slowly fading away

[Drp2502]

For a long time i was drug free. Contracted Hep-C in 1995. Told I would have a limited time to live. I went on with my life and ignored the obvious was eventually going to happen. That time has come. Landing in hospital i was put on all kinds of addictive meds. Thinking it would not matter now I allowed myself to become addicted to Methadone. Hospice care assured me that I should never be in pain.. Until they took away my meds, and told me I would have to take whatever they  wanted me on. Now even if I was addicted to Methadone and that was all I wanted then WHY NOT. For 30 years I worked hard, stayed clean raised a family etc..  Now I am dying and it is all a lie. Suffer,be in pain. That is what you are looking forward too.I have come to accept this.  I just want everyone-else to know be careful. Dont trust anyone but your self. I know I am going to die a miserable painful death of liver failure,diabetes,and organ shut down.My question is simple WHY WHY WHY????????????

[ActingBrandNew]

I dont know your full situation...only what you wrote above but from all the medical advances there is no reason you should have to die from liver disease. Even if you are at end stage liver disease...a transplant is possible. I HAD Hep C and treated it. I treated it with the old medication thats very hard on people but THERE IS NEW FDA APPROVED DRUGS that are curing people with little to no side effects and for a shorter duration. Its a combination therapy called Sovaldi (sofosbuvir) and Olysio (simeprevir). These drugs have even been found effective for people in the later stages of cirrhosis.

There has been so much in medical breakthroughs with Hep C there's no reason anybody should die from it. For many years doctors thought that Hep C was just a disease the damaged your liver but have now found out that it can cause diabetes, neuropothy, arthritis, and much more. Many medical issues are secondary to the Hep and can resolve once the Hep is eradicated. Check out the Faq sheet below.

http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Extrahepatic.pdf

I understand your feeling defeated right now but Id like to invite you to check out out Hep C forum. Its great over there. You are not alone. There are people over there curing there Hep C every day. People over there with liver cancer getting the new up to date treatments and beating this horrible disease. There are MANY others with diabetes as well in the same situation as you. A lot of people get better after they treat the Hep.

http://www.medhelp.org/forums/Hepatitis-C/show/75

In terms of the methadone...others commented on that and have given you great advice. There are others on hospice care in the Hep forum too that may give you some additional feedback.

God Bless you
___________________________________________________

To Everyone:

I just wanted to say to anybody who reads this that if you have Hep C and your doc is telling you that your liver is fine and you dont need treatment PLEASE go get a second opinion preferably from a Heptalogist...someone who treats liver disease. One that is associated with a University Hospital and who is up to date with all the new literature and studies.

You can go from a stage 1 to 4 in no time. And PLEASE dont base your livers status on your enzymes. If your doc is telling you that your enzymes are normal so your liver is fine...RUN! You need a liver biopsy, FibroSure, or FibroScan test to gauge that. You can have normal liver enzymes with a jacked up liver.

[EvolverU]

I'm so sorry to hear of your situation!

I know that you're a fighter because you achieved what many only dream of -- getting & remaining clean for 30 yrs. -- working & raising a family. I too, have long-standing Hep C & know how scary this insidious, stigmatized disease can be. My big question would be: 'Why have they taken me off? Are they claiming medical reasons? I ask because usually in terminal cases this is not a consideration -- the comfort of the patient is!

Please don't give up! I'm not sure what state you live in but would it be possible to reach out to an advocacy group &  get your family involved? Unfortunately, sometimes with nursing homes & hospice care, it's the 'squeaky wheels' that get the oil. It's important for you & your family & possibly an advocate to do the legal & medical research, visit you frequently & shake this 'institution' up a bit. It's important that the hospice Drs. & administration understand that someone is watching them, holding them accountable & cares when it comes to you. Here's a link about patient rights & pain management in Hospice care to start you off:

http://www.hospicepatients.org/hospic29.html

You have every right to live in dignity & peace. Please know that you're not alone here. Thank you posting this. I Wish you only the best & send a prayer your way.

[kellygirll]

i thought hospice was for comfort measures to keep the pt comfortable? that is so not right to make you suffer i know hospice in my state gives comfort measures to pts my mom worked for them and never had any stories like that she also has hep c and has been clean for 25 years and hers is undetectable she took this trial drug she was laid up and very sick for 9 months had to quit her job and go on disability but she is all better now the virus load is undetectable you need someone to advocate for you you have rights as a patient and should not be suffering needlessly!! do you have anyone to help you? any resources? anyone to fight for you? thats is what you need

[10356]

Hello DRP Welcome to the forum. I'm very sorry to read that you have reached the end of your life My heart goes out too you and your family. I do not understand why Hospice took away your Methadone if that was working for you and this is your desire.. I do know I have worked with hospice before and we had to argue to get the right Amount of meds delivered for comfort for my Mother.. I too have Hep C, for 3 decades and I'm on Dialysis. We are in the process of figuring out the best way to fight the Hep C, I'm terrified. I thought I would share for you are not alone. We all have battles we are fighting I'm just glad you found a place to voice yours..  My heart goes out for your suffering and pain. lesa

[Amandag78]

Hi, i too am so sorry to hear. Not its definantly not fair at all.
Ive had hepatitis C for around 16 years and just found out last week, mine is non-active.
We will of coarse give you all the support you need and help you where we can.
Again, im so, so sorry, this is a terrible thing.

[Pantx]

That is not right, and I do not even think it is legal. PM me when you have a moment I'm not sure if I can help you it depends on what state you are in. Who cares what your history is if you are terminal you should not have to suffer while terminal. That is inhuman and unjust.

[VICourageous]

I am so sorry to hear this..I am going to send a PM (private message) to someone I know who had Hep for many Years and he is cured. You should keep checking your post because MANY on here have it, or are working on a cure. Again! I am so sorry..Prayers to YOU!
We also have a Hep Community on here.