13.9.11

A lifetime of memories

My sister Ashley gets sicker and more fatigued as the days wear on and her body becomes more worn down.

And so I've been focused on fundraising for my sister Ashley's kidney transplant, including planning a huge carnival for this weekend. I haven't shared this, but her insurance denied coverage, so we've been numb and scrambling. We're currently in the appeals process, but we have no idea whether it will be successful.

I have learned a new term: bronchial obliterans. As in, obliterated bronchial tissue. As in, lungs that aren't viable long term. It hurts to acknowledge, but that horribly clinical term is a huge reason for the denial. Ashley's insurance is basically saying they don't want to pay for a kidney transplant when her lungs are going to give out sooner rather than later. They'd rather spend that money on a patient with the promise of a long life.

The situation is grim and morbid. We are hopeful and counting the many blessings life has given: the double lung transplant, thirty some years of more good health than bad, a community that has thrown its support behind our family.

And these two children who already have some pretty amazing memories of their aunt, and who love helping to raise money for her transplant. They will remember Ashley being healthy and vivacious, her spending lots of time with them when I needed to do something kid-free, her being so young and hip that people assume she's my daughter.

At the coast last week, Javi pointed across the Atlantic and told Bella
that "Ashley used to live right over there," referring to the years she lived
in England. Bella did not fall for it.

My children are being shaped in such a fulfilling and profound way by their relationship with this woman who may not see them into adulthood.

And that is a blessing for all of us.

***This post is part of Wordful Wednesday.***

18 comments:

  • blueviolet

    That insurance situation is infuriating! They're putting greater value on money than on a human life. I'm so sorry!

  • Kelly

    We're hopeful that the appeal will work. I don't mind them being good stewards of government money (she's on Medicaid ... you know, because no one else will insure her), but it's hard to see such financial waste everywhere and them decide to clamp down on people like Ashley.

    You can tell I have soapbox. Thanks for thinking of us!

  • debi9kids

    Oh my gosh!
    How awful!
    What can I do to help? My dad had a double lung transplant and heart valve replacement at the same time... I know the long road and the difficult wait.

  • Kelly

    @Debi - Ah, you do know our story. We have a donor and the medical team is in full support -- we just have to convince her insurer to cover the surgeries. And the $50K she'll need to pay out of pocket (which we're working on).

    We'll take prayers, positive thoughts, good juju -- whatever you can send! And if you know anyone looking for a tax write off, point me in their direction!

  • Life with Kaishon

    Oh my gosh Kelly. I didn't know. I am sorry I haven't been praying but I will pray right now. And every day until you let me know she is safe and happy and healed. Sending love.

  • Kelly

    Thanks Becky. You are a great friend.

  • Melissa

    My heart aches. Praying for a speedy and favorable outcome to the appeal.

  • Stacia

    Oh, Kelly! I hate the way insurance makes everything look so cut and dried. If only they could see how deserving your sister is and how precious she would count whatever time a new kidney could give her. You and Ashley are in my heart.

  • Kim

    Kelly - I so wish I could wave a magic wand and hand you $50K right now! I can't imagine how devastating this all is for you and your family. I hope and pray for the success of your fundraising efforts and for Ashley's healthy future!

  • Cheri

    So sorry to hear this news. With insurance the bottom line is always the almighty dollar. Best wishes for a successful outcome! You and Ashley are in my thoughts.

  • Kelly

    Thank you for your kind words and prayers. It really does help to know that people are in our corner, whatever the outcome.

    If Ashley is still denied, she'll be eligible for a cadaver transplant (versus the living donor who's ready to roll), meaning a wait of 5-7 years. We'll also be responsible for paying the $200K full price tag for the surgery. Unfortunately, most of that time will be spent in dialysis.

    We'll do what we have to, but there are some Part D issues that scare us -- like how after a certain amount, she'll need to pay out of pocket for prescriptions. We're talking about a girl who takes 80 some pills a day for a variety of issues (Cystic Fibrosis and transplant related).

    It's a mess, but we'll do whatever we have to!

  • Irela

    Praying for you, your children, your family and mostly Ashley. God Bless your strength.

  • Becca

    Oh I will be praying!

  • Christine

    Oh Kelly. I'm sending as much love and hope as I can muster. Please don't lose hope! But I am so glad to see that you can find some joy in all of this. You are an amazing family, I'm truly in awe.

  • Cathy

    Oh Kelly. Sisterhood is a wonderful thing. I hope you get to hold on to her for a long time.

  • BigLittleWolf

    It is infuriating that the insurance company can hold such power - and a life - many lives - in their hands.

    This is heartbreaking, and unconscienable.

  • { L }

    Wow Kelly, your quiet strength is so evident and very inspiring. I'm praying right now for your family. <3 What you all are going through is indescribable. My heart hurts for you.

  • Sofia's Ideas

    Kelly, I don't have the right words but I will say that my thoughts & prayers are with you & your family during this time...

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