Archive for the ‘kidney transplant’ Category

  • FAITH – The Journey to J.J.’s New Kidney Part 1

    Date: 2018.01.09 | Category: Jessica, kidney transplant

    Hebrews 11:1  Now faith is confidence in what we hope for and assurance about what we do not see.

    I feel like I should share this story of walking in faith and God’s grand provisions to give Him glory, BUT these stories are hard.  How do you praise God for this answered prayer for J.J. when you know it meant unanswered prayers for someone else?   Somewhere parents weep for their child who they said goodbye to and because of their selfless act our J.J. gets a second chance and we get to celebrate.

    My friend, Amy, said it well when she said, ““Organ donation is like adoption, isn’t it? That for a joy to happen…..a deep and profound sadness has to first happen as well.”

    We’ve buried a child.  I know the pain that brings.  Kyle was wanted.  He was planned.  He was celebrated.  He was also born too early. We prayed for healing, our family prayed, churches prayed and yet Kyle died.  Why? Why would a child that a family wants so badly die, but other children live and are left to die?  Why would ANY child die?  How can you make sense of any of the unfairness in this the world? I don’t have the answers and have accepted the fact that I won’t have the answers this side of heaven. All I know for certain is that I trust in a perfect God whose thoughts and ways are way beyond anything I can comprehend.  A perfect God who doesn’t make mistakes.  A God who can make good come out of the bad.   I believe God didn’t mean for that child to die.  Just like God didn’t intend for our children to need a Plan B for their parents.  Profound sadness leading to our great joy.  It’s too much to bear sometimes.

    During our last nephrology appointment, we were asked to talk to the transplant team about listing JJ on the active transplant list.  JJ had been listed as inactive, accruing time, for almost a year, and they felt like it was a good time to list her and be very selective in the kidney that we accepted.  The doctors were pretty insistent about listing her now. They went through all the information about dialysis and what could happen if she got one nasty illness. They agreed with us that she was the stablest she’s ever been BUT they still wanted to put her on the active list and be really, really selective.  They assured us that we didn’t have to accept any kidney we didn’t want to accept and if we weren’t ready to proceed, we could turn it down.  They felt like it could take quite some time to find the perfect kidney so listing her sooner rather than later would be better.

    We’ve had to make these hard decisions before with our cardiac kids. Do you proceed with the heart surgery hoping to extend the length and quality of their life for many, many more years and risk that they may die in the process?  Is the risk worth it?  Do you proceed hoping for healing and extra years with them or do you just enjoy the time you have left?  These questions are hard.  No one can tell you the right time to move forward.  No one can tell you what the right thing to do is.  There are no clear cut answers.   All you can do is gather all the information you can, pray, and proceed.

    This was where we were with J.J.  We were hoping to not wait too long so that she would have to start dialysis.  We didn’t want her to be even more ill when we proceeded with the transplant, but we also selfishly wanted to enjoy the time we had with her because major surgeries are always risky and their are no guarantees.  We knew she had had some psychological difficulties after her surgery in August and wanted to let her heal emotionally as well as physically before the transplant.  In the end, we decided to list her on the active list and be really, really selective.   We were told it could be months maybe even a year before the perfect kidney presented itself.

    On January 1st, after a short wait on the transplant list, our nephrologist called and said I know this is crazy but the transplant surgeon just called me. We have a donor kidney.  I know we said we would be selective and turn down any kidney that’s not perfect, BUT this kidney is a perfect match.  It’s a young donor so it’s the perfect size for her little body.  (Believe me when I say no one wants to hear those words…young donor.)   The kidney doesn’t have to travel far.  There are no antibodies to worry about.  This is the perfect kidney.  Would you please consider accepting this kidney?

    We were blown away?  The very first kidney that we were offered is the perfect kidney?  So soon?  Was this the right time?  Should we proceed?  What if we said “No” and never got another chance?

    We were called around noon, we talked and prayed, accepted the kidney at 1:30 and arrived at the children’s hospital at 4.  Talk about a whirlwind of emotions, but in the end when something this miraculous happens how do you say no?

    We were packing at home when we realized the fact that on the first of January Dan’s insurance changed through his employer. In all our excitement, we had totally forgotten this fact.  We had been approved for the transplant through our old insurance but not this new insurance.  The transplant staff was pretty sure that the new insurance would honor the old insurance’s approval but since it was a holiday, no one could confirm this fact.   Should we proceed not knowing if we are covered?  In the end we decided to trust that God, who had provided so well for J.J,, would continue to do so.  And He has…

    “We must cease striving and trust God to provide what He thinks is best and in whatever time He chooses to make it available. But this kind of trusting doesn’t come naturally. It’s a spiritual crisis of the will in which we must choose to exercise faith.”  – Charles R Swindoll