I have been having trouble with fatigue since 2004, by 2009 it was seriously affecting my ability to be a welder anymore. I got to the point where I couldn't work a 40 hour week anymore, and even finding a 40 hour job as a welder is next to impossible, they all want you to work at least 60.
So, I filed for SSDI, but apparently HCV is asymptomatic, until you have to be hospitalized for ascites or varices or cancer. Until then you are SOL.
Anyway, I tried to go back to work after they denied me, but it didn't work out, I had 5 or 6 jobs that I had to quit after 2 or 3 days, too fatigued to continue. I ended up making a grand total of $13k that year. By the end of 2010 it had become so bad that I just gave up, and gradually sold off all the nice toys and stuff I had collected over the last 30 years.
Then I tried to go to truck driving school, thought that might be an easier profession, I couldn't even make it through a full week of classroom time before I had to quit again.
So, when I got in the Gilead trial I decided I better try to apply again, apparently I'm still not disabled enough, denied again today.
Pshaw, some days it was all I could do to shuffle from the bed to the TV watching chair, but I'm not disabled, I guess I need to buck and get a job.
Is there anybody here that has managed to qualify for SSDI?
I know next to nothing about SSDI.
I also don't know the state of your liver but the fatigue your describe makes me wonder about it.
Have you ever addressed SSI from a diseased liver point of view rather than a Hep C one? Having the disease Hep C in and of itself might not be grounds for SSDI but there has to be a degree of liver damage that certainly would. If you could demonstrate that damage through medical reports and doctors' statements you might have a better outcome.
Yes, I have been on SSDI for 1 1/2 years now and probably will be for another couple of years.
As I have mentioned before (you might want to refer back to my previous post) in order to qualify for SSDI you have to PROVE that you are totally disabled and will be for more than 12 months in the future and can no longer perform ANY job in the US economy.
Having Hepatitis C is not a disease that is listed in the SS Blue book as a disease that is a disability.
"until you have to be hospitalized for ascites or varices or cancer" While not entirely accurate, yes you have to have on a ongoing basis the complications of End-Stage Liver Disease, a few that you listed.
The only way of qualifying for SSDI as far as hepatitis C is concerned is by proving that the resulting liver disease has disabled you. Again you must have medical records proving this. Blood levels, scans, life-threaten incidents. All the requirements for chronic liver disease that are listed in the SSA "Blue Book".
Also as a side note. Most people that apply for SSDI are denied. I forget the exact percentage maybe 70-80% so even if a person has decompensated cirrhosis, for example, you have to have the diagnostic tests and doctors notes proving that you are totally disabled and will be for at least a year.
From the Social Security Administration:
"Definition of Disability
For all individuals applying for disability benefits under title II, and for adults applying under title XVI, the definition of disability is the same. The law defines disability as the inability to engage in any substantial gainful activity (SGA) by reason of any medically determinable physical or mental impairment(s) which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months.
Q. How is the disability determination made?
A. SSA’s regulations provide for disability evaluation under a procedure known as the "sequential evaluation process." For adults, this process requires sequential review of the claimant's current work activity, the severity of his or her impairment(s), a determination of whether his or her impairment(s) meets or medically equals a listing, the claimant's residual functional capacity, his or her past work, and his or her age, education, and work experience."
What kinds of disorders do we consider in the digestive system? Disorders of the digestive system include gastrointestinal hemorrhage, hepatic (liver) dysfunction, inflammatory bowel disease, short bowel syndrome, and malnutrition. They may also lead to complications, such as obstruction, or be accompanied by manifestations in other body systems.
What documentation do we need? We need a record of your medical evidence, including clinical and laboratory findings. The documentation should include appropriate medically acceptable imaging studies and reports of endoscopy, operations, and pathology, as appropriate to each listing, to document the severity and duration of your digestive disorder. Medically acceptable imaging includes, but is not limited to, x-ray imaging, sonography, computerized axial tomography (CAT scan), magnetic resonance imaging (MRI), and radionuclide scans. Appropriate means that the technique used is the proper one to support the evaluation and diagnosis of the disorder. The findings required by these listings must occur within the period we are considering in connection with your application or continuing disability review.
Here is a link to the SSA Blue Book requirements for "Chronic Liver disease". This explains that exact requirement needed to be determined to be disabled by your liver disease which resulted from hepatitis C.
Disability Evaluation Under Social Security
(Blue Book- September 2008)
I tend to refer people I know to a Non-Profit Org I know about. It has lawyers that help poor people. This particular org, mainly works for Homeless people, but also takes people who are poor, (like myself)
You should look in your area, maybe they have something similar. This particular office does specialize in getting disabled people their SSI or SSDI.
This Law Office has a specific Doctor that they use, and they deal with the SSI office, for their clients. If this route is not taken, it can be very difficult to get SSDI, andmost people I have heard of, are turned down as many as 3 times.
Make sure to keep all your labs, to send in, as proof, and see if the Trial Doctor can also write out documentation about your fatigue. Also, keep trying to get it, they expect people to do this, unfortunately.
You can go into your local SSI office, and ask to speak with their supervisor, as well. The squeeky wheel gets the grease.
Other people I know had to apply for General Assistance first, and since you sold your toys, that will help you to get G.A. Then, when your SSDI comes thru, they will deduct what you owe, and this helps get the ball rolling.
Make sure to look for Non-Profit agencies that help with this stuff, there are many good-hearted people in the Helping Professions
Thanks for the replies everyone. I suppose they don't want to consider fatigue a disability because they would have to give it to all 4 million of us, then.
I gave them the trial clinic for a reference but I don't know how much info they gave them, it's all pretty secretive, I couldn't even get copies of my labs from them, but I did get the biopsy report which I gave to the SS, but I guess I'm not far enough along.
I suppose I'll appeal, and in the meantime hope the treatment keeps working, maybe this fatigue will go away eventually, I do seem to be getting stronger.
I'm sorry, but I'm a bit busy usually, when I make these posts, so I cant remember if you mentioned what Stage you are at, in your biopsy?
But I have a nifty little hint that may help: When I took the FibroSure test, it had me at 0.77, which was considered Stage 4 Fibrosis.
Then I went and had a biopsy, and I was Stage 2 fibrosis. I also noticed a few other people on here, from the Trials (where they tend to use the FibroSure, cuz it's a cheaper test, then a bx) that had the same stats.
So..you may want to try getting a FibroSure test, if you are in the U.S., it is considered a valid test.
I kind of decided I was somewhere in between~
You have to be very persistant with the SSI office. I have heard of lots of people being turned down 3 times, and gettingit onthe 4th appeal, unless they use a Lawyer, that specializes in getting people their SSI or SSDI
Also, are you on any anti-depressants? Itis sometimes actually easier to get, for Clinical Depression, then for physical ailments. Andlets just faceit, what you have experienced and are still experiencing is traumatic and depressing, also, the Hep C causes depresion in lots of us, it crosses the brain barrier.
I hope you get rid of the fatigue also. I know they warn women not to get pregnant for at least 6 months after treatment, so that goes to show you long these meds stay inour systems.
You paid taxes for many years, for this reason. That is why you deserve to have your Disability, until you feel better
Good luck my doctor didn't even want to write a letter for me to use my own sick time.
Even my Hep C doctor acted iike I was not that bad off unitl I passed out in his office and they had to send me to the hospital emergency room.
I was forced to retire. I think if they had supported me I would have made a smoother transition. I also would not have lost lots of money in sick time.
I had nearly a year in my bank when I retired.
I will never forget how poorly my internest treated me and as soon as
I finish this treatment I will have a new doctor. He finallly gave me a letter,
but I left sooner than I would have had I had a little support. By the time he ae me the letter I was beyond being able to deal with the stress.
Unfortunatley, my Hep C doctor is noted in this area for his knowledge of Hep C . So he's a keeper and I'll keep my thoughts to myself.
We have to put up with lots to get through tx.
I wish you the best and don't give up too soon. That's what I did, but I also
care for 2 elderly parents. I couldn't take anymore. I was catching on all sides.
Oh, sorry, correction on my last post, I meant the FibroSure test had me as Stage 4 Cirrhosis. So that is the paper-work I used, when I got my Procrit.
I also do Elderly/Disabled Care,but it doesn't pay much.
If you are interested in working part time, there are many Elderly and Disabled people out there, looking for help, so they can stay in their homes, and dont have to go to Nursng Homes
Not sure if you are doing this on your own but that is what it sound like.
Maybe BoceprevirGal has sent you off some info on that group and help with an assistant.
The way it usually works is that you work with your welfare office and they even have a list of assistants (they usually are not lawyers) who do so much to help you get the forms and doc reports and tell you how to act and what to do etc etc etc. The people in the welfare office are not suppose to suggest anyone on the list but mine did and he was a gem having worked with HepC folk before.
I certainly did win my case and it was mostly on FATIGUE! That was in the report by the Judge. If you prove that you can not work 40 hours a week then you are disabled and will get disability. That is the law.
If you cannot afford all this medical care then you first should be on medicare as you should be seeing a psych, therapist, etc... It all helps.
The best advice my assistant gave me was: When your doc/nurse ask "How are you today?" You should start reading off you list of complaints! *Meaning NEVER say "Fine! Thanks".
It took me a long time to get it but welfare gave a bit of cash (which I had to pay back) but the assistant was a godsend.
Hey, Frank,this is great advise, and I did not know this! I was unable to tell him about my friends' agency, that does this, because I am in Oakland, Ca, and his profile has him in Texas~
I hope AKHepper checks this out, and will send him a note, to check this~
I also haveother friends with Hep C,who can use this advise~
p.s. forgot to mention that ANY lawyer/assistant cannot legally be paid until you win! and they can only get a percentage of your winnings up to a max amount and not a penny more. It is all written up and very clear. If anyone tries to get any money upfront WALK AWAY!!!
I hope I could help BoceprevirGal. Oh, and I won after being "cured".
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