Disability after Transplant

[Sara]

Do you normally qualify for some sort of disability check after getting a transplant until you can go back to work?  How much does it typically pay?  Is there usually any sort of delay, or can you get most of the details/paperwork done while waiting for a transplant?

[Panda_9]

I would say you can remain on it until your recover from the operation, and you are well. If all goes well, you should be able to work.

[kevno]

Once I had the Transplant everything stopped, you are classed as being well. Even if in my case I was not well, it did not make any difference. I was 14 years old at the time. At the age of 16 I had to start to pay for my prescriptions.

Kevno

[Panda_9]

Thats pretty awful kevno. It shouldnt matter if you had had a transplant or not, if you are unwell you are unwell. When I first started getting rejection I got knocked back for disability because my creatinine wasnt high enough  They didnt care how I felt, were more interested in my bloods. So I had to go on unemployment benefits and go through all the crap for that. I ended up having to go to the doctor every 2 weeks to get a certificate to say I was unfit for work. I applied again with a different doctor filling out the forms and I got it. Now my partner is working full time, so they take most of my money off me. Apparently his income, is my income. So I have to rely on him to pay all the bills and support me, which I really dont like doing. Another thing that annoys me is the govt is giving a lump sum of $6000 for having a child. While us on disability get a $600 lump sum. They choose to have kids, we dont choose to be on disability. I think the system stinks.

[okarol]

In the US the transplant patient is eligible for Medicare for 3 years following the surgery, but are then expected to be fit and able to work full time and get their own health insurance to cover the immunosuppressants. As far a Social Security Disability, I don't know how that is handled.

[jbeany]

They only review disability every few years, so I don't think they are going to bump anyone off of it immediately.  If you were healthy enough to go back to work, which would certainly be necessary if you wanted a job with benefits to take over payments on the meds when Medicaid stops paying, then it would be the increase in income that would end your disabilty, not the transplant.  If you were having a bad time even with the transplant, then that would show up in the review and they wouldn't take it away from you then either.

[angela515]

I have had 2 transplant... so here is what has happened to me.  My first transplant I was already on SSDi on dialysis, and it continued after transplant. Now, I could of stayed on it until the 3 years were up and said I wasn't up to working yet, but I chose to start working as soon as I could b/c I hate not working. I still got my prescriptions covered for 3 years though. 

As for this time around... again, I started on SSDI while on dialysis, I still it get it 5 months after transplant. I received a letter today from Social Security for an "Update" on my disability status and I have to answer it honestly. Some of the questions are,

"Have you worked since June 2005?" Nope.

"Have you gone to school since June 2005?" Yes.

"Please check one of the follow 3 boxes" "Box 1- I have not talked to my doctor about going back to work" Box 2- "My doctor says I cannot work." Box 3- "My doctor says I can work." I will be checking Box 1.

"Has your health improved since June 2005?" Well, I have to answer it honestly, so I will have to say yes, transplant is a total transformation and improvement for me. So, yes.

There is more questions, that's just the first page, there is about 5 more questions on the back.

I will not be going back to work though until I have a vehicle to do so, and find a job that will allow me to be home during the mornings and afternoons to get my kids off to school and home from school. So I need a graveyard shift. I also will not take a job that makes me receieve less money than I am already getting on SSDI, there is no point in it... makes no sense to.

So, in conclusion, I will be staying on SSDI until I can work, not physically, but from the reasons above. And since I am a transplant patient, I have 3 years to figure it out. Although i'm hoping to get it all situated this year as I hate not working.

[st789]

Is always good to hear this topic discuss.

3 years after transplant may of may not be that long but  I guess is better than nothing.

To work or not to work.  That is the question.

[okarol]

As for this time around... again, I started on SSDI while on dialysis, I still it get it 5 months after transplant. I received a letter today from Social Security for an "Update" on my disability status and I have to answer it honestly. Some of the questions are,

"Have you worked since June 2005?" Nope.

"Have you gone to school since June 2005?" Yes.

"Please check one of the follow 3 boxes" "Box 1- I have not talked to my doctor about going back to work" Box 2- "My doctor says I cannot work." Box 3- "My doctor says I can work." I will be checking Box 1.

"Has your health improved since June 2005?" Well, I have to answer it honestly, so I will have to say yes, transplant is a total transformation and improvement for me. So, yes.

There is more questions, that's just the first page, there is about 5 more questions on the back.

We got that same form today! I wasn't sure how to asnwer some of the questions. I will read it again and check with you angela!

[rimbo74]

My 5 yr work anniversary is coming up on the 23rd of July.  My transplant is scheduled July 31st.  After your 5 yr anniversary at my work, long term disability increases from 4 weeks to 11 weeks and pays 100% salary.  Pretty nice deal.  Now if I can only figure out all the paperwork.

[livecam]

My 5 yr work anniversary is coming up on the 23rd of July.  My transplant is scheduled July 31st.  After your 5 yr anniversary at my work, long term disability increases from 4 weeks to 11 weeks and pays 100% salary.  Pretty nice deal.  Now if I can only figure out all the paperwork.

You shouldn't have to.  They should do it for you.  Since you don't know when you'll be getting your transplant you can't really plan for when disability will begin.  When I got mine our HR department handled everything.  Disability started pretty much automatically. I think they sent some forms over in a packet for me to sign but I can't really remember. 

You'll be so excited over getting the transplant that you won't really be thinking about where the money comes from for awhile!  It will all work out just fine.

[rimbo74]

I do know when my transplant is since my brother is giving me one of his.  We are scheduling the surgery after my 5 years has passed.   

[angela515]

As for this time around... again, I started on SSDI while on dialysis, I still it get it 5 months after transplant. I received a letter today from Social Security for an "Update" on my disability status and I have to answer it honestly. Some of the questions are,

"Have you worked since June 2005?" Nope.

"Have you gone to school since June 2005?" Yes.

"Please check one of the follow 3 boxes" "Box 1- I have not talked to my doctor about going back to work" Box 2- "My doctor says I cannot work." Box 3- "My doctor says I can work." I will be checking Box 1.

"Has your health improved since June 2005?" Well, I have to answer it honestly, so I will have to say yes, transplant is a total transformation and improvement for me. So, yes.

There is more questions, that's just the first page, there is about 5 more questions on the back.

We got that same form today! I wasn't sure how to asnwer some of the questions. I will read it again and check with you angela!

I just filled mine out today.  I dont like these things, LOL

[Falkenbach]

Centrelink (the government agency responsible for welfare payments in Australia) has not said anything to me about my eligibility since I've had the transplant. I guess they do a review at set intervals (though I don't know what these intervals are) to re-establish your disability. I've only been on the disability pension for a year or so I think, perhaps I'm due for a review. They normally advise these things by mail.

I am intending to go back to regular work in around 6 months. Before then, maybe at the 3 month mark depending how I feel, I will get back in touch with the temping agency I have worked for for many years, and ask for short assignments (1 and 2 days) to help me get back in the swing of things. Administration work is not very physical, so there should be no reason I can't do this.

My pension is very low anyway, they cut most of it out due to my partner earning a full time income. Unfortunately, once the mortgage is paid each fortnight, there's not much of that left! But we'll get by.

[Rerun]

It says right in the Social Security Handbook that after you are transplanted you have 12 months and then you are kicked off disability.  I asked my doctor about this and she said "well you won't be disabled anymore so we can't keep you from working."

OK my question?  Who the hell will hire a 50 year old woman on her second kidney transplant.

Where am I going to find a job with benefits?

Stay on Dialysis and get $2,300 a month plus full benefits.

Get a transplant and live/die on the streets.

Hmmmm  What to do....??

[Falkenbach]

Yeah I'm also concerned about getting permanent work. I am still young, but if they do ask about health (and they can and often do) I have to be honest. And I don't think anyone will want to hire a transplantee.

I am lucky I have my employment agency to fall back on, I have always been able to get plenty of temping work with them - there's pretty much work always available if you want it. So I will always have that. But it's not stable.

You have a very, very good point though, rerun. You have the odds against you, and it's not fair.

[angela515]

I wasn't kicked off disability after 12 months the first transplant... hmm. I'm not complaining though.

Why do you think you wouldn't be hired due to having a transplant? After my first translant I had no problems getting a job. I was hired at Citigroup and at the time full benefits start from day 1, now you have to wait 30 days before they start.

[st789]

Is a dilemna right Rerun?  Get a transplant and face the uncertain in term of having to get a job with full benefits.  Yes, what to do...??

[Dman73]

After you apply for disability they tell you that when your status changes (transplant, married, job, ect.) you have to notify them. One year after transplant they can take you off disability because you are expected to find a full time job with benefits.

What they don't consider is the economy where millions of healthy people are having trouble finding work and if you are over 40 there is age discrimination.

Another thing they don't consider is how long you have been on dialysis before getting a transplant. There is a big difference with your body recovering after 1 year of dialysis compared to 10 years of dialysis. It's all the same in their book.

I talked to Social Security a few years ago about amending my disability status to include bilateral hip replacements and severe carpal tunnel and they told me that they were not about to guarantee an income based on anything other than dialysis. I told them that I will continue as is and put my transplant status on hold.

Meanwhile, I am still trying to find a way to solve this dilemma. If the economy was great you might stand a chance but I'm not ready to take a leap of faith and end up on the street.