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get a second opinion
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get a second opinion

dear forum  members,

it is soon 6 months since i finished my hep-c treatment.
4.5 months post tx i still was UND,so i hope for an svr.

as i still feel often lousy and wonder why.i want to get a second opinion about my condition/situation,as i have 2 tranasplant center 30 miles around where iam living.
do you think its every poeples right to get/hear a second opinion or diagnosis?
did some of you have gone this way too?i mean to get another/second opinion?

apreciate your answers
marc
19 Comments Post a Comment
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4856858_tn?1365382377
There is absolutely nothing wrong with getting a second opinion. imho
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Avatar_f_tn
Hi Marc,
What do you want to get the second opinion for? The condition of your liver?
I don't see any harm in getting a second opinion just to see if there are any other issues you need to be concerned about, but I want to reassure you that it takes time for the drugs to leave your system and it is not unusual for ppl, especially cirrhotics to feel bad for quite some time post treatment. My readings say 6 months after tx, but many people write in stating that it took a year post TX to feel better.
Healing is often a long slow process especially if you have cirrhosis but it will happen.
riv
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1084115_tn?1385232189
yes i want a second opinion about the condition of my liver,especially if my liver has a realistic chance to heal or at leat improve a bit.
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1669790_tn?1333666195
Marc, although many of us may be curious to know the health condition of our liver after trt, I'm not sure what that will change.  Once you've received the information that you're SVR, if you found out your liver is in worse health than when you started, or visa versa, does that really change anything other than satisfying a curiosity?  I think we owe it to ourselves do our best to be kind to our livers, eating healthy diets, avoiding alcohol or drinking in moderation, etc.  If your medical system allows you to do a biopsy to satisfy your curiosity and that's important to you, then go for it.  
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1084115_tn?1385232189
you are right, nothing will change about the condition of my liver/health.
i m just looking for the propper care i think i need to have if my liver will not be able to heal/improve.(what iam thinkink of)
thats why i would like to see what are my options of care i can get from two diffrent hepatologists.
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317787_tn?1373214989
Hi I wanted to agree with Rivil, it takes time to recover from the tx. At 6 months the meds have finally left your body.  Then your body has to recover.
I would say, realistically it takes about a year to recover from the tx.
I remember Andiamo1 coming back on here about 5 or 6 years after he got to SVR and his liver had improved alot.
I hope that you feel better soon
D
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Avatar_f_tn
I know that everyone's situation is different.  In our case, I would certainly want a second opinion for my husband.  His medical condition is more complicated concerning his liver.  We will definitely need to know how much further damage has been done due to treatment.  This will likely affect treatment of his other issue.

Likewise, this also affects his military service.  He is about 5 years from retirement.  This could affect the remaining time he has and his benefits.
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766573_tn?1365170066
Wow I was just looking through your posts and you are F3 and maybe some cirrhosis? And treated 48 weeks with Incivek. You have been through a very rough time on harsh drugs. It sounds as if you had access to knowledgeable doctors throughout treatment. It also sounds like the side effects hit you like a freight train but you stuck with treatment.

I am a prior partial responder as well and I finished 48 weeks in December and I feel like I fell apart after treatment. I imagine it will take time to feel normal again and bounce back.  I thought I would be able to resume my normal activity in some capacity but I am amazed how long it is taking to heel.

There are a few threads on here about how rapidly the liver regenerates once the attack on our liver is gone. The things I have learned on here are and seen enough studies to support incorporating them in your lifestyle are:

1 - drink plenty of black coffee
2 - avoid red meat

Above all I think checking in and learning how others healed and made it through the experience might help: As well as those in this thread - The people in this thread
http://www.medhelp.org/posts/Hepatitis-C/Good-stuff-for-your-liver/show/1909629

http://www.medhelp.org/posts/Hepatitis-C/What-should-you-eat-with-HepC-and-Liver-Damage/show/1798683

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1084115_tn?1385232189
thank you all for your helpfull tips and opinions.

i will have the apointment in 2 weeks.

best wishes to everyone here
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1840891_tn?1383280315
Hi Rex, I don't check the social forum as often as I should, and I just saw this post. I wanted to let you know you are not alone. I'm 7 months post EOT and I am SVR, but I'm still not feeling as good as I'd hoped. I wanted to be like Pooh, who feels better than she has in 20 years. Instead I feel about the same as I did before tx, which is to say, tired most of the time. I need at least 9-10 hours of sleep each night (10 years ago I was good with 7 hours), and I'm still very tired much of the time. My auto-immune arthritis hasn't gone away either and I still have some brain fog, though that is at least somewhat better than just before tx. I've had cirrhosis for at least 9 years, so I'm also concerned with how much my liver can recover. My hepatologist told me it won't fully regenerate but it will remodel itself to some degree over time. He also told me there is no reason to expect my cirrhosis to progress anymore. He said I still need a checkup and US every 6 months for the rest of my life, but the visits will probably be very boring. He said my risk of HCC has dropped a huge amount now that the virus is gone. When I asked about why I'm still so tired he said to give myself 12 months after tx, and if I don't feel a lot better by then I should start looking at what else could possibly be causing the problems, but at this point it might still be the tx. I hope this helps you a little bit.
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1084115_tn?1385232189
thank you for your posting.it helps to see iam not the only one whos still not recovered.
iam 40 years old but i fell like i m 80.
i ihave pain in the muscels und bones,and still have nausea alltought it has decreased.i still feel not even close to what i was before tx.

when i remeber in 2009 when i finished my 48 weeks soc,i felt so good after the treatment like i never did before.despite my virus was still there.
this tx was so much harder and i never ever thought its going to such a hard time.physical and mentaly;
i feel like my mind is broken,as iam thinking i will die soon af this disease,and when i imagine all the comlications can come along i became very scared,so scared that my quality of live is so poor.
but i still have hope that one day i will start to feel continious better a bit.
i already have some good days,but then suddenly some very bad days kick in.
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1840891_tn?1383280315
If you had that pain before tx it may very well be an auto-immune problem, triggered by the virus. I've had autoimmune problems since about three years after my presumed date of contracting the virus. Tests run early on to try to pinpoint the source of the problem were always inconclusive other than showing a very high ANA titer (often associated with Lupus). My rheumatologist concluded that it was probably a response to the HCV and that if it was then it would probably improve if I could eliminate the virus.  I had also been warned that if our theory about the HCV causing it were to be wrong, then there was a chance that the tx would make the autoimmune problems worse. It definitely didn't make them worse for me, but so far it hasn't gotten any better either.  Im still hoping, after all, I've had these problems for 27 years now so it does seem like I need to allow more than six months for recovery. I've also been thinking of putting "find a new rheumatologist" on my to-do list, as my current one seems to have lost interest in trying to resolve my problems, but I'm a little hesitant about whether I should get on that right away or wait until 1 year after tx. Plus my two most-respected physicians both agree that the rheumatologist I've been seeing for the last 15-20 years IS the best one in my area. That's frustrating to hear when you don't think they are trying hard enough!

Was your joint pain present before you started tx? At any rate, I do think it would be a good idea for you to ask about a referral to a good rheumatologist. Just try to make sure it is one who can work well with your hepatologist. Good luck and best wishes for your SVR results.
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1084115_tn?1385232189
i had before 2 years already one episode of back pain but
as I have gone to Physiotherapeut it has become better and went away.
Is it possible that my symptoms are coming from muscle wasting due cirrhosis?
Friday I will see my family doc.and ask for an referral to a specialist
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1840891_tn?1383280315
Muscle wasting due to cirrhosis would normally come very late in the game, with obvious signs of decompensation, and I don't think you are likely to be there, unless there are some really awful test results you haven't told us about. There is an informative PDF on cirrhosis at http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Cirrhosis.pdf.

I personally think you are probably just having a slower-than-average recovery from your tx, and you are suffering a lot of stress as a result. I do hope that I am right, because if I am, then you are likely to get some degree of quick relief once you get the SVR results that I am sure you will get! When do you get that 24-week test?
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1084115_tn?1385232189
thanks a lot for your answer.
I think or hope my current muscle and back pains are coming from my back as I have had some episodes of pain already a few years.
so there are no awful tests.and I hope they will never come.
I will have my appointment for a second opinion next week and I will ask them to run a pcr too,.iam now 24 weeks post tx.
my regular appointment with the doc who treated me is in 3 weeks,but as I have next wednesday this appointment at the transplant center I will ask them to check my hcv-rna.they will do some lab work anyway,with ultrasound and fibroscan etc.

to be honest,my most important issues at the moment are my life quality,I just hope to start feeling better one day.
so about the pcr result iam a bit nervous, sure.
but its not like I having sleepness nights,its my all over condition wich worrys me as I feel like crap every day.
but iam sure when I have to wait for the lab results(around 6 working days) I will get more nervous,but I think and hope I have good chances for svr,
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1840891_tn?1383280315
You are being awfully casual about your 24-week test! I think most people go in for the blood draw on the exact day, calling the doctor's office to have them phone in the lab request if necessary (okay, I admit, I think that just because that's what I did). I'm amazed that you are already at that point in time and are casually waiting until your next upcoming appointment to ask for the test. It can be good to be so calm and patient about these results IF it is because you are genuinely not worried, but I think you may be much more worried than you even realize. You kind of gave it away in an earlier post when you said you were convinced that the virus was back. I'm afraid that you are taking things slowly just to avoid confirmation of that fear, but since the odds are very, very strongly in favor of your being SVR it is counterproductive to delay the test that will probably give you good news. I think your depression is connected somehow to this fear of the virus still being there , and your pain is connected to all of it. You need to know your results! They may help with the depression and if that lifts it might help with the pain. You need to know for sure because it is an important piece of the puzzle in figuring out why you feel so crummy, and in finding a pathway to improvement. The doctors who might help you will all need to know this first too, so they can choose the most likely path to recovery. It's normal to be a little afraid of the test, fearing it might confirm your darkest suspicions. Get yourself past it,  its just another one of the obstacles to full recovery. I hope my aggressive stance doesn't offend you. If so, please forgive me.
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1084115_tn?1385232189
I was last  Friday 2t4 weeks post tx.and my doc wich treated me is out of the hospital for the next 2 weeks,so there is no change of getting a pcr done by him.
that's why next week I have the appointment in the transplant center where they will run a pcr anyway, if not I wil  ask them doing one.
so for me it really doesn't matter that much if the pcr is done 24 or 26 weeks post tx.it just matters its getting done and the result is UND or svr.
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1084115_tn?1385232189
I have to add that here in europe maybe some docs seems handle that a bit different,some say around 6 month's post tx is fine,so this can lead to 25 or 26 week post pcr.ans my doc is anyway out of the house,so no chance for getting one nowi don't want to worry about something I can't change.
but as I said already,next wednesday I meet the chief of Hepatology at a transplant center,where I will have many questions,and iam sure will have a pcr done.so in about 10 days I know I became svr or not.
but this result will mot change my physical condition in any way.
of course I will be happy when became svr,but this does not mean all my pains and symptoms will disappear.
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1084115_tn?1385232189
your post did absolutley not offend me,so everthing is o.k.i apreciate you side of view as always.i hope you understand what i mean.

when i finished treatment in november 12,and then gradually felt mor bad i really thougt my virus was back,so about the 12 week post tx pcr i was very very nervous as the result came back in negative/UND i was happy but i didnt feel better,so i knew my physical condition has/had nothing to do if i relapsed or not.
they did run another pcr 16 weeks post also and i was still UND,i was very happy again for a short time but the longer the more i had became this feeling that my liver has reached that point were no healing is possible as i still felt more and more sick,i became a nervous wrack cause i started to realize that the new meds came to late for my liver and it will be a journey to liver failure or hcc with all the suffering and complications.thats my biggest nightmare since 5 years to come truth.
this is exactly the problem.
i have no more hope for become to escape with my life,as i cradually feel more sick.
so the 24(or whatever week)will give a confirmation if the virus is back,but it will say nothing about the condition of my liver,and damge i have maybe done to with this treatment.

marc



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