My Two Favorite Dorks

My Two Favorite Dorks

Sunday, January 14, 2018

Patient Formerly Known As Disabled



In October, I celebrated my three year double lung transplant anniversary. I found out also around that time that my disability was being reviewed by the federal government. It is my understanding that it's now standard for all patients to have three years after transplant to remain disabled before review.

I completed all of the paperwork and sent it in in early December and have since been waiting to hear the decision. I thought I was a shoe-in. While my lungs have been healthy, I still have pulmonary appointments every three months to keep tabs on things and receive a monthly antibiotic nebulizer treatment at the Infusion Clinic. I also continue to have the same side effects from my anti-rejection medication that have plagued me for the past three years: memory and concentration issues, fatigue, etc. The anti-rejection med Prograf has given me high blood pressure (requiring two medications to treat) as well as slowly landed me into stage IV kidney disease (diabetes is also to thank for that.) I now see a kidney doctor every three months as well and hope to keep my kidneys working as long as possible before a kidney transplant would be needed. I also have the beginnings of diabetic retinopothy in my eyes due mostly to the high blood pressure and kidney disease.

Most of my health flare-ups over the last year, however, have been sinus related. My chronic sinusitis has been worse since transplant. I do twice daily rinses with saline, steroid and antibiotic. I see the doctor every three months. Even so, I have averaged a flare requiring antibiotics about once every three months. I have been so lucky that oral antibiotics still do the trick for me to treat these. My sinusitis also causes secondary headaches. And of course, my sense of smell is awful.

In addition to the above, I continue to see a dermatologist twice per year - although a couple of things came up this past year requiring more appointments. I see my diabetes doctor every three months. I see my transplant psychiatrist every three months or more.

In short, while I am relatively "healthy," on a day to day basis, I still have a lot of medical issues going on that require treatment and attention.

I received my letter from Social Security on Friday: We have determined that you are healthy enough to return to work, it said. But instead of panic, what I felt was relief. Let me explain.

Social Security and Medicare, while a gift to the people who need it most, is a pain in the ass.

Until Dec. 31, 2017, I was still on COBRA insurance, but Medicare had automatically become my primary insurance when I became officially "disabled" in 2014. Medicare makes everything so freakin' difficult. Yes, most things did get paid for eventually, but the amount of trouble it took to satisfy their requirements was maddening.

One example is with the continuous glucose meter that I wear for my diabetes. In order to get approved for Medicare to pay for my supplies, I had to start seeing my diabetes doctor twice as often, both my doctor and I had to fill out a bunch of paperwork, I had to get a special blood test, I had to (or was supposed to) not only use their sensors but also switch to their glucometer to test my sugars. And I wasn't "allowed" to check my sugar on my cell phone (which syncs with my handheld device - they are always exactly the same so that makes no sense!) because the cell phone version of the program had not been "approved." That's just a taste. Basically, Medicare takes someone who already has a complex medical life and makes it even more complicated.

Additionally, Social Security has dumb going-back-to-work rules. If I were to work at all while on disability, it would potentially raise a flag to be reviewed and kicked off. Legally you cannot make over about $1,100/month to stay on disability. All this is to say that my options while on it were to work an extremely minimal amount, to work a bit more doing something that was well below my earning capability, or to find a part-time job that had insurance, since working that much would potentially cause me to lose my Medicare. If all this is confusing, you're not alone in feeling that way.

But, here's the thing. It's actually the perfect time for this to happen, and from what I can figure, the effects on us should be minimal (assuming that my health stays stable.)
  1. I stopped COBRA on Dec. 31, 2017 and started on Todd's new work insurance on Jan. 1, 2018 (The end to my COBRA was fast-approaching anyway.) While it was previously not a great option to join Todd's work insurance because it was not that good, his company has now been bought by a larger one with pretty good insurance. There's no way to tell for sure how this will play out throughout the year, but our max out-of-pocket is very reasonable and so far our prescriptions have a $0 co-pay this year!
  2. Social Security currently sends me about $500 per month. I receive an additional $700 per month from private disability from Sun Life through my former employer, The Nature Conservancy. However, when I was first approved for long-term disability at TNC, I was awarded $1,200/month. Subsequently, after approval from Social Security, the money Social Security sent me was deducted from what I received privately. Now that I am no longer receiving Social Security, I should once again be getting the full $1,200 per month from Sun Life. So no loss of income.
  3. I actually do feel like I can work some now ( though not full time like the government believes!) Without the financial earning constraints of disability, I can find freelance or other work and not worry about how much I'm making. And I can work as much or little as I feel my health permits without the worry of losing insurance.
This is all good news! To be clear, this does not mean that I will be running out to get a job. I'll save this for another blog post but I have been making some changes in my life and I have a new plan for this year!

So here's to new years, turning over new leafs, and freedom to live without restraints.