Tag Archives: cystic fibrosis

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.

Tags: , ,

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.

Tags: ,

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

 

Tags: , ,

Germs, Infection & Antibiotics

10 Apr

This week has been a little bumpy.  Our youngest daughter is just over a cold which required antibiotics and two different inhalers, five times a day (not uncommon for her when a cold strikes).  While this in itself might stress a parent, I am unfazed.  Instead, my stress comes from fear of this cold spreading around the family and to Jody in particular.  I know that if my girls and I get a cold we will be okay, if Jody gets one, he may not.  Hand sanitizer fills almost every room in our house.  We practice frequent hand washing, and I wear masks when caring for our sick kids.  If I think there is even a slight chance that I might be coming down with something, I sleep on the couch (not because Jody asks me to, but simply because I don’t want to take any chances of making him sick).  Despite all my crazy attempts to keep germs from spreading, they still sometimes do.  This is one of those times.

Jody’s been showing signs of another lung infection.  Sadly, he’s only been off IV’s since mid March when he completed a three-week course of antibiotics.  It’s disheartening for him to have a repeat infection so soon, but, this is the nature of his disease.  Jody was seen in CF Clinic on Tuesday to evaluate his symptoms.  His pulmonary function test showed his lung function has dropped to 25%, an all-time low for him.  He has also lost some weight.  We were completely prepared for a hospitalization, and were quite surprised that his team felt he could start another course of IV antibiotics here at home instead.  The plan was to try a different group of antibiotics than the ones he was on three weeks ago, one being completely new to Jody.

Yesterday afternoon a visiting nurse came to our home to help Jody with getting started on the above meds.  She stayed for a full hour after the new medication was completed to monitor for any side effects.  When there were no signs of a reaction, she left.  Later on Jody’s eyes started to burn, his chest felt tight, and his throat began to feel scratchy, and he was having a hard time staying awake.  Jody has a fairly recent history of an anaphylactic reaction to an antibiotic, and while this wasn’t that, we knew this was not something to mess around with.  And so… we didn’t escape hospitalization after all.  Jody was admitted to Hopkins last night.

After a full night of IV fluids, some Benadryl and IV steroids, he is feeling much better this morning.  As it turns out, the doctors believe this reaction was not from the new medication but from one he has had in the past.   This medication, Meropenem, is in the same family as Cefepime, the one that caused his anaphylaxis before.  You might be thinking, “Then why did they give it to him?”  Well, under the supervision of an allergist Jody was desensitized to this drug and has safely received it since then.  He even had allergy testing done which showed he is not allergic to it.  Because of this, the doctors felt he could safely be given Meropenem, Cefepime’s “Cousin.”  It turns out they were wrong.

Jody absolutely needs IV antibiotics to fight his lung infection so his team of physicians are consulting with an allergist again to devise a plan that will work for him.  This may or may not include desensitizing him to Meropenem.  For right now he is getting oral and inhaled antibiotics.  We pray they can find the right concoction of drugs that his body will safely accept, and will work to treat the infection.

Watching Jody leave last night was hard, but watching our five-year old as she watched him go was heartbreaking.  She stood at the door, crying, saying, “Daddy, I don’t want you to go to the hospital, I don’t want you to go!”  And she cried for a few minutes after he left.  It was the first time I saw her visibly upset over a hospitalization.  Our youngest child, who is three, has trouble with her speech so she isn’t able to tell me how she feels about this, and honestly I don’t think she understands too much of it.  Every now and then she will randomly say, “Daddy, hospital?” in her cute mispronounced way that lets me know she’s missing him too, and wondering why he’s not here.  Any parent wants to protect their children from hurt and pain, and so it saddens me that in this case, I can’t (in fact I know it’s only going to get worse).  Since I can’t change the situation, I can only do my best to ease the hurt.  One way I have done this in the past is to take some of our girls favorite bedtime stories to the hospital and make a video of Jody reading to them.  The girls always get a big smile when I say, “Daddy’s going to read you your bedtime story tonight,” and we open up my laptop to watch him on video.  Sometimes they even say goodnight over Skype.  I am glad that Jody is safe and being well cared for, but I hope that this hospitalization won’t be too long, so that he can come home and read those bedtime stories in person, with two little girls sitting by his side.

Tags: , , ,

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!

Tags:

Potassium, Magnesium, & Oxygen

1 Mar

Jody’s hospital Buddy
(and check out his new hat)

Here is an update on Jody, as he remains in the hospital.  The blood gases he had done showed that his CO2 levels were slightly elevated, but not enough to be the cause of the headaches he’s been experiencing.  This is a good thing!

He is continuing on triple antibiotics, and has been tolerating them well.  Thanks to a newer antibiotic, which is less toxic to the kidneys, his doctors have been able to eliminate Vancomycin from his standard treatment.  Jody has had many problems in the past with this drug negatively impacting his kidneys.  When that happens he can’t be given the full doses of the antibiotics he needs to fight the infection (in order to preserve his kidneys).  The new drug that he is receiving in place of Vancomycin is working well, and his kidney function has been staying within the normal range (a huge relief to me, an ex-nephrology nurse).  This is another good thing because he is now getting the full doses of all the antibiotics he needs.  Hopefully they are the right antibiotics to treat the infection.

Today when the CF doctor rounded he came in Jody’s room just as he was walking back from the bathroom (which is in his room and just a few feet from his bed).  The doctor noticed Jody’s shortness of breath and asked him about it.  Usually when the doctors see Jody he’s sitting in bed, or if we’re at the clinic he’s sitting in a chair, and isn’t showing signs of shortness of breath.  I, on the other hand, see him struggling to catch his breath all.day.long as he performs normal activities of daily living.  My heart breaks for him often when I hear him huffing and puffing, say after a shower, or when doing other simple tasks that shouldn’t cause someone so young to become short of breath.  I wish he knew what it is was like to breathe effortlessly, to take a slow, deep breath and fill his lungs with air.  We have this thing we do, him and I, where we try to mimic the other ones breathing pattern.  I try to keep up with his fast, shallow breathing, but it usually doesn’t last very long.  Breathing like that soon makes me feel short of breath, craving a “normal” slow deep breath to really fill my lungs with air.  Jody on the other hand, tries to keep pace with my infrequent (compared to him) deep breaths, and simply can’t do it.  But maybe someday, post transplant, he’ll be able to breathe like me.

Okay, I realize I’ve gone off on a rabbit trail.  Let us return to today when the CF doctor came in.  Having seen first hand how short of breath even a walk from the bathroom to his bed made him, he told Jody he wants him to start using his oxygen more often.  Basically, he wants him to wear it anytime he’s up doing something.  If he’s sitting down, not doing anything, he can take it off.  This is a change from how often he has been using it.  The idea is that if he is making his body work extra hard to breathe (without using oxygen), it’s going to be harder for his body to fight this infection.  It makes sense, but it might take Jody some getting used to: having his O2 tank permanently attached to his back, and needing to fill and replace tanks often throughout the day.  I feel like this change in and of itself is pushing Jody one step closer to transplant, which is a little unnerving to me, if I’m honest.

Originally the plan for Jody’s discharge was this past Friday.  When that didn’t happen, the plan was for discharge today.  Obviously that is not going to happen either.  The hold up is Jody’s blood work, particularly his magnesium and potassium levels, which are too low.  Both of these electrolytes can cause heart arrhythmias when they are outside of the normal range.  Today he was treated with both IV magnesium and IV potassium.  One of the antibiotics Jody is receiving is most likely the culprit for these low levels.  Regardless, the doctors don’t feel comfortable sending him home until his levels are stable, and as much as I want him home, I want him safe, so I’m okay with that.  He’ll have more blood work drawn tonight and probably again tomorrow.  We are hoping that this corrects itself and he can come home before the snow storm they are predicting.  When that happens he will finish up his IV antibiotics here as he has done many times in the past, and will continue to have blood work drawn at home through a home care agency so those levels can be closely monitored.

Thanks for reading this update and following our journey.  Holding onto hope!

Tags: , ,

The Break’s Over

26 Feb

Many of you probably saw on our Jody Needs Lungs Facebook page that Jody was admitted to the hospital yesterday.  This post will fill you in on all the details.

People often ask me how Jody is doing, and over the last few months my answer has been, “Pretty good, all things considered.”  We’ve very much enjoyed the break from the hospital after spending so much time there late summer/early fall.  Naturally we knew this break wouldn’t last forever and sadly it’s over, at least for now.

Two weeks ago Jody had an appointment in the transplant clinic.  At that appointment his PFT’s (pulmonary function tests) were close to 30%.  He was feeling a little tired but otherwise okay.  Since then the tiredness has increased.  We know that this can be a sign of a CF “flare-up” but it is so easy to justify that symptom away, chalking it up to him being more active.  Nonetheless, we kept watch.  We’ve since noticed that he’s been coughing a little more, feeling more chest tightness, headaches, night sweats, and even had some blood-tinged sputum.  Those things combined, we could no longer deny the inevitable, and made the call to the CF clinic.  Jody was asked to come in that day and to pack a bag because, based on his symptoms, he would probably be staying.

Jody’s PFT’s in clinic yesterday revealed a 4% drop (now at 26%) in a matter of two weeks time.  This is a little alarming, especially when combined with the symptoms described above. The doctor was also a little concerned about his complaint of headaches, especially at night.  Once again they suspect a build-up of CO2 (carbon dioxide).  He currently sleeps using 2 liters of oxygen via nasal cannula, but it might not be enough.  They mentioned possibly even using CPAP at night to keep his airways open should it be warranted.  And so… to figure this all out, Jody once again finds himself at “Hotel” Hopkins.

The plan right now is round-the-clock triple antibiotics to fight the infection in the lungs, and arterial blood gases to confirm if his CO2 level is indeed too high.  In addition to that he gets his nebulizer treatments two or more times a day, chest physical therapy and regular physical therapy three times a day, blood work, chest x-rays, visits from lots of doctors (this is a teaching hospital), and visits from the CF team, just to name a few.  Even his physical therapist commented this afternoon on how many people were in and out of his room this morning.

One other thing I should mention is in regards to Jody’s future lung transplant.  There seems to be disagreement among the CF team here as to whether or not Jody should be made “active” on the list.  Some feel the time is now, while he is healthy enough to withstand the surgery, and others feel he should wait, so as to not start “the clock” (on Jody’s life) prematurely; hoping he might bounce back from this infection, buying him more time.  It’s a fine line to walk, and I can argue both sides.  Thankfully, I know we’re in good hands, that they’re keeping a close watch, and I pray that God himself will make it quite clear when the time is right.

There is no way of knowing how this infection is going to play out.  It could improve with the current antibiotics and we could get another break from hospitals.  Or, on the contrast, it could be the beginning of more to come, which would indeed push us one step closer to transplant.  As I’ve said before, only time will tell.

Now you’ve been updated and know a little better how you can pray for us.  Thank you to those of you who have already been doing so, it is always appreciated.  Thank you also for reading.  I’ll keep you updated as able and if anything changes.

Tags: , , ,

My Story of Hope

9 Jan

Photo by Collecting Wonder

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

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

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

    Yard sale mug & childhood item

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

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

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

My reminder to choose hope

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

Tags: , ,

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.

Tags: , , ,

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.

Tags: , ,

← Older Entries
Newer Entries →