Surviving

8 Dec

Christmas tree shopping

I can hardly believe we’re entering the second week in December.  I think I’m going to blink and realize that Christmas has come and gone.  Last week we went out and bought a real tree (which we had approved by the transplant team).  Pre-transplant, the cold weather was very bothersome for Jody.  As soon as he breathed that cold air into his failing lungs it caused his chest to tighten and elicited lots of intense coughing.  So much so that sometimes it even caused bleeding in his lungs.  Last winter I dreaded every time he stepped outside.  Few things scared me like the site of him coughing up bright red blood, standing helpless, waiting and wondering if and when it would stop.  People with CF have died from this alone; it can be very serious.  I used to tell Jody to wrap a scarf around his mouth and nose, I’d tell him to go straight to his seat (I’d buckle the girls into their car seats), and sometimes we’d even use his handicapped sign to park close to an entrance so he had less exposure to that cold air.  Often he needed to do an Albuterol nebulizer treatment after being outside to help open up his airways, relieving some of the chest tightness.  There are so many things we take for granted in life, like being able to go outside and breathe comfortably and effortlessly.  This winter is going to be different.  While I’m scared of the fact that it’s cold and flu season (and I’ve been warned that Jody could be admitted 10 times this year for various bugs and infections), I feel such peace knowing that he can walk out the door and breathe well.  No longer do I fear him coughing, no longer do I dread the site of blood spilling from his mouth.  It’s odd to not hear his cough anymore… but it’s wonderful too!  All that to say, aside from being cold, our hunt for the perfect Christmas tree went well; no oxygen, no shortness of breath, no coughing, no blood, and one perfectly green, perfectly fragrant six-foot Fraser fur.

Jody continues to make great progress, and his PFT’s are still climbing.  Last week at clinic he was up to 85.4% lung function.  Oddly, just two weeks after being lectured for driving and told that he wouldn’t be allowed to drive for six months, he was given the okay to drive again.  We don’t pretend to understand what changed their minds, nor do we question the decision since Jody feels ready and it will make our lives easier to have two drivers in the family again.

I have been back to work for about 2-3 weeks now and it has not been easy.  People ask me all the time how Jody is doing, and I appreciate that, he’s been through a lot and deserves to know that people care about him.  Unfortunately, that’s normally where the conversation ends.  Very few people ever think to ask how I am doing, really doing.  These past three months (nearly) have been anything but stress-free.  We’re finding that Jody has very little memory of his five weeks spent in the hospital which, for him, is probably for the best.  I on the other hand have full recollection of it all, including things that I have chosen not to share on my blog.  I’ve had very little time to process all of this as I have lived on survival mode.  The weight of ‘single’ parenting, care giving, working to provide for my family, housekeeping, chauffeuring, arranging babysitters and doctors appointment after appointment are heavy upon my shoulders.  Nearly every day off work is spent at some kind of appointment.  I have adjusted my work schedule when I can, working all kinds of shifts to lessen the need for sitters, at the expense of sleep.  Work in and of itself has been stressful lately with census surges and less than ideal staffing.  Jody and I have had very little quality time together since transplant and I’ve spent little time with friends and doing the things I enjoy.  All of this has taken its toll on me.  This entire experience, including the two years leading up to transplant, has certainly changed me.  I’m overjoyed with how well Jody is doing with his new lungs and words can’t describe how thankful I am for this gift, but just as it’s been hard on him it’s been hard on me too.  I’m dreaming of a relaxing vacation, just he and I, where the ocean is clear, the sand is white, and his scar is faded.  It will be a long time until this dream comes to fruition but I trust that one day it will, after all, isn’t that the point of this transplant, to enjoy life, to make dreams come true?  We may not be reaping the full benefits of Jody’s new lungs yet, but I know we will.  I know that my stress level will decrease, and one day (hopefully soon), life will be ‘normal’ again.  Until then, I continue to put one foot in front of the other and press-on.  Just like Jody, I’m a survivor!

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18 Responses to “Surviving”

  1. Anne Marcarelli December 8, 2014 at 6:50 am #

    Dear Tiffany, I have been praying special prayers for you since the start. Sitting vigil is one of the hardest things to do, even when we dearly love the person in the bed. My latest prayers are for a return to family life for you and your family. Jody’s ability to drive is a start. Hugs and continued prayers, Anne

  2. Sharon December 8, 2014 at 6:58 am #

    You are a strong woman and a survivor. I know you feel the weight of the world on your shoulders and this will soon be gone ,then not only will it feel strange not hearing the persistent cough but it will feel strange for you to take that deep breath and feel relaxed , that day is coming . God bless you and give you renewed strength each day .

  3. jamie December 8, 2014 at 7:06 am #

    Tiff, I’m proud of you for taking a moment/blog to focus on yourself. I think we all often forget about what a tremendously difficult task it is for anyone to walk alongside a sick/recovering loved one, and it’s an important reminder for us to take them time to check in on that person too. I pray often for you to have the strength to “do it all” day by day because I know it is remarkably stressful for you. What a wonderful gift you are to your family! They couldn’t ask for a more faithful, hard-working wife/mom!

  4. Christine Stahl December 8, 2014 at 7:15 am #

    If there is anything that the Parent and Preschool can do to make your life easier, let us know. We can pick up and drop Piper off. Also if it would help for her to be at school longer, let me know. We might be able to work something out. Praying for you and your family and Jody’s mom.

    • CF Wife December 13, 2014 at 10:27 pm #

      Thanks SO much Mrs. Stahl. We are so grateful for the ways that the preschool has supported us and we appreciate your offer. We’ll let you know if/when we need to take you up on that offer.

  5. Deb December 8, 2014 at 7:46 am #

    Tiffany, I do feel your frustration. You don’t know me but I am in your Mom’s small group & cleaned your bedroom when we were there for a work day. My husband was hit by a car while riding a bicycle. He has a Traumatic Brain Injury and needs constant care. My life the past 2 years is so much like you have described in your blog, from dealing with doctors & even similar decisions concerning meds & hospital procedures. I too am working full time & care giving full time. Sleep is precious & days off are filled with appointments. I live in survival mode one step at a time. I have found that i can use even small amounts of time to take a deep breath & remind myself that God is bigger than anything I am facing & receive a small glimpse of peace. Cherish the little moments to keep yourself sane. You will make it. God is just as concerned with the process as the outcome. Make the process your best.

    • CF Wife December 13, 2014 at 10:25 pm #

      Hi Deb, thanks for the comment (and coming to clean despite your obviously already-overloaded schedule).

  6. Dixie December 8, 2014 at 9:01 am #

    Yes, you are a survivor & a very strong woman. I am so thankful that Jody has you. What a blessing! I’m sure he really appreciates you too. I truly believe God will be answering your prayers & will give you the desires of your heart when He knows it’s the right time. Love you both!

  7. Candace Hansell December 8, 2014 at 9:17 am #

    I have told my husband for years now that he is crazy for marrying me knowing what the future was going to hold. I thank him everyday for deciding to take this journey with me. What you describe is exactly what he is feeling and we haven’t even gotten to transplant yet. He is one that always has to have things planned out and it doesn’t always work because we don’t know the next time i’ll go in the hospital. I can tell you from my perspective it is not easy being the source of the stress on our loved ones. I hope that you will be able to breathe a little easier in the next few weeks, months,…etc. I hope you get a little time for yourself soon as well. It takes an amazing person to handle a situation like this and you and my husband are some amazing people!

    Hope you and your family have a great Christmas!

  8. Sheryl December 8, 2014 at 10:11 am #

    Tiffany- you amaze me. You have so much right now….. I hope others see that also….

  9. j&m December 8, 2014 at 10:41 am #

    Hi! Thanks for shedding light on the feelings of a caregiver! We don’t often get this side of the picture. My son has CF and he is 2 years old.

    • CF Wife December 13, 2014 at 10:20 pm #

      Thanks for the feedback. I debated about writing this post but decided to go for it. I hope your son is doing well.

  10. Marilyn Titter December 8, 2014 at 10:45 am #

    I empathize with you Tiffany. You have a new normal. You do have some control over your life, you have verbalized it, and that in and of itself will make you feel better. You are being heard loud and clear. My prayers are with you. Call me, I will help you in any way I can and Jody, and the girls. My prayers are with you. Enjoy all the love and kindness Christmas brings. Fill your soul with happiness that the four of you are together. Take a deep breath and enjoy the little things like that 6ft Christmas Tree! Laugh at the silly things, and fill yourself with the wonder and magic of Christmas that your girls have! My prayers are always with you and hopefully you feel all the prayers going up for you all.
    Love,
    Marilyn

  11. venturabetsy December 8, 2014 at 12:52 pm #

    Thank you for sharing this, I am praying for you. You have been through so much.

  12. Cynthia Seeley December 8, 2014 at 6:11 pm #

    Hi CF wife,

    Although we have never met I know Kate Zook, and through her, became aware of your situation months ago. I have prayed for Jody as well as you and the children. I have rejoiced with you, and felt sadness in my heart at the disappointing times and set backs. I have kept up on reading your blogs and therefore, feel I know you all. But this recent post opened my eyes as to how all of this has affected you. It hurts my heart that you haven’t felt supported and cared for as you should have. I have faith that you have quite a “crown” awaiting you in heaven. In the meantime, what can I do for you as one Christian sister to another? I will fervently lift you in prayer as I will continue for Jody’s health to continue to improve. I also am glad that you were courageous in relaying your feelings as I will pay more attention in others in your situation. Love and blessings, Cyndi Seeley Sent from my iPhone

    >

    • CF Wife December 13, 2014 at 10:18 pm #

      Hi Cyndi, thanks so much for following my blog and praying for my family and I. It’s hard to know what to tell people when they ask how they can help because so much of the stress I feel is not something I can give up (work, doctors appointments, etc.). Encouraging words/cards to remind me that people care and are praying is always helpful. Thanks again for taking the time to read and comment.

  13. 1mandying December 17, 2014 at 2:57 pm #

    This was a great read, your fight is inspiring:)

Trackbacks/Pingbacks

  1. Remembering 9.15.14 | CF Wife - September 16, 2015

    […] at Johns Hopkins.  I was exhausted, physically and emotionally.  It was about that time I wrote this blog post.  The good news is I pushed through.  God strengthened me and slowly but surely Jody began to […]

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