The Hard Truth

17 Sep

Today was hard, really hard!  And so is writing this post.  This afternoon Jody had what was supposed to be his post-hospitalization follow-up in the CF clinic.  You might remember from my last post that he had been on a mediocre antibiotic regimen because his kidneys couldn’t tolerate the antibiotics he really needed to fight the infection in his lungs.  In between then and now his kidney function declined even more and they had to stop all but one of the antibiotics.  This bacteria, which really Jody has been fighting since July, has taken its toll.  A month ago Jody’s lung function was at 32%, today it is down to 28% (which is the exact number I was guessing ahead of time).  He is now short of breath with almost any activity, to the point that over the last few days I have felt like I was watching him suffer.  Treating this infection is complicated by Jody’s allergies, decreasing kidney function, and finding the right concoction of antibiotics.  To be honest, the doctors are a little unsure why he hasn’t been able to get better.  The concern is that if he doesn’t get better, he could get worse; I’m talking really sick.

Obviously this is not the direction any of us want things to go, his doctors included.  But we need to be prepared for the worst.  This lead the doctors to give us “The Talk.”  This is the talk I have been dreading since the day I fell in love with Jody.  Today we were told it is time to begin the transplant process.  Why was this so hard to hear?  Isn’t getting a transplant a good thing?  Well, statistics show that the outcomes of lung transplants are not too great (which is why they like to wait until it is absolutely necessary, sort of a last resort).  The average lung lasts five years, and only about 50% of patients make it that far out.  I don’t think I need to mention what the alternative to a transplant is, you can image for yourself.  Jody and I always knew this time would come, but after seven years of near perfect health we never dreamed his decline would happen so fast and when our children are so young.

Adjusting to this decline in health has been really hard on both of us.  It feels like our lives are being ruled by Cystic Fibrosis.  In addition to not being able to breathe, Jody feels like he can’t do anything (and really he can’t right now).  I think sometimes he also feels like he is letting our family down (even though he knows this is not something he can help).  I feel like I carry the weight of the world on my shoulders, being pulled in every direction.  I walk around in guilt for not being able to be there for my husband because of my responsibilities to our children, and to work.  It pains me to leave him lying time after time in the hospital without me, his spouse, at his bedside.  I detest  having to work when he is sick, and would much rather be taking care of him, but it would do us no good if I lost my job.  I feel guilty for breaking routines and sending my children here, there and everywhere.  I feel guilty for the burden being placed on those watching our children over and over.  My heart breaks for our girls who are too young to understand, and sometimes become upset when Daddy can’t take them outside or pick them up, or even read them a book.  And my heart breaks for Jody who is so young and talented, yet his body (or parts of it) is failing him.

This post may seem a little down, but it’s real, it’s raw, and it’s where we’re at right now.  We’re struggling… but we’re surviving.  We are trying to hold onto hope for our future.  There are those who undergo a lung transplant and do well, who live lives they couldn’t dream of before.  Lord let this be Jody!

If you haven’t figured it out already, Jody is back in the hospital.  We speculated this would happen and packed a bag today, “just in case.”  Jody jokes that we bought a Time Share at Johns Hopkins.  The doctors are going to start giving him stronger antibiotics as his kidney function allows.  But… if in time he continues to get worse, or if push comes to shove, they will forget about his kidneys and the damage being done, and they will hit his lungs as hard as they can.  If this becomes necessary and his kidneys fail, he would begin dialysis and list for a double lung and kidney transplant.  We don’t anticipate this happening but it was a part of “The Talk” we had today.  While in the hospital they will begin some of the preliminary steps toward getting on the list.  One positive thing I would like to add is that the doctor today was excellent!  He was kind, even comforting Jody when he became visible upset.  He took his time, and was patient in answering every last one of our questions.  He even checked back on Jody before he left for the day, just ” to see how we were processing all of the information he gave us.”  If we had to have “the talk,” I’m glad it was with him.

Please continue to cover us in prayer as the Lord leads.  In truth, we just want our “old” lives back.

20 Responses to “The Hard Truth”

  1. Karen Mast September 17, 2013 at 9:50 pm #

    Oh, Tiff. I was so afraid something like this might be your next update. I am so, so sorry you are Jody and the girls are experiencing this. I can’t imagine how difficult this is. Lots of tears over here for you. I will be praying for all of you.

  2. Jennifer September 17, 2013 at 9:55 pm #

    All of my prayers for healing and strength are with you and your family. I’m so sorry that you are being faced with such challenges and wish that they would disappear.

  3. Sheryl September 17, 2013 at 10:05 pm #

    Hurting for you…… You, Jody, and the girls are in our thoughts……

  4. The Gaschos September 18, 2013 at 1:14 am #

    Jody, Tiffany, Tabby, Piper… We love you & care. There are no words for how awful this is… We’re clinging to hope for you. So glad the doc was good. Thanks for the update.

  5. Bethany September 18, 2013 at 8:30 am #

    So so sorry, Tiff. Please know even if we haven’t kept in touch much, I am always here for you and your family.

    We are praying for you. Please let me know (or tell your mom) how we could help.


  6. Marilyn Titter September 18, 2013 at 9:57 am #

    Jody keep fighting, trust the docs, “Never give up. Go over, go under, go around, or go through, but NEVER give up.” I am praying for you, and JHH, that they find the right combinations of meds and your kidneys are protected. Tiff, I know right where you are, you can do this, you are strong and good. Your babies will survive this too. I am praying for you and the girls, and all who are caring for the girls when you are away with Jody. Call me. I’m in the phone book.
    Knowing your Pain,

  7. Beth September 18, 2013 at 10:23 am #

    Tiff I’m so sorry to hear all of this. I’m praying that Jesus will lay his healing hands over Jody and give him the strength to battle this infection. I also pray for strength for you as you struggle with working, taking care of the girls and being there to support Jody. You’re an amazing wife and I know you’re doing the very best you can. I’ll continue to keep you both in my prayers! Call if there’s anything you need!! Love you guys

  8. Lindsay September 18, 2013 at 1:16 pm #

    I’m so very sorry to hear this news. My heart aches for you. I am lifting your whole family up in prayers!! Praying for a miracle of complete healing….Lord heal Jody’s lungs and protect his kidneys! And praying God will give you and the girls amazing strength to get through this difficult time. I know there are no words to ease what is in your heart and mind and I cannot even begin to imagine how you and Jody and the girls are feeling right now. I know you are a strong woman and I know God will hold you during this time!! Hang in there! RJ and I are here for you and praying hard!

    Then Jesus said, “Come to me, all of you who are weary and carry heavy burdens, and I will give you rest. (Matthew 11:28 NLT)

    With so much love and hope,

  9. Stephanie September 18, 2013 at 1:24 pm #

    Praying for you guys. Dont forget always willing to babysit for weekend or I am off most tue and thur. Miah would love play mates. Stay strong god is in control

  10. Karla Weaver September 18, 2013 at 1:59 pm #

    Kendra sent me link to this blog and I also saw it on facebook through Jamie’s cousin Jenny Mull. Thank you for sharing your heart through the blog. My heart breaks…prayers going up to surround you and your family…

  11. penny September 18, 2013 at 7:24 pm #

    Tiffany praying for you and your family. I can help with the girls anytime evenings or weekends. Love you

  12. Pam Weaver September 18, 2013 at 7:37 pm #

    Tiffany, you are in my thoughts and prayers during this uncertain time. It’s hard to understand the pain and suffering we endure in this world, but God’s ways are not our ways and His thoughts are not our thoughts. I guess if we could understand it all with our little brains, our God would not be too big would He? We just need to trust and BELIEVE that He has Jody in His hands. The hardest thing to do is relinquish OUR control and let go and let God. Ultimately, only HE is in control. I am praying for God to intervene and help Jody get better, and for you to have peace and comfort. Children are really resilient…they will be OK with friends for now. Let that guilt go. You are doing all that can be done and you are much stronger than you realize. And with all of your friends, family and coworkers lifting you up, you will be even stronger! You WILL feel the result of the prayers for you and so will Jody. Your posts are so important – they help us to pray specifically and we need that. Thank you for letting us into this very personal journey. We all will walk along side with you. Pam W.

  13. Kristi B. September 19, 2013 at 10:51 pm #

    I’m so sorry to read this. We will be praying for you and your family. If there’s anything I can do to help or you need me to watch the girls, just let me know!

  14. Lori Harvest September 19, 2013 at 11:37 pm #

    Tiffany, So very sorry to hear this news…Just know that you, Jody, the girls, and your families are in my thoughts and prayers. Hoping for the best for him, as he’s certainly suffered and fought so hard. I’m hoping things will simply turn around…as you know they can! We’ve witnessed miracles…and these are the best Doctors, so I will think positive for you…things just have to get better!!! Take care my friend…

  15. Evangelyn Rodriguez September 20, 2013 at 11:16 am #

    Dear heavenly Father, I pray that you heal Jody’s body and make him whole! IN JESUS NAME!!!!! you can do all things through Christ Jesus who gives you strength!!! I will continue to pray for Jody and the family ❤

  16. Delwin & Lionnie Dienner September 22, 2013 at 2:54 pm #

    Tiff & Jody,
    We are keeping you in our thoughts and prayers. Praying Healing and wholeness in this situation!!

  17. Marian Ressel September 23, 2013 at 10:16 am #

    My heart aches for you. I can’t imagine having to deal with all you are dealing with.I will continue to keep you and your family in pprayer. Let’s storm heaven!!


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