The Waiting

4 Apr

Photo credit: L@mees

It’s been a little over a week since Jody was made active on the lung transplant list, and the preparation has begun.  Ironically, it reminds me of what it was like when I was pregnant and waiting to go into labor.  I remember, especially towards the end of my pregnancy, all I could think about was when it was going to happen, and what it was going to be like.  Our bags were packed and we were ready to go just as soon as the baby, or rather, painful contractions would declare it was time.  We couldn’t wait for this new life to arrive.  That was 2008.

Six years later, we’re once again waiting for life, only this time it’s a second chance at life.  We’re wondering when and how it will happen.  We’re imagining what it’s going to be like.  Our hospital bags are semi-packed and we wait in anticipation for “the call,” much like waiting for labor to begin.  And just as I had special outfits picked out for our girls to wear home from the hospital, I recently bought Jody a fun and fitting “going home” shirt to wear the day he is discharged post transplant (I promise a picture when the time comes).  As we prayed for labor and our unborn child, so too, we are praying now for all aspects of this process.  I pray often for the donor who right now is living, but sadly, whose time on earth is short.  I pray for God’s perfect timing in all of this.  I pray for Jody’s surgical team, and the surgery itself.  I pray for the nurses and staff who will be taking care of him.  I pray for his recovery.  I pray for our children and ask for wisdom to know how to help them understand all of this.  I pray strength for myself, and that God would protect my health during all of this so I can be there for the ones who need me.  I also pray for a supernatural peace and calmness when we get the call from Hopkins for Jody’s new lungs.  When I think of that time I imagine feeling frantic; rushing around grabbing last-minute items, a huge knot in my stomach, a hurried goodbye to our girls, and a rushed 90 minute drive to the hospital.  Nothing about that sounds peaceful to me, which is why I ask God for His peace which passes all understanding (Philippians 4:7).  Please join me in praying for all of the above or however the Lord leads you.

I’ve been talking about “the call” so I should probably explain this a little more.  Up until four years ago lung transplants were given on a first come, first serve basis.  In other words, they were given based on how long one was on the list, and not the severity of the illness.  The problem with this method was that people who became critically ill died far too often because they were not high enough on the list to receive the lungs they needed to live.  Four years ago the system changed so that disease severity now trumps time on the list.  Lungs now go to the people who need them the most.  There is a scoring system, called the Lung Allocation Score (LAS), which determines priority for lungs when they become available.  Scoring is a bit complicated, factoring in many aspects of ones health and disease.  Body size and blood type also play an important role in the availability of and wait for organs.

When Jody was listed, we were surprised to learn that his Lung Allocation Score is moderately high at 38.5.  To put this in perspective, another patient with the same score of 38.5 was called for her transplant the day before Jody was listed.  This was a little shocking to hear.  For some reason, whenever I thought of transplant I imagined it being so far off into the future.  Clearly Jody is much closer to getting his new lungs than he or I ever envisioned.  Strictly guessing, Jody’s doctor feels it will happen somewhere in the next three to six months.  So now we wait… and wait.  We’re waiting for a phone call from Hopkins to let us know that lungs have become available for Jody, and telling us to get there ASAP.  Every time the phone rings, I find myself holding my breath, and wondering if it’s time to jump into action.  As with labor, I know that one of these days it will be time, and we’ll grab our bags and go.  We may not be bringing home a baby, but we are looking forward to new life; one where Jody is no longer held back by the chains of his disease, and where he can run, and jump, and leap, and breathe easily!

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8 Responses to “The Waiting”

  1. Kendra April 4, 2014 at 4:51 pm #

    Praying for peace (and the rest of your requests). Thanks for the update! We think of your family often. Sending love from the Gaschos

  2. Marilyn Titter April 4, 2014 at 6:28 pm #

    Praying for all of you, for all you are asking prayers for, plus for Jody to stay as healthy as possible. Hang in there.

  3. Calvin & Connie April 4, 2014 at 8:33 pm #

    Tiffany, This is so helpful in know what and how to pray. Sharon and us are waiting with you. Thanks, M om

  4. Pam W. April 4, 2014 at 8:34 pm #

    Thanks for educating us on the intricacies of a transplant … It is all really amazing and has prompted me to make sure I am listed as an organ donor myself. You have revealed so many ways to pray – many of which we may not have thought of. Thank you. Praying for peace for you during the anticipation of Jody taking deep breaths and feeling renewed energy for playing with his girls. We’re here for you!

  5. Paula Balliet April 5, 2014 at 2:52 am #

    Hi Tiffany:

    Thanks for the update. Glad to read that all is going well and as planed. Yes, I am sure the waiting is very nerve racking. You are all in my special prayers.   Hi to Jody and the girls. Take care                                                                                                          A Friend who knows                                                                           Paula

  6. Ruthie April 5, 2014 at 10:19 pm #

    It helps so much to know your thoughts and prayer requests! Thank you for sharing. We are continuing to stand with you! It was touching to me that you are also praying for the one who will be the donor! You continue to be an inspiration as you face this incredible challenge!
    We trust the Lord’s timing ~ and anticipate celebrating Jody’s new life with you!

  7. Hippie Shepherd April 22, 2014 at 5:04 pm #

    Congrats on getting on the list! Trust me it’s something you can never fully prepare for, not that that’s a bad thing. Leave it up to God and He will take care of everything. I am currently trying to get back on the list for a re-transplant. I had my first on in 2008 and started rejecting 2 years ago. At first I was content with the few extra years I got, but my loved ones convinced me that my journey was not over yet so I’m trying again. Good luck to you and your husband to get the call ASAP! 🙂 It is truly the biggest blessing to get a second chance.

    • CF Wife April 25, 2014 at 8:56 pm #

      Hi! Thanks for checking out my blog. I’m sorry to hear about your rejection, and hope you will be accepted for a second transplant (one you won’t ever reject). Until then, keep fighting!

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