To List or Not To List

12 Mar

Jody and I are facing what is proving to be one of the most difficult decision we’ve had to make thus far in our married life, which is whether or not to make him “active” on the transplant list.  If you’ve been following Jody’s journey you know that Jody needs a double lung transplant, this is indisputable!  But if you’ve been following my blog you also know that lung transplants are by no means a guarantee for a long-lasting life, in fact, statistics prove it’s quite the opposite.  Balancing the need for new lungs to live a quality life, verses a life cut short by lungs transplanted too soon is delicate.

We were first approached with the idea of transplant for Jody back in September (2013).  You might remember this emotional post.  After undergoing extensive transplant testing, Jody was seen for the first time in the transplant clinic in December (2013) where he was kindly told that despite having 30% lung function, and requiring Oxygen to breathe, he was too “healthy” for transplant at that time.  Again the doctor pointed out those scary statistics; that transplanted lungs only last an average of five years and only 50% of patients even live five years post transplant.

Since that time Jody has been followed closely by both the Cystic Fibrosis and transplant clinics.  It seems at every appointment those statistics are repeated to us over and over (as if, even after hearing them spoken only once, we could ever forget them).  Most recently we were told that 20% of patients don’t live through the first year post lung transplant.  This may sound like a low number if it’s the chance of snow being predicted, but it sounds like a high number when it’s referring to someones life (especially someone you love).  It really is hard to stay positive and hold onto hope for what sounds so hopeless (and with medical “proof” to justify the hopelessness).  Yet I understand the doctors need us to comprehend the seriousness of all this and to be able to make an informed decision, and I appreciate their honesty.

Jody and I feel as if we are on an emotional roller coaster.  First, we struggled to accept the need for transplant, and when we finally did, we were told it was best to wait.  Then we were forced to accept this less-than-ideal quality of life, so different from the life we’ve always known.  In addition, we’ve been approached with conflicting opinions from Jody’s doctors, all of whom we trust and respect.

Last week, when Jody was in the hospital the CF doctor (who also works on the transplant side of things), again suggested we hold off on activating Jody on the list, arguing that he didn’t want to start “the clock” prematurely, but acknowledging that Jody’s quality of life is not ideal.  However, he also mentioned that two of his colleagues (CF doctors as well) disagreed with him, believing that now was/is the time to list.  Ultimately, we agreed to wait, hoping to buy more time before the transplant becomes absolutely necessary.

Yesterday Jody had a post hospitalization follow-up appointment in the CF clinic.  The majority of the time at this appointment was dedicated to the question of whether or not to make Jody active on the list (we weren’t anticipating this being the focus of the visit).  The physician essentially told us that the team is in agreement that now is the time.  Yet it was a just a week ago that we were told the opposite (and it doesn’t seem like much has changed between then and now).  So how do we know when it really is “the time?”  According to the doctor today, it’s when living as you’ve been living is no longer worth it.  When ones quality of life has become basically, unlivable.  Naturally when talking about my husband and the father of my young children I want to jump up and scream, “What are you talking about?  How can life ever be ‘unlivable’ when you’ve got kids who desperately need a Daddy?”  Instead I sit there quietly and calmly, with a few tears in my eyes, because I know that I’m not the one living the unlivable life: Jody is!  My love for him needs to be greater than my fear of losing him.  Only Jody can know when he’s had enough; when the only option left for him is transplant, potentially shortened life and all.  It is true that transplanted lungs could give Jody a new lease on life, but in making this decision we need to be prepared for the worst and hope for the best.

And so, as I mentioned in the beginning, it seems we are facing one of the toughest decisions of our married life.  It feels like an end-of-life decision I’d rather not contemplate (unless maybe Jody were 85 years old and had lived a long, enjoyable life).  I fear making the wrong decision.  What happens if we choose to wait and Jody becomes critically ill, making it more difficult for him to recover from this major surgery?  What happens if we choose to list and he doesn’t survive the surgery or first year?  It’s a gamble and right now we have no answers.

We could use your prayers that God would guide us in this decision, and make His will clearly known.  We also pray that God would bring the doctors to complete agreement with one another.  Finally, pray for peace when the decision is made.  I know the enemy wants nothing more than to confuse us and to take away the fragile hope to which we cling.  We are under no pressure to make a quick decision and as always will fill you in when we do.  Until then, breathe easy, and appreciate those hard-working lungs of yours!

20 Responses to “To List or Not To List”

  1. Dianne March 12, 2014 at 8:34 am #

    Tiffany, my heart breaks for you all! You certainly have my prayers and those of my 2 prayer groups. I remember 12 years ago being told I had a 1 in 3 chance of my breast cancer reoccurring. I did not like those odds either. But God is the one who is in control of each of our lives. He could have taken me years ago but chose to leave me here longer for which I am very grateful. He does what is best in each situation although we may not understand it all. He does. Trust Him with all your heart. He will make His will known and He will help you through whatever may come. Love & Prayers, Dianne

    • CF Wife March 12, 2014 at 9:15 pm #

      Thank you! I always appreciate your words of encouragement.

  2. Wanda Usner March 12, 2014 at 9:02 am #

    Our family continues to keep you all in our prayers!!!

  3. Kelly March 12, 2014 at 9:59 am #

    Tiff and Jody, You are 2 of the strongest people I know, and dealing with this, I cant even imagine what it is you are going through. Its hard reading words of loved ones struggling so hard. And I know God will lead you in the right path. Please know that I pray for both of you often. And pray for peace and hope. I wish so bad I could be closer, but know that I love you both.

    • CF Wife March 12, 2014 at 9:16 pm #

      Wish you lived closer too! 🙂

  4. Megan March 12, 2014 at 12:00 pm #

    thanks again Tiffany for sharing your heart, your life. I’m so sorry for the heartache this disease has brought upon your family. I will be praying for you all and the specifics that you mentioned. Thanks be to God that He is SO much bigger than our fear!!!

  5. genablaine March 12, 2014 at 3:26 pm #

    Praying for clarity no matter what you all decide! I can’t imagine how hard this must be! Take care!!!

  6. Carole pape March 12, 2014 at 5:14 pm #

    Dear Tiffany, I learned of your devastating trial through Dianne and we have been praying for you since last year. You are on our prayer chain and our prayer group lifts you up every Fri. as well as during the week. Of one thing I am sure , we serve a God of Miracles and through His mighty power nothing is impossible, He has healed me of Lymphoma cancer and worked so many miracles in my life and no matter what trials we face it does not change WHO HE IS! Rest in him, trust Him and He will always work things for good in our lives even when it is hard to see.We will be praying for supernatural wisdom and discernment as you seek Him for these vitally important decisions. I know He will give you strength and wisdom far above your own. May He also fill you with peace and courage. God Bless you always.

    • CF Wife March 12, 2014 at 9:26 pm #

      Thank you, Carole, for the reminders. Praise God for the miracles He has done in your life. Yesterday I learned of a co-workers whose young adult daughter was just diagnosed with Lymphoma. I shared your comment with her to encourage her and remind her to rest and trust in Him as well. It’s comforting to know we’ve been held in prayer, even when we didn’t know it. Thank you!

  7. pllohr March 12, 2014 at 6:08 pm #

    Hi Tiffany and Jody, I’m sure you realize that especially after your postings there is a great influx of prayers sent to Our Father on your behalf. What I want you to know, is that in the midst of your decisions, and travels, and living out life, that you may ‘at that moment’ be presented before God in prayer for all your needs to be met. I sometimes wonder if God somehow orchestrates this because I know I can be totally absorbed in something and spontaneously feel the need to pray for you. Isn’t it nice to think the prayers are continual from all those who love you and not just ‘all at once’. Remember the word God sent you…HOPE. He is holding you both, relax in His arms.

    • CF Wife March 12, 2014 at 9:31 pm #

      It is wonderful to know that, and so are you! Thank you for being open to those gentle promptings from above and following them up with the necessary prayers. Keep them coming!

  8. Jana Martin March 12, 2014 at 9:26 pm #

    What a difficult decision to be faced with….I could feel the struggle as I read your post and my heart is heavy for you. I will continue to lift you all up in prayer. I really appreciate your posts…you are honest and real about what a struggle this is, yet you show so much grace and a beautiful heart in how you handle and process everything. May God keep you wrapped in His arms and continue to provide all that you need to face each step of the journey.

    • CF Wife March 12, 2014 at 9:36 pm #

      Thank you for continuing to read my posts and for the positive feedback. I’ve come to really enjoy blogging as a way to process everything going on. Someday I will appreciate having this to look back on and remember our journey as well as the encouragement we received along the way. Thanks for being one of those encouragers, and for your continued prayers.

  9. Pam W. March 12, 2014 at 10:08 pm #

    The clarity of your thoughts should give you much comfort that you and Jody WILL make the right decision for all of you at the right time. You are right that it is Jody who must decide when living becomes “unlivable” and you will be there to support him no matter the decision. James 1: 5-8 was our guide when making tough decisions. “If you want to know what God wants you to do, ask Him, and he will gladly tell you, for he is always ready to give a bountiful supply of wisdom to all who ask Him; He will not resent it. But when you ask Him, be sure that you really expect him to tell you, for a doubtful mind will be as unsettled as a wave of the sea that is driven and tossed by the wind; and every decision you then make will be uncertain,as you turn this way and then that. If you don’t ask with faith, don’t expect the Lord to give you any solid answer.” (NIV) We all know of your faith and God WILL direct you. We will pray for clear signs and united counsel to solidify your decisions. I am going to put your name at a prominent place in my kitchen so I can be prompted to pray throughout the day.

    No matter what happens, you must try not to look back and question the decision once it
    has been made, especially if you believe God did direct you. This is where Satan would have his glory…trust me, I know.

    I know I don’t need to remind you to savor today. You are stronger than you think…and Jody is one lucky man to have such a loving and dedicated wife.

    • CF Wife March 14, 2014 at 12:01 am #

      Thank Pam. I was especially struck by your advice to, “Not look back” once we make the decision. I can just image how Satan uses that to confuse and bring doubt and regret. Thank you for that reminder. Thanks also for putting my/our name in your kitchen and praying for us. It means a lot that even in your own grief you care for and remember us.

  10. Marilyn Titter March 13, 2014 at 2:47 pm #

    Jody will know, and when he does he will need you to say,” ok, I am there with you, I will have your back always and forever.” You can’t wait so long that the rest of his organs are too compromised. He will know that if he can no longer get off the couch to get to bed without extreme effort it is time. You always have my support, and i will be there for you.
    You all are in my prayers.

    • CF Wife March 13, 2014 at 11:48 pm #

      Your words bring calmness, and I trust they will ring true in our lives. Thank you!

  11. Ruthie March 14, 2014 at 2:24 pm #

    Words aren’t coming to me, Tiff….only an abundance of tears as I think of the decision that is waiting to be made.
    I’m asking the Lord to bless you both with direct insight and clarity on His plan for your lives as you make what feels like an impossible decision. And once the decision is made, I pray it will be followed by an unexplainable peace…and as was mentioned before – no looking back.
    Thank you for taking time to share and allowing us the privilege of praying for you!
    I love and admire you both so much!


  1. Officially Listed! | CF Wife - March 28, 2014

    […] active on the national transplant list through UNOS.  His actual list date was March 25th.  In my last post I told you how we were having a hard time making this decision, and that Jody’s doctors were […]

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