The Grey Zone...

[RAM99]

Are there any recipients out there who are stuck in the "grey zone"...too sick to work full time but not sick enough to be approved for Disability? What resources and options have you looked into?

[kimosabi1961]

This site may have some info you need:

ssdfacts.com/forum/

[RAM99 in reply to kimosabi1961]

Thank you so much for your note!

[WYOAnne NKF Ambassador]

How long has it been since your transplant? It took me a couple of years before I went back to working. At first I just worked part-time and then started back full time. What are your issues that you are unable to work?

I remember that my first year was a little rough. Had GI issues and my transplant team was adjusting my immunosuppressants.

I am now 20 years post transplant and am retired after working.

Best of luck.

[RAM99 in reply to WYOAnne]

Hi there, I too am 20 years out. Problem is that I went right back to work after the transplant (10 days) because I was not told I had options, and then when I started getting serious stomach and other issues about a year after it was too late to get help because I was "obviously ok" because I had been working.

So, basically since then I have worked full time no matter how bad things are. I even had to go back to work a few days after being in the hospital for 3 weeks with Sepsis.

Anyway, 20 years later I have multiple serious health issues, and am allergic or resisent to almost all antibiotics which means I will end up going in for IVs often at some point and will be unable to hold down a job.

Still I am told there is nothing for me because I am in the "grey zone.".

🤨

[WYOAnne NKF Ambassador in reply to RAM99]

Where did you get your transplant and why isn't the transplant team HELPING YOU???My team helps me no matter how far out I am from when I had my transplant.

A couple years ago I was having abdominal pain over where my kidney is. Transplant team ordered tests and found it to be an incisional hernia in my transplant incision. A year later that had to be repaired again. Fine now.

I am curious where you had your transplant?

Mine was at University of Wisconsin Transplant.

[RAM99 in reply to WYOAnne]

Hi, mine was in Philly. Great medical hospital, but I tried in desperation years ago to reach out to them to see if they had resources or assistance and found no help. I even tried to contact the tx social workers with no luck...

[Dara3351]

Talk to hour transplant team and talk to an attorney who specializes in disability.

[RAM99 in reply to Dara3351]

Have done this several times. This is how I know I am in the "grey zone." And finding a lawyer is the last resort, but it may be the final one unfortunately.

[stephanie904]

Hi Ram99,

If you are on dialysis, you will automatically be approved for disability & Medicare.

If you are post transplant, it is a lot tougher.

I applied for disability post transplant & got denied. But then most people get denied.

I hired a highly recommended disability attorney & she was awesome. You want one that you don't pay upfront. Their fee comes out of your disability check when you win.

If you don't win, they get paid zero. Also, per the US Government they can't charge more than 25% plus any fees (postage, fees for medical records to be copied, etc...). Mine only did the 25% up to a max of $6000.00.

If you know any attorneys, ask for recommendations. If you don't know any, go online & see if you can find some in your area.

You have every right to go & interview them. That 1st appointment is FREE.

But be prepared, you're working with the Federal Government & nothing is fast......

From when I 1st applied until I got the final decision took over 2 yrs. Then you have 1 to 2 months until they send the check to you. They do backdate it to the date that your doctor says you became disabled.

Yes, your doctor has to stand behind you. Your PCP is the one that files the original papers & then the attorney also sends requests to any & all doctors that you see.

Hi hope this helps.

Best of luck 😊

[RAM99 in reply to stephanie904]

Thanks for the note. And, yes, part of the frustration all of these years is that I don't have the ability to not work and wait months for decision again. When I first tried years ago I almost lost everything because I had to stop working while I waited. Of course, I was declined because not "sick enough."

After my Sepsis in 2015 I tried again but had no way to pay my bills after being in the hospital so long while I waited and couldn't take the chance of them saying No again.

My transplant team Dr, long with everyone else, sees me and even though they know all that I am dealing with, just says ,"you look fine."...

I recently researched disability lawyers after, once again, reaching out to my tx team for thoughts and ideas, and was told there is no help for me. I will continue my search O guess and see where it goes.

[stephanie904 in reply to RAM99]

Best of luck if you try again.

Take care@

[RAM99 in reply to stephanie904]

Thank you!