Are you able to work or are you collecting SSDI

[Tim Clausen]

I have stage IV Cirrhosis, complicated by severe portal hypertension and Hepatopulmonary Syndrome, Hepatic encephalopathy, among other things.   I will complete a 24 week course of Harvoni May 11.  

My gastroenterologist, transplant doc and primary doc have all told me I should not be working and should be pursuing long-term disability.  The Social Security Administration, however, has told me that I can still work and initially denied my claim.  Has anyone else had trouble being approved for benefits? How long did it take to be approved?  Did you have to go before a judge?

Thanks,

Tim

[BigDaddy_59]

HCV Advocate (run by all-around Hep C superstar Alan Franciscus!) has a specialist on Hep C and disability (Jacques Chambers) and they have a lot of good information too

Check 'em out!

http://hcvadvocate.org/eblast/eblast_May15_15.html

[AugustineMama]

I did not get denied and was awarded immediately. When you have HE it is pretty safe to say you should not work. I was also told not to drive more than 10 miles or they would pull my license. I went off on short-term and then long-term disability and the long-term forced you to file. I hate not working, but I know there is no way I could work. I just hate all this.

[fntn]

What can drive you crazy are their rigid rules that are not flexible enough to deal with variable diseases. I almost meet the ascites criteria but I'm too "healthy". Had paracentesis done twice but they were over a year apart. My MRI's, done every 3 months, do show ascites but my albumin levels are always well above the 3.0 g/dL co-requirement (usually 4.5 to 5.0). So it's been almost two years now and still in the appeals loop - a lawyer is a must.

[hepcandme]

Very helpful Hector

Thanks for the post!

[HectorSF]

I received SSDI after I was no longer able to work because of my compensated cirrhosis and ascites, HE, blood levels other symptoms and then liver cancer while awaiting my liver transplant. I applied after accumulating all of my medical records needed to prove that I met the SS blue book requirement for disability for "5.05  Chronic liver disease" and received my disability approval about 3-4 months after applying.
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5.05  Chronic liver disease,with:
http://www.ssa.gov/disability/professionals/bluebook/5.00-Digestive-Adult.htm#5_05

A. Hemorrhaging from esophageal, gastric, or ectopic varices or from portal hypertensive gastropathy, demonstrated by endoscopy, x-ray, or other appropriate medically acceptable imaging, resulting in hemodynamic instability as defined in 5.00D5, and requiring hospitalization for transfusion of at least 2 units of blood. Consider under disability for 1 year following the last documented transfusion; thereafter, evaluate the residual impairment(s).

OR

B. Ascites or hydrothorax not attributable to other causes, despite continuing treatment as prescribed, present on at least 2 evaluations at least 60 days apart within a consecutive 6-month period. Each evaluation must be documented by:

1. Paracentesis or thoracentesis; or

2. Appropriate medically acceptable imaging or physical examination and one of the following:

a. Serum albumin of 3.0 g/dL or less; or

b. International Normalized Ratio (INR) of at least 1.5.

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OR

C. Spontaneous bacterial peritonitis with peritoneal fluid containing an absolute neutrophil count of at least 250 cells/mm3.

OR

D. Hepatorenal syndrome as described in 5.00D8, with on of the following:

1. Serum creatinine elevation of at least 2 mg/dL; or

2. Oliguria with 24-hour urine output less than 500 mL; or

3. Sodium retention with urine sodium less than 10 mEq per liter.

OR

E. Hepatopulmonary syndrome as described in 5.00D9, with:

1. Arterial oxygenation (PaO2) on room air of:

a. 60 mm Hg or less, at test sites less than 3000 feet above sea level, or

b. 55 mm Hg or less, at test sites from 3000 to 6000 feet, or

c. 50 mm Hg or less, at test sites above 6000 feet; or

2. Documentation of intrapulmonary arteriovenous shunting by contrast-enhanced echocardiography or macroaggregated albumin lung perfusion scan.

OR

F. Hepatic encephalopathy as described in 5.00D10, with 1 and either 2 or 3:

1. Documentation of abnormal behavior, cognitive dysfunction, changes in mental status, or altered state of consciousness (for example, confusion, delirium, stupor, or coma), present on at least two evaluations at least 60 days apart within a consecutive 6-month period; and

2. History of transjugular intrahepatic portosystemic shunt (TIPS) or any surgical portosystemic shunt; or

3. One of the following occurring on at least two evaluations at least 60 days apart within the same consecutive 6-month period as in F1:

a. Asterixis or other fluctuating physical neurological abnormalities; or

b. Electroencephalogram (EEG) demonstrating triphasic slow wave activity; or

c. Serum albumin of 3.0 g/dL or less; or

d. International Normalized Ratio (INR) of 1.5 or greater.

OR

G. End stage liver disease with SSA CLD scores of 22 or greater calculated as described in 5.00D11. Consider under a disability from at least the date of the first score.
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In my experience you need to know exactly why you were denied disability and then appeal on that basis with documented proof proving the you meet their requirements for disability. Unfortunately once you are denied it is more time consuming and difficult to get approval. I would suggest finding help from someone who works with people applying for SS disability to help you navigate the process which is very complex and technical.

I recommend AllSup. The do SS disability representation. They helped me get my SSDI the first time. They also do SS appeal Representation.
http://www.allsup.com/allsup-representation/disability-appeal-representation

Also make sure you get letters from your doctors stating how you are disabled by your advanced cirrhosis and are unable to do any work.

Best of luck to you!
Hector

[aritzr]

as I hear it is the ss dept almost always denies your first request I guess its a way to discourage you some what try again and rember you can always get an attorney.

[hepcandme]

I'm going through this at the moment with state disability, ugh...

It reinforces my belief that those with "invisible" illnesses are constantly oppressed by those - even doctors! who think that treatment is not a big deal
My family and I joke that if you just wear a bandana, then even an invisible disease like cancer becomes real to people if they think you have lost your hair due to treatment

One of the winning factors for my doc, at least, was that having dizzy spells is not conducive to driving. I know, that sounds like a mild complaint compared to everything that you are going through but as M says, pull out all the tools in your box. You could also just make a list of all the side effects from your medications, the ones listed in the insert, highlighting the ones that you are experiencing

Good luck to you. I have worked all through treatment(s) and it adds so much to one's stress level and exacerbates the insomnia, lack of appetite and aches from the treatment

[m13m]

  I have been denied, you have right to appeal, sometimes more than one.  And you then learn what you need to be approved, at each hearing. You just keep pushing. don't give up ,just give more reasons you can not work.