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Hello to the group. I'm not a new member, as I joioned back in fall of 2006

shortly after my husband Dana was diagnosed with UC and PSC. We recently moved

to a very rural area where it takes 6-8 weeks just to see our

Primary care doc. This is our first appointment since moving here. Anyway, these

are my concerns. Dana seems to be getting more jaundiced looking since starting

back to work in the auto paint industry after not working for 6 months due to a

layoff in another state. Are there any other members in the group in this line

of work or exposed to paint and thinner chemicals?

Also, I'm concerned that we will find his disease progressing more quickly at

this point. I can take him to an ER 2 hours away and have him seen by the only

nepheologist within 200 miles if need be and this will be the same doctor we are

getting a referral to. I have medical benefits through my job but he is only

covered by life and health insurance. He does not have any benefits at work and

makes twice the income I do. Does anyone know of a way to buy short term and/or

long term disability insurance once someone has been diagnosed with these

diseases? Does anyone know more about the social security disability process

enough to tell me how to get benefits sooner rather than later should he become

unable to work? Are we any closer to finding a cure? I am feeling quite panicky

most days now and terrified of dealing with this. In fact, most of the time I

can't read the group emails because it makes me think too much about what could

happen. It seems easier to take it one day at a time. It doesn't make it easier

that I work for a company in their short term disability clerical dept. Any info

you can provide would be helpful. Thanks for reading my long email.

Sent via BlackBerry from T-Mobile

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My company offered long-term care insurance at one point, but I stupidly did not

jump on it due to the cost, and now the window of opportunity has passed and I

cannot get long-term care insurance any more.

Your husband's PSC can progress quickly or slowly, or fast and then slow

down....it is so differnt from person to person.

The only thing I have to rely on is my health insurance thru work, other than

that, I would have to get medicaid, but would have to wait for 2 years to get

it, and I can't afford to since I am on the transplant list already.

Others will give you more information. I used to work in an insurance benefits

dept where I used to work, so I kind of know the pitfalls of trying to get

insurance and skirting around the questions you know you will be asked that

disqualify you.

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My company offered long-term care insurance at one point, but I stupidly did not

jump on it due to the cost, and now the window of opportunity has passed and I

cannot get long-term care insurance any more.

Your husband's PSC can progress quickly or slowly, or fast and then slow

down....it is so differnt from person to person.

The only thing I have to rely on is my health insurance thru work, other than

that, I would have to get medicaid, but would have to wait for 2 years to get

it, and I can't afford to since I am on the transplant list already.

Others will give you more information. I used to work in an insurance benefits

dept where I used to work, so I kind of know the pitfalls of trying to get

insurance and skirting around the questions you know you will be asked that

disqualify you.

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My company offered long-term care insurance at one point, but I stupidly did not

jump on it due to the cost, and now the window of opportunity has passed and I

cannot get long-term care insurance any more.

Your husband's PSC can progress quickly or slowly, or fast and then slow

down....it is so differnt from person to person.

The only thing I have to rely on is my health insurance thru work, other than

that, I would have to get medicaid, but would have to wait for 2 years to get

it, and I can't afford to since I am on the transplant list already.

Others will give you more information. I used to work in an insurance benefits

dept where I used to work, so I kind of know the pitfalls of trying to get

insurance and skirting around the questions you know you will be asked that

disqualify you.

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Tammy,

I can’t speak to the paint and

thinner chemicals, but I can give some info on the others.

When was the last time your husband had

labs? It sounds like his biliruben is high if he is jaundiced. I

would recommend Labs as soon as possible to determine if symptoms are becoming

acute. He may need medical attention to get the biliruben back to normal.

As far as disability insurance, I was able

to buy it from my local agent after I had been diagnosed with both PSC and

UC. I did this on two separate occasions after changing jobs. At

the time I was in my late 40’s or early 50’s. It is strange,

but I was not insurable for life insurance.

As far as social security disability, I

recommend getting the advice of an attorney. I am appealing my rejection

now. My attorney told me to document everything. Keep copies of

your medical records, and highlight everything so that you lead the

adjudicators to the meat of the illness and disability. I am 59 years old

and have been in one type of work for the last 15 years. That puts me in

a better position that some; however, my job is an office job. That makes

it a little more difficult to get disability. I suggest you read the

rules on the Internet regarding SSD. Each state has a backlog. You

can see how long it would take to process an application. The only way

you get to jump ahead in the line – according to my attorney – is if

your house is ready for foreclosure. I know two other people who had claims

for SSD – one a heart transplant patient – and it took them over

two years to finally get the approval. It is a painful and slow

process. I know some have gotten it on the first try, but that would

still take 90 days or longer.

I am 19 months post transplant. I was

diagnosed with PSC & UC in 1990. I had 17 normal years before my

health went downhill fast. I did not have the fatigue that most have with

PSC; however, I have it now post-transplant. Otherwise, I feel great and

live a fairly normal life with just a couple of minor restrictions.

From:

[mailto: ] On

Behalf Of tammylsomers@...

Dana

seems to be getting more jaundiced looking since starting back to work in the

auto paint industry after not working for 6 months due to a layoff in another

state. Are there any other members in the group in this line of work or exposed

to paint and thinner chemicals?

Does

anyone know of a way to buy short term and/or long term disability insurance

once someone has been diagnosed with these diseases? Does anyone know more

about the social security disability process enough to tell me how to get

benefits sooner rather than later should he become unable to work?

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Tammy,

I can’t speak to the paint and

thinner chemicals, but I can give some info on the others.

When was the last time your husband had

labs? It sounds like his biliruben is high if he is jaundiced. I

would recommend Labs as soon as possible to determine if symptoms are becoming

acute. He may need medical attention to get the biliruben back to normal.

As far as disability insurance, I was able

to buy it from my local agent after I had been diagnosed with both PSC and

UC. I did this on two separate occasions after changing jobs. At

the time I was in my late 40’s or early 50’s. It is strange,

but I was not insurable for life insurance.

As far as social security disability, I

recommend getting the advice of an attorney. I am appealing my rejection

now. My attorney told me to document everything. Keep copies of

your medical records, and highlight everything so that you lead the

adjudicators to the meat of the illness and disability. I am 59 years old

and have been in one type of work for the last 15 years. That puts me in

a better position that some; however, my job is an office job. That makes

it a little more difficult to get disability. I suggest you read the

rules on the Internet regarding SSD. Each state has a backlog. You

can see how long it would take to process an application. The only way

you get to jump ahead in the line – according to my attorney – is if

your house is ready for foreclosure. I know two other people who had claims

for SSD – one a heart transplant patient – and it took them over

two years to finally get the approval. It is a painful and slow

process. I know some have gotten it on the first try, but that would

still take 90 days or longer.

I am 19 months post transplant. I was

diagnosed with PSC & UC in 1990. I had 17 normal years before my

health went downhill fast. I did not have the fatigue that most have with

PSC; however, I have it now post-transplant. Otherwise, I feel great and

live a fairly normal life with just a couple of minor restrictions.

From:

[mailto: ] On

Behalf Of tammylsomers@...

Dana

seems to be getting more jaundiced looking since starting back to work in the

auto paint industry after not working for 6 months due to a layoff in another

state. Are there any other members in the group in this line of work or exposed

to paint and thinner chemicals?

Does

anyone know of a way to buy short term and/or long term disability insurance

once someone has been diagnosed with these diseases? Does anyone know more

about the social security disability process enough to tell me how to get

benefits sooner rather than later should he become unable to work?

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Share on other sites

Tammy,

I can’t speak to the paint and

thinner chemicals, but I can give some info on the others.

When was the last time your husband had

labs? It sounds like his biliruben is high if he is jaundiced. I

would recommend Labs as soon as possible to determine if symptoms are becoming

acute. He may need medical attention to get the biliruben back to normal.

As far as disability insurance, I was able

to buy it from my local agent after I had been diagnosed with both PSC and

UC. I did this on two separate occasions after changing jobs. At

the time I was in my late 40’s or early 50’s. It is strange,

but I was not insurable for life insurance.

As far as social security disability, I

recommend getting the advice of an attorney. I am appealing my rejection

now. My attorney told me to document everything. Keep copies of

your medical records, and highlight everything so that you lead the

adjudicators to the meat of the illness and disability. I am 59 years old

and have been in one type of work for the last 15 years. That puts me in

a better position that some; however, my job is an office job. That makes

it a little more difficult to get disability. I suggest you read the

rules on the Internet regarding SSD. Each state has a backlog. You

can see how long it would take to process an application. The only way

you get to jump ahead in the line – according to my attorney – is if

your house is ready for foreclosure. I know two other people who had claims

for SSD – one a heart transplant patient – and it took them over

two years to finally get the approval. It is a painful and slow

process. I know some have gotten it on the first try, but that would

still take 90 days or longer.

I am 19 months post transplant. I was

diagnosed with PSC & UC in 1990. I had 17 normal years before my

health went downhill fast. I did not have the fatigue that most have with

PSC; however, I have it now post-transplant. Otherwise, I feel great and

live a fairly normal life with just a couple of minor restrictions.

From:

[mailto: ] On

Behalf Of tammylsomers@...

Dana

seems to be getting more jaundiced looking since starting back to work in the

auto paint industry after not working for 6 months due to a layoff in another

state. Are there any other members in the group in this line of work or exposed

to paint and thinner chemicals?

Does

anyone know of a way to buy short term and/or long term disability insurance

once someone has been diagnosed with these diseases? Does anyone know more

about the social security disability process enough to tell me how to get

benefits sooner rather than later should he become unable to work?

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Tammy

My husband can get insurance for anything except life insurance and

believe me we tried as we have three young kids and a farm. I think

your husband should be able to get short or long term. It might take

many phone calls and time but should find someone to work thru it

with you. My husband is thru aflac, but not sure what he all has, I

know he has cancer ins. and a couple others.

skomula

>

> Tammy,

>

>

>

> I can't speak to the paint and thinner chemicals, but I can give

some info

> on the others.

>

>

>

> When was the last time your husband had labs? It sounds like his

biliruben

> is high if he is jaundiced. I would recommend Labs as soon as

possible to

> determine if symptoms are becoming acute. He may need medical

attention to

> get the biliruben back to normal.

>

>

>

> As far as disability insurance, I was able to buy it from my local

agent

> after I had been diagnosed with both PSC and UC. I did this on two

separate

> occasions after changing jobs. At the time I was in my late 40's

or early

> 50's. It is strange, but I was not insurable for life insurance.

>

>

>

> As far as social security disability, I recommend getting the

advice of an

> attorney. I am appealing my rejection now. My attorney told me to

document

> everything. Keep copies of your medical records, and highlight

everything

> so that you lead the adjudicators to the meat of the illness and

disability.

> I am 59 years old and have been in one type of work for the last 15

years.

> That puts me in a better position that some; however, my job is an

office

> job. That makes it a little more difficult to get disability. I

suggest

> you read the rules on the Internet regarding SSD. Each state has a

backlog.

> You can see how long it would take to process an application. The

only way

> you get to jump ahead in the line - according to my attorney - is

if your

> house is ready for foreclosure. I know two other people who had

claims for

> SSD - one a heart transplant patient - and it took them over two

years to

> finally get the approval. It is a painful and slow process. I

know some

> have gotten it on the first try, but that would still take 90 days

or

> longer.

>

>

>

> I am 19 months post transplant. I was diagnosed with PSC & UC in

1990. I

> had 17 normal years before my health went downhill fast. I did not

have the

> fatigue that most have with PSC; however, I have it now post-

transplant.

> Otherwise, I feel great and live a fairly normal life with just a

couple of

> minor restrictions.

>

>

>

>

>

> _____

>

> From: [mailto:psc-

support ] On

> Behalf Of tammylsomers@...

>

> Dana seems to be getting more jaundiced looking since starting back

to work

> in the auto paint industry after not working for 6 months due to a

layoff in

> another state. Are there any other members in the group in this

line of work

> or exposed to paint and thinner chemicals?

>

>

>

> Does anyone know of a way to buy short term and/or long term

disability

> insurance once someone has been diagnosed with these diseases? Does

anyone

> know more about the social security disability process enough to

tell me how

> to get benefits sooner rather than later should he become unable to

work?

>

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Tammy

My husband can get insurance for anything except life insurance and

believe me we tried as we have three young kids and a farm. I think

your husband should be able to get short or long term. It might take

many phone calls and time but should find someone to work thru it

with you. My husband is thru aflac, but not sure what he all has, I

know he has cancer ins. and a couple others.

skomula

>

> Tammy,

>

>

>

> I can't speak to the paint and thinner chemicals, but I can give

some info

> on the others.

>

>

>

> When was the last time your husband had labs? It sounds like his

biliruben

> is high if he is jaundiced. I would recommend Labs as soon as

possible to

> determine if symptoms are becoming acute. He may need medical

attention to

> get the biliruben back to normal.

>

>

>

> As far as disability insurance, I was able to buy it from my local

agent

> after I had been diagnosed with both PSC and UC. I did this on two

separate

> occasions after changing jobs. At the time I was in my late 40's

or early

> 50's. It is strange, but I was not insurable for life insurance.

>

>

>

> As far as social security disability, I recommend getting the

advice of an

> attorney. I am appealing my rejection now. My attorney told me to

document

> everything. Keep copies of your medical records, and highlight

everything

> so that you lead the adjudicators to the meat of the illness and

disability.

> I am 59 years old and have been in one type of work for the last 15

years.

> That puts me in a better position that some; however, my job is an

office

> job. That makes it a little more difficult to get disability. I

suggest

> you read the rules on the Internet regarding SSD. Each state has a

backlog.

> You can see how long it would take to process an application. The

only way

> you get to jump ahead in the line - according to my attorney - is

if your

> house is ready for foreclosure. I know two other people who had

claims for

> SSD - one a heart transplant patient - and it took them over two

years to

> finally get the approval. It is a painful and slow process. I

know some

> have gotten it on the first try, but that would still take 90 days

or

> longer.

>

>

>

> I am 19 months post transplant. I was diagnosed with PSC & UC in

1990. I

> had 17 normal years before my health went downhill fast. I did not

have the

> fatigue that most have with PSC; however, I have it now post-

transplant.

> Otherwise, I feel great and live a fairly normal life with just a

couple of

> minor restrictions.

>

>

>

>

>

> _____

>

> From: [mailto:psc-

support ] On

> Behalf Of tammylsomers@...

>

> Dana seems to be getting more jaundiced looking since starting back

to work

> in the auto paint industry after not working for 6 months due to a

layoff in

> another state. Are there any other members in the group in this

line of work

> or exposed to paint and thinner chemicals?

>

>

>

> Does anyone know of a way to buy short term and/or long term

disability

> insurance once someone has been diagnosed with these diseases? Does

anyone

> know more about the social security disability process enough to

tell me how

> to get benefits sooner rather than later should he become unable to

work?

>

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Share on other sites

Tammy

My husband can get insurance for anything except life insurance and

believe me we tried as we have three young kids and a farm. I think

your husband should be able to get short or long term. It might take

many phone calls and time but should find someone to work thru it

with you. My husband is thru aflac, but not sure what he all has, I

know he has cancer ins. and a couple others.

skomula

>

> Tammy,

>

>

>

> I can't speak to the paint and thinner chemicals, but I can give

some info

> on the others.

>

>

>

> When was the last time your husband had labs? It sounds like his

biliruben

> is high if he is jaundiced. I would recommend Labs as soon as

possible to

> determine if symptoms are becoming acute. He may need medical

attention to

> get the biliruben back to normal.

>

>

>

> As far as disability insurance, I was able to buy it from my local

agent

> after I had been diagnosed with both PSC and UC. I did this on two

separate

> occasions after changing jobs. At the time I was in my late 40's

or early

> 50's. It is strange, but I was not insurable for life insurance.

>

>

>

> As far as social security disability, I recommend getting the

advice of an

> attorney. I am appealing my rejection now. My attorney told me to

document

> everything. Keep copies of your medical records, and highlight

everything

> so that you lead the adjudicators to the meat of the illness and

disability.

> I am 59 years old and have been in one type of work for the last 15

years.

> That puts me in a better position that some; however, my job is an

office

> job. That makes it a little more difficult to get disability. I

suggest

> you read the rules on the Internet regarding SSD. Each state has a

backlog.

> You can see how long it would take to process an application. The

only way

> you get to jump ahead in the line - according to my attorney - is

if your

> house is ready for foreclosure. I know two other people who had

claims for

> SSD - one a heart transplant patient - and it took them over two

years to

> finally get the approval. It is a painful and slow process. I

know some

> have gotten it on the first try, but that would still take 90 days

or

> longer.

>

>

>

> I am 19 months post transplant. I was diagnosed with PSC & UC in

1990. I

> had 17 normal years before my health went downhill fast. I did not

have the

> fatigue that most have with PSC; however, I have it now post-

transplant.

> Otherwise, I feel great and live a fairly normal life with just a

couple of

> minor restrictions.

>

>

>

>

>

> _____

>

> From: [mailto:psc-

support ] On

> Behalf Of tammylsomers@...

>

> Dana seems to be getting more jaundiced looking since starting back

to work

> in the auto paint industry after not working for 6 months due to a

layoff in

> another state. Are there any other members in the group in this

line of work

> or exposed to paint and thinner chemicals?

>

>

>

> Does anyone know of a way to buy short term and/or long term

disability

> insurance once someone has been diagnosed with these diseases? Does

anyone

> know more about the social security disability process enough to

tell me how

> to get benefits sooner rather than later should he become unable to

work?

>

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Share on other sites

Hi Tammy;

I'm sorry to say that paint thinners and other organic solvents used

in painting shops can result in liver toxicity. Total bilirubin, ALT

and ALP, and serum bile acids all seem to be elevated in car painters

exposed to organic solvents as part of their work, according to this

study from Brazil:

Biomarkers 10: 456-463 (2005)

Increased serum bile acids as a possible biomarker of hepatotoxicity

in Brazilian workers exposed to solvents in car repainting shops.

Nunes de Paiva MJ, Pereira Bastos de Siqueira ME

Faculty of Pharmaceutical Sciences, University of São o, São

o, Brazil.

The objective was to evaluate total serum bile acids (SBA) as a

biological marker of hepatotoxicity in car painters exposed to

organic solvents and to compare their performance with classic

biochemical parameters of liver function. SBA were analysed in a

selected group of workers (n=57) occupationally exposed to a mixture

of organic solvents and in a control group (n=51). In addition,

aspartate aminotransferase (AST), alanine aminotransferase (ALT),

total bilirubin (TB), gamma-glutamyltransferase (GGT) and alkaline

phosphatase (ALP) were determined in the two groups. Urinary hippuric

acid was measured in all samples. Statistical analysis of the data

revealed a significant increase in the concentration of SBA, AST, ALP

and TB in exposed workers compared with controls (Mann-Whitney,

p</=0.05). However, SBA was the parameter most frequently altered in

exposed workers and showed higher significance between the two groups

(chi-square test) compared with the upper limit of the reference

range (8 micromol l(-1)). In conclusion, SBA can be considered to be

a sensitive parameter of hepatotoxicity induced by organic solvents

than the traditional tests and it can be used as an biological marker

of subclinical liver injury. PMID: 16308269.

So, limiting Dana's exposure to these chemicals would be advisable.

I'm afraid that continued exposure could well accelerate his liver

disease progression.

Best regards,

Dave

>

> Hello to the group. Dana seems to be getting more jaundiced

looking since starting back to work in the auto paint industry after

not working for 6 months due to a layoff in another state. Are there

any other members in the group in this line of work or exposed to

paint and thinner chemicals?

Link to comment
Share on other sites

Hi Tammy;

I'm sorry to say that paint thinners and other organic solvents used

in painting shops can result in liver toxicity. Total bilirubin, ALT

and ALP, and serum bile acids all seem to be elevated in car painters

exposed to organic solvents as part of their work, according to this

study from Brazil:

Biomarkers 10: 456-463 (2005)

Increased serum bile acids as a possible biomarker of hepatotoxicity

in Brazilian workers exposed to solvents in car repainting shops.

Nunes de Paiva MJ, Pereira Bastos de Siqueira ME

Faculty of Pharmaceutical Sciences, University of São o, São

o, Brazil.

The objective was to evaluate total serum bile acids (SBA) as a

biological marker of hepatotoxicity in car painters exposed to

organic solvents and to compare their performance with classic

biochemical parameters of liver function. SBA were analysed in a

selected group of workers (n=57) occupationally exposed to a mixture

of organic solvents and in a control group (n=51). In addition,

aspartate aminotransferase (AST), alanine aminotransferase (ALT),

total bilirubin (TB), gamma-glutamyltransferase (GGT) and alkaline

phosphatase (ALP) were determined in the two groups. Urinary hippuric

acid was measured in all samples. Statistical analysis of the data

revealed a significant increase in the concentration of SBA, AST, ALP

and TB in exposed workers compared with controls (Mann-Whitney,

p</=0.05). However, SBA was the parameter most frequently altered in

exposed workers and showed higher significance between the two groups

(chi-square test) compared with the upper limit of the reference

range (8 micromol l(-1)). In conclusion, SBA can be considered to be

a sensitive parameter of hepatotoxicity induced by organic solvents

than the traditional tests and it can be used as an biological marker

of subclinical liver injury. PMID: 16308269.

So, limiting Dana's exposure to these chemicals would be advisable.

I'm afraid that continued exposure could well accelerate his liver

disease progression.

Best regards,

Dave

>

> Hello to the group. Dana seems to be getting more jaundiced

looking since starting back to work in the auto paint industry after

not working for 6 months due to a layoff in another state. Are there

any other members in the group in this line of work or exposed to

paint and thinner chemicals?

Link to comment
Share on other sites

Thanks for the good info. I feel somewhat more calm after hearing

your response. I will have to take him to the ER 2 hours away if it

gets really bad, otherwise I have to wait until he sees this doctor

for the first time to get a referral and then the referral doc will

have to request the labs. The primary care doc appointment isn't

until March 24th as they book 6-8 weeks out. It was suggested by a

local that I take him to the ER if I can't wait to get the referral,

because then he would be seen by the doctor we need to see sooner, if

that makes sense. Folks here can't get same day or even same week

appointments and go to urgent care centers. Pretty sad.

I do feel much better after hearing that we can still get short

and/or long term disability benefits. I'm looking into that

immediately. Thanks again for the great info.

>

> Tammy,

>

>

>

> I can't speak to the paint and thinner chemicals, but I can give

some info

> on the others.

>

>

>

> When was the last time your husband had labs? It sounds like his

biliruben

> is high if he is jaundiced. I would recommend Labs as soon as

possible to

> determine if symptoms are becoming acute. He may need medical

attention to

> get the biliruben back to normal.

>

>

>

> As far as disability insurance, I was able to buy it from my local

agent

> after I had been diagnosed with both PSC and UC. I did this on two

separate

> occasions after changing jobs. At the time I was in my late 40's

or early

> 50's. It is strange, but I was not insurable for life insurance.

>

>

>

> As far as social security disability, I recommend getting the

advice of an

> attorney. I am appealing my rejection now. My attorney told me to

document

> everything. Keep copies of your medical records, and highlight

everything

> so that you lead the adjudicators to the meat of the illness and

disability.

> I am 59 years old and have been in one type of work for the last 15

years.

> That puts me in a better position that some; however, my job is an

office

> job. That makes it a little more difficult to get disability. I

suggest

> you read the rules on the Internet regarding SSD. Each state has a

backlog.

> You can see how long it would take to process an application. The

only way

> you get to jump ahead in the line - according to my attorney - is

if your

> house is ready for foreclosure. I know two other people who had

claims for

> SSD - one a heart transplant patient - and it took them over two

years to

> finally get the approval. It is a painful and slow process. I

know some

> have gotten it on the first try, but that would still take 90 days

or

> longer.

>

>

>

> I am 19 months post transplant. I was diagnosed with PSC & UC in

1990. I

> had 17 normal years before my health went downhill fast. I did not

have the

> fatigue that most have with PSC; however, I have it now post-

transplant.

> Otherwise, I feel great and live a fairly normal life with just a

couple of

> minor restrictions.

>

>

>

>

>

> _____

>

> From: [mailto:psc-

support ] On

> Behalf Of tammylsomers@...

>

> Dana seems to be getting more jaundiced looking since starting back

to work

> in the auto paint industry after not working for 6 months due to a

layoff in

> another state. Are there any other members in the group in this

line of work

> or exposed to paint and thinner chemicals?

>

>

>

> Does anyone know of a way to buy short term and/or long term

disability

> insurance once someone has been diagnosed with these diseases? Does

anyone

> know more about the social security disability process enough to

tell me how

> to get benefits sooner rather than later should he become unable to

work?

>

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Thanks for the good info. I feel somewhat more calm after hearing

your response. I will have to take him to the ER 2 hours away if it

gets really bad, otherwise I have to wait until he sees this doctor

for the first time to get a referral and then the referral doc will

have to request the labs. The primary care doc appointment isn't

until March 24th as they book 6-8 weeks out. It was suggested by a

local that I take him to the ER if I can't wait to get the referral,

because then he would be seen by the doctor we need to see sooner, if

that makes sense. Folks here can't get same day or even same week

appointments and go to urgent care centers. Pretty sad.

I do feel much better after hearing that we can still get short

and/or long term disability benefits. I'm looking into that

immediately. Thanks again for the great info.

>

> Tammy,

>

>

>

> I can't speak to the paint and thinner chemicals, but I can give

some info

> on the others.

>

>

>

> When was the last time your husband had labs? It sounds like his

biliruben

> is high if he is jaundiced. I would recommend Labs as soon as

possible to

> determine if symptoms are becoming acute. He may need medical

attention to

> get the biliruben back to normal.

>

>

>

> As far as disability insurance, I was able to buy it from my local

agent

> after I had been diagnosed with both PSC and UC. I did this on two

separate

> occasions after changing jobs. At the time I was in my late 40's

or early

> 50's. It is strange, but I was not insurable for life insurance.

>

>

>

> As far as social security disability, I recommend getting the

advice of an

> attorney. I am appealing my rejection now. My attorney told me to

document

> everything. Keep copies of your medical records, and highlight

everything

> so that you lead the adjudicators to the meat of the illness and

disability.

> I am 59 years old and have been in one type of work for the last 15

years.

> That puts me in a better position that some; however, my job is an

office

> job. That makes it a little more difficult to get disability. I

suggest

> you read the rules on the Internet regarding SSD. Each state has a

backlog.

> You can see how long it would take to process an application. The

only way

> you get to jump ahead in the line - according to my attorney - is

if your

> house is ready for foreclosure. I know two other people who had

claims for

> SSD - one a heart transplant patient - and it took them over two

years to

> finally get the approval. It is a painful and slow process. I

know some

> have gotten it on the first try, but that would still take 90 days

or

> longer.

>

>

>

> I am 19 months post transplant. I was diagnosed with PSC & UC in

1990. I

> had 17 normal years before my health went downhill fast. I did not

have the

> fatigue that most have with PSC; however, I have it now post-

transplant.

> Otherwise, I feel great and live a fairly normal life with just a

couple of

> minor restrictions.

>

>

>

>

>

> _____

>

> From: [mailto:psc-

support ] On

> Behalf Of tammylsomers@...

>

> Dana seems to be getting more jaundiced looking since starting back

to work

> in the auto paint industry after not working for 6 months due to a

layoff in

> another state. Are there any other members in the group in this

line of work

> or exposed to paint and thinner chemicals?

>

>

>

> Does anyone know of a way to buy short term and/or long term

disability

> insurance once someone has been diagnosed with these diseases? Does

anyone

> know more about the social security disability process enough to

tell me how

> to get benefits sooner rather than later should he become unable to

work?

>

Link to comment
Share on other sites

Thanks for the good info. I feel somewhat more calm after hearing

your response. I will have to take him to the ER 2 hours away if it

gets really bad, otherwise I have to wait until he sees this doctor

for the first time to get a referral and then the referral doc will

have to request the labs. The primary care doc appointment isn't

until March 24th as they book 6-8 weeks out. It was suggested by a

local that I take him to the ER if I can't wait to get the referral,

because then he would be seen by the doctor we need to see sooner, if

that makes sense. Folks here can't get same day or even same week

appointments and go to urgent care centers. Pretty sad.

I do feel much better after hearing that we can still get short

and/or long term disability benefits. I'm looking into that

immediately. Thanks again for the great info.

>

> Tammy,

>

>

>

> I can't speak to the paint and thinner chemicals, but I can give

some info

> on the others.

>

>

>

> When was the last time your husband had labs? It sounds like his

biliruben

> is high if he is jaundiced. I would recommend Labs as soon as

possible to

> determine if symptoms are becoming acute. He may need medical

attention to

> get the biliruben back to normal.

>

>

>

> As far as disability insurance, I was able to buy it from my local

agent

> after I had been diagnosed with both PSC and UC. I did this on two

separate

> occasions after changing jobs. At the time I was in my late 40's

or early

> 50's. It is strange, but I was not insurable for life insurance.

>

>

>

> As far as social security disability, I recommend getting the

advice of an

> attorney. I am appealing my rejection now. My attorney told me to

document

> everything. Keep copies of your medical records, and highlight

everything

> so that you lead the adjudicators to the meat of the illness and

disability.

> I am 59 years old and have been in one type of work for the last 15

years.

> That puts me in a better position that some; however, my job is an

office

> job. That makes it a little more difficult to get disability. I

suggest

> you read the rules on the Internet regarding SSD. Each state has a

backlog.

> You can see how long it would take to process an application. The

only way

> you get to jump ahead in the line - according to my attorney - is

if your

> house is ready for foreclosure. I know two other people who had

claims for

> SSD - one a heart transplant patient - and it took them over two

years to

> finally get the approval. It is a painful and slow process. I

know some

> have gotten it on the first try, but that would still take 90 days

or

> longer.

>

>

>

> I am 19 months post transplant. I was diagnosed with PSC & UC in

1990. I

> had 17 normal years before my health went downhill fast. I did not

have the

> fatigue that most have with PSC; however, I have it now post-

transplant.

> Otherwise, I feel great and live a fairly normal life with just a

couple of

> minor restrictions.

>

>

>

>

>

> _____

>

> From: [mailto:psc-

support ] On

> Behalf Of tammylsomers@...

>

> Dana seems to be getting more jaundiced looking since starting back

to work

> in the auto paint industry after not working for 6 months due to a

layoff in

> another state. Are there any other members in the group in this

line of work

> or exposed to paint and thinner chemicals?

>

>

>

> Does anyone know of a way to buy short term and/or long term

disability

> insurance once someone has been diagnosed with these diseases? Does

anyone

> know more about the social security disability process enough to

tell me how

> to get benefits sooner rather than later should he become unable to

work?

>

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