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Celebrating 5 years!

16 Sep

Five years… FIVE YEARS! Yesterday Jody celebrated FIVE YEARS since his transplant (insert celebration emoji’s here)! Since the day of his surgery I couldn’t wait for him to hit this big milestone. I can still remember, as if it were yesterday, sitting across from a doctor at the hospital while he told us it was time for Jody to list for new lungs. This would not be without risks, he said, and it wasn’t a cure. The average transplanted lung lasts only five years he said, and only 50% of patients live five years out a double lung transplant. Those statistics were so daunting. As each year passed we celebrated the milestone and I secretly counted down the years until he would reach five years post.

Having reached the five year mark is no guarantee for another year but my understanding is that it generally means less chance of rejection and overall longer survival rates. The significance of decreased rejection risk is that Jody’s doctors might be able to lower his immunosuppression drugs. While these meds are necessary and have worked well for him, they come with big side effects. It’s as if they are aging his body on the inside. While not everything he deals with can be pinpointed to his meds, it seems the answer he hears most frequently from doctors is that it’s related either to his Cystic Fibrosis (which he still has, just not in his lungs) or the transplant drugs. Some of the issues he has had and/or continues to have are:

  • Kidney stones (his CF causes him to make stones at a remarkable rate; During his last surgery they blasted 12 stones and the doctors were amazed).
  • Gout (he now takes daily meds to help with this but he often experiences flair ups)
  • Fragile bones (he broke his wrist bone as a result of this)
  • Migraines and daily headaches (with a questionable history of seizure/brain injury on his MRI, he now takes meds to prevent both migraines and seizures).
  • Pinched nerve (it took three local ER visits, one hospitalization and a slue of tests to rule out heart/lung issues for this to be diagnosed).
  • Hand, feet and thoracic cramps (the thoracic cramps are painful to watch)
  • Hand shakes (they never stop moving)
  • Bruises easily (he barley touches something and a big bruise appears)
  • Memory loss
  • Hair loss

The list could go on and on. He’s had numerous ER visits and surgeries/procedures since his transplant. Remember the broken sternal wires he had to have removed? The bronchoscopy that caused a collapsed lung and need for chest tube and hospitalization? We know another surgery to remove more kidney stones is in his future. Despite all these things, Jody would say post transplant life is pretty good. If you’ve followed Jody’s story you know he’s not a complainer. He accepts his “issues” and doesn’t let them stop him; they pale in comparison to the issues his old CF lungs caused him.

Recently I was listening to the radio in the car and a singer was interviewed and talked about seeing the beauty in hard times. It made me reflect on the hard time we experienced. While in that season of life, fearfully watching Jody’s decline, so. many. hospitalizations., and when the demands of care giving, parenting and work seemed overwhelming, it certainly wasn’t easy for me to ‘see the beauty.’ I couldn’t then… but I can now.

I now see the beauty in the timing of the decline in Jody’s health and need for transplant. While it was really hard to manage everything when our children were so young and we needed lots of help with childcare, our girls are now active in school and sports and we can be involved too. Our oldest daughter swims competitively 11 months of the year and neither Jody nor I have ever had to miss a swim meet because of a hospitalization. When our girls need help with homework, we can give it freely. I cannot imagine how difficult it would be to juggle our life today if Jody were sick and living in and out of the hospital. Our daughters barely remember life when Jody was sick and this, in and of itself, is beautiful.

I now see the beauty in the decline. I can’t imagine saying that five years ago. It was so hard to watch. I hated seeing Jody tied down by oxygen tubing. Listening to his struggle to breathe was heartbreaking. It was sad to see him give up the things he loves: woodworking, yard work, volleyball, etc. But… without the decline there would be no transplant. Without the transplant he wouldn’t have the freedom he has today. He’s back to doing all of those things above and so much more. Before Jody got sick his lung function averaged around 50%, and he did all those activities despite it. Sure, he had lots of coughing and got winded quicker than most people, but he was okay with 50%, it was all he really knew (FYI at time of transplant his lung function was 21%). Today Jody’s lung function is over 100%! If it wasn’t for the decline we would have held onto that 50% with a tight grip but look what happened when we were forced to let go.

I now see the beauty in God’s people. This was pretty easy to see while in the thick of it, but looking back I can better see the magnitude of blessings. People were so generous to us when we needed it most. That generosity came in the form of fundraisers, practical gifts, pick-me-up gifts, acts of service, words of encouragement, prayer and monetary gifts. Friends, family, acquaintances and even strangers stepped up to support us in incredible ways. It’s humbling and we are deeply grateful.

I now see the beauty in the place. How fortunate we were that Jody was able to receive (and continue to receive) his care from one of the best hospitals in the country. This wasn’t always the case. When we were discouraged by his care and sought out the CF clinic at Johns Hopkins, it was closed to us (they, ‘couldn’t accept everyone,’ we were told, there just wasn’t room). It was only through a friend who knew a doctor that Jody was accepted into their CF program. This was a game changer. The care was aggressive and research driven. Although it couldn’t prevent the decline in Jody’s health he was a known patient when it came time for transplant (often patients transfer to a transplant hospital just for the transplant itself). I had so much peace of mind knowing he was in a safe place with a team that knew him and was being well cared for, even when I wasn’t there.

I now see the beauty in the lessons. God clearly asked me to chose hope in a time when I felt hopeless. I wish I could say I did it without hesitation but I fought and struggled with it until I finally agreed to try. Beyond the risks of the surgery itself, it was difficult to be hopeful when I heard things like ‘50% chance of living five years.’ In the end, I wish I had trusted more, hoped more. God knew. The success of Jody’s transplant is no surprise to Him. He knew it was only a matter of time until I would be writing this post, celebrating five years of not just living but thriving!

In anticipation of the five year mark we thought about throwing a celebratory party but opted instead for the quietness of a weekend away. We stayed at a simple cabin in the mountains and enjoyed spending time together, uninhibited by disease or illness. Although the last five years have not been without any medical issues, we can’t put into words how deeply thankful we are for how well Jody has done since his transplant. Dare we hope for another good five years? I say, yes!

Five years post double lung transplant

Happy 5th Breathday Jody!

If like me, you’d like to take a trip down memory lane and see how far Jody has come, click on the link below to watch a video of Jody’s journey. I made this video for the one year celebration and we enjoy watching it every year on the anniversary of his transplant. https://youtu.be/RQQnI3Izo2M

Thankfulness is not cliché

23 Nov

Thanksgiving 2017

Thanksgiving 2017

Thanksgiving is almost over… Some of you are probably out shopping as I write this post. On this day of appreciation I can’t help but feel humbled by the many blessings I’ve been given. At the top of my list are Jody’s recycled lungs and the incredible gift of health they have given him. It might sound cliché, like one of those obligatory answers I should give when someone asks what I’m thankful for this season. The truth is, my life our lives would be very different if it weren’t for Jody’s gift of life and there’s nothing cliché about that in my heart.

When I started writing this post, I noticed that it’s been a year since I published my last one. One whole year!?! It used to really annoy me when I would follow a CF story through transplant and suddenly that person would drop off the face of the earth. I often wondered how they were doing and wished for updates from time to time. I told myself that if/when Jody got transplanted I would not do that to my faithful blog readers. Yet… here I sit, one year since my last post and I totally get it. Life is good again. It’s marvelous not to have things to write about. Sure, Jody has had minor issues here and there over the last year but nothing crucial that I felt warranted a post. While I haven’t written, we didn’t forget about you and are so very thankful for the support we received from you when we needed it most.

Jody’s new lungs have brought so much life back to our family. Jody is doing woodworking again (he’s so very talented) and he’s been busy with projects around the house. This past year Jody even started playing volleyball again. He and I met at a church playing pick-up volleyball each week. At that point in his life Jody’s CF was stable but his lung function hung around 50%. It wasn’t until years later when his lung function had fallen into the 20-30% range that Jody had to give up volleyball. It was hard to watch him give up the things he loved simply because he couldn’t breathe well enough to do them. Isn’t breathing a right afforded to everyone? When Jody started playing volleyball this year, lung function now over 100%, I remember him coming home that first night saying excitedly, “Tiff! I can’t believe this is what it is like for you to play volleyball!!!” I knew exactly what he meant. It was the first time he played a sport and could breathe like the rest of us. He couldn’t get over the fact that he wasn’t winded and didn’t have any major coughing spells, so typical of his old CF lungs. It gives me great joy to see him active again doing the things he loves.

As a whole our family is doing well. We have been in our new-to-us home for a year and a half now and are loving it, house projects and all. Our oldest daughter is nine and has a newfound passion for competitive swimming. We’re always on the go taxiing her between practices and swim meets but we love it! Prior to transplant this simply wouldn’t have been possible. Our youngest daughter turned seven this month. She’s as silly and independent as ever. She doesn’t remember much of our life before transplant, which seems crazy but she was young and I suppose it’s a good thing she doesn’t remember. Instead, she gets to reap the benefits of growing up with an active, present, “healthy” Dad. As for me, this past year I’ve taken on the challenge of focusing more on my health and doing what I can to live a healthier lifestyle and be a better role model for my girls. This has meant lots of exercise and discipline but the hard work is paying off.

Since this is Thanksgiving it seemed like the right time to reflect on the gratitude I feel inside and to share a brief update. Never far from my thoughts are Jody’s donor family and so many other’s I know who are missing loved ones today and every day. We have written Jody’s donor family (through the hospital) a couple of times but have not received any correspondence from them in return. Obviously we’d love to know more about his donor and family but we completely understand how painful communication might be for them. We patiently wait for a time when they might be ready to reach out… and if that day never comes, we’re okay with that too. Our desire is to support them however they need it as they grieve and heal.

I hope in addition to parade and football watching, cooking and baking, fun, fellowship and perhaps shopping, that you too, have taken some time to stop and reflect on all the things in your life for which you are (or should be) thankful. James 1:17 says, “Every good and perfect gift is from above, coming down from the Father of the heavenly lights…” (NIV). I am humbled by the perfect gifts I have been given, I hope you are too. Happy Thanksgiving!

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Jody’s 2nd Breathday

15 Sep

Happy 2nd Breathday, Jody! (Cake colors chosen to match the colors of the Donate Life organization)

Today we celebrate.  Today we remember.  Today we grieve.  This is the day, two years ago, when Jody received his new recycled lungs.  Two years!?!?  Has it really been that long already?!  This time has passed quickly, yet for Jody’s donor family it must feel like an eternity.  It’s been two. long. years. since they hugged, kissed, laughed, cried and spent time with their loved one.  How they must ache for a day, an hour, or even a moment more.  We couldn’t possibly get through this day without thinking of this family and grieving with them over a life gone too soon.  I hold onto hope that someday we will have the opportunity to meet or communicate with this family, to let them listen to Jody’s their loved one’s lungs, and to learn more about the person who gave him life.  Until that day, when our donor family is ready, be it one month or five years, we will honor them and wait with heavy hearts as we remember their ultimate sacrifice.

I’d like to think that somewhere on the East Coast this donor family is thinking of us today too.  I bet they’re wondering how Jody is doing, or rather, how the lungs are doing.  The truth is… they are functioning fantastically!  Honestly, we couldn’t have imagined it so well, and really don’t understand how it’s even possible (apart from Divine intervention).  Two years ago we were tangled in the chains of Jody’s old lungs, living under the dictatorship of Cystic Fibrosis and spending so.much.time. in the hospital.  Jody’s new lungs have broken those chains and brought freedom into our lives.   Obviously there are still medications (lots and lots of medications), blood work, tests and doctors appointments but that pales in comparison to the way things were just two years back.

Organ donation does powerful things, Jody is living proof!  Today we remember Jody’s donor family who selflessly chose to give life in a painful time of death. We grieve for his donor and honor his/her memory.  Today we also celebrate Jody’s profound courage and strength in the midst of a debilitating illness, death-defying surgery, and lengthy recovery.  We celebrate his fight and incredible success.  To God be the glory, great things He hath done!

“Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows.” 

James 1:17

Now that this post is complete I’m going to take a few minutes to watch Jody’s transplant video and reminisce, won’t you join me?

 

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2015: The Year of Change

1 Jan

As we welcome in the New Year I find myself reflecting on the year 2015. For me this year will always be remembered as the year of change.

I have always been anti-New Year’s resolutions, figuring it’s probably best not to start the new year by setting myself up for failure. A couple of years ago someone recommended I read the book, One Word. This book suggests choosing one word to use as the theme of your year instead of a typical resolution which you’re sure to abandon by March. It’s One Word for One Year for One Life, as the book describes. Instantly I liked the idea.

In 2014 my One Word fell into my lap. It was almost forced on me. That word was hope. It was a time in my life when things felt quite hopeless. Our lives were consumed by disease and hospitalizations. We had just learned that Jody would need a double lung transplant if he were to survive Cystic Fibrosis. Even transplant was no guarantee of a long life. Hope did not come easy to me. But God asked me over and over to be hopeful until finally I agreed to try. It turns out 2014 was the year Jody received his new lungs which have proved to be a life-changer. This leads me to 2015…

Early on in January of 2015 I sensed my One Word should be ‘change.’ Jody was still recovering from his transplant and having been warned by his transplant coordinator, there was no guarantee that our time spent sleeping in hospitals was over. Still I sensed our lives were changing in more ways than one.

Obviously the biggest life-changer, one which can never be topped was Jody’s new lungs. While he received them in 2014, 2015 was the year we were able to watch them blossom. With each passing month I could see life returning to him more and more. The further out he went from hospitalizations and frequent check-ups, the easier it was to believe that things really were going to change for our family. This brought healing to my heart.

Another welcome change in 2015 was a new job for me. I spent the last 14.5 years working for a local hospital, the last nine of which were in obstetrics. I had known for quite some time that I needed was ready for a change but didn’t know when, where or how it would happen.  Throughout the year, I had three great opportunities arise and ended up choosing to return to my dialysis roots. I accepted a position with DaVita Dialysis working as a home hemodialysis nurse educator (did you know people are doing hemodialysis independently at home these days?). This was a scary move because it meant giving up benefits I had acquired after so many years as a hospital employee. It also meant no fluffy bank of paid time off if Jody were to get sick, as well as a change in insurance (which was huge and scary for us). Still, I felt this was the change for which I had prayed. I am enjoying my new job immensely and having all weekends and holidays off is an added bonus.

The last big change for us in 2015 was listing our house for sale and accepting an offer on it in December. We have tried to sell our home numerous times throughout the nearly 11 years we have lived in it. We live along a busy, four-lane road with businesses surrounding so it hasn’t been an easy property to sell, despite all the remodeling we have done. We are excited about this long-desired change (not so much the packing part), and look forward to our move in February, Lord willing.

Change is often hard but it was very welcome in 2015. I’m glad it was the One Word God placed on my heart early in the year. Jody’s newfound health allowed our family to go, do and see things new and old. This change was desperately needed. When I wasn’t sure I would ever find a new job that was suitable, I clung to my One Word, believing it was applicable to this area of my life as well. And it was. Now I wake up in the morning without dread for my workday; a wonderful change. Selling our house after years of trying still seems unbelievable. Will this change really happen? I hope so. It seems like the perfect ending to a nearly perfect year.

I’m so thankful for all the changes that 2015 brought and I look forward to watching 2016 unfold. I especially pray it will be another year full of health for Jody. I’m still not sure what my One Word for 2016 will be, but I’m asking God to speak it to me. Consider joining me by asking God for your One Word for your One Year for your One Life.

Happy New Year!

Highlights of 2015:
– Jody reached 100% lung function (from 22% pre-transplant)
– Speaking in front of 1000+ people at the local Cystic Fibrosis walk
– Family day trips to the beach and afternoons spent at the pool
– Celebrating 10 years of marriage in June
– Jody celebrated one year post transplant in September
– Vacation to Riviera Maya, Mexico in November (no kids)

2015_10_17_Snellbakers_(0047_of_0110)_Color A

Photo courtesy of John Martin Photography

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Remembering 9.15.14

16 Sep

Transplant stats

Transplant stats chalkboard art

On this day, at this time (0845), one year ago, I sat at a table in the family waiting room of the cardiothoracic surgical ICU at Johns Hopkins Hospital.  It had been a whirlwind of events over the previous 36 hours and I had finally gotten some sleep and was ready to share the story of Jody’s double-lung transplant.  I remember feeling such a sense of hope and wonder as well as gratitude and grief.  My heart ached for the family who suddenly mourned the loss of life, a family to which I felt instantly connected through organ donation.  Tears flowed as I typed and they have continued to flow throughout this first year following Jody’s transplant.

Sometimes the tears come when I’m driving alone and thinking of the donor family or thanking God for Jody’s gift of health.  Often they come when I’m watching Jody do something I know he couldn’t have done a year ago, like jumping off a diving board and swimming the entire length of a pool, or racing our girls in the yard, or even snow blowing our driveway in the freezing cold.  The other week I watched him play a Frisbee game with his friends, running back and forth, effortlessly and free of an oxygen tank, and again my eyes began to water.  I’m so very grateful and no amount of words can adequately express what I feel in my heart.

It is so hard for me to believe it has been one year since Jody’s surgery.  I remember it like it was yesterday and the entire experience has filled my thoughts so much this past year, sometimes more than I would have liked.  It was such a life altering experience, filled with highs and lows, non of which could be too quickly forgotten.  Jody, on the other hand, remembers very little details about his time in the hospital which is probably a blessing.  I’m glad he can’t remember how miserable he was with that breathing tube down his throat.  I’m glad he doesn’t know all the silly things he said and did while experiencing hallucinations as a side effect of his medication.  I’m so glad he can’t remember what it was like to have his oxygen sats drop to the 60’s and not be given oxygen because it would be “toxic” to his new lungs (just watching it was scary enough).  I’m glad he doesn’t remember when he felt like giving up.  But I remember.

When I look at photos of Jody’s transplant I can’t see the picture as you would, I have a memory and an emotion attached to it.  You might simply see a picture of Jody and I together in the hall, smiling.  I know, for instance, that the picture was taken after his return to the ICU when he could barely walk 50 feet (and had been walking two miles a day just a few days prior).  I know that I took that picture when he needed to stop for a break during that 50 foot walk.  The picture reminds me of how I felt when taking it.  My mind is full of memories and especially in the first few months following transplant, normal conversations were hard.  My husband had just had two vital organs removed and someone else’s organs put inside him, small talk just didn’t interest me.  It seemed everything around me reminded me of transplant in some weird way and so it invaded my thoughts often in those first few months after returning home.

Yesterday was just another day on this journey we call life, but it was a big, important day to me.  It was one year since Jody’s surgery and it held so much meaning.  He survived!  I survived!  We, as a family, survived!  I remember writing the blog post Two (months) Down, Ten (months) to Go, referring to the 12 months the doctors say it takes to recover from a double-lung transplant, and thinking how far away that sounded.  Jody was so weak and frail when he came home from the hospital.  He was down to 100 pounds and it seemed like even the slightest touch hurt him.  I couldn’t wait until I could hug him like normal again and not worry about hurting him or feeling every last one of his bones.  God is good and Jody has made it through those first 12 months!  In fact, not only is he living, he is thriving!  His lung function is better than it has ever been; yesterday he blew 105%!  He was also told yesterday that he can stop checking his blood sugar because he hasn’t been requiring insulin and his post-transplant diabetes seems to have resolved (since he is on a lower dose of prednisone).  His hemoglobin A1C, a measurement of the overall effectiveness of blood glucose control over a period of about three months, was 5.1 (the last time they checked it, it was 6.3 which was still higher than they wanted for him to be declared diabetic free).  I remember in the early post-op days, Jody’s transplant coordinator talked about post-transplant diabetes and that “sometimes” people can get rid of it (although she didn’t sound very hopeful that that would be the case with Jody).  I remember praying about it and have enjoyed watching his sugars improve with each tapering dose of his steroid.  How awesome it is for this to be gone and what a 1st breathday gift!  Hopkins will continue to check his level every six months, and we know it could come back, but for now we celebrate this small milestone and no more finger sticks for Jody.

This past year has been a year of physical healing for Jody and emotional healing for me.  I can honestly say there were times following transplant, particularly when I went back to work, where I felt like I was going to lose my mind.  I was pulled in so many different directions caring for everyone and everything.  I ran the house, cared for Jody, cared for our daughters, cared for my patients, and gave up many days off only to spend them at Johns Hopkins.  I was exhausted, physically and emotionally.  It was about that time I wrote this blog post.  The good news is I pushed through.  God strengthened me and slowly but surely Jody began to improve.  He could look after himself and soon he was helping with our girls and doing small things around the house, like the post I wrote about how significant it was to watch him take out the trash.

Today our lives are so different, not just from one year ago when Jody was recovering from surgery, but from two and three years ago when so much of our time revolved around illness and hospitalizations with Jody experiencing frequent lung infections resulting from his Cystic Fibrosis.  I cannot believe we have gone an entire year without ANY hospitalizations!!!  It’s so foreign to us but it’s good.  Real good.

I do not understand why God chooses to allow healing for some and not for others.  I know many CF wives who have lost husbands, some before transplant and some after transplant.  I don’t know how long God will allow Jody the health that he has right now but I praise Him for it.  I recognize that Jody’s complete healing can only come Him.  I also thank God for the healing He has begun in my heart and pray that He will help me to put my full trust in Him for my/our future, and not live a life of fear.

And we know that in all things God works for the good of those who love him, who have been called according to his purpose. Romans 8:28 NIV

This reflection of transplant has clearly been more my viewpoint than Jody’s (this is, after all, a blog about being a CF wife).  I don’t make light of all that Jody endured because I know he took a beating; I witnessed it first hand.  I remember so many times thinking to myself how strong and brave he is, and a true inspiration.  Even in his darkest moments he didn’t give up (and there were a few times I know he wanted to).  I’m so proud of Jody for the way he adheres to his post-transplant routine, full of medications, rehab (for the first six months), lab draws and self-monitoring.  It has been pure joy to watch him blossom over this past year.  I can’t imagine doing life with anyone but him.

As I draw this post to a close I have a few things to share with you.  First is a video* I made where you can see for yourself the difference Jody’s new lungs have made.  It’s a video of him doing his lung function tests before and after transplant.  Jody has a hard time watching this video because he says it was one of the few times he felt defeated (giving it his all and it not being good enough).  Before watching, take a deep breath and quickly blow out all your air… hold it for as long as you can.  Did you cough?  Did it make you short of breath?  Watch Jody’s before and after, to see the difference transplant has made in his life.

The second is a video* which you may have seen already since I posted it on our Jody Needs Lungs Facebook page yesterday.  This is a video which reflects upon Jody’s five weeks in the hospital and his first year of recovery.

Finally I’m sharing a few photos.

Full of health
1st Breathday cake
Together we survived!

*If you are an email subscriber you may have to visit my actual website to watch the above videos.

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The Goodness of Summer & Health

25 Aug

IMG_0005A

Silly acts that fill my heart with gratitude for life, health, and a donor that made it all possible.

Can it be true that the end of summer is here?  A few weeks ago I had a friend ask me if I had any blog posts planned.  I answered, “Yes! I’ve got lots of them planned… but I’m too busy living life.”  She simply responded, “Good! That’s how it should be!”  She understood what I was implying.  It wasn’t that I had a crazy hectic schedule and no time for blogging.  It wasn’t that I didn’t want to do it.  Instead, for the first time in what feels like a long time, our lives were not being dictated by disease and doctors and we were enjoying it to the fullest.

June marked nine months since Jody’s double lung transplant.  Throughout this first year he has had bronchoscopies done every three months to check for rejection (some types of rejection can only be identified by tissue samples taken from the lungs).  Praise God his bronchs have continued to show no signs of rejection!  We did learn at his nine month bronch that one of the internal wires used to hold Jody’s ribs and sternum together is broken (which we suspected).  At this point his bones have fused together well enough that there is no need for concern.  The loose wire rubbing does cause Jody mild discomfort but as long as it is tolerable the doctors prefer to leave it alone.

Jody has made great progress and in June he was cleared to move his transplant clinic visits to every three months.  This was a huge, exciting step for us!  Throughout his life Jody had routine check-ups for his cystic fibrosis every three months.  In the last few years those visits became much more frequent.  The year before transplant it felt like Hopkins had become our second home.  After transplant the visits to our second home continued weekly, bi-weekly, every three weeks, then monthly.  Clinic days are long and take up most of the day, especially when driving time is factored in.  You can imagine our excitement when in June (nine months out), Jody was cleared for visits every three months.  It has been years since Jody has been able to go three months without seeing a doctor.  Oh the freedom every three month visits brings!

At home Jody was also cleared to bump his weekly bloodwork to every other week.  The doctors had a hard time finding the right dose of one of his anti-rejection medication because it frequently showed up too high or too low in his blood.  Finally, after nine months, they seem to have found the dose that is right for him, which is why he is now drawing his labs every other week.  Jody continues to monitor his vital signs and lung function twice a day so he can pick up on the slightest change and alert his medical team.

Today we sent our oldest daughter off to first grade.  Not only does this signify the end of summer but also the nearing of the first anniversary of Jody’s transplant.  How different our lives are today from a year ago.  I remember how hard it was for me last summer to be constantly (or so it felt) inundated with pictures and status updates of all the wonderful things people were doing and fun places they were going over the summer (thanks in part to the prevalence of social media).  Instead of sunny days spent at the pool or beach, many of mine were spent at a hospital bedside, and with concern for the life of my husband.  Last year Jody and I even celebrated our ninth anniversary in a hospital room.  I’m so thankful that this year, we rang in our 10th anniversary on the beach.  It was one day, but it signified a lot more than that in my soul.  It was the return of life and of things enjoyed.  The rest of our summer included countless afternoons by the pool, multiple day trips to the beach, the Baltimore zoo, Lake Tobias, play dates, the Minion movie, birthday parties, time at the park, horse rides, fishing, Jody teaching a painting class of 40 people, a crabbing trip, a truck show, date nights and more.  Our summer did not include any hospitalizations and only one doctors visit in the beginning of June.

The ending of summer is bittersweet.  It has been so good and full of health.  My stress level naturally climbs at the thought of the approaching cold and flu season and the diligence it requires to keep Jody healthy.  But it’s worth it!  I pray that God would continue to protect him from the germs that surround  and that the upcoming winter would be just as awesome for our family as the summer has been.

Merry Christmas ’14

24 Dec

Merry Christmas to you, our friends, family, healthcare workers & readers!  Thank you for the support you have shown us throughout this past year.  We have much to be thankful for, beginning with a baby, born in a manger, some 2000 years ago who brought forgiveness and hope, life and freedom.  This Christmas may you feel His presence in all you do.  And when the wrapping paper starts flying, the family starts gathering, and the craziness begins, remember to take a step back, relish the moment and just breathe…

Christmas collage

This Christmas we remember those in our lives who have lost loved ones and find this to be an especially difficult time of year.  We also remember Jody’s donor family, knowing that this year there will be one less person sitting around their Christmas table, and the heartache that must cause them.  This year we bought a special ornament to hang on our tree in honor of his donor.  The words of this ornament couldn’t be more true as his donor left behind life… for Jody… and for other organ recipients.  We’re so thankful to God, his donor, and donor family for this great gift.  Our gift to them is that we will live life, protect Jody’s lungs, and most of all… never forget.

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Thank you, Transplant, for waiting two more days

25 Aug

Five months ago, to the day, Jody was officially listed for his new lungs.  When that happened, there were two things I feared transplant would interfere with: Our oldest daughter’s birthday, and her first day of Kindergarten.  Obviously there were other things I preferred not to miss, but those were the biggest.  I naively assumed he would have been transplanted by now, so as the time drew closer I felt nervous that my fear might actually become reality.  Today I’m happy to report that it didn’t!  Thank you, transplant, for waiting at least two more days.

Tabitha's 6th Birthday

Tabitha’s 6th Birthday

Since I normally blog about sickness, and heavy-to-read topics (and there will be a little of that in this post too), I thought I’d change it up a bit and add some fun and lightness into this post.  Since February, when we took our girls to see Disney’s Frozen movie, Tabitha, our oldest, has been obsessed with the movie.  She’s been talking about her “Frozen” birthday party for months.  Because there are so many unknowns in our lives right now, and despite the fact that she has had a birthday party each year, we decided to forgo the party this year.  Tabitha had a hard time accepting and understanding this so we promised her a Frozen Fun Day at home instead, just the four of us.  The hardest thing for me about not having a party was not making her a nice cake, something I have always done and enjoyed.  As Tabby’s birthday grew closer, I

Tabitha's "Frozen" Cake

Tabitha’s “Frozen” Cake

said, “the heck with it,” and decided to go for the cake I had been planning to make, knowing it would never get eaten by our family of four, but not really caring.  Having no training in cake decoration, only learn-as-I-go experience, I’m happy with how the cake turned out.  More importantly, the birthday girl loved it!  We had a great day celebrating Tabitha’s six years of life, thankfully together as a family, and in the end I don’t think she was too bothered by the fact that she didn’t have party.

6th Birthday, Ice princess, Tabitha.

6th Birthday, Ice princess, Tabitha.

Frozen Fun Day completed (thanks again transplant for waiting), today marked another milestone, Tabitha’s first day of Kindergarten.  She was very nervous about this, especially getting on the bus, but thankfully, it went well.  I didn’t even shed a tear until after the bus pulled away.  Here are a few of my favorite shots from the morning.

1st Day of Kindergarten

1st Day of Kindergarten

I’m so relieved, and thankful, that we got to experience these important days with Tabitha.  I’m also grateful that Jody was out of the hospital and well enough to spend this time with us.  Last week, after four days on IV antibiotics, he seemed to be getting worse and we questioned if he might end up admitted.  He felt achy and extremely fatigued, more so than normal.  He spent most of the week in bed sleeping and joked that he felt like a newborn, basically just eating and sleeping.  We figured he might have picked up a virus and needed to do what his body was telling him to do to fight it off.  We’ve been told that for people with CF, especially end-stage CF, a simple virus can hit them hard and take a while (even six weeks) to go away.  Thankfully after three days of rest, he seems to be feeling better.  I never quite feel like he’s off-the-hook when it comes to bacteria and viruses, but I’m glad to see him up, moving around, and spending time with us again.  I would like to ask for prayers that this continues.  Our youngest daughter woke up this morning with a nose that’s running like a faucet, probably a viral infection that will just take time to go away.  Jody can’t afford to get this.  I can’t afford to get this (I need to be healthy and ready to be at his bedside when he gets his new lungs).  Please pray that Piper doesn’t share her sick germs and that her symptoms disappear as quickly as they came.

Thanks for reading.  I hope you enjoyed the pictures (click them to enlarge) and a slightly different, more fun and easy-to-read post.

 

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Birthday Fun

5 Feb

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

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

8:00 am:  Breakfast in bed.

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

10:00 am:  Presents of course.

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

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

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

2:00 pm:  Birthday banner fun & photos.

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

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

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

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

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

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

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

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

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

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My Story of Hope

9 Jan

Photo by Collecting Wonder

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

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

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

    Yard sale mug & childhood item

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

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

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

My reminder to choose hope

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

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