think we fought the war at the same time, you're right. I'm glad to see that things are going well for you. You had a rough battle. I probably would have thrown in the towel, but you hung in there and it paid off for you to do so.
I doubt I'll treat again. God is in control and He of course knows I have hep and can touch me at any time, in His timing not mine. So thats where I am at this point. Trusting God,,, its funny because when I was relying on the meds to cure me, I was so stressed, now I have perfect peace that only God can give. I do believe God can work thru doctors and medicine and I would never tell people not to go that route, I did it myself, but what I want everyone to know is that if tx fails, don't give up hope. Miracles happen everyday, ask any nurse or doctor in a delivery room.
mkeela, I started in January and ended in June. Yeah I think we fought the war at the same time, you're right. I'm glad to see that things are going well for you. You had a rough battle. I probably would have thrown in the towel, but you hung in there and it paid off for you to do so.
I doubt I'll treat again. God is in control and He of course knows I have hep and can touch me at any time, in His timing not mine. So thats where I am at this point. Trusting God,,, its funny because when I was relying on the meds to cure me, I was so stressed, now I have perfect peace that only God can give. I do believe God can work thru doctors and medicine and I would never tell people not to go that route, I did it myself, but what I want everyone to know is that if tx fails, don't give up hope. Miracles happen everyday, ask any nurse or doctor in a delivery room.
So sorry for my memory...it's still not as good as it was before tx, school has been very difficult for me because of this, anyway, I just wanted to appologize for not remembering when you treated. Now I remember you STARTED around the same time I finished up...I just remembered how much you were there for me as I DID treat and that caused me to think you were treating with me...in a way you were LOL. Prayers and blessings to you, -Mkeela
Goodness. I have NO idea what to say. I'm so sad for you and really thought you had this beat. I don't come on the board much anymore since I am so busy lately with school and studies, but something told me to check on the place...and look at this. I am in utter disbelief. I will really pray hard for you sweety. BIG HUGS AND LOTS OF ANGELS YOUR WAY!!!!!!!!!! -Mkeela
p.s. what were the beginning and ending dates of your tx?? I thought we treated almost side by side???
p.s. what were the beginning and ending dates of your tx?? I thought we treated almost side by side???
So sorry to hear about your relapse. Your faith in the Lord will carry you through. The new meds will be out in 2009 (so says Dr. Gish). You are very strong. Take care and God bless you.
GrandmaA
GrandmaA
LOL. Glad you've still got your sense of humor, but I will be watching for any "try colloidal silver?" threads to make sure your name is not attached. (Although those Russian ideas about recirculating blood through 'zapping' machines always caught my interest :) )As to the xtra shots, I'm sure your doc has some in his fridge if you're still talking to him on Tuesday.
Be well,
-- Jim
Be well,
-- Jim
Thanks everyone. I'm doing fine. I actually feel better knowing. I just wish I heard from the doctors office in case I should have tried to do a few shots to try to see what would happen.
Jim, I was on weight based. I don't know if you remember but I purposely put on about 15 pounds or so prior to tx. I was worried I would be sick and loose weight from tx and have to stop. So when I started tx I was 137lbs with the added weight, but I never got sick as you know and so the weight didn't come off from tx. Now I have to diet. I'm 5'6" so I don't look fat, but I like less weight on me. I was on 1,000 of riba.
I did go down to 9.8 hemo at my lowest. I didn't know it was that low until I picked up my lab at the doctor and even then I didn't see it until I got home. The doctor had said he would use procrit at 10.0, but I guess the NP thought differently or maybe becasue it was right at the end of tx this happened. I didn't really drop for quite a while if I remember. Never felt anemic just a little breathy toward the end weeks.
But yes I did think about possibility of not having anemia thru out tx may have worked against me as the riba might not have been enough but I think adding another 200 riba may have been dangerous. I even started to wonder if the reason I didn't become anemic was becasue of my healthy lifestyle. Kinda sad to think on those terms - that a healthy life style kept my blood at a good level and ruined my chance of svr. But then again there are those who have become anemic and didn't svr. I do know that my iron ferritan was normal prior to tx but was never taken again during tx except the very end. The doctor checked it a few weeks before tx ended and it was high. That has me ticked becasue maybe it became high early on for some reason and that is what helped the virus to replicate? I am kicking myself that I didn't notice that it wasn't being checked along the way by the NP.
I didn't have the numbness in my hands last night when I went to bed. It usually wakes me up. I do have it in my mouth, lips, gums and tongue though right now. It would be nice to think it was from the meds leaving, but in the back of my head its cryo and after tx the cryo went berserk for a while and maybe is settling down now. I hope I am wrong this time, but I am starting to have confidence in my self dx lately and I don't want to be right, believe me.
Bug, I hope your flashes are from menopause. This whole hep C is one big pain in the neck. We guess, the doctors guess, our family takes a guess and no one ever really knows why we have certain symptoms. Its crazy. My PCP will keep an eye on my CRP for inflamation and all that. During tx it was good, now its up a tad.
So that's the story. I can see that my husband feels better because he sees I am less stressed now knowing than what I was before I knew. I freak out when I shouldn't and I DON'T freak out when I should. Its weird but alot of times thats how how I handle things.
But buy for now. I'm just chillin'. Gonna make myself another cup of green tea. It is one of the things that crosses the BBB and so I will continue to drink that.I'll check the computer now and then today to see what you all are doing or if anything is going on. I hope I don't become one of those people that opens threads and says "Try collidal silver Interferon don't work." LOL Just kidding I won't.
Jim, I was on weight based. I don't know if you remember but I purposely put on about 15 pounds or so prior to tx. I was worried I would be sick and loose weight from tx and have to stop. So when I started tx I was 137lbs with the added weight, but I never got sick as you know and so the weight didn't come off from tx. Now I have to diet. I'm 5'6" so I don't look fat, but I like less weight on me. I was on 1,000 of riba.
I did go down to 9.8 hemo at my lowest. I didn't know it was that low until I picked up my lab at the doctor and even then I didn't see it until I got home. The doctor had said he would use procrit at 10.0, but I guess the NP thought differently or maybe becasue it was right at the end of tx this happened. I didn't really drop for quite a while if I remember. Never felt anemic just a little breathy toward the end weeks.
But yes I did think about possibility of not having anemia thru out tx may have worked against me as the riba might not have been enough but I think adding another 200 riba may have been dangerous. I even started to wonder if the reason I didn't become anemic was becasue of my healthy lifestyle. Kinda sad to think on those terms - that a healthy life style kept my blood at a good level and ruined my chance of svr. But then again there are those who have become anemic and didn't svr. I do know that my iron ferritan was normal prior to tx but was never taken again during tx except the very end. The doctor checked it a few weeks before tx ended and it was high. That has me ticked becasue maybe it became high early on for some reason and that is what helped the virus to replicate? I am kicking myself that I didn't notice that it wasn't being checked along the way by the NP.
I didn't have the numbness in my hands last night when I went to bed. It usually wakes me up. I do have it in my mouth, lips, gums and tongue though right now. It would be nice to think it was from the meds leaving, but in the back of my head its cryo and after tx the cryo went berserk for a while and maybe is settling down now. I hope I am wrong this time, but I am starting to have confidence in my self dx lately and I don't want to be right, believe me.
Bug, I hope your flashes are from menopause. This whole hep C is one big pain in the neck. We guess, the doctors guess, our family takes a guess and no one ever really knows why we have certain symptoms. Its crazy. My PCP will keep an eye on my CRP for inflamation and all that. During tx it was good, now its up a tad.
So that's the story. I can see that my husband feels better because he sees I am less stressed now knowing than what I was before I knew. I freak out when I shouldn't and I DON'T freak out when I should. Its weird but alot of times thats how how I handle things.
But buy for now. I'm just chillin'. Gonna make myself another cup of green tea. It is one of the things that crosses the BBB and so I will continue to drink that.I'll check the computer now and then today to see what you all are doing or if anything is going on. I hope I don't become one of those people that opens threads and says "Try collidal silver Interferon don't work." LOL Just kidding I won't.
I was awake 1/2 the night and I thought about the same thing---was the dose of ribavirin high enough? I know that they don't always weight base geno 2. I was given the standard dosage of 800 mg, but that's weight based for me.
Now I'm wondereing if the virus has come back for me too. I have hot flashes all the time, I thought it had something to do with menopause. I even asked when does menopause pause for good because I seem to have had it for about the last 8 years.
Know way to know till I get tested. If it comes back positive I'll be in good company at least.
Bug
Now I'm wondereing if the virus has come back for me too. I have hot flashes all the time, I thought it had something to do with menopause. I even asked when does menopause pause for good because I seem to have had it for about the last 8 years.
Know way to know till I get tested. If it comes back positive I'll be in good company at least.
Bug
really sorry to hear your news...stay positive and I am sure you will beat it with His help
Take care
Take care
Probably not the time to do a post mortem (maybe too soon and maybe your next PCR will be negative), but just wanted to convey a couple of thoughts in the event you disappear from here for a while (hope you don't) and/or decide to treat again soon (hope you don't but you never know).
Anyway, given the fact you had so few side effects on treatment, wondering if you had enough ribavirin, as some people appear to metabolize it differently. Studies have suggested that anemia has some positive correlation with SVR, i.e. the more anemic you are, the better the chances for SVR. Anyway, if you didn't have much of a hemoglobin drop during treatment, something to consider next time if/when you decide to treat. Still hoping you will be UND on your next PCR but I agree it appears to be a long shot, but still NYGirl did go through something similar.
Hope today finds you OK.
-- Jim
Anyway, given the fact you had so few side effects on treatment, wondering if you had enough ribavirin, as some people appear to metabolize it differently. Studies have suggested that anemia has some positive correlation with SVR, i.e. the more anemic you are, the better the chances for SVR. Anyway, if you didn't have much of a hemoglobin drop during treatment, something to consider next time if/when you decide to treat. Still hoping you will be UND on your next PCR but I agree it appears to be a long shot, but still NYGirl did go through something similar.
Hope today finds you OK.
-- Jim
I am so soo sorry to hear this, Both you and Rick in the same day.. I know your frustration at your doctors office, I experienced the same thing when first starting treatment. I was very vocal about their inability to do their jobs, or make notes in file, etc. He ended up replacing the entire front office staff. I too thought I am suffering from Cryo, My fingers are numb and cracked. This week I cut 2 of them on the edge of a carry out dish. But I can certainly feel those. its hard to type . But anyway, the PCP tested me for cryo, and a few other things, they said everything came back in normal ranges, except my lipids, tryglyceredes were 240, watch my sugar intake ? What my sugar was fine A1C at 4.2. I think she meant carbs, to watch out for.. Anyway I am so sorry to hear of your news, and Rick as well. Now you got me wanting them to do another PCR, but my GI says not till 6 mos post ? I am still treating.. So maybe will see if I can talk him into it when I go to my appointment next week. My prayers are with you and your family. God will get you thru this. There will be something better, and you have time.....
Myown - I'm sorry to hear this... But like I told Cirque - dangit --- BE STRONG!!!
I'm sending you super big hugs, warm thoughts and extra immunities!
Meki
I'm sending you super big hugs, warm thoughts and extra immunities!
Meki
My PCP called the hep office at 12:30 Pm. No one picked up the phone. He got voicemail and turned to me and said, "What are they kidding me, they don't answer?" I told him that that is very common with that office. He then pressed the doctors only extension and a girl picked up the phone and said she would transfer him to the doctors secretary. Well guess what nobody picked up and my pcp had to leave a voicemail.
I was home all afternoon. Someone could have called. That place is too busy. I doubt they left early. It is a holiday weekend, but still I would bet they were there all day. I wasn't faxed my labs after the first set when tx first started. My NP told me it's too stressful for the receptionist. I emailed my NP and told her to at least email me the most important numbers from my 4 week post because I had an appointment with my PCP and he will want to know the results AND SO WILL I want to know. She never emailed me back and I gave her several days notice. The day of my PCP appointment came, I get a call from my mother on my cell when I arrived at my PcP's office that the hep office wants to fax me my results at my house. Oh I left out a part. Because of not receivng an email with the results I left a message on their voicemail to please get the results to me. So anyhow getting back to me being at my pcp's office. I told the receptionsist to call the hep receptionist and have her fax them here to this office. Well she calls and gets voicemail. This is about 9:30 Am and I know she is there cause she just got off the phone with my mother. The receptionist called 3 more times still no one answers. I don't think I have to tell you the mood I was in. Thankfully my PCP knows me a while at this point and doesn't hold me down and inject me with a drug to knock me out. Well she finally gets a hold of her and it took about an HOUR for her to get the fax thru while I sat there and let others go ahead of me. My doc and I talked for a long time after that about health, nutrition and stuff so I was cooled off before I left his office. I was so ticked off and sitting there a talking to my doc helped calm me down. I think when the flames weren't coming out of my mouth and nose anymore is when the conversation ended and he felt okay to let me drive.
So anyhow getting back to this receptionist,she doesn't know how to fax, I'm supposed to trust my NP that if anything is wrong with my labs, she will get in touch with me and not to worry. And becasue this 'tolerance and don't judge people cr@p " that is shoved down our throat these days I have a complex that maybe I expect too much from people and I don't cut enough slack. Well no more. I'm going back to my old self. From now on when someone doesn't do their job and especially when it comes to my health, they will hear me loud and clear. Fire people that are stupid and don't know how to use a fax machine if that is their job. So anyhow doesn't matter how good a doc might be, if they have stupid desk people it can destroy the entire operation.
Its funny you said that about the interferon and giving myself a shot. I even said that to my husband. I said wouldn't it be hot stuff if the doctor would have told me that IF he would have contacted me and meantime he may not have even received the message about my lab. I did email him a little while ago.I don't have any interferon left though, so that plan is out the window.
My liver was 0 so not much to heal ya know Jim. I just wanted this virus out of me. Makes me itchy to think of it.
Well time to go to bed, I just heard my husband pull up and so I'll let him know all is well. I can't complain, things could always be alot worse. I was sitting next to a guy at my mothers Oncologists office. He was getting chemo. He said the cancer was all through his body in organs and you name it. Young, good looking and very sweet, sitting there with his sister. My problem is nothing when I look at someone in that position.
Take care Jim. Thanks so much for all of your advice, concern and friendship.
Take care Jimmmmmmmie.
I was home all afternoon. Someone could have called. That place is too busy. I doubt they left early. It is a holiday weekend, but still I would bet they were there all day. I wasn't faxed my labs after the first set when tx first started. My NP told me it's too stressful for the receptionist. I emailed my NP and told her to at least email me the most important numbers from my 4 week post because I had an appointment with my PCP and he will want to know the results AND SO WILL I want to know. She never emailed me back and I gave her several days notice. The day of my PCP appointment came, I get a call from my mother on my cell when I arrived at my PcP's office that the hep office wants to fax me my results at my house. Oh I left out a part. Because of not receivng an email with the results I left a message on their voicemail to please get the results to me. So anyhow getting back to me being at my pcp's office. I told the receptionsist to call the hep receptionist and have her fax them here to this office. Well she calls and gets voicemail. This is about 9:30 Am and I know she is there cause she just got off the phone with my mother. The receptionist called 3 more times still no one answers. I don't think I have to tell you the mood I was in. Thankfully my PCP knows me a while at this point and doesn't hold me down and inject me with a drug to knock me out. Well she finally gets a hold of her and it took about an HOUR for her to get the fax thru while I sat there and let others go ahead of me. My doc and I talked for a long time after that about health, nutrition and stuff so I was cooled off before I left his office. I was so ticked off and sitting there a talking to my doc helped calm me down. I think when the flames weren't coming out of my mouth and nose anymore is when the conversation ended and he felt okay to let me drive.
So anyhow getting back to this receptionist,she doesn't know how to fax, I'm supposed to trust my NP that if anything is wrong with my labs, she will get in touch with me and not to worry. And becasue this 'tolerance and don't judge people cr@p " that is shoved down our throat these days I have a complex that maybe I expect too much from people and I don't cut enough slack. Well no more. I'm going back to my old self. From now on when someone doesn't do their job and especially when it comes to my health, they will hear me loud and clear. Fire people that are stupid and don't know how to use a fax machine if that is their job. So anyhow doesn't matter how good a doc might be, if they have stupid desk people it can destroy the entire operation.
Its funny you said that about the interferon and giving myself a shot. I even said that to my husband. I said wouldn't it be hot stuff if the doctor would have told me that IF he would have contacted me and meantime he may not have even received the message about my lab. I did email him a little while ago.I don't have any interferon left though, so that plan is out the window.
My liver was 0 so not much to heal ya know Jim. I just wanted this virus out of me. Makes me itchy to think of it.
Well time to go to bed, I just heard my husband pull up and so I'll let him know all is well. I can't complain, things could always be alot worse. I was sitting next to a guy at my mothers Oncologists office. He was getting chemo. He said the cancer was all through his body in organs and you name it. Young, good looking and very sweet, sitting there with his sister. My problem is nothing when I look at someone in that position.
Take care Jim. Thanks so much for all of your advice, concern and friendship.
Take care Jimmmmmmmie.
I am SOOOO sorry to hear this. I think Jim has good advice. I would get another test, just to be sure. My best to you. OH
I am sorry to hear this news....you are in my prayers. Your faith and your hope is in the right place. In Him...we will prevail.
Yvonne
Yvonne
Have an Answer?
You are reading content posted in the Hepatitis C Community
Learn about this treatable virus.
Getting tested for this viral infection.
3 key steps to getting on treatment.
4 steps to getting on therapy.
What you need to know about Hep C drugs.
How the drugs might affect you.
These tips may up your chances of a cure.
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
