Wednesday, November 5, 2014

Waiting for approval!

John went to Boston today to meet with his liver specialist. If you are just catching up, John has 2 liver diseases:  hemochromatosis and hepatitis C (HCV).  Because of the damage to his liver from these diseases and the damage from the multiple medications he has taken to treat kidney disease and kidney transplant, his liver is fairly damaged. Not damaged enough to need a liver transplant, but too damaged to receive the kidney transplant he needs to live. Limbo.

The good news:  hemochromatosis is fairly easy to treat, in involves bloodletting.  That disease is under control, and does not require further treatment.  There is now a treatment for the HCV which CURES patients.  It has been approved by the FDA.  This is a miracle treatment, it has the potential to save many lives.  The best sustained results are within the group of people with Genotype I HVC, which is John. Also, John started back at work this week. Hooray for good news!

The unknowns:  The HVC treatment has not been studied widely with patients on dialysis. The meds used to treat the HVC are filtered through the kidneys, so we are not sure how treatment will progress with the dialysis, which is an artificial kidney. Will too much medication be filtered out? Not enough?

John's doctor submitted his case to insurance today for the approval of the $84,000 treatment. He expects that we will be denied at first, and we'll have to fight. I am ready. 

We are so grateful for the ongoing support. The financial support from the online fundraiser has allowed us to hold onto our mortgage while John has been out of work on disability. In addition to the normal bills, the copays from multiple office visits and medications are stacking up, and the insurance covers only part of some services.  It takes a while to sort it all out and sometimes pushing back on insurance, but we end up with part of most bills. 

If when insurance approves the HVC treatment, and they cover the typical prescription benefit, our portion will still be about $17,000.  After that hurdle, we are planning for transplant.  That will involve missed work again, and potentially travel.  More on that later.

Thank you for keeping up with us here, that support is appreciated, as well.  Along with the snacks, texts, driving the kids, checking in, and the millions of other ways it shows up.  Thank you! 

Experiences like this have a way of bringing friendship and community into focus.

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