The Dreaded Clock

14 Dec

I’ve been putting off writing this post.  Sometimes it’s nice to push things out of my mind and pretend all is well, that Cystic Fibrosis doesn’t exist in our lives.  But it does!  And so, if I must be brought back to reality, writing is a positive way for me to reflect on and process everything happening in my family.  I have enjoyed blogging and Monday (Dec. 16th) marks one year that I have been doing it.  Thank you for reading and following along on our journey, especially to those of you who have done so from the beginning.  Thank you also to those who consistently leave comments, it helps me to know that you are reading, and do care (that I’m not doing it in vain).  I hope that over the past year you have learned something about Cystic Fibrosis and what it is like to live with this invisible, incurable disease.

Now for an update on where things stand with Jody and his need for a lung transplant.  Transplant testing should be done by the end of the month.  It has been so time-consuming, taking what feels like almost all of my days off work, and we are looking forward to more free time once this is officially completed.  As these head-to-toe test results come back, I continue to be amazed at the way that Cystic Fibrosis effects all systems of the body.  Having said that, Jody’s tests have come back pretty “normal,” at least for a person living with CF (maybe not quite normal for you or I), and we are thankful for that.

This week we had our first visit in the lung transplant clinic.  Jody will now be seen routinely in both the CF and transplant clinics.  One of the doctors in the transplant clinic, we’ll call him Dr. M,  also happens to be a CF doctor (who we know and trust), and our appointment was with him.  At this visit he looked at Jody’s overall health: His lung function is stable at 30%, he is using oxygen intermittently, and he’s holding his weight.  It was Dr. M’s suggestion that we continue with the transplant process, because Jody DOES need new lungs, but that we wait to make him “active” on the list until a further time.  His words were, “We don’t want to start the clock before it’s too soon.”  That dreaded clock… I know all about that clock!  This is the clock that counts down the days of your life after a lung transplant, statistically speaking.  This is the clock that has been haunting me, day and night, since the doctors recommended starting the transplant process.

That day back in September when Jody’s doctor had the transplant talk with us I remember feeling caught by surprise.  I didn’t think Jody seemed sick enough to be discussing transplant, especially when I compared him to other CFer’s I know who are waiting for lungs.  But I trusted the opinions of the doctors and understood their concern that Jody was not improving from the lung infection he was fighting, and in fact, he was getting slightly worse.  Since that day I have struggled to view this transplant as something positive.  To me it feels more like the beginning of the end for us, as that clock ticks in my ear.  Being 32 years old, with five and three-year old daughters who need their Daddy, I’m not ready for the beginning of the end.

Going back to our appointment in the transplant clinic.  When Dr. M recommended waiting to make Jody active on the transplant list, we didn’t know whether to be happy or sad.  The quality of life we have as a family is not what we are used to and what we once had.  We can’t enjoy day trips together anymore, Jody can’t play with us out in the snow, and I have picked up more responsibilities around the house, as things have become harder for Jody, just to name a few.  We had finally accepted the need for a transplant, and were trying to comfort ourselves with the hope that this could indeed give us our lives back (despite how long it lasts).  Now, instead, we are going to wait for Jody to progressively get worse, worse than he already is.  While other wives are waiting for their spouses to get a haircut, or a promotion, I’m waiting for mine to start losing weight and the ability to breathe.  I get to look forward to watching him get worse before he can hopefully get better.  Dread is becoming an all-too familiar feeling.  On the other hand, I don’t want to prematurely start that clock on Jody’s life so I understand the decision to wait until it is absolutely necessary.  Neither side of the pendulum is ideal.  Jody will be monitored closely by the transplant team, and since testing is all but done, his status can very easily be changed from inactive to active on the transplant list when the time is right, however soon or far away that is.

Thank you again for reading my blog over this past year.  Please join us in praying that God would reveal the most perfect time for Jody to be listed for his new lungs, and for us as we emotionally prepare for this and whatever our future holds.

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”

Jeremiah 29:11

About these ads

16 Responses to “The Dreaded Clock”

  1. 1mandying December 15, 2013 at 2:43 AM #

    I hear that clock… good luck:)

  2. Anne December 15, 2013 at 5:19 AM #

    Your strength and positive attitude are amazing testimonies to the world. It is the good that comes from trials. Shalom, Anne

  3. Lisa Weems December 15, 2013 at 7:53 AM #

    Your writings are beautiful. You truly make it so easy to understand everything that is going on and I’m sure your blogs are read by all. Leaving comments can be hard, as words are hard to find. Jody is an exceptionally great person and it is so hard to accept all of this. You certainly do lend a lot of positive thoughts, which is the only thing that helps to deal with his illness. Your strength is amazing and You are a GREAT wife. I know how much Jody appreciates you.
    As always, we wish you all the very best!

    Lisa Weems

  4. pllohr December 15, 2013 at 8:08 AM #

    I read every single one of your blogs, Tiffany and marvel at the way you are putting this journey into words. It is evident that you don’t take one single day for granted, a lesson we should all put into practice. Prayers for all continue.
    Pat

  5. Dianne December 15, 2013 at 8:31 AM #

    Just to let you know I have been praying Tiffany and will keep on praying. My two prayer groups are praying for you too. You are such a beautiful family! Wish this wasn’t happening to you guys! How good it is to know the Lord and have Him to count on no matter what may come He promises NEVER to leave us nor forsake us. He brought me through cancer, depression and many other things. He will bring you all through these difficult days and He will be with you. Hang on to Jesus!
    Love & Prayers, Dianne Potter

  6. Pam W. December 15, 2013 at 10:04 AM #

    Tiffany,

    My heart ached as I read your post. It brought back memories of the very clock you speak of. But it also reminded me of the gift of an awareness of life and living in the moment that most people never come to realize.

    Friday, as I battled the crazy traffic to get to work (a 10 min drive on 222 turned into 30 min.), I had time to reflect and an image of God looking down at that crazy bumper-to-bumper 2-lane highway entered my mind. Was He weeping? Was He grieved at our quest to squeeze more seconds, minutes, and hours into our already too busy lives? Yes, you live with an awareness of the fragility of life and how quickly it can change all of your lives forever. Take this as a precious gift. Your family is in God’s hands. His timing is perfect. Stay only in the moment and find something in that moment to be grateful for.

    God gives a peace that is truly hard to understand and even harder to explain to others. I know that for me, that horrible ticking has passed….until the next human tragedy presents itself. Just remember…we are only “traveling through”. This is not our home. And, only GOD is in control. So rest in THIS moment in time. Enjoy this blessed Christmas season.

    I am praying for you and your family.

    Pam W.

    • CF Wife December 15, 2013 at 10:32 PM #

      Yes, when I can keep my mind “in the moment” I do much better. It’s easy to wonder into the future, so full of fear and unknowns, but this is what I try to avoid. I’m trying to think of the positives of the future; being able to live to the fullest and do things we’ve never done before. Having been there yourself, I take great comfort in your words. Thank you.

  7. lattelit December 15, 2013 at 4:21 PM #

    Hard post to write, Tiff. Even though things are so different for your family life right now, I am hoping that this “delay” is ultimately a good thing for you guys.

  8. shelly December 15, 2013 at 8:34 PM #

    Read it! :) wow, a year has gone by awfully fast! love you all!

  9. Kelly muiznieks December 15, 2013 at 10:05 PM #

    May god be with Jody and the rest of the family threw this difficult and long journey! Thank you Tiff for posting the process of what is happening with Jody, s lung transplant. I pray every day for you guys.

  10. CF Wife December 15, 2013 at 10:26 PM #

    Thank you all for the kind words and encouragement. It’s always appreciated, more than you know.

  11. Marian December 16, 2013 at 12:16 PM #

    Your continued strength amazes me. Thinking about you often, and praying for you always.

  12. Marilyn Titter December 17, 2013 at 9:59 AM #

    Oh Jody, I so know where you are coming from. Just know you are never alone, also know that even knowing what all can happen, everyone lives with the unknown, anyone can be snatched from us at any moment. That is the way life is, we live in a broken world, but the Lord is with us no matter how bad life can become, hang on to that. You just have a more real, reality to deal with for your little family. Knowing this, love hard, laugh as much as you breath, and live in the moment. For your family each moment is so special. Give Dr. M my love he is my hero of three years ago. I am surrounding you with prayers and love.
    Marilyn

  13. Patti Y December 19, 2013 at 10:51 AM #

    Faithful reader and prayer warrior over the past year.
    God Bless you all.
    Your Friends at Hershey-
    patti

Trackbacks/Pingbacks

  1. The Break’s Over | CF Wife - February 26, 2014

    […] healthy enough to withstand the surgery, and others feel he should wait, so as to not start “the clock” (on Jody’s life) prematurely; hoping he might bounce back from this infection, buying […]

  2. To List or Not To List | CF Wife - March 12, 2014

    […] 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 […]

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Follow

Get every new post delivered to your Inbox.

Join 129 other followers

%d bloggers like this: