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Dear Donor, With Love

18 Apr

Dear DonorDid you know that April is National Donate Life Month?  In honor of this, I am sharing a private letter I wrote to the person, male or female, who will soon become my husbands organ donor.  If you have never registered to become a donor, please, please, consider doing it by visiting organdonor.gov.  Think about it, if it was YOUR spouse, or YOUR child, needing an organ to live, it would be a no-brainer!  You would wish everyone who could be registered, would be.  And just because your loved one doesn’t need an organ today, doesn’t mean they won’t possibly need one someday in the future.  If you are, or would like to be, an organ donor, please share this decision with your loved ones so they know your wishes.  I’d also love if you left a comment telling me you signed up.  It is my hope that by following Jody’s journey, people will be impacted enough to choose to become donors, and I’m proud to say that I am one myself.  That being said, here’s my letter to Jody’s future organ donor…

Dear Donor,
I struggle to find the right words to begin this letter to you. My husband has been made active on the national lung transplant waiting list and as his health declines, I think of you often. Since October of 2012, long before transplant was a thought in my mind, I felt the Lord calling me to pray for you, my husband’s one-day hero and donor. Since that time I have prayed for you often. I pray first and foremost that you would know Jesus Christ as your Lord and Savior, and if you don’t, I ask God to place people into your life that will share Him with you. God loves you overwhelmingly, and I hope you do not leave this earth without having experienced that love, and the power of His forgiveness in your life.

I also pray for your relationships. Where there are hurts, I pray forgiveness and healing. Where relationships have been broken, I pray restoration. For those positive relationships in your life, I pray abundant blessings. I hope you will say all the things you feel in your heart. Let your loved ones know how much you love them. Hug them, kiss them, and spend quality time with them. Give them joyful memories to hold onto and help them through hard times when they are missing you.

I want you to know that I do not take lightly this gift you are giving to my husband, and in turn, our family. In order for him to breathe easily again, I know it means you will have paid the ultimate price, and therefore, I’m hesitant to wish transplant would come soon. Instead, I place the timing of it into God’s hands, and ask for His angels to be with you when the end is near.

When your gift of lungs, and to breathe again, has been given, I will be forever grateful! I pray that my husband’s body would accept them as his own, and that God would use them to bring lifelong healing to his body. I will do what I can to ensure they are treated well and protected for the irreplaceable gift they are.

Finally, I want you to know that as I have prayed for you, I will continue to pray for your loved ones when you are gone. My heart hurts for the pain and grief I know they will experience, and I wish it didn’t have to be this way. I hope that they will take comfort in knowing that your death was not in vain, and that you have given life to at least one other (and probably even more).

Until that time comes, live life to the fullest. Go and do the things you’ve always wanted to do or try. Take a walk in a park, plan a picnic, eat foods you’ve never tasted, dance; don’t be a wallflower, turn off social media, love hard, enjoy life and LIVE! Live like there’s no tomorrow, because one day soon, there will be no more tomorrows.

Thank you, from the bottom of my heart for the gift you’re about to give. I hope one day I will be able to meet you in our eternal home and tell you about the difference you made in my family’s life. For now, inhale, exhale, breathe easily, and LIVE!

Forever indebted,
Tiffany

 

The Waiting

4 Apr

Photo credit: L@mees

It’s been a little over a week since Jody was made active on the lung transplant list, and the preparation has begun.  Ironically, it reminds me of what it was like when I was pregnant and waiting to go into labor.  I remember, especially towards the end of my pregnancy, all I could think about was when it was going to happen, and what it was going to be like.  Our bags were packed and we were ready to go just as soon as the baby, or rather, painful contractions would declare it was time.  We couldn’t wait for this new life to arrive.  That was 2008.

Six years later, we’re once again waiting for life, only this time it’s a second chance at life.  We’re wondering when and how it will happen.  We’re imagining what it’s going to be like.  Our hospital bags are semi-packed and we wait in anticipation for “the call,” much like waiting for labor to begin.  And just as I had special outfits picked out for our girls to wear home from the hospital, I recently bought Jody a fun and fitting “going home” shirt to wear the day he is discharged post transplant (I promise a picture when the time comes).  As we prayed for labor and our unborn child, so too, we are praying now for all aspects of this process.  I pray often for the donor who right now is living, but sadly, whose time on earth is short.  I pray for God’s perfect timing in all of this.  I pray for Jody’s surgical team, and the surgery itself.  I pray for the nurses and staff who will be taking care of him.  I pray for his recovery.  I pray for our children and ask for wisdom to know how to help them understand all of this.  I pray strength for myself, and that God would protect my health during all of this so I can be there for the ones who need me.  I also pray for a supernatural peace and calmness when we get the call from Hopkins for Jody’s new lungs.  When I think of that time I imagine feeling frantic; rushing around grabbing last-minute items, a huge knot in my stomach, a hurried goodbye to our girls, and a rushed 90 minute drive to the hospital.  Nothing about that sounds peaceful to me, which is why I ask God for His peace which passes all understanding (Philippians 4:7).  Please join me in praying for all of the above or however the Lord leads you.

I’ve been talking about “the call” so I should probably explain this a little more.  Up until four years ago lung transplants were given on a first come, first serve basis.  In other words, they were given based on how long one was on the list, and not the severity of the illness.  The problem with this method was that people who became critically ill died far too often because they were not high enough on the list to receive the lungs they needed to live.  Four years ago the system changed so that disease severity now trumps time on the list.  Lungs now go to the people who need them the most.  There is a scoring system, called the Lung Allocation Score (LAS), which determines priority for lungs when they become available.  Scoring is a bit complicated, factoring in many aspects of ones health and disease.  Body size and blood type also play an important role in the availability of and wait for organs.

When Jody was listed, we were surprised to learn that his Lung Allocation Score is moderately high at 38.5.  To put this in perspective, another patient with the same score of 38.5 was called for her transplant the day before Jody was listed.  This was a little shocking to hear.  For some reason, whenever I thought of transplant I imagined it being so far off into the future.  Clearly Jody is much closer to getting his new lungs than he or I ever envisioned.  Strictly guessing, Jody’s doctor feels it will happen somewhere in the next three to six months.  So now we wait… and wait.  We’re waiting for a phone call from Hopkins to let us know that lungs have become available for Jody, and telling us to get there ASAP.  Every time the phone rings, I find myself holding my breath, and wondering if it’s time to jump into action.  As with labor, I know that one of these days it will be time, and we’ll grab our bags and go.  We may not be bringing home a baby, but we are looking forward to new life; one where Jody is no longer held back by the chains of his disease, and where he can run, and jump, and leap, and breathe easily!

Officially Listed!

28 Mar

It’s been a little over two weeks since my last post and I can now share with you that Jody has officially been made active on the national transplant list through UNOS.  His actual list date was March 25th.  In my last post I told you how we were having a hard time making this decision, and that Jody’s doctors were not in complete agreement with which way to go either.  Recently we learned why this has been a hard decision even for Jody’s team of physicians: he doesn’t fit the picture of a “typical” CF patient listing for transplant.

When most adults with CF (80%) are listed, it’s because they are using oxygen 100% of the time, and are losing weight (which is super important for those with CF to be able to fight off infections).  I’ve never talked about CF and weight before, so you may not know that many people with CF do not have any digestive enzymes so their body does not naturally absorb all the fat and nutrients from the food they eat.  While they take digestive enzyme pills to help with this problem, they are not quite as effective.  For this reason, almost anyone you meet with Cystic Fibrosis will be quite thin, despite a high fat diet.  Jody for instance, drinks 1600 calorie shakes every day to help him gain weight, and can eat as much fat in his diet as he wants (if you’re thinking to yourself, ‘must be nice,’ think again, you wouldn’t want the rest of what he has to deal with).  In general, people with CF have to work really hard to maintain their weight so when weight begins to fall, this is problematic.  Jody does not fall into either one of the categories above: he’s maintaining his weight, and while he wears oxygen most of the time, he can also go without it if he is sitting down and not doing anything.

One of the driving forces behind the decision to list Jody now is the frequency of which he needs IV antibiotics to fight off infections and keep him well.  He used to bounce back after these IV’s, meaning his shortness of breathe would go away, his lung function would improve, and he would return to his normal, active self.  In the past six months or so, this hasn’t been the case.  Jody’s lungs are worn and tired, and they don’t have much bounce-back left.  It is important to replace them now, while he is well enough to withstand such an intense surgery/recovery.  The doctors know that in Jody’s current state it wouldn’t take much (even just getting the flu) for him to go downhill fast, and be too sick for transplant.  And so, Jody’s CF and transplant doctors, are finally in complete agreement with the decision to make him active on the list, and this is what we were waiting for.

You might have some questions about what happens next, but I think I’ll save that for my next blog post (because this one would become too long, and you’d probably lose interest).  We’ll pick up where I left off soon but for now, I’ll leave you with a really good five-minute animated video that helps to explain organ donation and transplantation at a basic level, it’s worth watching.

 

To List or Not To List

12 Mar

Jody and I are facing what is proving to be one of the most difficult decision we’ve had to make thus far in our married life, which is whether or not to make him “active” on the transplant list.  If you’ve been following Jody’s journey you know that Jody needs a double lung transplant, this is indisputable!  But if you’ve been following my blog you also know that lung transplants are by no means a guarantee for a long-lasting life, in fact, statistics prove it’s quite the opposite.  Balancing the need for new lungs to live a quality life, verses a life cut short by lungs transplanted too soon is delicate.

We were first approached with the idea of transplant for Jody back in September (2013).  You might remember this emotional post.  After undergoing extensive transplant testing, Jody was seen for the first time in the transplant clinic in December (2013) where he was kindly told that despite having 30% lung function, and requiring Oxygen to breathe, he was too “healthy” for transplant at that time.  Again the doctor pointed out those scary statistics; that transplanted lungs only last an average of five years and only 50% of patients even live five years post transplant.

Since that time Jody has been followed closely by both the Cystic Fibrosis and transplant clinics.  It seems at every appointment those statistics are repeated to us over and over (as if, even after hearing them spoken only once, we could ever forget them).  Most recently we were told that 20% of patients don’t live through the first year post lung transplant.  This may sound like a low number if it’s the chance of snow being predicted, but it sounds like a high number when it’s referring to someones life (especially someone you love).  It really is hard to stay positive and hold onto hope for what sounds so hopeless (and with medical “proof” to justify the hopelessness).  Yet I understand the doctors need us to comprehend the seriousness of all this and to be able to make an informed decision, and I appreciate their honesty.

Jody and I feel as if we are on an emotional roller coaster.  First, we struggled to accept the need for transplant, and when we finally did, we were told it was best to wait.  Then we were forced to accept this less-than-ideal quality of life, so different from the life we’ve always known.  In addition, we’ve been approached with conflicting opinions from Jody’s doctors, all of whom we trust and respect.

Last week, when Jody was in the hospital the CF doctor (who also works on the transplant side of things), again suggested 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 also mentioned that two of his colleagues (CF doctors as well) disagreed with him, believing that now was/is the time to list.  Ultimately, we agreed to wait, hoping to buy more time before the transplant becomes absolutely necessary.

Yesterday Jody had a post hospitalization follow-up appointment in the CF clinic.  The majority of the time at this appointment was dedicated to the question of whether or not to make Jody active on the list (we weren’t anticipating this being the focus of the visit).  The physician essentially told us that the team is in agreement that now is the time.  Yet it was a just a week ago that we were told the opposite (and it doesn’t seem like much has changed between then and now).  So how do we know when it really is “the time?”  According to the doctor today, it’s when living as you’ve been living is no longer worth it.  When ones quality of life has become basically, unlivable.  Naturally when talking about my husband and the father of my young children I want to jump up and scream, “What are you talking about?  How can life ever be ‘unlivable’ when you’ve got kids who desperately need a Daddy?”  Instead I sit there quietly and calmly, with a few tears in my eyes, because I know that I’m not the one living the unlivable life: Jody is!  My love for him needs to be greater than my fear of losing him.  Only Jody can know when he’s had enough; when the only option left for him is transplant, potentially shortened life and all.  It is true that transplanted lungs could give Jody a new lease on life, but in making this decision we need to be prepared for the worst and hope for the best.

And so, as I mentioned in the beginning, it seems we are facing one of the toughest decisions of our married life.  It feels like an end-of-life decision I’d rather not contemplate (unless maybe Jody were 85 years old and had lived a long, enjoyable life).  I fear making the wrong decision.  What happens if we choose to wait and Jody becomes critically ill, making it more difficult for him to recover from this major surgery?  What happens if we choose to list and he doesn’t survive the surgery or first year?  It’s a gamble and right now we have no answers.

We could use your prayers that God would guide us in this decision, and make His will clearly known.  We also pray that God would bring the doctors to complete agreement with one another.  Finally, pray for peace when the decision is made.  I know the enemy wants nothing more than to confuse us and to take away the fragile hope to which we cling.  We are under no pressure to make a quick decision and as always will fill you in when we do.  Until then, breathe easy, and appreciate those hard-working lungs of yours!

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

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.

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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