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  • Last year I received my letter telling me about the increase back in Sept. and  since I hadn't heard anything this year......thought I was going to get a break :(  Wrong, I received my letter yesterday.   

  • Thank you so much for the post with links.  I will review and see how to proceed.  Short Term Disability is a program my employer offers.  It is part of the FMLA program but for yourself not a family member.  I have up to 12 weeks in a rolling calendar available to use.  I use sick time or vacation time for the first 5 days and then will receive compensation at a prorated rate weekly but most importantly will keep my benefits and job until I return.  I do  not know what will happen with me next, but at least I can have some time to make a clear, educated decision based on the way my health is without the stress of having to go to work everyday and adding more stress. 

  • to apply for social security disability (SSD):

    Supplemental Social Security Income (SSI)

    Benefits for people with disabilities:

    Information on mental claims for disability:

  • Susan, I don't know what short term disability is, but you can apply for social security disability, and if you get accepted, you automatically get Medicare two years later. They don't only accept physical reasons, but mental as well. This is one of the reasons the application is so long. There are other poverty programs like SSI, Medicaid, food stamps, etc. Personally, I went on SSD a few years before my transplant, and I am still on it. I am now 64, and have Medicare health insurance and a monthly Social Security check, which isn't enough to live on, but it sure helps. I love the $104 medical insurance. When I went on disability I just called Social Security and they sent me all the forms.

    • Jack, do you know anything about the Medi-Cal program?

  • My question is what to do now?  I went back to work after kidney transplant 3/29/2010.  I was out for 3 weeks to rehab and went back.  Now 3 1/2+ years later I am struggling at work.  I am a customer service rep at a bank so my job is not physical, but mental.  I am longer to do this job between my apathy and the stress of the job itself and the environment.  I am 53 years old.  I went on short term disability yesterday.  I don't know how to proceed.  Has anyone gone back to work after transplant to find out later they just don't have the strength to do the job anymore?  I would appreciate any information. I carry all the benefits for the family.  What will happen to me?  Can I get SS?  Can I get some government insurance?  Thanks!  Sue

    • What I do know is that you have to have worked the last 5 quarters in order to get Disability.  What happened to me is that I stopped working.  I was chronically ill and didn't know what was wrong with me.  When I found out I was end stage COPD I tried to file for disability.  They denied me because I hadn't been working those 5 quarters previous to filing.

      So, whatever you do, get that 5 quarters in.  If you have done your five quarters, then file for disability.  If they deny you, get a disability lawyer.  You will get money retroactive from your first filing.  At least I did.  But, you don't want to be stuck on state medical like I am.  

  • Jay, I am not on prednisone either. My pulmonary MD has not helped with the weight situation either. He just tells me stories of other pts who have succeeded with more weight loss than what I require. I weigh about 195 and Duke wants me to be below 163. I wonder if all transplant facilities have the same requirements?
  • Hi Jay, no I do not retain CO2. Yes, I use 2 liquid tanks at PR, each on 15 liters. 1 with oximizer, and the other tank hooked to. Non-rebreather mask which I wear on top of the other cannula. If I did not have the liquid, then I wouldn't be able to leave my home for any reason. Medicare does not seem to care whether a person leaves their home or not. I spoke to Medicare last week but the employee did not offer any suggestions. I plan to file a complaint.
  • Hi, Lola,

    Very sorry to hear about your troubles with Lincare. With all the political pressure from the conservatives in congress, there have been many changes in Medicare's DME program. Most areas of the country must use the Competitive Bidding Program, which limits who you can go to for your O2 and supplies, but they must service your needs. Medicare says that if you are having any issues getting your oxygen, you are supposed to call 1800Medicare, and they will do something to get you help.

    Since you are now near the end of the 5 years, you should be able to switch oxygen providers, and it also sounds like your current provider is not able to fill your needs anyway, so you need to report them to Medicare. Have you tried calling Medicare, or has your doctor come up with any recommendations? If they are not able to help, you should look for another doctor,

    More and more companies are converting people away from LOX, since it is so expensive, which is unfortunate, but there's really nothing we can do about it. However, if you really need a very high oxygen flow, your supplier is supposed to help you. I know a couple of people who use over 15 liters when exercising, and they 'T' (or 'Y') tanks together and put them in a rolling cart so they can exercise. I have to admit that I've never heard of anyone needing 30 liters of oxygen. That doesn't sound right. Are you retaining CO2? It sounds like there may be other issues if you require that high a flow.

    You should discuss this with your pulmonologist and he should be able to prescribe the needed flow for you, and your supplier is required to fill those needs.

    If they won't put you into a transplant program due to your weight, you should also discuss this with your doctor to see how he can help. If the main reason you are not able to lose weight is prednisone, maybe he can take you off all steroids to help you.

    If you are not familiar with using a "Y" connector to combine oxygen sources, I put an article on my server with links to photos which should help:

    Jay Lackritz   -  Double Lung Transplant, NYC, May, 2007

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