Medicare and Kidney Disease

Donor and Recipient - Thank you Sarah!

Well, Sarah is right, I have been a slacker.  It is amazing to me how busy my days are despite the fact that I am not working! I must tell you, I was blown away by Sarah’s post from 11/12.  I am honored and humbled that she would do this for me.  I also want to put a huge official “thank you” out to the rest of you who volunteered to be tested: family, friends and strangers.  I had almost 40 people who were willing to donate a kidney; we crashed the living donor system.  I am overwhelmed by the support and will spend the rest of my life living up to the honor Sarah and the rest of you have given me.

Ok now that that is off my chest, I want to report I am doing really, really well.  My creatinine was 1.11 on Monday, red blood count up to 33.  I am getting more energy, starting to try and be more physically active.  Incision is much better.  I still feel shaky and do not sleep well from the drugs but hopefully tomorrow we will start tapering the prednisone a bit and that might help.   Tomorrow is my last dose of eculizumab, the drug to prevent the HUS from developing in the new kidney.  The next month once the drug wears off will be telling and we will monitor me closely – probably twice a week blood tests at least for the next 4-6 weeks.  If all looks good after that, we will drop down to testing once a week for the next 6 months to a year.  I will get the bladder stent out in 2 weeks and my perma-cath out in a few months, once we are sure that I will not need more plasmapheresis.

On Tuesday I signed up for Medicare.  There are currently four parts to Medicare.  Part A is the hospital coverage and has no cost.  Part B covers the professional component and there is an income-based sliding scale premium.  Part C is what is known as Medicare Advantage or Medicare Managed Care.  Part D is the newest part and is Medicare drug coverage.  As I mentioned in my last post, as an ESRD and kidney transplant patient, I am eligible for Medicare.  I have great insurance through WellPoint however so why would I want to enroll in Medicare?  Well what I have learned is that I am eligible for Part A and B for 3 years (hospital and professional coverage), which would be secondary to my employer-based insurance, BUT as long as I elect at least Part A now, my immunosuppressant mediations will be covered under Medicare for as long as I live.  This is obviously very important.  The immunosuppressants will cost thousands of dollars per month and if I ever were to lose my insurance, this will ensure that I can keep my kidney.  This life-long coverage is a relatively recent change for Medicare and the reason is exactly that – to protect the investment in the transplanted organ.  In addition, if I did not join Medicare now, when I am eligible based on age at 65 or 67 or 69 (assuming it is still around when I am that age), my immunosuppressant meds would be covered under part D rather than part B, which would be much more expensive.

So I will get Medicare, Part A only, which means it will only ever kick in if I am in the hospital and it is secondary to WellPoint.  I won’t get Part B because I don’t need the coverage now and the premium cost would likely be more than any benefit I will get.   My drug costs will be covered and hopefully Brutus will be with me for a long, long, time.  I am shooting for twenty years at least!!


3 thoughts on “Medicare and Kidney Disease

  1. Andrea Burnstein

    Lisa you are amazing, I have been reading about your journey, and I am inspired by your strength, love, and surrort you have. I hope each day you feel stronger.
    I have a friend that had a transplant, her husband was the best match for her….7 years later she is doing good, she is older than us, and that does make a bit of a difference.
    May G-d bles you with all you need.

  2. Lisa, it was great to see you Friday. And you look terrific. You are getting stronger by the day, and I’m so impressed with all that you are juggling: two beautiful babies, Mr Binkley, a house, a job and blogging so that others can follow your story. Truth be told, we are honored to know you and are strengthened by all that you do. Have a wonderful Thanksgiving. One of these days I’d love to meet Sara too. Oh, and BTW, I rooted for Ohio State and your buckeyes on Saturday in honor of Brutus. Here’s to health and healing and

    • thank you helen not only for helping with the babies and for staying overnight but for rooting for OH. As a fellow big 10 member (OK maybe the gophers don’t really qualify for the big 10 any more) that is truly going above and beyond the call!!

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