Hep C Discussion Forum

skewedButNotBroken · Senior Member

RE: Hello I am new to this forum, I was dx in 1998, did pegasys, replapsed, geno 1a

Brian1412 · Guru

I respect your position, but I was where you are about a month or so ago and I felt the same way. But, once I passed where I was, I understood that I could do none of the things I needed to without being alive or healthy.

Every single door was closed to me in prgressing past the diagnosed stage. No insurance, no family support, no Dr and without any chance to try to address this bitch of a disease. I too crashed couches and almost had to go t a Shelter. I went to my COUNTY Health and human services and very quickly I had a Dr, a grant to pay for treatment which I had to fight for , I was able to begin the process utilizing the discounts or other programs for the meds. Everyone I spoke to has been very helpful and eager to help.

I also understand how hard it is for people to sometimes ask for help. Like with my time fighting cancer, I wouldnt ask anyone for help. I will never make that mistake again.

The worst thing now, after reading myself silly ( Thank you to everyone who posts here ! ) I now know I can beat this disease. Thanks again to everyone who posts the new, or upcoming availability of drugs out), , the chance to CURE is here. !!!!!!

20 some years ago, I underwrote a company who was attempting to map the entire genetic "makeup" of the human body. It made sense to me, The completion of this puts medicine kind of like the invention of the wheel. Or Fire. Out of this research has already resulted in HUGE advancement in many different areas of Medicine., including this disease we or our loved ones all face here. One day, people will be treated for this disease based on their own genetics,meaning it will be even more effective to the individual . That is mind-blowing !

I wanted to write a response to you to let you know I understand what you are feeling , and to let you know that there is hope now, and greater hope in the near future .

One other thing I want to share. 18 years ago, I was diagnosed with stage 4 testicular cancer. Back then, it was at the same place as this virus is to me now. Lost my insurance due to a Dr not writing a one sentence treatment plan , everyone abandoned me as they didn't know how to react .. I was on my own until I found a group on my newly discovered internet who was much like this site . These people gave me the things I had to know in order to be treated. Remember Testicular cancer is rare disease, in wich most Drswould never see a case in their lifetime, and maybe 5 Drs who could perform a RPLND surgery

Not long after, we went on a tandent to inform young men and the Drs the proper way to treat it. Today, instead of a death sentence, it is the most curable of ALL cancer, going from most deadly, to a 100 % cure rate.

That time for this disease is NOW or very very close to that. I strongly urge you to take Hueys advice and keep your stick on the ice.. The time for the chance to beating this nasty bug is here.

I am, and many are here to help you across the moat . Stay with us . we beat this together

Peace

R

Huey · Guru

We are all in this together, Keep your stick on the ice, Red Green show'

lizabear · Member

Thanks for all the info Rudiroo! I am already signed up for ticket to work, and I am going to voc rehab next week to the orientation, I will ask about housing.

You are awesome, we are all awesome!

I have a temporary place to stay for a few more days, I have a house sitting gig starting next month, and I picked up a new house cleaning client today.

I have food, a warm dry bed, clean clothes, an internet connection, most of my belongings in a safe dry storage facility, so every thing is very good right now.

Peace, Lizabear

RudiRoo · Senior Member

Hi Lizabear,

I'm new here too, but thought I should mention that Gilead approved me for 100% free treatment because I don't have insurance and earn less than $100,000 a year. I realize you have the medicare/medicaid but I would talk to the folks @ Gilead's support path and explain, they might find a way to help. Maybe a letter from Medicaid saying they refuse to pay? Not sure but you sound like a fighter. I agree with others that getting a biopsy or fibroscan would be a big help.

Gilead Support Path :1-855-769-7284

My son has a traumatic brain injury and is on disability. We have to budget soooooo carefully for him! He is working with vocational rehab towards getting a part-time job as a Wal-mart greeter to supplement his tiny income on SS's ticket to work program. Also the Voc rehab folks may know of some housing help for you.

Also, don't know if this is a possibility, but I found this under the roommates wanted section @ craigslist:

http://portland.craigslist.org/wsc/roo/4725302969.html

I hope you get treatment and a space of your own.

Isiscat2011 · Guru

Angel67 wrote:
Poverty just makes it all worse.

So true, and much of it is a crap shoot depending on which state you reside in, how adept your medical provider is at working within the rules to get you the coverage, etc. The Affordable Care Act helped but it isn't enough where medical and prescription costs have gotten so out of control. It is just plain wrong that the sick should have to fight so hard for medical care. Here are a couple of interesting articles concerning Medicaid Coverage:

http://www.governing.com/topics/health-human-services/gov-hepatitis-coverage-solvaldi-lawsuits.html

http://www.governing.com/news/headlines/how-some-state-medicaid-programs-limit-drugs-to-only-sickest-patients.html

Groupergetter · Guru

Welcome LB, there are many fine folks here that are compassionate, caring, and knowledgeable. You've found a great place to discuss things, get positive reinforcement, and ideas that may be helpful. It's difficult enough having to deal with this virus, let alone all you are going through. Hoping and praying this works out for you.

Josh Haynie · Senior Member

i think you know what i would say :) smirk

my sister lives in Portland...

you hang in there Liz im about to stick my foot up Medicaid and HERCS ass here in about a month or two... hope they enjoy it as much as i will :)

im on OHP

very pissed off ,,,disgusted..saddened..but especialy really &^*&^%$ing mad over insurance companys denying poor people drugs we need ...

Angel67 · Senior Member

Poverty just makes it all worse. My family are on the breadline . My wife is a student & I am out of work....the truth is I know I couldn't sustain the energy to do a days manual work. But our government have made things so hard, claiming benefits over here is so degrading, I refuse to take anything from the state (though I would welcome sovaldi!). I duck & dive, each week we somehow manage. I don't think anyone,(let alone a fifty seven year old) should be potentially homeless...especially in the richest most powerful nation on earth, the USA.

Huey · Guru

Hi Lisa, Your message struck close to home. I have came from ware you are to being a home owner and cured, well almost-cured, You need help, I had to ask my daughter at times to help me but that is the only family I had for help until my Brother came around and now he is living with me and a great benefit.

What i would do for one is get subsidized housing. If you can not do that ware you are Move. Memphis Tenn is a good place. That is ware my Older Brother was before my Bankruptcy , that is when he moved in to help me. See i could not afford to pay the Bankruptcy and the utils. I needed someone to move in with me to pay them. Someone with a check. That is one way you can get a place, Find someone who will let you pay the utils, about half of what you make should cover it. and you are no longer homeless. It is a start.

FYI- The family member that you live with can get a Earn Income Tax Credit for you because you are disabled. It will double the income tax refund.

-- Edited by Huey on Wednesday 8th of October 2014 05:14:47 PM

MzmiffY · Veteran Member

A big, warm welcome to you lizabear!

Im so pleased you have found this forum.

Your introduction has really touched me. I can very much empathise with the immediate uncertainty you are facing. I have moved more times then I care to remember.

Your attitude and resilience is inspiring.

I hope kindness and opportunity surround you in this time of need.

I wish many wonderful things for you, please keep us posted.

xx

lizabear · Member

Sorry not thinking very clearly this day.

Tig I am seeking out help with the shelters here, I am on a wait list. I have called all the social service agencies, red cross, social security etc. I am not giving up, and thank you for your ideas I do appreciate it, just wanted you to know I am being proactive in all this not just sitting on a log whining!~ biggrin

When not in crisis life is pretty good and I am a positive person. Even being poor I find happiness all over the place. I am in recovery from drugs and alcohol, I have been clean and sober since 1996. I work on myself everyday. I meditate. I do yoga. I am fullly confident that things like my living situation will improve, it is just hard somedays. I think I will be on the streets for a night or two here and there and I can do that, it is just not any fun at all. I will survive I am not a quitter.

Thank you all for letting me join this forum. YOu are doing great work.

Love Joy Peace

Lizabear

lizabear · Member

Thank you Guru.

Joy

Lizabear

lizabear · Member

Thank you Tig. I will ask about a fibro scan and get a copy of my most recent bloods, I am seeing my doc soon she is on vaca until the 20th.

Blessings

Liza

Tig · Admin

Hi Lizabear,

Welcome to the forum! I'm glad you found your way here and hope we are able to help you make some sense of things, as well as hopefully finding a few answers. As I understand it, you've been diagnosed HCV+Genotype 1a and a recent viral load of 100 million, tried unsuccessfully to treat with Peg/Riba following a biopsy in 99, that showed some fibrosis. Do you have any current lab test results that you can share? Any recent lab results will help us better understand your current circumstances.

The new drugs are far and above better than the old treatments with interferon and Ribavirin. The big qualifier for these new treatments will be your level of fibrosis. While they aren't the most pleasant of experiences, they are very accurate and required by many carriers. Have you considered an ultrasound test known as the Fibroscan? Its not the same test as your standard ultrasound, it measures liver fibrosis. I'm certain there would be a facility in Portland that can provide that test. Your Medicare would cover that cost. With a high viral load and 15 years since you were diagnosed with "some" fibrosis, you may already qualify for these new medications. It's imperative that you find out your level of fibrosis. Seems to me you need to get your current condition updated and then weigh your options with your healthcare team.

As far as your living conditions, have you considered a local shelter, even if temporarily? I would contact the state and speak with a social worker about your options. Contact all organizations like the Red Cross, etc. Social Security may be able to provide you with some contacts as well. We'll keep looking for ideas and you'll be hearing from others as well. We have a lot of caring people here, you aren't alone!

Tig

Isiscat2011 · Guru

Hi Liza:

The sad truth is that many people will be left behind in the race to "cure" people of HCV. These people will become a statistic that others cite. Don't become one of them. It is within your control.

Do whatever you have to do. Get your liver damage and your HCV related health conditions properly assessed. You may be eligibe for tx sooner than you think. It has been 15 years since your last biopsy and, given your age and other health issues, it is very likely your fibrosis has substantially increased.

Establish relationships with good medical providers and follow through. Unfortunately, communities will not be knocking at the doors of their neighbors to offer assistance, but you can get the help you need if you go after it.

Positive thinking will get you nowhere without positive actions. You can do this but only you can do it.

There are many supportive people here who understand much of what you are experiencing. I hope to see you in a better situation in the near future.

lizabear · Member

ps I did the peginterferon with ribivaron and was not able to go the full course, this was in about 1999-2000 I am not sure as that time is kinda hazy. Wow that stuff made me sooooo ill.

lizabear · Member

Hello all, my name is Liza,

This is a long long introduction, it covers more than my hepc status, I am in crisis mode right now. I apologise if this is something I should not have posted, but I am in desparate straits and need to reach out to the larger community, as I am not finding the help I need in my local community. Thank you for your compassion and understanding in this. Peace to all, Lizabear

I am on social security disability and my insurance (Medicare with Oregon Medicaid) will NOT pay for the new treatment at this time, with the new hopefully wonder drug Sovaldi, due to the cost, my treatment team says hold on for a couple more years, and we may be able to get you on it.

My only liver biop was in 1999, I had fibrosis at that time, I am not looking forward to that procedure again but it is probably time to do it again. Twice a year I get an ultrasound and I have blood work done every month or three.

My latest viral load I am above 100,000,000.

Besides being sick with this I have had other medical problems and multiple surgeries for things not related to hepc, starting in early childhood, some to correct things I was born with and some due to accidents, and some due to parental medical neglect.

I am SO sick of doctors, nurses, clinics, and focusing on my illnesses, that I sometimes just don't go into see my docs when I should. I have had over 15 surgeries in my life and battled severe depression which ended with my hospitalizations in psyche wards more than a dozen times.

I want to be well,

I am estranged from my family.

I am struggling and in dire poverty.

I am crashing at a friends and not paying rent, saving up to buy a car, but then was told I have two weeks left, the owners of the house are in a bad marriage and things are very icky here, I do not have enough money coming in to rent a place, I will be homeless in just two weeks, I have signed up for every lowincome housing place I can find, and the wait lists are ten years long. I do not own a car but I do drive. My monthly income is $720. I also get food stamps. I have medical care but no place to live. I am ill. I do not feel well. I do not know what to do.

I have tried reaching out to my family but they are not interested in helping me, plus it would not be mentally healthy probably for me to be around them.

I am reaching out to the greater hepc community because I have that disease, I am putting this out on other forums as well. I do not know what else to do. I have been unable to work full time or enough to make the bucks to even rent a room anywhere. I am in Portland Oregon right now. I I really like my docs here, and this is my home town, but there are not resources for me. I am 57 and in a lot of pain and have fatigue, some days are better than others of course!

I had a place and a section 8 certificate, I gave it up to manage a small apartment complex after going to school for property management, unfortunately that is not the job for me. I had to quit after three months. I took the risk because I convinced myself I could do the job and it would ease my budget up a bit. Even with the section8 paying most of my rent I still did not have enough money coming in to cover all of my BASIC needs. I just wanted a little extra not much.

I did not then and do not now have a tv, I don't pay cable bills, I do not go out to eat or out to starbucks, I do not go out to the movies, the only clothes I buy are from second hand shops or discount stores, I am an excellent cook and can get buy easily on a very low food budget, I go to food banks and all that kind of stuff, but that is arduous on the bus, they are too far to walk to and from. I am very good at getting by on very little and I don't really need much, but without stable housing...

My doc wants me to take an antidepressant, I say well I would rather have a place to live, it's amazing how much better I feel when I have place to live. my doc wanted to give me an anti anxiety med, wow, living on the streets might require that but I don't want any I want a place to live. I cannot even afford to rent a room by the week in one of our remaining flea bag hotels.

I am not expecting anyone here to solve my problem, I just needed to state where I am coming from, what is going on with me, what my NOW is like. My doc wants me to have less stress in my life...yeah, I want that too.

Thank you for being here and allowing me to vent.

Peace, Love, Joy to all

Lizabear

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