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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?

 

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

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.

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

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.

DSC_0682D

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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