PSX Diagnosis - Eligible for State Disability?

[Guest guest]

so sorry about your son, your husband and your brother. i have been on social security disability for going on 3 years now. i am not on a transplant list, as they say it is too early for transplant for me, though because of the fatigue, multiple ercps and sleep reversal i am unable to work. your husband will surely qualify also. i hope all those who are disabled will take advantage of our benefits. we paid into them and now is the time that we need them.

pam dx 2001See what's free at AOL.com.

[Guest guest]

When my brother was diagnosed with his Glioblastoma Grade IV brain tumor at 34 years old, he was eligible to receive disability income through Social Security. Has anyone been unable to work due to PSC and also received disability income through Social Security? My husband was diagnosed in 1994 and is now 42, stage 2 liver failure and has triggered type 2 diabetes. Does this sound like a common path others have followed on disease progression? He also has been experiencing (more and more) his arms falling asleep during the night (one or both) along with fatigue. He is on max dose of Ursodiol, stopped taking prednisone, but continues to experience on again/off again ankle pain but not due to any injury. The pain is severe enough that he cannot walk on it. Then it goes away after about 2 weeks only to reoccur suddenly. I have read enough to know that the serious complications are, of course,

itching, ascites, fatigue, jaundice but he has none of that. Most of the reading I have done says 10-13 years for liver failure / transplant. We are right in there if those are true. Anyone gone longer than the statistics and how long after hitting these symptoms until liver failure progressed? Sorry for all the random questions. Our 8 year old son drowned suddenly last summer and we are trying to prepare ourselves as much as possible for what we know is our path in the future with PSC. Thank you for everyone's compassion and words of wisdom. Husband Tom dx 1994, stage 2, diabetes

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[Guest guest]

Thank you so much - very encouraging to hear you went so many years before transplant. We just recently were connected with and did initial physical exam with transplant team at University of Washington Medical Center in Seattle, WA. cmp12305@... wrote: PSC does make one eligible for disability payments as it progresses. I received it for

18 mo. before my transplant. It also makes financing a tx easier once you become eligible for medicare. I went 21 years from diagnosis to transplant. Others need a new liver sooner. If you have established care with a transplant team, they will have a social worker to help you with disability and other questions. If you have not hooked up with the team, your other doctors should be able to help you get in touch with one or with a person with the knowledge you need. Take Care MizKit See what's free at AOL.com.

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[Guest guest]

Pam, Thank you for sharing - glad to know that the fatigue etc, is sufficient to enable the support. Hard when he doesnt' "look" ill but is so tired all the time. I agree - our benefits to use but appropriately timed. (wife to Tom, PSC dx 1993)noneenator@... wrote: so sorry about your son, your husband and your brother. i have been on social security disability for going on 3

years now. i am not on a transplant list, as they say it is too early for transplant for me, though because of the fatigue, multiple ercps and sleep reversal i am unable to work. your husband will surely qualify also. i hope all those who are disabled will take advantage of our benefits. we paid into them and now is the time that we need them. pam dx 2001 See what's free at AOL.com.

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[Guest guest]

Mattich wrote:

>

> ..... Has anyone been unable to work due to PSC and also

> received disability income through Social Security?

>

I was granted disability in 1998 due to my Crohn's Disease. The day I

got the notice (in 2001) that they were going to review my case to see

if I should continue receiving disability was the same day I got my PSC

diagnosis! Talk about timing!!

My date of disability is actually in 1992, though. I kept hoping that I

would get better and be able to return to normal that I refused to face

facts. Only when my family dr. insisted that I should file for it did I

accept the situation. And he was absolutely right!

Regards,

Carolyn B. in SC