Long term disability

@kmlowe my liver transplant was 3.5 years ago. I applied for LTD- private, through my employer, and the company required me to apply for social security disability (SSDI) which they helped me with. I did all of this about 2 months before my transplant (I didn’t know I’d be called so quickly) but wasn’t approved until after my transplant, so it was retroactive. It was stressful to have that gap of uncertainty but all was well. I stayed on it for about 1.5 years then slowly returned to work. My private LTD canceled my payments with no warning the second I started this process. SSDI stayed on and I protected myself through their Ticket to Work program.

Do you have specific questions? I know how hard it is to cope with this stuff when you feel unwell and await a transplant.

I signed up with social security you can get a year before and a year after it’s mandatory all they need is medical records mine is retroactive because I found out after my transplant 2 1/2 years ago I was disabled before and now after my transplant permanently because I had other complications I’m 65 so it’s okay be patient waiting

I also signed up with Social Security advised by my hospital and they paid retroactively but since I'm still pre-transplant but on the list for monitoring, I'm still on SSDI for the past 12 years. I'm now eligable for retirement SS but they are keeping me on SSDI, I'm 66 now. It did take nine months for the SSDI to be approved and you have to stay on them. Do it all online so you have a trail of what has or hasn't been done. Going to the office is a waste of time. You have to stay with it until it's approved. Keep excellent notes and make sure your hepatologist office knows what you are doing. I had to mee with a chronic disease psycologist as the final step, he had been a social worker in a hospital in the transplant department so he understood the challenges. I kept copies of everything I sent and they sent, including the envelopes they came in for the timestamp. It's a long process so pace yourself.

Apply for SSDI as soon as possible. I hate to say it, but SSA is slow to process applications. I used to work for a law firm that handled SSDI applications and the rule of thumb was you would automatically be denied 3 times and it could take a couple of years to get approved. I would hope transplant paperwork would go through quicker As stated before, keep a copy of ALL correspondence and the envelopes. Get your medical records together as soon as possible. Doctors usually hate dealing with the paperwork, but you might go through the medical records office to get some information. Do as much as you can as early as you can, both to get the process started and before you start feeling worse.

Good luck!

Thanks to all who have provided input! I, fortunately, do have decent private LtD, but am required to apply for SSDI. I have a representative doing all the paperwork - I have heard about everyone being declined! Mine was actually approved but ended (I received a lump some that I have to give to my LTD provider) because they based my claim on a blood transfusion I had while hospitalized, and not the underlying cirrhosis! So, we’re appealing that now. I am fortunate that I feel ok most of the time (fatigue is getting worse) or I wouldn’t be able to navigate everything we have to in order to get the support we need.

Thanks again - love this community - I’ve never been so into online forums till I found all of you!

@kmlowe I am glad to see you have gotten some useful information from Mayo Clinic Connect! That's the great thing here. As members and caregivers with so many different things going on, we can share our experiences. There's bound to be hints and tips we can use in our own lives.
Ginger