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    • #22834
      Sheriden
      Participant

      I have recently filed for disability due to my PH diagnosis, combined with bronchiectasis, and am wondering if anyone else has any experience with this – as in, was it approved the first time through or did you need an attorney?

      This would be so helpful for me.

    • #22841
      V.R. Peterson
      Participant

      Most, if not all, PH patients have right heart failure. Many PH’ers report that having the doctor put “right heart failure” as the reason is an automatic approval.

    • #22845
      Brittany Foster
      Keymaster

      I ended up getting approved for disability right away. I was unable to work because I was oxygen dependent and it was too hard for me to leave the house and work in the profession that I originally chose and went to school for (special education teacher)

    • #22847
      Jennifer Beaty
      Participant

      Sheridan, I filed for disability in April 2018. It was a long drawn-out process. I was denied my first time so I found a SS Disability advocate. She was not an attorney. However, she was extremely familiar with the process. After the second denial, she requested a hearing in front of a judge. Luckily, the judge read every word that I had submitted on both questionnaires and determined that I did qualify. I received my back-benefits and my monthly check on November 22, 2019.

      Sorry for the long story; but my point is, find an advocate. My advocate’s pay came directly out of my back-pay. She handled all of my paperwork and necessary follow-up.

      Start soon. Good Luck!

      Jennifer

    • #22848
      Jennifer Beaty
      Participant

      V.R. Peterson. I think each state’s doctors that review our applications differ from state to state. I was asked to complete 2 different questionnaires. Each questionnaire went to a different doctor for determination. The judge stated that if either one of them had read both responses, they would have declared disability; but that was not the case.

    • #22851
      Douglas
      Participant

      One of the most important items that SSD uses to determine eligibility is the definitions under the Social Security List of Disabilities Blue Book. PH is listed under Section 3.09 “documented by mean pulmonary artery pressure equal to or greater than 40 mm Hg as determined by cardiac catheterization while medically stable’ in the Adult Listings (Part A).

      In other words, your doctor should produce the results of a RH cath and reference the appropriate SSD Section with your application. It will greatly speed up process. I did the whole application/questionnaire/Soc.Sec.Doctor visit, etc. by myself without an advocate or attorney and was approved immediately. If you do your homework and are able to do some research it’s not that overwhelming but if you can’t, get the help of an advocate or attorney. PH is a DEFINED DISABILITY and you deserve the assistance that you have paid over the years!

    • #22856
      Brittany Foster
      Keymaster

      Jennifer,
      That is really great advice about finding an advocate. I didn’t even think of that. The advocate that works for my insurance company is really good and I can imagine all the things a disability advocate could help you with if you know that this is offered to you. Thank you for this information

    • #22857
      Brittany Foster
      Keymaster

      I have to credit my doctors with probably really helping with the disability process more than I even realize. There was a lot of behind the scenes work that was done to originally get disability. I wonder what type of paperwork would need to be done to continue with disability as mind is for every 5 years and then another decision is made or I think it is the doctors filling out info if all remains unchanged.

    • #22916
      Cris Dingman
      Participant

      I am on social security disability for three years now, but do not remember if they told me when I would be reviewed. How does one find that out? Will I have to jump through the same hoops as the first time? And if so, will they send a letter saying the review is coming, or is it up to me to contact the social security admimistration?

    • #22920
      Ally
      Participant

      I filed in March 2017 and got my first check in August 2017 but my diagnosis was severe chf. My ejection fraction was 10-15%.

    • #22926
      Jimi Mcintosh
      Participant

      I just received information that SSA is considering changing the time
      Between Disability reviews to 3 years or less, whereas you and your doctors will have to provide new documentation. This is supposed to be part of trump’s plan to rein in government spending, along with limiting the “free meal” program for school kids, which for many maybe the only meal that day.

      It seems that our government is cutting programs for people with terminal
      Illness, hungry and trade programs to teach people skills. A lot of charities and foundations that have provided funds for cancer, ms, ph, and other rare diseases and illnesses, are being challenged, which may dry up donations and funding

    • #22927
      Douglas
      Participant

      To everyone that is worried about when the SS review will be done, let me share my experience. I applied for SSD for my PH in June 2010; was approved in December 2010 with a letter indicating “possible improvement” review in 3-5 years. that was close to ten years ago. This year I qualify for regular Soc. Sec. (same amount as SSD) and so I expect I got through the process without a review. My advice is don’t sweat the review process – if you’re sick, you’re sick and unless the results change dramatically, you shouldn’t have too much to worry about. Besides, SSA is sooooo understaffed that it is very likely you will go years and years before someone even looks at your file. The backlog of current applications is taking up most of their time.

    • #22928
      Brittany Foster
      Keymaster

      @crisincincy really good question. I am not sure exactly how that works but I know I need to find this information out myself too! I have it for 5 years and then I think it gets reviewed but I don’t think the review is the same amount of paperwork as the first time. I think it is more of the doctors writing something or filling out forms saying that your conditions are still the same and that they haven’t changed. But I don’t think you have to have that waiting period like when first filing. I would check with a disability representative though in your state because each state is probably different in what they require and need.

    • #22929
      Brittany Foster
      Keymaster

      @douglashogan Thank you for this! I am sure there are more people (like me) who get anxious about the process because the initial process really took a long time and I went without any source of income for such awhile that even the small amount that I am getting seems like a huge help compared to all that I was unable to do before. I was in the hospital most of that time and actually have been hospitalized more with the last few years than before even getting disability so I know it shouldn’t be too much of an issue.

    • #22930
      Brittany Foster
      Keymaster

      @jimi that cetainly seems like a lot of extra work for the doctors to do as well as for the patients to do which would probably require some sort of testing, documentation, etc and to go through procedures like that just to prove that we are disabled really isn’t right. Especially if it has already been established that we are or if our doctors state that the condition is permanent.

    • #22939
      Jimi Mcintosh
      Participant

      It is a lot of unnecessary work, and if it is designed to identify fraud, then it won’t work. I think government is too busy creating roadblocks, then providing for terminally ill patients. I got a bill from my oxygen concentrator supplier, whereas they had replaced a unit4 years ago, due to lack of parts and aging. SSI had rejected claim. It took months to get it resolved, they violated their own rules and the supplier agreement.

      It could all be an idle threat doing a campaign year, to show that Washington is doing something good or bad. I just want what I am entitled too, left to prove that I am not a drug offender, get the cost of vital meds at an affordable price. Receive the same benefits as other Cancer, Black Lung etc.

    • #22945
      Jimi Mcintosh
      Participant

      It is a lot of unnecessary work, and if it is designed to identify fraud, then it won’t work. I think government is too busy creating roadblocks, then providing for terminally ill patients. I got a bill from my oxygen concentrator supplier, whereas they had replaced a unit4 years ago, due to lack of parts and aging. SSI had rejected claim. It took months to get it resolved, they violated their own rules and the supplier agreement.

      This info is not intended to cause you stress, but to help
      You become aware of possible changes, the potential effect of you and what your rights are. Write or call your state and federal representatives. We need to be heard and given consideration for research funding, experimental treatments, transplants. Pending changes in how organs are allocated will increase for some large states and decline for others.

      It could all be an idle threat doing a campaign year, to show that Washington is doing something good or bad. I just want what I am entitled too, left to prove that I am not a drug offender, get the cost of vital meds at an affordable price. Receive the same benefits as other Cancer, Black Lung etc.

      From what I was told, it may require your latest Hearth Cath, 6 minute walk test and you medical team certifying that your condition has not improved to
      Make you work qualified. There-in is the potential problem, as to who certifies your ability to work. I could provide you copies of my horror story on the
      “Return to Work Program ( if you do not go to work (doctor not approved), benefits stopped. Go to work , make less than the cap, benefits stopped”.

      Hopefully this proposed change will get vetoed by congress or the senate. Like the wall, never getting built

    • #22965
      ronald cole
      Participant

      I can say just one simple thing. If you sit back and take the conservative approach you will get delays, excuses, and governmental nonsense. The simple fact is they, no nothing about us and how we suffer. We are just normal folks. I have bounced around for months. One day I said no more. Whoever I spoke to I did not ask, I told them I was sick and I wanted only what was due me by law and I wanted it now. The harder you push them, tell them they will be responsible for your demise, if they do not get you the help you need NOW. I did that, within in one week, I received everything and more, trust me. Yes, you can push them, unless you get a person who is kind and willing to work for you, then you MUST be your own advocate. Tell them to google your disease, and then tell you you do not need help. Tell them it is incurable and fatal. tell them to put one of their family members in your shoes, you will get help. I am sick, I just not have written, I am housebound with 15 hours a week of in-home nursing. My Catholic Church is bringing Communion to my home every Sunday.

    • #22967
      Jen Cueva
      Participant

      Hi Sheriden,
      There is a ton of helpful information here. I will “celebrate” 15 years with PH next weekend. I applied and was immediately approved. I have to credit my PH doctor at the time. I also keep a daily journal of my symptoms for months. I only gave them 2 weeks worth. But, I wrote how PH limited my usual activities such as walking to the bathroom, showering, cooking, cleaning, etc I was told by a lady at the SSD office that I could not submit that but the nurse manager said that I could. When the case manager called to tell me that I was approved for SSD, she said my notes helped greatly.

      I did not need an attorney or advocate, thankfully. Good luck.

    • #22970
      Sheriden
      Participant

      Jen Cueva, thank you very much, and thank you everyone for your help with this topic. I think it is helpful to have this thread here and I know I am finding it very helpful.

      I just had my first heart cath this week and suddenly I neither have PH nor an enlarged right ventricle. I am grateful those miraculously disappeared, and I still have debilitating conditions that remain undiagnosed – like a heart rate that is constantly too high and chest pain episodes that seem to move around and can have pain levels that go up to 9/10.

      So, my disability claim will go in without the most debilitating things diagnosed.
      Jen, I love your idea of attaching notes of what daily life is like, so they have more information.
      I am saying my prayers….

    • #22981
      Brittany Foster
      Keymaster

      @texas2018 I love that you are your own advocate and you are teaching others the importance of speaking up for their needs and what they deserve. I think it is right of you to speak your mind and tell them exactly how all of this has impacted your health. If you have a good medical team too (which I hope you do) Then they will also support this and help to be a voice for you. When we are suffering, it is hard to be a voice for ourselves and fight for the care we need which is why sometimes I need others.

    • #22982
      Brittany Foster
      Keymaster

      @jenc like you I did not need an attorney. When I was first applying they gave me an advocate or at least a contact person that I would communicate with, but my doctors did a lot of the work for me at that point. Have you had to renew yours at all or go through that process or filling our if you are still disabled etc?

    • #23013

      Oh man! Just thinking about this topic gets me soo fired up. 😤 I applied a couple years after diagnosis and stopped working. Of course, I get denied and I appeal. I stressed soo much over it because I didn’t know how else to explain my condition and my limitations any more than I did originally. Thankfully I was part of a support group online at the time and someone gave me info about an organization that helps people like me (us). Their representative helped me a great deal! I even had to present my case in front of a judge because that’s was SS wanted. Uugghhhh!!!! That was reeeeeaaaallll stressful for me too!! My rep said that according to my original documents, they should have approved me right away because of the results from my right heart cath and other tests. That got me real mad because the person looking at my claim probably didn’t read everything thoroughly. They just glanced at everything and denied it. Sooo… after sending paperwork constantly to SS and talking with my rep, we had my court date. My rep’s opening statement was facts about my test results and saying all of that falls under disability and whatever else category she said. The judge asked me one question as well as their court doctor. Only one question. Then she said some legal jargon and said case dismissed. My rep told me that my case was the shortest court hearing she’s every had. Haha. We had high hopes. And finally… months later, I got approved for SSD. It was such a long process for me that I hated every second of it. I recently did their follow-up questionnaire and said they have to review my case… again!!!! 😤😡 Ssooo I am angrily and anxiously waiting for my next instructions. It all sucks! My rep gave me some tips on wording my replies but I feel that SS doesn’t really care about our condition and how it affects working. It makes me soo angry that sometimes I wana just flat out say, “Just because I can walk around and still standing doesn’t mean my health is perfect! I can barely breathe or walk without feeling like I’m dying! I’m sorry my enlarged heart and straining lungs aren’t visible for you to see how bad and how hard my body is working just to stay alive!” Uugghh.

    • #23023
      Brittany Foster
      Keymaster

      @diane-enriquez-chung I can understand your frustration with all of this and I am so sorry for everything that you had to go through in order to get approved. Then to just be approved by the judge right away it was as if everything before that could have been easily prevented. Not to mention all the extra stress that it would cause you when your body is already going through enough. And exactly! just because I can stand doesn’t mean I can work. I have been in and out of the hospital more times than actually at home the last few years, that would NEVER hold up in a full time job with benefits or a career choice that I actually went to a 4 year school for and have a 5 year degree. It’s crazy!

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