I am getting ready to apply for disability. Lung function is good, its around 78 percent. The problem is that I have had a lot of coughing up blood over the last couple years. I am in the food service industry as a waitress and I really cant do the job with CF anymore. I need training to get into a new career and while Im in school ( 1-2 years) I will need to be in disability in order to survive because the school program is full time. I just got dx with regurgitation in two of my heart valves. I am waiting to get more info on this but I believe that is heart disease in two valves. Will cystic fibrosis and heart disease in valves be enough for them to approve me? I am getting my diabetes test done soon because I am pre-diabetic but it has been getting worse. I also have really bad joint pain and arthritis but I have not been DXed yet. That is my next step. I feel if you have multiple problems, social security will approve you. It has to be more than CF alone. Just the vibe Im getting about social security. Any info would help. Single/29 years old/ no family/claimed 30k gross income in 2014/ about to quit my job soon to apply.
Those who have applied to disability
- Thread starter kmhbeauty
- Start date
Here is the SSA website that shows the requirements to qualify with CF. not sure about the heart issues though in addition to the CF. You could call the CF legal hotline or Disability advocates for CF. Julie runs the second site and has extensive experience with the disability process for people with CF.
http://ssa.gov/disability/professionals/bluebook/3.00-Respiratory-Adult.htm#3_04
http://dafcf.org
the first link does show Hymoptysis as a qualifier for disability but it has to have been 6+ times per year and documented by a doctor. Looks like any hospitalization in excess of 24 hours counts as at least two "events". Ther are many people here with experience so I'm sure they'll chime in but just wanted to provide some basic info/advice that I've seen come up repeatedly in all of the disability threads. Defintely search the archives here because this topic has been discussed many times.
http://ssa.gov/disability/professionals/bluebook/3.00-Respiratory-Adult.htm#3_04
http://dafcf.org
the first link does show Hymoptysis as a qualifier for disability but it has to have been 6+ times per year and documented by a doctor. Looks like any hospitalization in excess of 24 hours counts as at least two "events". Ther are many people here with experience so I'm sure they'll chime in but just wanted to provide some basic info/advice that I've seen come up repeatedly in all of the disability threads. Defintely search the archives here because this topic has been discussed many times.
benthyr123
New member
When I applied my FEV1 was below 50% and I had been hospitalized 4x in a one year period. I was approved in 6 months. My experience was good with ss, so I wish I could offer more advice. Don't give up.
@jaimers. I did go to the hospital for coughing up blood in May 2014 but that's the last time. I have had multiple coughing up blood episodes but I didn't go to the doctor. I couldn't afford to miss work and stay there for 4-5 days so I just got through it by myself. Im afraid I wont have enough hospitalizations to qualify. In 2014, I was hospitalized for blocked colon also. Nothing for 2015 yet. I will call Julie and see what she says. I spoke to her once about a different problem and she did help me. I called social security and I have 38/40 credits so they said I have enough credits. I have been working like a dog since I was 18 years old.
I agree with you that waiting tables is a difficult job for people with CF, especially long term. I think you are very wise in getting more education and trying to find a job that will better suit you (and hopefully come with health benefits and paid days off). One thing to look at when getting into school is to explain your medical related expenses to your financial aid office. That helped me qualify for a little extra Pell grant money back in the day. Some universities will offer a semi-reasonable health care plan (or at least they did 10 years ago).
Good luck. What do you plan on studying?
Good luck. What do you plan on studying?
I applied to two school for general medical sonography and cardiac sonography as a technologist. I might end up having to go to a trade school because both the public schools are impacted and difficult to get into. The good news is that the DOR approved my application to get my schooling paid for at the public schools. They might pay around half for the trade school which will leave me 20k in debt. Ill take what I can get though. The problem for me is living while im in school full time. I don't have family to lean on or to help me financially. I wont get any pell grant because I have showed too much money for 2014, I showed 30k on my taxes. My only option is disability so I can get through the schooling since I will need around 20k to live off a year to survive. I am in the process of reducing my debt and working like a dog right now so I can get through school on social security. I just hope I can get approved. Im not sure what else I can do. Maybe I can get dxed for anxiety? I figured if I apply with a variety of health problems, maybe I can get approved.
I applied a few years back on my own and was denied. If I applied again I would probably go the route you are going and talk with the CF legal team.
After I got denied I applied with California's DoR as well and found a job.
As far as adding on another diagnosis I would say only do it if you really feel you are suffering from it and are doing it to actively seek help for that condition. They sometimes do check ups years out.
After I got denied I applied with California's DoR as well and found a job.
As far as adding on another diagnosis I would say only do it if you really feel you are suffering from it and are doing it to actively seek help for that condition. They sometimes do check ups years out.
Simba15
Member
IMO get a lawyer now before you apply. Find one that specialized in SSDI. You don't have to pay them unless you win. Most people are denied at least 1x.
I don't know why I didn't think of this sooner, but have you considered discussing your situation with a state funded rehabilitation counselor? My wife's college courses covered Vocational Rehab Counseling a bit, and even discussed how to help CF patients transition to a more suitable career as our health becomes problematic. The below link looks like the office for California (I’m assuming your profile is current).
Talking to my wife further, it seems like they might be able to help you with some of the disability application as well as direct you toward scholarship and funding programs for further schooling. My wife suggests you call and set up an appointment, as the email and website responses aren't always great. Also note that it is government so there might be a few layers of bureaucracy to work through.
If you do go down this path, would you please let us know if this sort of program is helpful for CF folk?
http://www.rehab.cahwnet.gov/VRED/Am-I-Eligible-4-VR-Services.html
Talking to my wife further, it seems like they might be able to help you with some of the disability application as well as direct you toward scholarship and funding programs for further schooling. My wife suggests you call and set up an appointment, as the email and website responses aren't always great. Also note that it is government so there might be a few layers of bureaucracy to work through.
If you do go down this path, would you please let us know if this sort of program is helpful for CF folk?
http://www.rehab.cahwnet.gov/VRED/Am-I-Eligible-4-VR-Services.html
imported_MaggieB
New member
I got denied initially, and then got a lawyer and was immediately approved, with a judge's letter that basically said, "Social Security, are you crazy? Of COURSE this woman should be on disability!" It was very validating. Good luck to you!
Hi Eathan,
I am currently working with the DOR. They approved to pay all the money for the public school and about half for the trade school. They are great! I will still have to quit my job since the schooling is full time so I will need money to live off. Pay the apartment, phone bill, utilities ect. They will only help for the cost of the school and books. I am happy that I did get approved for that but I will need help while in the program. If I go to the trade school, the hours are much lighter so I will still be able to work. I am using the trade school as a last resort because I would have to be 20k more in debt and it doesn't look good on a resume. I will never be able to work in a hospital. Not sure if I will ever want to but its good to have the choice. One of the public schools is 730am-4:30pm with an 1.5 hour drive each way so there will be no way I can work. I think my best bet is to hire a lawyer. I did my diabetes test yesterday. I am going to talk to my doctor about the next step Monday. Please pray I get into the public schools everyone.
Thanks for everyones help!
Kim
Hi Beauty,
I applied for SSDI in 2009 and was approved. I had the help of Julie. In the 12 months before I applied, which is the period they look at, I had been hospitalized 3 times (on 3-4 weeks of IV antibiotics with each), had a sinus surgery, a port placed, and a bronchoscopy. My FEV1 had dipped into the 40s during a couple exacerbations. I was lucky that my case was pretty clear cut.
I really hate to be a Debbie Downer here, but based on your posts I would say getting approved based on CF, or even CF in some combination with heart problems is unlikely. If you read the link Jaimers provided, they look at things like hospitalizations, IV antibiotic use, nebulized antibiotic use, and FEV1. I know you have mentioned previously that you don't take antibiotics or do treatments. So that would take any IV antibiotic and nebulized antibiotic use out of the equation for you. With an FEV1 of 78, you would not meet that criteria either. Also, one of the things Julie has her clients do is create an activity log that shows how much time you spend per day doing treatments, washing/sterilizing nebulizer cups etc. if you are still currently not taking meds or doing treatments, you wouldn't be able to submit that for evidence either. I also think that Social Security would just in general question how severe and limiting your CF is if you do not do treatments or take antibiotics. The criteria they have for the hemoptysis episodes is also quite specific, and since your episodes would be undocumented, they wouldn't count either.
With all that said, I know nothing of your heart issues so I think your best bet would be to request your medical records for the past 12 months and see if you can get a free consultation with a lawyer who specializes in SSD. They could look at records and tell you your odds based on that. As someone mentioned previously, often times you don't pay anything unless your case is won. You can also try Julie, but I know her resources are spread thin and she is unfortunately having to be very choosy with the cases she takes on.
Sorry for sounding negative. I just wanted be honest based on my experience and what I know they are looking for. I'm no expert, so take my opinion with a grain or two of salt. I really hope you are able to find a solution so you can go back to school and get a job that's better for your health!
Take Care, Autumn
I applied for SSDI in 2009 and was approved. I had the help of Julie. In the 12 months before I applied, which is the period they look at, I had been hospitalized 3 times (on 3-4 weeks of IV antibiotics with each), had a sinus surgery, a port placed, and a bronchoscopy. My FEV1 had dipped into the 40s during a couple exacerbations. I was lucky that my case was pretty clear cut.
I really hate to be a Debbie Downer here, but based on your posts I would say getting approved based on CF, or even CF in some combination with heart problems is unlikely. If you read the link Jaimers provided, they look at things like hospitalizations, IV antibiotic use, nebulized antibiotic use, and FEV1. I know you have mentioned previously that you don't take antibiotics or do treatments. So that would take any IV antibiotic and nebulized antibiotic use out of the equation for you. With an FEV1 of 78, you would not meet that criteria either. Also, one of the things Julie has her clients do is create an activity log that shows how much time you spend per day doing treatments, washing/sterilizing nebulizer cups etc. if you are still currently not taking meds or doing treatments, you wouldn't be able to submit that for evidence either. I also think that Social Security would just in general question how severe and limiting your CF is if you do not do treatments or take antibiotics. The criteria they have for the hemoptysis episodes is also quite specific, and since your episodes would be undocumented, they wouldn't count either.
With all that said, I know nothing of your heart issues so I think your best bet would be to request your medical records for the past 12 months and see if you can get a free consultation with a lawyer who specializes in SSD. They could look at records and tell you your odds based on that. As someone mentioned previously, often times you don't pay anything unless your case is won. You can also try Julie, but I know her resources are spread thin and she is unfortunately having to be very choosy with the cases she takes on.
Sorry for sounding negative. I just wanted be honest based on my experience and what I know they are looking for. I'm no expert, so take my opinion with a grain or two of salt. I really hope you are able to find a solution so you can go back to school and get a job that's better for your health!
Take Care, Autumn
G
GoryLori
Guest
When I was really sick, I applied on my own (no legal help to advocate for me) and I was approved first time with retro benefits.
I then DECLINED coverage later on and took myself off SSDI.
With all my medical discharge reports, it was exactly what was needed to determine eligibility.
I then DECLINED coverage later on and took myself off SSDI.
With all my medical discharge reports, it was exactly what was needed to determine eligibility.
I have CF and so does my brother. I am now 41yrs old and my brother is 39. We both applied 11years ago around the same time, when I was age 30. The reason I got into SSDI is because I've been hospitalized for mental illness and found out that I'm bi-polar I SUPPOSE ;-). I've had multiple breakdowns do to life being tough. I too have had to support myself and have been a waiter for a little over 20 years but I started working even longer then that if you include my sophomore, junior and senior year of high school in movie theaters and a drug store plus when I was 13 I had a paper route. I got on SSDI because "mental illness" is proven to be debilitating and my brother never really was in the hospital nor did he have mental illness so they said his CF case was not debilitating enough. Since you are looking to pile on conditions to get approved it is a fact that we are deprived of oxygen to the brain possibly attributing to mental illness or even bipolar swings and also depression due to a terminal condition, plus adding a prescription for some psychotropic pills can definitely add more validity to your condition. The doctors might have you do blood draws to make sure the levels of toxins or I mean medications are high enough to be effective so being on pills might not be your thing but my CF doctor signs off on my disability case now and not my original psyche doctor so I think once your in, your in. I just got the word from the social worker at my CF clinic that it has become really hard for CF Doctors just to write orders for disability so do all you can to build your case! Hope this helps, God bless!
Hi Kmhbeauty,
They will also ask a lot questions regarding how much you were working: hours/days etc and during that time were there any accommodations made for your health: having to adjust shifts/less tables/something that would be a specific change for you that you wouldn't need if you were healthy. They will also ask if you are currently working in any capacity. This is where I was effected. Despite meeting CF requirements I was still able to work in some capacity and "though you may not perform at your usual level or in your current vocation, you still have the ability to work in some capacity." I am a manual orthopedic physical therapist. Its physical and I touch every single patient I come into contact with! So I had to appeal to my student loan broker and my mortgage broker to re-adjust payments until I get back to my former level of (awesomeness) function! CFF.org has links for lawyers who specifically help CFers get SSI and I doubt they charge a lot, if at all. I would urge you to at least consult with a lawyer because one miss worded question could mean denial. I worry about going the route of seeking not quite right medical diagnoses or taking extra meds. It is a system, but there have to be safer ways to play it. (And be patient, it took 3 months for them to contact me and start to work on my case and then another 2 months for me to hear my claim was denied. Though I hear some people wait over a year!) Hope that was somewhat helpful.
They will also ask a lot questions regarding how much you were working: hours/days etc and during that time were there any accommodations made for your health: having to adjust shifts/less tables/something that would be a specific change for you that you wouldn't need if you were healthy. They will also ask if you are currently working in any capacity. This is where I was effected. Despite meeting CF requirements I was still able to work in some capacity and "though you may not perform at your usual level or in your current vocation, you still have the ability to work in some capacity." I am a manual orthopedic physical therapist. Its physical and I touch every single patient I come into contact with! So I had to appeal to my student loan broker and my mortgage broker to re-adjust payments until I get back to my former level of (awesomeness) function! CFF.org has links for lawyers who specifically help CFers get SSI and I doubt they charge a lot, if at all. I would urge you to at least consult with a lawyer because one miss worded question could mean denial. I worry about going the route of seeking not quite right medical diagnoses or taking extra meds. It is a system, but there have to be safer ways to play it. (And be patient, it took 3 months for them to contact me and start to work on my case and then another 2 months for me to hear my claim was denied. Though I hear some people wait over a year!) Hope that was somewhat helpful.
Thank you everyone for your response. I do have bad anxiety Jeff so I am going to look into that. I found out I got accepted into one of the programs. I am so thrilled but I don't know how I am going to live while I am in the program. It is one year full time M-F 730am-430pm and a hour and a half drive each way plus homework. There is no way I can work for this year while in the program. Now that I got accepted, do any of you have any suggestions on how to afford living expenses? I will have to quit my job in July or Aug before the program starts. I should be able to get on food stamps, any other assistance you can think of? It sounds bad but I have to get through this one year in order to have a career and survive in the future. Being a waitress isn't cutting it anymore with CF.
believingjesus
Banned
Kmhbeauty - I am so glad you were accepted into that program! Yay! You really are a fighter and you have to be. I'm very proud of you! Also I would do whatever you had to in order to survive and have food to eat and a place to live especially when you have CF. Do not be ashamed to take assistance when you absolutely have to. You have worked hard all these years and you know that being a waitress is not good for you and not cutting it. Before I quit my job to stay home with my boys and start my daycare I worked for a government agency. I know that they can help people with living expenses, a place to live, food, and also medical. You have to do what you have to do and you have paid in to the system for quite awhile. Good luck! and I will continue to keep you in my prayers.
Aboveallislove
Super Moderator
Hey,
a few thoughts. Maybe contact the state that work switch job training link at end. see if they have any suggestions for jb training funds. also many food banks might provide a little relief for the long year when things are tight. and id touch base with the various cf organzations lcally to see f they have any scholarship or job training programs. and from there the biggest part will likely be budgeting starting now to get you through the year...another thought is to start off immediaitely wi the program networking with yoyr ideal emploers so you have a job offer in pocket way ahead of the end of the prgram. that will make long year of no money more palatable. pm me if you want to chat budget stuff....thats one of my fortays. good lcuk and congrats on your acceptance to the program!
http://www.edd.ca.gov/jobs_and_training/Workforce_Investment_Act.htm
a few thoughts. Maybe contact the state that work switch job training link at end. see if they have any suggestions for jb training funds. also many food banks might provide a little relief for the long year when things are tight. and id touch base with the various cf organzations lcally to see f they have any scholarship or job training programs. and from there the biggest part will likely be budgeting starting now to get you through the year...another thought is to start off immediaitely wi the program networking with yoyr ideal emploers so you have a job offer in pocket way ahead of the end of the prgram. that will make long year of no money more palatable. pm me if you want to chat budget stuff....thats one of my fortays. good lcuk and congrats on your acceptance to the program!
http://www.edd.ca.gov/jobs_and_training/Workforce_Investment_Act.htm