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After treatment - Do you feel better?
So..my main focus is feeling better. Please tell me, do you feel better after completing your treatment?
This is an old thread (2009). Many people will probably not read it.
Please go to near the top of the page and click on the orange bar "Post a Question." Then post a new question in a the new thread. You will get more responses that way.
Entitle it something like "Liver Transplant and Hep C Treatment."
Then, post your question. It will help if you provide more information about yourself.
Your Genotype
Have you ever treated in the past
If you treated before, what happened
When was your liver transplant
What are your current symptoms
If you have recent lab results, what are they
Have you had a recent liver biopsy
Anything else that would help people to know more about you so they can respond more accurately
Please go to near the top of the page and click on the orange bar "Post a Question." Then post a new question in a the new thread. You will get more responses that way.
Entitle it something like "Liver Transplant and Hep C Treatment."
Then, post your question. It will help if you provide more information about yourself.
Your Genotype
Have you ever treated in the past
If you treated before, what happened
When was your liver transplant
What are your current symptoms
If you have recent lab results, what are they
Have you had a recent liver biopsy
Anything else that would help people to know more about you so they can respond more accurately
This is an old thread from 2009. I suggest you start a new thread with your question.
I had a transplant in 2009 and finished hep C treatment last March.
In order to answer your question it might help if we know more about you.
I had a transplant in 2009 and finished hep C treatment last March.
In order to answer your question it might help if we know more about you.
Wow..can I tell you how good it is to hear from each of you?
Thank you for sharing your experience's. It is comforting to know I am not crazy...or alone.
In the past several doctor appointments, I was told by the doctor's that the symptoms I experienced had nothing to do with HCV. They said, "I would not have any symptoms until I was cirrotic and then I would be yellow."
I knew I always slept more then most people and that did have a negative impact on my last relationship. My fatigue has affected my work, school and social life. Even when I was awake, I experienced brain fog. I always had the pain near my liver, but again, the doctors told me that was not a symptom of the HCV and had to be a muscle strain.
Granted some days were better then others...I guess that is how I was able to cope.
Recently, my symptoms have increased to a bad episode of shingles, dizziness, fainting and body aches and my bad days seem to be closer together.
I had hoped my doctor would call me with the CAT test and Hepatologist referral that we discussed 5 days ago, but no call to date. I did leave a message with the staff.
I am eager to get the treatment started. If I am experiencing the symptoms, it may as well be for a good cause, SVR!
So, that is me...
Thanks for all that replied. There is a sense of comfort knowing that the symptoms are not just my own "unique" problem, but a valid condition of the virus.
Again, my main focus is feeling better. I can not tell you how good it is to hear from those of you that were treated and are now feeling energy again.
You reinforce my faith!
For those of us that are still experiencing symptoms, either pre tx or after, please know that I will walk through this journey with you. We will each strive to reach our potential optimal health! I will pray for comfort for each of you.
Peace...
Thank you for sharing your experience's. It is comforting to know I am not crazy...or alone.
In the past several doctor appointments, I was told by the doctor's that the symptoms I experienced had nothing to do with HCV. They said, "I would not have any symptoms until I was cirrotic and then I would be yellow."
I knew I always slept more then most people and that did have a negative impact on my last relationship. My fatigue has affected my work, school and social life. Even when I was awake, I experienced brain fog. I always had the pain near my liver, but again, the doctors told me that was not a symptom of the HCV and had to be a muscle strain.
Granted some days were better then others...I guess that is how I was able to cope.
Recently, my symptoms have increased to a bad episode of shingles, dizziness, fainting and body aches and my bad days seem to be closer together.
I had hoped my doctor would call me with the CAT test and Hepatologist referral that we discussed 5 days ago, but no call to date. I did leave a message with the staff.
I am eager to get the treatment started. If I am experiencing the symptoms, it may as well be for a good cause, SVR!
So, that is me...
Thanks for all that replied. There is a sense of comfort knowing that the symptoms are not just my own "unique" problem, but a valid condition of the virus.
Again, my main focus is feeling better. I can not tell you how good it is to hear from those of you that were treated and are now feeling energy again.
You reinforce my faith!
For those of us that are still experiencing symptoms, either pre tx or after, please know that I will walk through this journey with you. We will each strive to reach our potential optimal health! I will pray for comfort for each of you.
Peace...
You are so right, It is prety much the same story I had. Also for a quarter of a centry.
I never understood those who say that we are not supposed to feel the virus, I felt it and I suffered from it very much all the time.
Now, 9 months post tx, almost all the sx gone, I feel full of energy. My blood presuure became quite high but I hope that will also get back into to normal with time.
Jack
I never understood those who say that we are not supposed to feel the virus, I felt it and I suffered from it very much all the time.
Now, 9 months post tx, almost all the sx gone, I feel full of energy. My blood presuure became quite high but I hope that will also get back into to normal with time.
Jack
I had HCV for 23 years and was very symptomatic. I experienced terrible fatigue off and on for all of those years. HCV really interfered with my life and substantially reduced the quality of my life. I completed treatment in June of 2007 and have SVR-ed since then. Now I feel great and started feeling great within a month of concluding treatment. For me being cured was a godsend, a transformation - both physically and emotionally. My life after treatment is entirely different than it was before (in a good way). This experience doesn't happen to everyone, but for many it does. No one knows beforehand what the outcome of their treatment will be. Whether they will be cured or whether or not they'll feel better when they're finished and a few years pass to let the drug's after effects work their way out of your body.
The main thing I learned about HCV after having it for nearly a quarter century, being treated for it and then recovering, is that HCV affects much more than just your liver. It affects your entire body and mind. HCV can be a powerful modulator of your general health and well being. Your body is literally saturated with HCV virions when you are actively infected, and it should come as no surprise that it has the power to alter your state of being. It should also not be surprising that permanently eliminating the virus can help you feel better in a very real way.
The main thing I learned about HCV after having it for nearly a quarter century, being treated for it and then recovering, is that HCV affects much more than just your liver. It affects your entire body and mind. HCV can be a powerful modulator of your general health and well being. Your body is literally saturated with HCV virions when you are actively infected, and it should come as no surprise that it has the power to alter your state of being. It should also not be surprising that permanently eliminating the virus can help you feel better in a very real way.
I am almost 5 months post and I feel very good, I felt very bad during treatment and also I felt bad during some years before the treatement where the infection was active.
I believe in this treatement - Interferon + Riba, it is difficult but worth it.
I wish you full recovery and health.
Jack
I believe in this treatement - Interferon + Riba, it is difficult but worth it.
I wish you full recovery and health.
Jack
I too lost a lot during TX. The side effects weren't unbearable, but the invasiveness of the whole procedure took it's toll. I am 57 years old and I looked about 52 when I began treatment. During TX I came to look 62 and now with TX over by about 7 weeks I've rolled back my years to probably 60 and the way I look is the way I feel.
Hey just wondering. I wonder if the doctor can get your records somehow - even with money owed (believe me I get that fact first hand as anybody here will tell you!) you would think it would be unethical to hold records of that nature. Stage 3/4 could be considered life threatening to me it seems that keeping them over $$$ would be completely against the law.
But God's knows we all know how uncaring the world can be - still it might be worth asking. The doctor could call the lab itself that processed the test maybe? Yeah that sounds like its possible right?
Either way if you just had the biopsy I wouldn't think you would need another right away. As long asyou know what grade/stage you are - that should be good enough for them to see the need for you to start treatment and treat aggressively immediately.
But God's knows we all know how uncaring the world can be - still it might be worth asking. The doctor could call the lab itself that processed the test maybe? Yeah that sounds like its possible right?
Either way if you just had the biopsy I wouldn't think you would need another right away. As long asyou know what grade/stage you are - that should be good enough for them to see the need for you to start treatment and treat aggressively immediately.
I completed the full regimen of medications in 2002 at 35 years old. I have been very healthy and have tested negative every year. However, I have reached full blown menopause by the age of 45. My mom and sister were in their late 50's when they started menopause so my doctor says it isn't hereditary. I wish I had known before starting treatment so that I could have stored some of my eggs in case I wanted to get pregnant. Please consider this.
Looking back 3 and a half years ago to finishing a successful treatment and SVR I now have a perspective that is helpful. I no longer dwell on the small stuff. Thats not to say I didnt have a hard road recovering. But eventually it boiled down to one pretty powerful fact - I dont have hep any more. I am still coming to terms with this fact as hep had worked its way pretty well into my life and consciousness. I am trying to build a life based on not having hep. Thought it would be easy - but to me it may be harder that the tx itself.
I think that tx really robbed some essential parts of me that seem pretty much lost forever. I guess they could be coming back little by little. Thinks do seem to get better each day. Little things improve. Not everthing can be blamed on tx. Some of my worst little symptoms are related to stress - I dont think you can downplay the effect of the stress of treatment and the stress of waiting out that blood tests, etc. As those problems drop off the stress drops off and I feel better.
What is concerning is that some life force was shed during that tx fight - a cost of the victory perhaps. I wish all was well. I wish I had the mojo I once had. I dont. Perhaps it is age. Perhaps I am just basking in the peace that comes with not feeling that you are dying faster than everyone you care about. A feeling that you cant be counted on - that your not free. A constant reminder of some bad errors in judgment perhaps. Whatever, that is not the case and that is what it boils down to - the fact that you are no longer suffering from that particular illness. But with so many other handsome illnesses available, it is sometimes hard to resist the temptation. I was just so good at being miserable that I actually drop in for a visit. Happiness is hard after you have found out its secret. It is fleeting and fragile and temporary and not to be trusted. Misery really does love company,no matter how much of an ahole you are. Now that is spoken like someone with a missing life force for sure.
I think that tx really robbed some essential parts of me that seem pretty much lost forever. I guess they could be coming back little by little. Thinks do seem to get better each day. Little things improve. Not everthing can be blamed on tx. Some of my worst little symptoms are related to stress - I dont think you can downplay the effect of the stress of treatment and the stress of waiting out that blood tests, etc. As those problems drop off the stress drops off and I feel better.
What is concerning is that some life force was shed during that tx fight - a cost of the victory perhaps. I wish all was well. I wish I had the mojo I once had. I dont. Perhaps it is age. Perhaps I am just basking in the peace that comes with not feeling that you are dying faster than everyone you care about. A feeling that you cant be counted on - that your not free. A constant reminder of some bad errors in judgment perhaps. Whatever, that is not the case and that is what it boils down to - the fact that you are no longer suffering from that particular illness. But with so many other handsome illnesses available, it is sometimes hard to resist the temptation. I was just so good at being miserable that I actually drop in for a visit. Happiness is hard after you have found out its secret. It is fleeting and fragile and temporary and not to be trusted. Misery really does love company,no matter how much of an ahole you are. Now that is spoken like someone with a missing life force for sure.
This treatment will knock you on your butt! I am on week seven of treatment and have experienced almost every side effect there is. I am bedridden or housebound most of the time. It is wonderful when I have a good enough day to manage to make it to the supermarket for some necessary items. I have thought about giving up but, thank goodness, I have a good family support system and have someone to call when I am really feeling down. I am dizzy all the time, very weak, can barely make it from room to room some days. I have dry mouth and my entire mouth is red, raw and sore. I do not ever remember feeling this bad, but I have been reassured by several on this forum that have been through the treatment and promised me things will get better. I look forward to that, but right now, sometimes I just get through hour by hour. Hang in there.
to be very honest, not really. i'm currently almost 5 months post treatment and i feel socially awkward since treatment isolated me from most of my friends. there are fewer people i feel like i could trust and no one really seemed to understand me. but this is not to suggest that i do not like socializing with people, i still enjoy it occasionally, but health is always my top priority, i do not drink for this reason. i'm glad treatment is over.
Treatment nearly killed me. I ended up admitted through the ER for an attack of Acute Pancreatitis and believe me...it was only a......not cute (smiling goofily). Now I'm laughing at my stupid joke but that's ok. Hey, it has been a month since I was taken off treatment because of the pancreatitis and I am feeling the James Brown kind of "I feel good!" I just hope I'm still UND
Joey
Joey
I feel better, now, 6 weeks post tx, than I've felt in years. I didn't even realize how bad I felt before. It crept up on me. It took 2 or 3 weeks, after tx before I noticed an improvement. There have been a few minor issues, since treatment, but they seem to be subsiding.
I experienced fatigue and brain fog before treatment. During treatment it was really bad. I was bedridden all the way through. 6 months after treatment I feel great physically, really great!
Thank you to all of you for the replies :) I am experiencing extreme fatigue, body aches,dizziness,foggy headed and so on. This is before treatment, so if these are the same symptoms as with the treatment, I might as well get started. I went to an Interist yesterday to get the referral for a Heptologist. She was originally going to go with a GI, but I stressed the importance of a Hep specialist and she agreed with that. (Thanks nygirl7...This was something I believe you shared with me)
The staff doctor also was attributing my dizziness to positional vertigo, but after some head manipulation, they decieded that was not it. They did run an ammonia test...another suggestion that I found on the forum. Anyway.. they are suppose to call me with the appt for the Hep doc and a CAT scan of the liver.
My previous GI that did my biopsy a year ago is holding all my records due to a bill that is still owed. I hope I don't have to go through another biopsy before getting my treatment started. Last biopsy showed stage 3/4.
I also found that if I was not working I could qualify for state insurance. I had a serious conversation with my employer and I am sensitive to their staffing needs and my attendence issues due to illness. I have not been there long enough to get STD, but even if I stayed there, the insurance would not pick me up due to this being considered pre-exsisting. So... we are parting ways so I can pick up some state insurance and maybe get some state assistance while I am going through this.
Anyway... This is where I am.
Mainly waiting for phone calls and appointment times right now. I am just eager to get started on the treatment and get to feeling better. :) That is my plan!
Peace :)
The staff doctor also was attributing my dizziness to positional vertigo, but after some head manipulation, they decieded that was not it. They did run an ammonia test...another suggestion that I found on the forum. Anyway.. they are suppose to call me with the appt for the Hep doc and a CAT scan of the liver.
My previous GI that did my biopsy a year ago is holding all my records due to a bill that is still owed. I hope I don't have to go through another biopsy before getting my treatment started. Last biopsy showed stage 3/4.
I also found that if I was not working I could qualify for state insurance. I had a serious conversation with my employer and I am sensitive to their staffing needs and my attendence issues due to illness. I have not been there long enough to get STD, but even if I stayed there, the insurance would not pick me up due to this being considered pre-exsisting. So... we are parting ways so I can pick up some state insurance and maybe get some state assistance while I am going through this.
Anyway... This is where I am.
Mainly waiting for phone calls and appointment times right now. I am just eager to get started on the treatment and get to feeling better. :) That is my plan!
Peace :)
I feel better mow than when I was on TX. Do I feel better now than before TX? I don't really see any remarkable difference. My hand still fall asleep. My shoulders still crackle and hurt. My big toes on both feet still have problems, one's arthritic and the other goes numb all of the time. I don't sleep as wll as I used to. I still suffer from mood swings, and many other things. It's only been about 7 weeks since TX ended, so maybe things will improve more as I get more of the poison out of my system. Maybe hep caused permanent, irreversible damage. Maybe the hep was never to blame. I don't know. All I do know is that I don't really feel any better now than preTX. I guess my overall health now is better. I don't know. At least I don't have to worry about advancing liver desease.
yesterday at check up: EKG is good, white count is still low, urine is good. I can't say I feel lots better but I do feel better than when I was on tx. Oh the side effect...... but I will attempt to try another form of tx in Dec. My dragon is sleeping today so I'm trying to clean house. My swollen eyelids are due to alleriges Dr. thinks & gave me a RX for Allegra. Hoefully no more swollen eyes - will keep you posted on how that does. I live in the mid west where allergies are rampent. Until then my fellow HCV friends - keep your head up & a smile in your heart.
yeah I agree with you about the INF causing permenent damage. I go to my general Dr. today so I'll post anything new tomorrow.
it has only been 13 weeks post tx and I feel worse then I did before. hard time sleeping & joint pain. No one can tell me any different, interferon causes permanent damage! I hope time will help me feel better.
Not yet I don't but I have not given up hope so don't you either, please! After 6 months of tx my quant. level went up, not down. My tx was stopped. I am ready to ok another tx in December. Keep your head up, a smile on your face as much as possible - it will help I promise. Laughter is the only thing that saved me somedays. I'm 52 yrs. old & genotype 3 which is supposed to be eay to tx. Guess not always in my case but there will be something. What does hurt me now? Aches & pains mainly in my joints. I have stomach/liver pain (mild) & some vomiting. I do have a low grade fever most days & get tired easy. I'm no longer yellow/orange & I'm still alive so that's a blessing itself. Stay strong & know you have people like you pulling for you & hopeing things get better - and really mean it. I will help all I can - let me know.
Lucky
As a 3/4 your primary goal now is to not let your liver get any worse. Feeling better is a great concept but right now you have very advanced liver damage and really need to make sure it does not have the chance to deteriorate any further. That might sound rather harsh but it's the truth. You need to stop the progression now while you can before you are completely cirrhotic.
Many of us didn't even know we had the disease before we were diagnosed and had no idea we had a problem so it's hard to judge if we feel "better" or not. As a stage 3 I knew it was only a certain amout of time until I was cirrhotic and then most likely a certain amount of time till I had end stage damage if I didn't do anything. I had two friends who have died of this disease and believe me....you do NOT want to have this happen to you - it's NOT pretty.
so make that your priority - getting rid of the hep and saving your liver. Dont worry about later or side effects or any of that trivial stuff. Right now you just need to worry about doing everything you can to get rid of hepc once and for all.
As a 3/4 your primary goal now is to not let your liver get any worse. Feeling better is a great concept but right now you have very advanced liver damage and really need to make sure it does not have the chance to deteriorate any further. That might sound rather harsh but it's the truth. You need to stop the progression now while you can before you are completely cirrhotic.
Many of us didn't even know we had the disease before we were diagnosed and had no idea we had a problem so it's hard to judge if we feel "better" or not. As a stage 3 I knew it was only a certain amout of time until I was cirrhotic and then most likely a certain amount of time till I had end stage damage if I didn't do anything. I had two friends who have died of this disease and believe me....you do NOT want to have this happen to you - it's NOT pretty.
so make that your priority - getting rid of the hep and saving your liver. Dont worry about later or side effects or any of that trivial stuff. Right now you just need to worry about doing everything you can to get rid of hepc once and for all.
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