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Real members of myPHteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

I know the first step is with the Doc's and we are scheduling those conversations now. But I hear the entire process is daunting and long. I just need to chat with someone who helps with these cases who will not charge me an arm and a leg. I am really scared and struggling with facing the rest of my life looking very different from what I imagined or planned.

February 1, 2024
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A myPHteam Member

I'm straining my brain to remember some specifics...but if I remember correctly, at the time I had to have gone from working full time to working under 20 (???) hours/week for a 6 month consecutive period to apply for SSDI. And then during the time I was covered, they would periodically call where I used to work and other places to be sure I wasn't sneaking in hours. And they would call me at odd times to speak with me on the phone...but since my key symptom was not being able to speak without coughing up blood, those calls only proved my point as they couldn't understand me at all. I wasn't working at all during that time so I wasn't concerned. Then in Arizona, and I was able to function, I enrolled in what SSDI called "Return to Work" program where I was able to begin working (in my case working in retail) and my new employer actually got tax credits for hiring me while I was in the program. Then after a period of time, the SSDI payments stopped.

February 1, 2024 (edited)
A myPHteam Member

After I got my RHC it only took me 5 months to get approved. If your pressure is above 40 with RHC you should have no problem. Mine was 68 with the RHC but with the several Echo's I've had, it was between 90 and 115 every time. I think that's they want the RHC.

February 2, 2024
A myPHteam Member

You can log into social security and follow the link to SSDI. You can complete the application online. It will guide you through the process. Alternatively, you can contact your local social security office and schedule an in-person appointment. They will tell you what documents you need and complete the application for you.

February 1, 2024
A myPHteam Member

Most likely yes...but I hope they don''t have a time limit for how long you can wait to file after the date of diagnosis or from the date you had to stop working full time. At the same time I was applying to SSDI in New York, I was also on a private disability plan through my employment where they also initially turned me down and I got that on appeal. I had to turn in a medical diary of sorts for that along with affadavits from colleagues, clients and doctors attesting to how I had stopped being able to function productively at work.

February 1, 2024
A myPHteam Member

This is all super helpful!!! I have a PAH diagnosis from Aug 2022, but have been working at least part time during most of it. I had a long term disability policy from when I worked then, might I also be able to claim that, since my date is when I was working for them?

February 1, 2024

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