Jennifer, have we talked before about your case? I can't remember, as I have had a lot of conversation with people about this. If not, please email me at division902@hotmail.com because I have some great information to send to you and I just typed up something new in the last few weeks that I could send if we have previously talked.
They turned Mark down 3 times and we finally requested hearing and got a lawyer. The lawyer did help, by getting us a doctor to show up at the hearing, but other than that- I did all the leg work, I typed up all the spread sheets and thanks to Beth Sufian- I was able to look up the SSDI impariment listing for CF (as well as do some of my own research on the digestive issues because nothing is written specifically-digestive wise for CF, although respiratory is). Our lawyer didn't get any of that impairment listing info for us (he knew NOTHING about CF) so if you are going to get a lawyer, go with one that has some sort of experience with CF cases.
You have the right idea, appeal appeal appeal. This is the way that they try to weed people out, figure that they will get busy with something else and drop the case. Furthermore, if you conside it, CFers living to adulthood and older age is very new to society, many people don't even know what CF is. Not that it is an excuse by any means, but you have to consider that peoples lack of knowledge about the disease may be preventing them from rendering and educated decision. I am not sure how the SSA functions in educating their staff, but it can't be all inclusive-that's a lot of people to educate. You have to bombard them with information about the disease and specifics about yourself.
The EASIEST to prove is the lung infections. You have to have at least 1 every 6 months that require nebulized antibiotics (Tobi, Colistin) or IV antibiotics. I jsut kept a excel spreadhseet on Mark (I had to go back and dig up records from the last 1.5 years by the time I foudn the CF impariment listing). His infections for the first year (after we filed for SSDI) were about every 9 months, then they were ever 3-7 months, then every 6-7 months, so even though they weren't every 6 months, they were still frequent enough to be considered. THen on top of that, he has documented digestive issues (a letter from his dietician was submitted just in case), and he did have Bronchitis, although not every 2 months as required by the impairment listing. In order to meet the impariment listing, you have to MEET ONLY 1 of the 3 things listed for CF. He partially met 2 of them (He did not meet the FEV1, it is a really low FEV level) and that, plus some "minor" (I say minor because he has his weight under control and they go by low weight for your height) digestive issues. What SSA doesn't tell you is that you DON'T have to MEET every listing, if you equal a listing (a combination of a few different things) then you can win.
Anyways, if you want some pointers, please do email-I would love to help as I know what a frustrating situation this can be. Can I ask a few specific questions to try and help you?
1. Does your doc prescribe Chest PT? If so, make sure it is documented in your chart notes EVERY visit.
2. If he does Rx chest PT, how long and how many times every day? Again, make sure it, as well as all the things below are documented every day.
3. Do you use a nebulizer?
4. If you do use a neb, what medications do you use?
5. how often do you use them everyday (ie tobi morning and evening, pulmozyme morning...)
6. What pill medications to you take?
7. Do you have trouble sleeping, or you sleep for 8+ hours? If so, I would recommend you have a sleep study done. If it doens't show that you have obstructive sleep apena, it will show how many times during the night you completely woke up as well as how many times in the night you came out of the REM sleep mode. That is very important because the more times you come out of the REM sleep level, the less solid sleep you get (the person evaluating your sleep study should be sure to note this, ours did when we explained part of our reasoning for the sleep study) and it helps to "explain/show" why you are so exhausted during the day.
8. Do you find yourself very sleepy during the day? If so, do you nap and for how long and how many times a day?
I recommend that you make a schedule of when you wake up, when you go to bed and everything else inbetween. Every little tiny thing-even if you think it is unimportant.
Hope this helps, and feel free to email me if you have questions. I know how frustrating this can be because even though it was Mark who applied for SSDI, I did the spreadsheets and stuff to keep track (for some strange reason I love this kind of stuff).
Julie (wife to Mark 24 w/CF)
