Birthday Fun

5 Feb

On January 31st Jody celebrated his 42nd birthday, and birthdays are kind of a big deal in our house.  It’s not that we always celebrate them in big ways, but we try to make them special nonetheless.  Coming up with ideas to make a birthday meaningful is pretty easy for the kids, but I find it a little more challenging for my spouse.  Here’s what I came up with this year.

7:30 am:  This one was an unexpected surprise and completely out of my control, but thank you Jesus!  We woke up on his birthday morning to the most amazing sky which cast a purple glow on everything (especially the white snow).  I, of course, ran outside to capture it on camera.  This picture is unedited.

8:00 am:  Breakfast in bed.

9:00 am:  Catching Jody off guard by spraying him down with silly string while doing his morning nebulizer treatments.

10:00 am:  Presents of course.

11:00 am:  Late-morning tea, served in a “Happy Birthday” mug I bought at Goodwill for .50 cents.

12:00 pm:  The girls gave their Daddy a hand-made birthday card they painted just for him.  The youngest used her handprint for the cake, and the oldest used her fingerprints for the balloons.  The inspiration for this came from Meet the Dubiens.

1:00 pm:  Lunch and then the Boston Cream birthday cake I make for him every year, per his request.  And a family picture thanks to my trusty tripod.

2:00 pm:  Birthday banner fun & photos.

3:00 pm:  A small, silly gift to keep the fun going.  Something he can keep in his oxygen backpack for headaches when he’s out and about.

5:00 pm:  Another gift (after a relaxing two-hour afternoon nap).

6:00 pm:  Heading out for a date night.

7:00 pm:  Our reservations for dinner weren’t until 8:30 pm so I brought along his favorite candy bar for a snack (which I had bought ahead of time when I was planning for this day).

8:30 pm:  Dinner at Fenz, a restaurant we’d never tried before. (I gave him the option of choosing the place or being surprised.  He chose to be surprised).  If you ever eat there you must try the fried pickles appetizer.

9:00 pm: A final birthday card from me, including a handwritten note, as is our card-exchanging tradition.

That was the last of the tricks up my sleeve, or so he thought, but I had one more surprise.  The next day was Saturday and we had no plans.  But I (along with the help of some of his friends) had arranged a birthday “Guys Night Out” for Jody.  One of his friends showed up at our door at 5:10 pm and asked to take him out.  Slightly confused, Jody soon realized I was in on it when I pulled a shirt out of the kitchen cabinet for him to change into and handed him a container of cupcakes to take along.  Six of his friends met them for dinner at a restaurant and then they went back to another friends house afterwards (one who happens to have a 104″ projection screen TV in his basement).  I was really glad Jody could get out and spend some time with his friends, and I’m told they had a blast.

As you can see, making a birthday special isn’t about the money you spend, it’s about small gestures that say, “You matter.”  Sure gifts are fun, and do require some thought, but they can also be an easy way out of the celebration.  Taking the time to plan ahead is key and will make your loved one feel especially loved on their special day, at least it did mine.

This wasn’t a normal, CF related post for me, but I hope you enjoyed the break from the norm and were inspired to do something fun and special for your loved ones next birthday.  I’d love to read your comments of what you do to celebrate a birthday, and who knows, maybe I’ll use your idea next year.

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My Story of Hope

9 Jan

Photo by Collecting Wonder

In this post I’m going to share a story with you that I have shared with few people.  It begins a little over a year ago, in October of 2012.  This was the time when Jody initially began to experience shortness of breath and frequent hospitalizations.  It was the first time our lives were being seriously impacted by Cystic Fibrosis and I was having a hard time dealing with it.  I felt, in one word, hopeless.  It was hard to stay positive about a progressive disease with no cure.  Every major coughing spell (which happens a lot for someone with CF), was a reminder, a smack in the face, that we couldn’t get away from this disease.  I missed (and still do), being able to do the things we’d always done.  I believed the lousy statistics about Cystic Fibrosis and lung transplants.  I began to dwell on the negatives, fearing the worst for our future.  It was a hopeless feeling.  And so I began to pray that God would restore my hope, but I wasn’t prepared for the way that He would do it.

There have been few times in my life when I can say with confidence that God spoke something to me, this was not one of those times.  This time, God’s message to me was loud and clear.  It came in the form of random daily encounters, always with the message of hope.  I wish I had written these things down because I don’t remember all of them, but I’ll share with you some of the ones I do (in no particular order).

  • One day I was driving by myself in the car and was passed by an 18-wheeler with the word “Hope” written in big bold letters on the side of his trailer.
  • Another time I turned on the radio in the car only to hear the words, “… and here are your words of Hope for the day…”
  • One morning I was sorting through a box of childhood things my Mom had given me and found, at the very bottom, a daily inspirational flip book titled, “Words of Comfort & Hope” (I don’t recall having this as a child, nor do I know why I would have ever needed it).

    Yard sale mug & childhood item

  • I love to drink my coffee/tea in a big mug.  This summer I was browsing at a yard sale and glanced at some mugs a lady was selling (I love to yard sale shop, but have never looked at mugs before, I just don’t need any more).  Oddly enough, I could see that of the batch she was selling there was one big mug in the group.  I walked over, picked it up and had to chuckle when I read what was written on it, “Bee (actually a picture of a bee) hopeful, believe in miracles.”  It was probably the best 0.25 cents I’ve ever spent and has become my favorite mug, and a daily reminder.
  • One day I received a thoughtful message from a relative letting me know that she is praying for me for hope.
  • Another day I walked into a patients room at work.  Her bedside table was covered in books.  I asked if she likes to read (an obvious question I know).  Her response, having never met me before, was, “Yes, and I have a book for you.  It’s called “Hope Beyond Reason.”  She went on to explain that it was a book about a pastor who had cancer and wasn’t expected to live, but did.  She didn’t know my story.  One of these days I’ll get around to actually taking her advice and ordering the book.

There were more encounters like this, they happened often, and I couldn’t get away from them.  I knew God was trying to tell me something, and even though I had prayed for hope, I still rejected it.  As God spoke to me, I spoke back, pointing out those ugly statistics and grieving for others close to me who had lost loved ones far too soon.  But the messages continued until one day, after yet another sign, I surrendered the fight.  I remember literally saying aloud, “Okay, God, I get it!”  And you know what happened?  The messages/encounters instantly stopped.  After a month or two of signs from God and resisting His message, He knew I had finally gotten it and accepted it.

Receiving God’s message in my life was actually the easy part.  Living it out was, and still is, the hard part.  Jody will continue to get sick, sicker than I’ve ever seen him.  Both my responsibilities and stress level will increase.  People with CF are still dying (just this past week another CF wife lost her husband).  Despite all of this, God is calling me to choose hope.  And so, I hope that the progression of Jody’s disease will be mild and that we’ll be able to accept and adjust to each new stage.  I hope that his transplant will come at the most perfect time, before he’s too sick, making recovery extra difficult.  I hope (and this is the hard one for me), that his transplant will be a success and that he will live far beyond the time that statistics say he should.

My reminder to choose hope

Am I scared to death of the “What if’s?” Absolutely.  There are many impacts of Jody’s disease that I fear.  Obviously I know that having hope doesn’t mean that everything is going to turn out the way that I want it to, it could be the exact opposite.  Regardless, I am working to turn my fear into hope.  I am choosing to believe that having hope in my life means that no matter what happens God is not going to leave me hanging.  As a reminder of all of this, I bought myself a “hope” necklace.  One charm is purple, the color which represents Cystic Fibrosis, and the other two charms create the phrase, “I will hope.”  When I put this necklace on, or when I look at it in the mirror, I am reminded to choose hope.  This is a work in progress for me, but it sure beats the alternative, which is hopelessness.

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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

Thanks, Chick-fil-A, Lancaster, PA

8 Dec

From our family to yours, thank-you, Chick-fil-A, Lancaster, PA

Yesterday was our big day at Chick-fil-A (CFA), Lancaster, PA.  If you read my last blog post or have been following us on Facebook you know that amazingly we were chosen by CFA as the recipients of their second birthday give-back celebration.  This meant that for every original, deluxe, or spicy chicken sandwich sold between the hours of 11am-7pm, CFA, Lancaster, PA would donate $1 to our Jody Needs Lungs transplant fund.  In addition they offered us their spinning wheel where people could donate $1 directly to Jody Needs Lungs for a chance to spin the wheel and win coupons for free food on their next visit to CFA.

After about two weeks of promoting the event, both CFA and us, the day finally arrived.  We had 23 volunteers lined up to cover eight hours of handing out thank-you flyers to all customers and also to man the spinning wheel (if you were on of those volunteers we owe you a BIG thanks!).  The morning started with radio station FM 90.3 WJTL on site with their infamous Kid’s Cookie Break program from 9am-12pm.  If you were tuned in you would have heard Jody and Jamie (our fundraising team leader) speaking on the radio a little after 11am.  It felt a little surreal to hear our story being told on the radio and handed out to every customer at CFA.

Jody and I were not present all day long but we were told that the dining room was packed much of the day.  We were touched by all the people who came out to support us, even people we didn’t know, but who knew about us.  At the end of the night, 1550 sandwiches were sold, and $927 were raised on the wheel.  We also received a few direct donations, bringing the combined total raised throughout the day to $2727!

Again we want to say thank-you to Chick-fil-A, Lancaster, PA for partnering with us, and for generously giving-back.  Thank you to all the employees who worked hard that day to keep the hungry mouths fed, and for doing it with a smile.  Thank you to our volunteers for giving up your precious time on our behalf, and especially to those who served outside in the cold.  Thanks to the many of you who shared this event, and to our friend Jamie for coordinating the day.  Lastly, thank you to everyone who came out, bought a sandwich, and took a spin on the wheel.  We felt the love and support yesterday and are one step closer to being financially ready when we get the call for Jody’s new lungs!

Below are some pictures of the day for you to enjoy (click each photo to see them enlarged & to make comments).  And don’t forget to show your appreciation to Chick-fil-A, Lancaster by “Liking” their Facebook page.

Chick-fil-A, Lancaster PA website image.
Jody & Jamie (L) on the radio with Kid’s Cookie Break host, Lisa Landis (R)
Ready for some chicken!
Chick-fil-A lunch at home
Lined up to spin the wheel
The man of the hour
Packed dining room & excellent Chick-fil-A staff member
Showing our Chick-fil-A pride

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Exciting News… Please Share

21 Nov

Screen shot of our new website

It’s time!  Time to officially launch our new website, JodyNeedsLungs.com.  This website was created at the suggestion of our fundraising team and it’s purpose is multifold:

  1. It’s a place for us to share Jody’s story, and of his need for a double lung transplant.
  2. It creates awareness for Cystic Fibrosis by explaining what it is and directing people to the CF Foundation for further learning.
  3. The “events” tab will fill you in on up-coming fundraising events (read below for our exciting news about this).
  4. It links back to my blog for people who want to follow Jody’s journey to transplant and beyond.
  5. Donations can be made directly on the site which will go towards helping us be financially prepared for the many out-of-pocket expenses which will be incurred after Jody’s transplant.

This website was a labor of love by friends who sacrificed time and energy to create it. It involved taking pictures, creating a logo, writing the pages, building the site, and lots of back-and-forth emails and editing.  The color purple was chosen for the theme because it is the color generally used to represent Cystic Fibrosis, and the wood effect also correlates with Jody’s love of woodworking.  It was a lot of work, but in the end it was worth it!  We couldn’t be happier with how it turned out! We believe this site will be essential to our fundraising.  If you haven’t already checked out the site, please do so.  Click around, read the pages, and give us your feedback.  Sing your praises to those who sacrificially gave of themselves to create it.  But don’t stop there, WE NEED YOUR HELP to spread the word.  “Like” the webpage and share it on your social media platforms.  We were blown-away by all the likes and shares on our Facebook page and we hope you will do the same with our website.

Now for our super exciting, mind-blowing, unbelievable news!  The good people at Chick-fil-A, Lancaster, PA got word of our story, and fundraising need, and reached out to help!!!  December 7th marks their second year here in Lancaster, and they are busy planning a big “birthday” celebration.  Each year on their birthday they like to give back to the community.  Last year they chose to give towards the Water Street Rescue Mission, and well, you guessed it, this year they chose US!  We are still trying to wrap our brains around this one.

Chick-fil-A, Lancaster, PA event promo (front/back)

On December 7th, from 11am-7pm Chick-fil-A, Lancaster, PA will donate $1 for EVERY original, spicy, and deluxe chicken sandwich sold (note this does not include nuggets or other menu items).  No paper is needed, and this includes ANYONE ordering (even strangers who just need a quick-lunch break from their Christmas shopping at the outlets).

As if that’s not enough, they didn’t stop there.  Chick-fil-A, Lancaster will have their spinning wheel out for people to pay $1 per spin for a chance to win coupons for free food; 100% of the proceeds from this will go to us!  We are in need of volunteers to man this wheel for the eight hours it will be in use.  The time slots will be for 30 minutes to 1 hour depending on the amount of people who offer to help.  If you are interested, please email jamie@supportjody.com with your availability.

Lastly, WJTL radio station will be joining us for a portion of the day.  Who knows, it might even end up on the news or in the paper (I think this is being looked into).  We are so touched by this, still even a little in shock, and it’s hard to find words to express our appreciation.  God has truly blessed us!  Please mark your calendars and join us, along with Chick-fil-A, Lancaster, PA on Saturday, December 7th between the hours of 11am-7pm. We’re gonna have fun while celebrating their birthday, getting the word out, and raising funds so our family can be financially prepared when we get the call for Jody’s new lungs.

I know this is getting long but bear with me, I’ve got one more fundraiser to tell you about.  This one is especially for all you shoppers.  My wonderful co-workers took it upon themselves to plan this, and it’s happening soon, so don’t miss out.  THIS COMING MONDAY, November 25th, Homestead Furnishing & Gifts will donate 20% of everything purchased between the hours of 6-8pm at their store in Maytown.  Why not grab a girlfriend and make it a “Girl’s Night Out.” For more information, click here.  Hope you can make it!  And thank you to my co-workers for planning this event.

Alright folks, now we need your help to spread the word.  Please consider “donating” a status update by sharing our website and upcoming events.  We very much appreciate your help in getting the word out.

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Words of Thanks

5 Nov

This post is about giving thanks (and not because Thanksgiving is just around the corner, but because a thanks is in order).  Two months ago we learned of the need to list Jody for a lung transplant.  It was during this time we were also told to begin fundraising, and to start soon.  Raising money during this time was the last thing we wanted to think about, and a task that seemed impossible to bring to fruition.  When some of our friends learned of this need, they promptly offered to take this responsibility from us by forming a group of people willing to take on this burden.  This team has since named themselves our CF (Care & Fundraising) Team.  We know this is a big undertaking and feel words are inadequate to describe how much this means to us (and the weight it lifts from our shoulders).  If you have interest in joining our CF Team please email jamie@supportjody.com.

Upon learning of our need to start fundraising we were approached by the Breathe for Olivia organization, who offered to turn their yearly ham & cheese sandwich fundraiser into our first transplant fundraiser.  Breathe for Olivia is a local non-profit organization that raises money all year long, with 100% of the profits being given to the Cystic Fibrosis Foundation.  Last year this team raised a jaw-dropping $34,965 in hopes of finding a cure for CF!  Be sure to check them out on Facebook by clicking here.  There you can stay informed of future fundraisers which support finding a cure for CF.

By joining forces with team Breathe for Olivia our ham & cheese fundraiser was a huge success!  Wanna know how many sandwiches we sold?

It was a great start to our fundraising, and we are so thankful to team Breathe for Olivia for their generosity to us, and for making this happen.  We are also grateful to our friends and family who sold sandwiches, and to those of you who supported us by buying them.  You are all making a difference in our lives!

One more thanks I have to offer goes out to my cousin and her new husband.  They were married last month and we had the privilege of attending the wedding together (since Jody was finally out of the hospital and stable enough to attend).  We were quite surprised when after the wedding we were told by the bride and groom that instead of buying traditional wedding favors the money they would have spent on them was being given to us for our transplant fund.  We were quite touched, and there probably wasn’t a dry eye in the small room where they told us.  So J&A, thank you for the unexpected blessing!

I could go on and on with words of thanks and appreciation but I suspect you would tire of reading them (if you haven’t already done so).  Instead I’ll end here, with a heart full of gratitude for the many blessings we have received over the last few months, too many to list in this post.  We pray you are all blessed abundantly in return.

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Transplant Testing

26 Oct

This was a busy week of transplant testing for us.  We took three straight days and crammed them full of consults, exams, radiology studies, lab work, and more.  We also threw in there PFT’s (pulmonary function testing), and a CF clinic visit.  The most invasive test Jody had done was a right & left cardiac catheterization.  That one took up an entire day with us not getting home from Hopkins until 10:15 pm (only to turn around and leave the next morning by 6:30 am for more testing).  One thing that struck me this week is the way Jody does all of this without complaining.  Some tests (such as the heart cath) caused quite a bit of pain (which although less now, he still feels), others made him feel like he couldn’t breathe, a few were just gross (like drinking barium), some required being stuck with needles, many required waiting.  Not once during all of this do I remember hearing him complain!  I don’t think he could say the same about me if the tables were reversed.

One of the most informative things we did this week was to meet with the Transplant Coordinator.  I was looking forward to this meeting because I knew she would be able to answer questions and give us more details on the transplant process.  I sat there, pen and paper in hand, and by the end of our time I had a full-page of notes.  It was a good meeting but it was also hard.  We were talking life and death: of my husband and of a complete stranger.  Tears were shed.  Despite the emotions this stirs up, I was really glad for the information we gained during this consult.

Jody’s CF clinic visit went well.  His PFT’s (a measure of lung function) stayed the same at 28%.  They may not be great but I was glad they hadn’t dropped as they have been doing over the last few months.  The doctor also mentioned starting a prophylactic round of IV’s at home mid-late November to keep Jody as healthy as he can be for the upcoming holidays.  I love that he brought this up and I didn’t have too.  I’m so thankful for doctors who care not just about Jody’s lungs but his general well-being and the impact that this has on our family.  How I would hate to wake up Christmas morning with my husband in the hospital, unable to celebrate together as a family.  Obviously I know that there are no guarantees, and this could happen despite a course of home IV’s, but I’m all for the idea of doing what we can to keep him home for the holidays.

While we’ve knocked out a large portion of transplant testing we are not done!  I should explain that the reason for such extensive head-to-toe testing is because before they put new lungs in his body they need to make sure that he is otherwise healthy.  Wouldn’t it be horrible to undergo a lung transplant only to find out you have cancer of the liver which wasn’t tested for because they assumed that with the exception of your lungs were well?  That is what they want to avoid, hence the full body work-up prior to transplant.  We do not have the results of Jody’s testing yet, but will be given that information once it is presented to the transplant team for review.  Our hope is that anything found will be only minor and won’t hinder his ability to list for new lungs.

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Israel – Part II

14 Oct

Three months ago Jody and I took our long anticipated trip to Israel.  A lot has changed in our family since then with Jody being admitted to the hospital the day after we got back, and his lungs having taken a hard hit by this infection.  We continue to adjust to a new norm for our family where we can’t just pick-up and go like we used to.  Jody continues to remain stable since my last post, and we’ve actually been able to enjoy some fun family time together (thanks to the help of oxygen).

Now that things are going fairly well, it feels like the right time to finally share some Israel pictures with you.  These pictures can be viewed by clicking on the video below (although you might not be able to view it on a mobile device).  I’d love to hear your thoughts on what you liked or what surprised you about the Holy Lands.  If you missed my Israel – Part I post about the work we did in Israel, check it out by clicking here.

 

Lastly, I want to leave you with a helpful travel tip for all of you international travelers.  This awesome tip came from Jody’s doctor (who frequently travels out of the country for work).  If you’re on Pinterest, prepare yourself, this is “Pin” worthy!  This tip is useful when traveling to a country that uses outlets that are different from ours here in the U.S. (or vise versa).   The tip is this:  Instead of buying multiple outlet converters, buy one and pack a surge strip to plug into that converter.  This tip was great for us because it allowed Jody to do his nebulizer treatments and at the same time we could charge our cell phones, iPod, laptop, etc..  I hope you find this tip equally as helpful during your next international trip.  Bon Voyage!

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Good News at Last

3 Oct

Finally, some good news to report!  Jody has been home from the hospital for a little over a week and at last he is on an antibiotic regimen that seems to be working; he’s feeling a little better, and his kidney function is stable.  After two months without much improvement, it’s wonderful to see things turning around, however small or short-lived they may be.  I don’t mean to give the impression that things are great, but we have come to appreciate small improvements, and don’t expect greatness.  All things considered we had a good week, with our stress level thankfully a little lower.  Best of all, this week I didn’t feel like I was watching Jody suffer as I had a few weeks earlier.  How refreshing it was to watch him a little more “active.”  I’m so thankful these antibiotics are doing their job!

We had a follow-up appointment at Hopkins on Tuesday and unlike other times over the past two months, we didn’t pack a bag expecting to stay.  It was wonderful to ride home with my husband (since I’m accustomed to leaving him there and driving home alone).  The plan for now is to continue on these antibiotics for one more week.  Truthfully though, I’m nervous for him to come off them.  I love this small turn-around and am scared to see him turn back around in the opposite direction.  The fact that we are heading into cold and flu season also makes me quite paranoid.  I wish the only thing I had to worry about was our girls picking up colds at preschool.  Period.  Instead, I worry about the way that these simple colds will wreak havoc on Jody’s lungs and in turn, our lives.  As much as I would like to keep my family in a bubble of protection, I know I can’t.  All we can do is practice good hand hygiene, and pray that this fall/winter will be merciful on us.

You might remember from a previous post that the doctors wanted to do an overnight study on Jody to measure his oxygen level while he sleeps.  Well, the results are in.  As we suspected, his oxygen level is dropping too low when he sleeps.  This is most likely the cause of those headaches he wakes up with nearly every day.  To fix this problem we’ve welcomed a new member into our home, and Jody has affectionately named her, “Flo” (aka an oxygen concentrator).  This means that from now on, he will use oxygen while he sleeps.  Adjusting to the nasal cannula (the prongs that go in his nose to deliver the O2), wrestling/getting tangled up in the tubing, and the noise of the concentrator are taking some getting used to, but this morning he woke-up headache free!

“Flo”

In addition to oxygen at night, the doctors recommend Jody begin using it with activity as well.  While at our appointment on Tuesday he did a six-minute walk study with a physical therapist, which was required as part of the transplant work-up.  As we expected, it revealed that he is dropping his oxygen with activity too.  The question then becomes, what is activity?  Does he need oxygen just to walk up the stairs at home?  Is it warranted if he picks up our daughters from preschool?  Does he need it to walk into church, even if he won’t need it once he’s there and sitting down?  The thought of going out in public wearing oxygen is not easy for Jody.  He feels self-conscious, and fears the looks, the sad faces, and the fact that he can no longer hide the battle going on between him & his lungs.  Please pray that God would give him the courage he needs to take this first step, and that people would be kind and accepting in return.

As you can see, even though we’ve had a small turn-around this week, we’ll never really go back to the days when CF was a distant thought in our minds.  Instead it now plays an active role in our lives, often dictating what we do and don’t do.  Even so, we continue to enjoy the small moments in life and give thanks to God for each and every day!

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The Journey Begins

24 Sep

Last Tuesday Jody was admitted to the hospital.  Tonight he came home!  It’s been a challenging week adjusting to the idea of it being time for Jody to list for a lung transplant.  This is far from a cure, and as the doctors put it, “It’s like trading one set of problems for an entirely different set of problems.”  Throughout this past week Jody began meeting with some of the members of the transplant team, including the psychologist, social worker, and dietician.  He has yet to meet with the transplant coordinator, medical doctor, and surgeon.  In addition he has a slew of testing that needs to be done.  Once everything is completed his case will go under review to see if he qualifies to be put on the list for a transplant at Hopkins (they are quite selective in who they accept).  Fortunately, we don’t foresee this being an issue.

This week we were given a lot of information to digest, and I’d be willing to bet it’s only the beginning of what’s to come.  Some of the hardest information to hear was the possible need to relocate to Baltimore for three to four months post transplant, and the need to start fundraising for out-of-pocket expenses related to all of this.  I think our jaws dropped to the floor when the social worker mentioned a ball-park figure of how much money to raise.  I’m talking A LOT of money!  There is also the real possibility that I will run out of FMLA time and lose my job and our insurance coverage somewhere in this process.  As you can imagine, these concerns weigh heavy in our minds right now.

A few people have asked when the transplant will happen and the answer is, “We don’t know.”  A lot depends on Jody.  Lungs are given according to the severity of the patient.  In our case, if the antibiotics work to fight the infection in Jody’s lungs, he could get a little better and the transplant would be pushed out; if they don’t, he could get worse, and it may happen sooner rather than later.  The doctors have explained that there is a small window of time to get someone ready for transplant, and for Jody that time is now.  He needs to be ready now in case he gets worse later, and in case he continues on the downward trend he has been on for the last two months.  In all honesty, Jody’s lungs have really taken a hit.  It is unlikely that he will “bounce back” the way he has other times over the past year.

We are happy to be together again as a family, no matter how soon the next hospitalization comes.  Our girls got a bedtime hug & kiss from Daddy, I didn’t have to sit here alone tonight, and Jody gets to sleep in his own bed.  Even if it’s for just one night, we’re thankful!

We’re also thankful for you!  Many of you left encouraging comments, sent cards, texts, emails, or phone calls.  We may not always respond to each of them, but they are ALL read/listened to and appreciated (more than you know).  Our words seem so inadequate, but we also thank you for the gas gift cards and freezer meals.  These may seem small gifts to you but they are HUGE to us.  And finally, to our friends who have acted quickly and taken the initiative to form  Jody’s transplant “Fundraising Team,” you have NO idea of the stress you are taking from us.  I am seriously at a loss for words to express how much this means to us.  The road ahead may be long and hard for us and we hope you will continue to uplift and encourage us along the way; it may just be what gets us through.

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