What about Social Security?
Social Security is the "great experiment"--hated by old-guard anti-Communists but much coveted by the retired of the country. It can play a vital role in the support of a transplant candidate.
It is a smart move to apply for disability under the Social Security Administration (SSA) as soon as possible in the course of the illness. Typically, you will have been diagnosed, continued to try to work as long as possible while steadily deteriorating at an unpredictable rate, and at some point find doing so too difficult, at which time you go out on sick leave.
For the employee of a medium-to-large company with a group insurance plan, after a typical two-week sick leave, you will likely be moved to a short-term disability plan through a contracted insurance company for a period of up to six months. At the same time the short term plan kicks in, you will be transitioned into a COBRA extension of your company's group insurance plan. If you have Long Term Disability (LTD) insurance, that would then kick in after the short term plan runs out. It is during this time period that a couple of things will be happening--you will be getting very sick, and you will be wondering where the money will be coming from.
It is during this time that you should be initiating an application to Social Security for disability. While I forget the exact requirement, I believe it is after six months leave from work that you can apply for SSAD (check with your SS office for the details). There is a great deal of disagreement about the prospects of being accepted the first time around. It is considered by some to be almost normal to be rejected the first time you apply. If this happens, simply reapply. However, if you are really disabled, and by this I mean on supplemental oxygen, unable to wash unassisted, unable to cook, unable to walk for any significant distance without a recovery period, unable to dress unassisted, and so forth--which is typical of mid- to end-stage respiratory disease--then your chances are good that you will be accepted on the first try. You will, however, need your doctor to describe the nature of your disease and the extent of your disability for inclusion with your application.
The application itself consists of about ten pages of questions that ask about your ability to perform normal functions of life and living. It is not really a questionnaire about whether or not you can perform the job you currently have. Answer questions carefully and accurately, being attentive to the intent of the questions and answering them with the information they request. Tell your doctor that the letter you need should be an accurate description--basically testimony--of your medical condition and the impact it has on your daily life and your ability to live it. Then you send it all in and wait.
By the time you hear back, if you have LTD it has already probably kicked in, and if you are awarded SSAD, the Social Security Administration will first send you an award for the months of eligibility missed while they processed your application. At that point, you are legally required to notify the LTD company that you have been awarded SSAD, and will then be billed for the amount of benefit paid by SSAD for the period you have been collecting LTD. Bottom line, the amount you receive from LTD is negatively offset by the amount you are awarded by SSAD, so you cannot "double dip". Oh well, it was a thought.
If, however, like most people, you do not have LTD, then the amount SSAD awards you will be the primary income you receive. It is not much, unfortunately, but it is important in that the award date starts the two-year clock for your under-55 disability eligibility for Medicare. So whether or not you think it will be financially worth the effort required to apply for Social Security Disability, if you are of a transplantable age, it is essential that you try. For at some point down the road, Medicare eligibility will enable you to obtain affordable medical insurance and coverage for at least two of the most expensive medications you will need to take every day for the rest of your life.