Tag Archives: lung transplant

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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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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