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Dry Run #2

26 Jun

This isn’t exactly the blog post I was planning to write this morning.  I wholeheartedly expected to announce today that Jody got his new lungs.  Instead I’m telling you the story of another dry run.  In case you missed the last one, here’s the story of our first dry run, reading that one will help you understand this one a little better.

Yesterday, June 25th, marked exactly three months that Jody has been active on the national lung transplant waiting list.  When that happened, I remember his doctor speculating he would be called within three to six months of being made active.  He was called after only one month of being listed, and now again at three months.  Here’s the story of our second “dry run”.

Last evening at 6:45 pm, our phone rang.  Every time this happens I find myself holding my breath wondering if it’s “the call,” and time to jump into action.  Usually it’s not, but this time it was!  When Jody answered, it was a transplant coordinator from Johns Hopkins.  She called to say that Dr. Shah (the surgeon who will be performing Jody’s transplant operation), wanted us to know that there was a potential donor.  We were told not to come in yet, but to begin preparing just in case.  She promised to call back either way.  I began to start packing things for our girls, tidying up around the house, and Jody hopped in the shower (because who knows how long after transplant it would be until he could shower again).  At 8:00 pm, the transplant coordinator called back to say, “It’s a go!”  In other words, this is it, this donor is for you (Jody)!  She told us that we didn’t need to be there until midnight, and that surgery would be tentatively scheduled for 4 am 6/26.

You might be wondering about this big gap in time so I’ll explain my understanding of the events (and this may not be 100% accurate because often information is purposefully left out, and we have to read between the lines).  Between 6:45 & 8:00 pm, I believe the surgeon and his team got word of the possible donor and began reviewing this persons medical records to know if “on paper” the donor was a perfect match.  We did learn that the donor was 40 years old and that his/her lungs were not considered high-risk lungs.  Once this donor was approved on paper, we received the second call, telling us to be at the hospital in four hours.

I would like to pause here to clear-up a common misconception.  People often choose NOT to become organ donors because they fear they will be taken off life support prematurely so that their organs can be donated.  This is just plain false, and quite honestly an uneducated argument!  When tragedy strikes, and people experience brain death, it’s only a matter of time until their organs begin to shut down and death is imminent.  In the case of Jody’s potential donor last night, the family would have been told that their loved one was not going to survive whatever it was that caused this tragedy, and that death would be soon.  They were most likely given the option to wait it out until the end, in which case the organs would have been unusable (and would probably have been a matter of hours to a few days), or to make the call to stop life support, thereby avoiding the death of their loved ones valuable and viable organs.  They would have been given the option to donate their loved ones organs so that hope could come from their tragedy.  Let me be blunt, sadly, organ donation or not, this person would not have survived their injuries.  People are NOT taken off life support for their organs if there is ANY chance of survival.  Please make sure you are properly educated before you make the decision not to become an organ donor.  In this case (and any case of organ donation), I’m thankful the family made the selfless decision to give life (because even though it didn’t work out for Jody, I’m sure others were blessed with this persons life-giving, life-changing organs).  This family has been heavy on my heart, and I am keeping them in prayer because even though they are giving life to others, they are grieving a terrible loss of their own.

Okay, now that I have stepped down from my organ donation soap box, I’ll return to our story.  Up until this point I believe the donor was being kept alive and on life support.  Once it was determined on paper that the lungs would work, and we were notified, a transplant surgeon (not Dr. Shah himself), and a cardiothoracic fellow (doctor) flew out to wait for and personally evaluate the lungs once they were harvested.  This sounds fast and simple, but it takes time and patience.

Final goodbyes before transplant

While all of this was occurring, I was so thankful for the time we had to prepare.  This was exactly what I (and probably some of you), had prayed for.  We had time to pause and think without rushing around like chicken with our heads cut off.  By 9:10 pm, my Mom had come and gone with our girls, but not before we took a family picture.  At 10:05 pm we hopped in our van to head to JHH.  Ironically, when Jody started the ignition, the first words I heard playing on the radio were, “Tonight’s the night.” Words from the Toby Mac song, City On Our Knees.  I couldn’t help but wonder if that was a sign.  Apart from the pouring rain, our drive to Hopkins was seamless, the complete opposite of our last stress-filled dry run.  Because it was later at night, we hit no traffic, it was great!  We arrived at JHH at 11:35 pm.

Since the admitting office was closed, upon arrival we were instructed to go to 10W (the cardio-thoracic post-surgical progressive care unit).  This is also the unit to which Jody will be transferred once he is moved out of the ICU following transplant.  Once there he was told he would have blood work done, an IV started, an EKG, and be placed on a cardiac monitor.  At 1 am a cardiothoracic resident came in to review the procedure, answer questions, and have Jody sign consents for surgery.  The team of physicians who had flown out to get the lungs were not back yet, and surgery was still tentatively scheduled for 4 am.  At that point we knew this could still turn into a dry run.  In fact, we were told that Jody may even be taken to surgery, put to sleep, only to wake up and be told the lungs were not good, and that the surgery never happened (imagine the disappointment in that).  Despite that risk, we believed that this was the real deal.  We felt relaxed and actually dimmed the lights in the room in an attempt to get bits and pieces of sleep.  At 2 am the same resident who had signed consents with us opened the door to Jody’s room and instantly we knew.  His face said it all, no words were needed, but he spoke something like, “I’m really sorry guys, we can’t use the lungs.  There were nodules on them and Dr. Shah doesn’t feel comfortable using them.  It’s not worth the risk.  You are free to sleep here or to go home, I’m really sorry.”  Unlike last time I was stunned.

Everything about this dry run was perfect, exactly what we had hoped and prayed for.  In fact on the way home (at 2:15 am) we were debriefing and Jody asked me what I would do differently the next time, and I couldn’t think of anything.  It was fabulous to have the advanced warning and so much time to prepare.  The drive was uneventful.  Since it was late at night the hospital appeared empty and quiet.  One word to describe this entire experience is calm.  We were prepared and relaxed, unrushed, and unlike our last dry run, everything flowed smoothly and calmly.  Even the timing seemed right, my FMLA at work has now been renewed for another year, and this would allow Jody to be home for our oldest daughters 6th birthday in August, and first day of Kindergarten the day after that.  I guess because it felt right, I believed it was right.  But I was wrong.  After our last dry run I was relived, I just wasn’t ready, this time I felt genuinely disappointed, Jody too.  We left bummed and emotionally drained.  This time when we got in our van, the first words of the song we heard playing on the radio were, “And I’ll praise You in this storm…” (Praise You in This Storm, by Casting Crowns).  I had to stop and say, God I don’t understand it, I’m disappointed, but I trust You and your timing, so I’ll praise You regardless.

We’ve now experienced both a bad and good “dry run.”  Who knows what the next call will be like.  Hopefully it won’t end in me writing a Dry Run #3 blog post, but rather in my making that long-awaited announcement that Jody did indeed get his new lungs.  Until then, continue to pray that the next call will not hold the stress and craziness of dry run #1, but instead would be covered in the peace and calmness of dry run #2.

 

The Gift of Prayer

30 May

Prayer is a gift-AI believe that prayer works.  That it’s powerful and effective. Prayers may not always be answered the way we would like, if at all, but they will always bring us closer to The One who has the power to change a situation.  With this understanding, I find myself praying often for Jody’s upcoming transplant.

There are many aspects of the journey we are about to take that I desire to cover in prayer, and sometimes it feels overwhelming.  Recently I had the idea to write down all the prayer requests I could think of and pray for one specific area each day.  I know that some of you are faithful in keeping us in your prayers, so the more I thought of it, I decided to share my prayer list with you.  Why not turn it into a prayer challenge?  The month of June is just around the corner, which seems like the perfect time to start.  Will you join me in a 30 day “Prayer for Jody” challenge?  Below I have listed a prayer focus (request) for each day of the upcoming month.  Please consider supporting Jody and my family by giving us the gift of prayer each day for the month of June.  It’s free, easy, and perhaps God will use this time to speak to you about an area of your life as well.

Prayer for Jody Challenge

If you accept this challenge, hit the “print” button at the bottom of the post for a print-out which can be hung in a place where you will see it often (the refrigerator, your desk, your car, etc.).  One can never have too many people praying for them so please share this post with the prayer warriors in your life, and ask them to join us in covering all aspects of Jody’s transplant in prayer.  Make a difference, and give the gift of prayer!   

June 1:

Health Today – Pray for Jody’s current health as he awaits transplant. Pray against any infections that would cause a rapid deterioration before transplant. Jody’s doctors believe that in his current state it wouldn’t take much for him to go downhill fast. Additionally, if he needed to be on a ventilator for an extended period of time prior to transplant, it would disqualify him from being able to have the operation at all. The healthier he is going into his transplant, the better his recovery will be, so pray for protection over his lungs and overall health until the time comes.

June 2:

The Donor – Pray for Jody’s donor who is, at present, living and breathing. Pray that he/she would know Jesus as their personal Savior & Friend. Pray that they would make the most of their time left, not taking a moment for granted. Also remember to include prayers for the donor’s family as they will be forced to make the decision of whether or not to give the gift of life.  This family will also need your prayers as they grieve the very sad, and unexpected loss of a loved one.

June 3:

The Call – Pray that we will be ready when Jody gets the call for his transplant. Pray that we won’t be too far from home and that we’ll have time to grab a few last-minute items (things that couldn’t be packed ahead of time). Pray that the drive will be uneventful and that we won’t be held up in traffic like before. Pray also for a supernatural peace/calmness when the call comes.

June 4:

Emotions – This journey has, and will continue to be an emotional roller coaster. Pray against negative thoughts and feelings, such as fear, hopelessness, doubt, worry, anxiety, offense, etc. Instead, pray that we would be filled with peace, strength, faith, hope, trust, courage, etc.

June 5:

Fundraising Efforts – While Jody and I are primarily focused on his health (and will continue to be post-transplant), there is a team of people working behind the scenes to help us with fundraising.  Jody’s transplant, recovery, and post-op medications (just to name a few) will be a financial burden on us.  This team of volunteers is working to eliminate that burden by fundraising on our behalf. While this is a huge blessing to us, it puts a lot of work & responsibility on them. Pray that people would respond to their call for help and support, particularly with planning an upcoming auction in the fall. Pray that the team would feel encouraged and that their efforts would be rewarded. Pray also that people would continue to give financially so we can reach our fundraising goal set by Jody’s transplant social worker.  Finally, pray blessings over those who have already offered time, services, and/or financial help.

June 6:

Pre-Op – Pray for the period of time between our arrival at Hopkins and when Jody is taken to the operating room.  He will undergo a few tests during this time.  Pray that anxiety would be minimal and courage and peace would be plenty.

June 7:

Our Families – Pray for our families, particularly our Moms, whose primary role in all of this will be to take care of our two daughters. It’s one thing for a Grandparent to babysit here and there, but it’s another thing for them to care for young, energetic kids for weeks on end with no break. Pray for strength, endurance, and patience too. Also pray blessings on them as they give of themselves in such a big way to help us through this time in our lives.

June 8:

The Surgery – Pray for the surgeon, anesthesiologist and other team members who will be caring for Jody during the actual transplant. Pray that Jody’s old lungs will tolerate the surgery so that he won’t need to be placed on a heart/lung machine during the procedure. Pray that God would guide the surgeon’s hands, preventing any errors from occurring. Pray that the surgery would be uneventful (progressing as smoothly as planned), uncomplicated, and a complete success. Pray that God would send His angels to protect and comfort Jody during this big operation. Also pray for me as I anxiously await updates and for the time when I see him for the first time post-op (he will be sedated and on a ventilator).

June 9:

Our Girls – Disease impacts an entire family, not just one person, and our girls are no different. Tabitha, age 5, misses how her Daddy used to be able to run around with her, and take her and her sister to fun places, like Dutch Wonderland. Words like oxygen, germs, infection, lungs, sick, sanitizer, hospital, etc., are an every-day part of her speech and play. She has a very basic understanding of what is happening with Jody. Piper, our 3 year-old, really has very little understanding if at all. Our girls are accustomed to Jody being around nearly 24/7 so they notice and miss him when he’s ill or hospitalized. Transplant separation could range from weeks to months so pray for our girls as they experience a temporary change to the life they’ve always known (since both Jody and I will be away much of the time and they will be staying with grandparents). Pray for safety over them while we are separated, and that they come out of this experience emotionally strong, whatever the outcome.

June 10:

Against Rejection – Pray that Jody’s body would accept the lungs from his donor as if they were his own. Pray for a perfect match! Pray against rejection. Pray against the many unpleasant side effects of high doses of anti-rejection drugs.

June 11:

Recovery – Pray for Jody as he begins the long road to recovery. Pray for minimal pain, and few (if any) complications.  Pray that I will be an effective cheerleader, encouraging him on in his recovery.

June 12:

Tiffany – Please pray for me as my role of caregiver takes on a whole new level. As Jody recovers I will be balancing both caregiving and life outside of the hospital (work, kids, home responsibilities, bills, dealing with insurance companies, etc…). I know this will be a busy and stressful time for me so pray for strength to make it through. Please also pray for my health both now and then. One fear I have is that I will be sick or have a cold when Jody gets his transplant. Even the slightest cold would prevent me from being able to be by his side, and this would be devastating for me. After Jody’s transplant, and for as long as he is in the hospital (I think) I will need to wear a plastic gown, gloves and mask (including to sleep, if I am even allowed to stay overnight with him). This can be quite hot and annoying if I’m honest. Pray that this “garb” would not faze me and that I would be comfortable at Jody’s bedside.

June 13:

Help – This upcoming lung transplant feels like a big, all-consuming mountain to climb. This mountain may not seem quite as large if we have people standing by us, cheering us on, and helping us along the way. Pray that God would provide those supporters when we need them the most. Pray also that when we are unable, our physical/practical needs will be met as well. Pray that we can be humble enough to accept the help when it is offered. Finally, pray blessings on those who sacrificially give of themselves by offering help and support.

June 14:

The Doctors – Jody will have a team of physicians managing his care. Pray wisdom on them to make the right decisions and for answers when they question the right thing to do. Pray for doctors who are kind, thorough, and willing to explain and teach Jody’s plan of care on a level we can understand.

June 15:

Positivity – Throughout this experience there will most likely be set-backs. Pray that we can remain positive in our thinking, keeping our eye on the end goal.

June 16:

Breathing – Pray that Jody’s time on a ventilator after surgery will be short and that there are no complications that would hinder his ability to breathe on his own. Pray that his lung function will steadily climb so that he can be off oxygen support and breathing easily and comfortably on his own.

June 17:

The Nurses – Nurses can make or break a hospital experience! Pray for the nurses who will be caring for Jody throughout his hospital stay. Pray that they are top-notch, great at what they do, but also warm and friendly. I remember thinking from past ICU hospitalizations that the critical care nurses tended to be much less warm and fuzzy (compared to regular med-surg nurses), even seeming annoyed when questioned. Pray against this, and that the nurses Jody is assigned will be great teachers, and will see him as the person (husband, father, son, brother, friend) that he is, and not just another patient. Lastly, pray that I would connect with Jody’s nursing team as well.

June 18:

Chest Tubes – Following his transplant, Jody will have four chest tubes which will remain in place to allow for drainage from his lungs. I have heard that they can be quite uncomfortable and even painful. I’ve also read stories of people needing to stay in the hospital for months after transplant, waiting for the tubes to stop draining so they can be pulled. Chest tubes can also get “clogged” resulting in a back-up of fluid, causing shortness of breath. Please pray against any complications related to these tubes.

June 19:

Rehab – After transplant an important aspect to Jody’s recovery will be pulmonary rehab (guided exercise). Pray for strength and determination to “get moving.” Pray for minimal pain during these exercise sessions. Pray for a connection with the therapists with whom he will be spending a lot of time.

June 20:

Tiffany’s Job – Pray that my managers will be understanding of my situation, and willing to work with me. We do not have a lot of flexibility with our schedules at work (and they are made up eight weeks in advance). Pray that it would work out more often than not that Jody’s appointments fall on my days off (I work three days a week and do not have a set schedule). Pray that if I need off on a day that I am scheduled to work, I would be able to find someone willing to make a switch with me. Pray that I do not run out of FMLA time throughout the next year. Finally, pray for my emotions when I must work. Leaving Jody’s (hospital) bedside to go to work is one of the hardest things I do, and I know it will be even harder after his transplant. Pray that I can stay positive and focused on the task at hand, despite everything happening in my life outside of work.

June 21:

Rest – It’s hard to get quality sleep in a hospital when interruptions are frequent. Pray that Jody would be comfortable and able to get the sleep he needs to wake up feeling well rested.

June 22:

Unnecessary stress – As we focus on Jody and his recovery after transplant, pray that our lives outside of the hospital will be guarded. Pray against things breaking down at home or with our vehicles. Pray against any of us getting sick. I can dream up all kinds of scenarios of things, completely unrelated to transplant, that could go wrong (the dog gets sick, a pipe breaks, a tooth cracks, the girls get sick, etc.). This would only add unnecessary stress. Pray that life apart from transplant will run as smoothly as possible during this intense time.

June 23:

Miracle – Receiving a new set of lungs will be, in and of itself, a miracle in Jody’s life. Right now, without this gift of life, his life expectancy is 1-2 years. As before, pray that Jody’s body would miraculously accept these new lungs as if they were his own. Pray that God would use this surgery to bring the earthly healing we’ve been asking for. Pray for a miracle!

June 24:

Germs – Being immunosuppressed post-transplant, germs, viruses and bacteria could be a real threat to Jody’s life. Frankly I am terrified of how we will keep Jody healthy when we have preschool/school age children who bring illness into our home. Even now it puts me in freak-out mode when I know they have a cold, and risk sharing it with Jody. Sadly, I imagine this will only get worse. Please pray for supernatural protection from the germs that will surround our family and Jody in particular, following transplant. Pray also for protection over him this upcoming cold/flu season.

June 25:

Safe Travels – Post transplant Hopkins will become a second home for us. In choosing not to relocate to Baltimore (as was first suggested), we will be making many trips back and forth between our house and the hospital. This 82 mile (one way) drive on a busy highway is sure to provide ample opportunity for something to go wrong. Once already during this trip our vehicle was damaged because of accident debris left on the road. This is one stress we hope to avoid.  Please pray for safety while spending so much time on the road traveling to and from hospital visits and doctors appointments.

June 26:

Learning – This transplant and recovery will be unlike anything we have ever experienced. There will be a huge learning curve as we prepare to bring Jody home. Pray that we absorb and understand the education we are given so that we can follow through with his care at home properly.

June 27:

Against Statistics – If you’ve been reading my blog long you know that lung transplants are not known to have the best long-term outcomes. They are done more to improve quality of life, and not necessarily longevity. Fifty percent of patients do not live five years out of a lung transplant, and only 38% of people live 10 years out. In 10 years our daughters will be 13 & 15, and still very much in need of their father (perhaps at that age even more so than ever before). These statistics are very hard to accept, and wear on me emotionally. I often find it easier to believe the statistics than that God could have a different plan. Pray against this. Pray also that God’s plan for Jody’s life would be to beat the odds stacked against him, and to watch his girls become grown women.

June 28:

Acceptance – There are no guarantees in life. While we hope this transplant will be long-lasting, we understand that God may have a different plan. Pray that we can accept The Lords will for our life (whatever it may be) and trust in Him always.

June 29:

Jesus – Pray that throughout this journey we see the power, love, and goodness of God, especially in times of doubt. Pray for opportunities to share the love of Jesus with the people we meet. Pray that our faith would be strong. Pray that above all, God would receive all the glory.

June 30:

You choose – Is there an aspect of this journey that you feel compelled to pray about? Perhaps something that I’ve not considered? Was there an area this month that God laid on your heart to continue praying for?  If so, take it to The Lord on our behalf.

Afterthoughts:

To those of you who completed this challenge, THANK YOU!  It’s reassuring to know that Heaven was flooded with prayers for the success of Jody’s transplant.  When the actual time comes, please continue to lift us up in prayer as we begin to climb the mountain set before us.  We’re looking forward to “the sweet life” when we get to the other side, and we know that it will be your prayers helping us, encouraging us, and moving us forward on the journey.

The Calm Before the Storm

11 May

Lately I’ve been posting blog updates roughly once a week, but thankfully this week I don’t have much to report.  Jody is stable and infection-free right now, and it’s wonderful!  I hesitate to say that aloud because in times past, as soon as I’ve told someone that he’s doing well, it changes, and an infection hits.  When things are well and good (as well as they can be with 25-30% lung function), it makes me dread the sickness that will inevitably come.  Even the lung transplant and recovery is something I’m not especially looking forward to.  I know that it will include months of high-stress, juggling caregiving, parenting, working, and keeping house.  I know that during that time I will desire to be exclusively at Jody’s bedside, to go to appointments with him, to help him recovery and simply to be there for him however he needs me.  But those other responsibilities will call and I won’t be able to be there 100% the way that I would like.  While Jody knows and understands this, it’s hard for me to accept.  As you can imagine, knowing this stress is just a phone call away, I’m super thankful for the calm before the storm.

Dr. Shah (Jody’s transplant surgeon)

Since I don’t have too much to report this week, I’d like to share with you a short video where Jody’s transplant surgeon, Dr. Shah, talks briefly about the lung transplant process at Hopkins.  This is the surgeon I talked about last week who offered to pay for our gas and dinner because he felt badly that our crazy, stressful drive for transplant ended up being a dry run.  This is also the man who will hold Jody’s warn, hard-working, failing lungs in his hands, and replace them with those which will bring life again.  I couldn’t be more thankful to him and the rest of Jody’s CF and transplant teams.  Please watch this video to learn more about Jody’s upcoming transplant.

 

One more thing, we could use your prayers for extra special protection over Jody’s health.  One of our daughters has come down with a cold and as history would have it, Jody inevitably ends up with an infection, leading to a hospitalization when this happens.  It goes without saying that we prefer to keep him home and well.  So please join us in praying that this cold goes away quickly and without spreading to the rest of our family.  Thank you in advance.

Dry Run

2 May

Yesterday was an emotional roller coaster.  It was 3 o’clock in the afternoon, we were in Virginia, four hours from home, taking afternoon naps.  The phone rang, “Mr. S., this is R., a transplant coordinator for Johns Hopkins,  I want to let you know that we have a donor for you.”  “What?!  You mean you have a set of lungs?,” questioned Jody in confused astonishment.  “Yes, how soon can you get here?”  And so began the madness.

On paper we were three hours from Hopkins.  The transplant coordinator relayed this information to the surgeon who said it was okay, and to come as soon as we could.  We quickly explained to our girls what was happening and why we needed to leave ASAP (we had discussed this with them before when we talked about transplant).  We then grabbed a few things on the way out, and left in a hurry.  It was 3:15 pm.  We were in complete shock!  Jody had only been active on the list for a little over a month, and we never anticipated getting “the call” so soon.  We had also been told that more often than not the call comes in the middle of the night, so we never even gave it much thought that Jody could be called for transplant in the middle of the afternoon.  We also envisioned being home (or near home) when he was called so it would be easy to have family come to our house to watch our girls so we could go.  Instead, being four hours from home there was no one to call to come over.  The girls had to go with us and we had to coordinate someone to meet us at Hopkins to take them home (they would not be allowed in with us because they are too young).  I feared Jody going to the operating room while I sat in the parking garage with our girls, waiting for someone to get there to take them.

Rush hour traffic

Rush hour traffic

The drive to Hopkins was stressful in that we hit rush hour traffic (we couldn’t have planned a worse time to get the call if we tried).  Every half hour or so we checked in with the transplant coordinator, updating her with our location and traffic conditions.  She would then text the surgeon with that information, but we were always instructed to, “Just keep coming, but drive safely.” The closer we got to Baltimore the worse the traffic got.  We were bumper to bumper, going 10-15 mph.  We joked about creating our own Hollywood car scene where we drive recklessly up the shoulder, in and out of traffic,  drive up a few cars to jump over a few more, etc. (you’ve all seen those movies, you know what I’m talking about, right?). Obviously this wasn’t a realistic option for us.  It felt like everyone around us should have just known, that we were in a hurry, and that Jody was on his way to the hospital for a lung transplant.  At one point I even thought about creating a sign to hold up and fill the other drivers in on our need to move, and move quickly.  As traffic continued to crawl, Hopkins actually mentioned the possibility of sending us a police escort and/or the chopper.  Suddenly I envisioned myself saying goodbye to Jody in a median along the side of the road, with traffic rushing by, as he climbs up into the chopper and is flown off to the hospital and taken to surgery.  I couldn’t have dreamt this up if I tried; it really was beginning to sound like the plot of a good Hollywood movie.

Taking a breather after our "dry run."

Taking a breather after our “dry run.”

Thankfully, the surgeon always felt our arrival time was doable so additional help to get us there fast was unnecessary.  We finally arrived at Hopkins at 7:30 pm, and the hospital never looked so good.  I dropped Jody off at the main entrance and drove our minivan to the garage to park and hand the girls off to my Mom who thankfully was ready and waiting.  Rather frantically I threw some things in a bag, and headed in to meet Jody wherever he was taken.  I was just about to cross the bridge from the parking garage into the hospital when my phone rang.  It was Jody.  The (donor) lungs were no good.  This was the possible “dry run” they had warned us about.  Both disappointment and relief filled me.  Fortunately my Mom hadn’t left with our girls yet so we all met Jody near the entrance and sat down for a few minutes to de-stress and process the information.

It’s hard to understand why this dry run had to happen, but it did prepare us for when we get the call next time.  I’m grateful to a picky surgeon who won’t allow Jody to accept less than the best lungs for him.  And to speak to the quality of physicians we are dealing with, he (the surgeon) offered to pay for our gas and buy us supper.

Clearly, this was not the donor, or the lungs for Jody.  Regardless, I hold this family in my prayers as they have experienced the painful loss of a loved one.  I also continue to pray for Jody’s actual donor and ask you to do the same.  Please also pray that the timing of Jody’s transplant (and when we get the call) will be perfect, and peace will be flowing.  We really don’t need another Hollywood movie scene when the call comes again.  Yesterday had us on quite an emotional roller coaster, but I’m thankful for this practice run so we have an idea of what to expect next time, and how to be better prepared.

Where do you fit in?

25 Apr
Jamie, leader of Jody's CF (Care & Fundraising) team.

Jamie, leader of Jody’s CF (Care & Fundraising) team.

My blog has been taken over today by a good friend who is making a huge difference in our lives!  Continue reading to find out what she’s been up to.                 – Tiffany

Hi, I’m Jamie, a friend of Jody and Tiffany and the leader of Jody’s CF Team. And no, that’s not his team of doctors; it’s his team of supporters, more specifically, Jody’s Care and Fundraising Team. Jody, Tiffany, and their girls mean a lot to me and to my family, so when Jody first heard that the time was right for a transplant, I started to pull together other people who have an interest in helping them through this process, hoping to meet both their physical, daily-life needs and their financial needs.

If you’ve been reading Tiff’s blog or have checked out the website JodyNeedsLungs.com (created by a tech-expert on Jody’s CF Team), you probably know that Jody and Tiffany will have a lot of out-of-pocket expenses for the lung transplant. How much exactly? Well, when they sat down to talk with their transplant social worker, she suggested a fundraising goal of $100,000. Yes, one hundred thousand. The first year post-transplant alone is estimated to cost $70,000.

Why such big numbers? Here are some of the costs associated with a double-lung transplant to help you wrap your mind around it: co-pays and deductibles for the surgery and hospitalization; post-transplant medications, doctor visits, and lab work; gas, parking, temporary lodging for Tiffany in Baltimore. Initially the plan had been for Jody and Tiffany to relocate to Baltimore for a few months after Jody’s discharge post transplant, but they live “close” enough to be able to make a several-times a week commute to Baltimore instead. But since that “close” drive takes 90+ minutes, they will quickly burn through a lot of gas. Depending on the timing of the transplant and Jody’s condition both pre and post transplant, Tiffany may or may not have enough FMLA leave to keep her job, so our fund-raising goals would help to cover some living expenses over that time as well. Finally, with our eyes on the post-transplant costs, it’s easy to forget the consuming weight of their normal medical expenses where deductibles, co-pays, and co-insurance for oxygen and medications are already piling high.

So where do you fit in to all of this? Give. Pray. Serve. Join Jody’s CF Team. Read on, because I’d love to give you just a few details about some of those ways you can make a difference.

Give. Jody’s website is set up to securely accept donations in two ways, and you can access both of those at this link: http://www.jodyneedslungs.com/donate.html (You can also contact me at jamie@supportjody.com and I can set you up to mail a check if you prefer). You can give a one-time gift of any amount. Every donation matters, no amount too small, and we mean that. Jody and Tiffany have been so blessed by the donations and fundraising efforts that have been underway since this last fall!

A very wise man, when he heard that I was undertaking the goal of raising money for Jody, advised me not to run in circles creating fundraiser after fundraiser, but instead to find 50 people, 100 people even who would commit to giving $1,000 over the course of a year. That alone would cover their expenses. That’s a big ask indeed, but it makes a big impact. Because we want to make that commitment as easy as possible, we have a 1K CLUB option at http://www.jodyneedslungs.com/donate.html. With that option you can use a card to set up a monthly gift of $83.33. I really challenge you to consider if this is an option for you.

Pray. Take a look at Tiffany’s last blog post and read the prayer she posted to the donor. I’m so moved to see her heart for that person and his or her family. Jody and Tiffany need our prayers too. Prayers for strength, for peace, for healing, for hope. Subscribe to Tiffany’s blog, read what’s going on, and pray for their needs as they arise.

Serve. The Care aspect of Jody’s CF (Caring and Fundraising) Team hasn’t had a whole lot to do yet, but at some point Jody and Tiffany will need meals cooked and housework done. Contact me at jamie@supportjody.com if you’d like to be involved in this capacity as the need arises.

Join Jody’s CF Team. A few fundraisers are in the works, including an auction in October. It’s going to be an exciting event, and we’d love to have you be a part of that day. Please contact me if you are interested in donating an item or interested in helping to prepare for this event. We’d welcome your efforts on the fundraising half of Jody’s CF Team, so contact me at jamie@supportjody.com.

I know that Jody and Tiffany feel humbled and grateful for the help they receive, so on their behalf, thank you. Thank you for the role you have played and will play in their lives. Thank you for helping them to be financially prepared for this transplant!!

I really believe that The Church, the Body of Christ is meant to carry each other in hard times. “Carry each other’s burdens, and in this way you will fulfill the law of Christ.” (Galatians 6:2) So I challenge you, I ask you to pray and reflect and consider, what can you do to be a part of carrying Jody and his family through this tough season? This transplant may be the ultimate blessing for them, but the road there is hard, and they need you, your encouragement, your love, your gift of time, and yes, gift of money too.

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

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