Im confused and in pain

[cricket180]

Hi I have been diagnosed with Hep C and I was told today I may  have liver cancer. My prob is I have so many health issues and I stay in constant pain I have vasculitis from the hep c that gets so painful I want to lay down on a train track and I cant get any of the doctors  to listen to me. I used to fish and camp and work and sweat like a dock worker now I get to tired just sweeping the floor some days are ok but others I cant even get out of bed without help.
I feel like a burden to my family because they just dont understand how much my mind is telling me to take my life and end it but my heart tells me I would be a sorry  person to do this to my family . I dont mind dying I just fear a painful death. I used to do home heath care so I was around death all the time, but it was the poor people I sat with and held their hand when they died ( the ones that were in so much pain) just devistated me. My question  has any ones doctor put them on any kind of pain meds to help them through the treatment? so far I have read mostly horror stories of the pain  and suffering they  have had to go through. I thank anyone who could help me decide what to do.
thanks  Cricket

[zackskyler]

guess you cant give e mail thats a good thing i guess so pm me to chat please

[zackskyler]

I also have multi-health issues that are confonding and overwhelming your story has truly struck close to my heart I truly feel for you in the last 2 years I have been in and out of the hospitals and treatments for my various problems, which include hep c, cirossis,copd,advanced emphysema,chronic pancrititus, have been treated for pancrittitus 11 times and they finnaly removed my gallblader but all of this has left my pancreas extremely scared, they are disscusing removal of a large partion which will leave me a dibaetic most likely. But alas all these problems are very painful worst part is I also have depression...gee big shocker there huh?.. so treatment as of now is out of the question , probelm with hep c is a major stigma "hep c?" """caution"""" drug addict ahead it ***** but alas it is there my advice stems from my own experiences be honest be open ......AND BELIVE THAT SOMEONE SOMEWHERE IS ALOT WORSE THAN YOURSELF.... prob hear that alot huh?...ever take it to heart?  I am not a preacher I am a sufferer such as yourself but I have learned the hard way to remain positive.....I am not religious per say but I do belive in god ...do you ?...... I would love to chat with you my fellow sufferer ...misery loves company....lol sometimes you gotta laugh cuz the tears would flood your neighbors homes and you sure dont need a lawsuit on your hands..lol smile you have people like you who want to help you reaching out to them is the first step .....I may not spell all that great but my heart went into this note as I do not write to my family let alone strangers so if you need a friend send me a message or e mail me @ ***@****   take care and keep your chin up it makes a target for smiling ......zackskyler

[justme53]

My AFP was elevated after my dx and I was told that treatment was not an option until they had ruled out the possibility of liver cancer (HCC). Standard protocol. Have they scheduled you for a followup with an ultrasound or MRI?

AFP's can be elevated for several reasons, only one being cancer. I would elimiate that as a potential problem, then with the guidance of a knowledgeable hepatologist plan your next strategy.

I agree with what NYgirl said about how familes will rally to the cause. I would only add....if we let them. I am good at pushing people away when I am scared or ill and am learning that I need to be more open about my wants and needs. Most people want to help, just don't know how to go about it. Most people deal better with the facts than letting thier minds fill in the blanks in all sorts of interesting ways. :-)

Best of luck to you and my wishes that you find a doctor that will work to address all the medical issues you are dealing with.

Pam

[nygirl7]

HepC and HCV are drastically different situations first off I would make sure I did have HCV - if this doc isn't going to help you you NEED to find one who will, who will handle each issue.  Unfortunately depressive mental condition is one of the disqualifiers for doing the current treatment of interferon and ribavirin - you need to get that under control in order (if possible to do treatment) but first you need to find out about the HCV - that is MUCH more important.

Please...seek out a doctor who is qualified to take excellent care of you.  You deserve that treatment and if the doctor you have right now isn't willing to listen or help - you do need to find one who will.

Regarding your family - you would be surprised how much families are willing to go through because they love you, don't assume that it would be a 'burden' on them I am sure they would do anything they can to help you because they love you.

Good luck.

[Megan5515]

"gets so painful I want to lay down on a train track and I cant get any of the doctors  to listen to me."

Unfortunately, much of this sounds familiar to me.  I too have hepatitis C with possible liver cancer (the doctors can't figure out what my rising and falling alpha fetoproteins mean), with migratory arthralgia/vasculitis/muscle pain (that the doctors are unable to pinpoint), Crohn's disease, type 2 diabetes, hypothyroidism.  I have intermittent pain and such extreme fatigue that it prevents me from doing my job.  Since October of 2007, I have only worked for like 2 months and now I have been out again for a month.

I take Darvocet for the joint pain, and it seems to help a bit.  I doesn' t alleviate the pain entirely, but I definitely makes it easier to deal with.  They have also had me on an antideppressant (Cymbalta) for about 2 years now.  I still get depressed and have suicidal thoughts as you do.  I don't necessarily want to hurt myself, I just want to be comfortable and not in pain.

I do not think doctors realize what an impact hep c can have on our lives.  They do not seem as concerned as they should be when we feel terrible.  I think it may be time to see new doctors (although I've had several second opinions), and it may be time for you to see a new psychiatrist who can regulate medications better.

As far as treatment goes, I was planning on starting again in a few months.  I've treated unsucessfully 3 times.  However, due to the recent increase in pain and fatigue again, I've decided not to treat until I feel a little better to begin with.  I can't imagine treating when you already feel so bad, especially since my doctor mentioned that treatment can make the pain worse.

I hope this helped maybe a little, and I wish you all the best.  

[Megan5515]

"gets so painful I want to lay down on a train track and I cant get any of the doctors  to listen to me."

Unfortunately, much of this sounds familiar to me.  I too have hepatitis C with possible liver cancer (the doctors can't figure out what my rising and falling alpha fetoproteins mean), with migratory arthralgia/vasculitis/muscle pain (that the doctors are unable to pinpoint), Crohn's disease, type 2 diabetes, hypothyroidism.  I have intermittent pain and such extreme fatigue that it prevents me from doing my job.  Since October of 2007, I have only worked for like 2 months and now I have been out again for a month.

I take Darvocet for the joint pain, and it seems to help a bit.  I doesn' t alleviate the pain entirely, but I definitely makes it easier to deal with.  They have also had me on an antideppressant (Cymbalta) for about 2 years now.  I still get depressed and have suicidal thoughts as you do.  I don't necessarily want to hurt myself, I just want to be comfortable and not in pain.

I do not think doctors realize what an impact hep c can have on our lives.  They do not seem as concerned as they should be when we feel terrible.  I think it may be time to see new doctors (although I've had several second opinions), and it may be time for you to see a new psychiatrist who can regulate medications better.

As far as treatment goes, I was planning on starting again in a few months.  I've treated unsucessfully 3 times.  However, due to the recent increase in pain and fatigue again, I've decided not to treat until I feel a little better to begin with.  I can't imagine treating when you already feel so bad, especially since my doctor mentioned that treatment can make the pain worse.

I hope this helped maybe a little, and I wish you all the best.  

[cricket180]

Thanks so much but ive been on anti-depressants and anti-psychotic meds for 10 years and they change them about every year nothing has worked so far... and this  has just sent me to the edge of the cliff, I have RA, Copd,lymphodema,type2 diabetes,high blood pressure, IBS,vasculitis, Hepc  and now this, all in 2 years I was misdiagnosed with ( of all things ) ceader tree fever allergy.  My Psycho doctors attitude is LETS UP YOUR DOSAGE!!!! and were gonna add this and see how it works. Its  all I can do  to just not throw my hands in the air and give up. thank you  for your advice  maybe I should  toss a coin...
thank you
Cricket

[Trinity4]

Seek out a good hepatologist for your hepc and take it from there.  He may recommend you see a pain management group as well as psychiatrist or psychologist  for your depression and suicidal thoughts.  There are excellent anti-depressants and antipsychotic medications available.  Most doctors will not start you on treatment if you are in severe emotional distress.  There are no magic pills to eliminate the all the suffering associated with treatment but there are ways to minimize it. Most people are NOT on pain medications when treating.  You can't assume you will be one of those who falls into the horror story category.  Those people are the exception. You do have some issues you need to address prior to considering treatment.  I hope you can resolve them and are able to treat as comfortably as possible.  It's not easy but we do it everyday and manage to live productive lives.
Good Luck
Trinity