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?

 

Sternal Wires

4 Aug Break points in the sternal wires

Hello there! How’ve you been? I’ve been quiet on the blog for the past seven months and for the most part, all has been well for Jody us over that period of time. We had one threat of a hospitalization in April but thankfully it was avoided. Probably the most exciting thing that happened to us during this time was selling our home of 11 years, moving into an apartment for two months and finally, buying our new home in April. Our “new” home was built in the early 70’s so we have big dreams about all the changes and upgrades we’d eventually like to make (it’s good this will likely be our “forever” home because it might just take us that long to carry out our plans). Jody’s to-do list seems a mile long and sometimes he feels overwhelmed by it. When I hear him talk about how much he has to do I’m reminded of a time, not so long ago, when he yearned to be able to put his hands-on, fixer-upper, woodworking skills to good use. Instead, during that time he and his new friend Tank (aka his oxygen tank) spent a lot of time getting to know each other, home projects not included. Despite his never-ending project list I know Jody is excited about getting his hands dirty again and what a great job of it he has done! Perhaps I’ll write another post about some of the improvements he’s made to our new home and include some before and after pictures. I mean really, who doesn’t love a good before and after photo?

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Break points in the sternal wires

Jody clearly keeps himself pretty active, thanks be to his recycled lungs. Unfortunately, however, this activity has caused him some recent problems. A couple of weeks ago he started experiencing sharp, jagging pain in his chest area. His transplant team sent him for a chest x-ray which confirmed that his sternal wires (the wires placed during transplant to hold his cracked sternum together) were broken in SIX places!!! We were told this could likely be fixed through laparoscopic surgery with an overnight stay for observation only.

Yesterday we met with Dr. Bush, the cardiothoracic surgeon at Hopkins to discuss the surgery needed to remove the wires. On a side note, Jody’s transplant surgeon, Dr. Shah, moved to Tennessee last year and Dr. Bush is his replacement (from San Francisco). It was great to finally meet him and we were impressed by how personable he was. Since November Dr. Bush has performed 12 lung transplants at Hopkins (and who knows how many heart transplants?). Now back to Jody… In our meeting with the surgeon yesterday we learned that removing Jody’s internal wires would be a little more complicated than originally thought.

It is apparently not uncommon for one to have a (as in one) break in chest wires a few years out of transplant when activity level picks up. What typically happens is that once that wire breaks open it releases the pressure on the wire (which was wrapped tight around the bones to hold them together until fused). After this release in pressure, the wire doesn’t normally break again and can be pulled out in one piece, done as simple outpatient surgery. Dr. Bush seemed at a loss for why Jody’s wires continued to break in so many places since they were no longer under pressure. By that point though it didn’t really matter so much why they broke but rather how to remove them.

Dr. Bush planned to make two incisions along Jody’s original transplant scar line. Using guided fluoroscopy (a live x-ray that shows movement) he would locate the migrating pieces and remove them, along with the intact wire. The location of the small pieces and the degree of scarring between the lungs and chest wall would determine the level of difficulty in removing the pieces. It is expected after lung transplant to have some degree of scarring. Too much scarring would disqualify Jody from ever being able to undergo a second double-lung transplant should he need one. Dr. Bush said this surgery may or may not give us an indication on how much scarring is present. He also noted the likelihood of Jody needing chest tubes after surgery to allow for drainage of air and blood. These were quite painful for him following transplant so we hoped they can be avoided. If chest tubes would be used it would require Jody to spend a few days in the hospital.  This wasn’t exactly what we wanted to hear but we’ve learned to roll with the punches.

Shortly after we got home from our pre-op appointments at Hopkins yesterday, Jody received a call from a doctor stating that his potassium (K+) level drawn earlier in the day was high (6.4) and he needed to go to the ER for IV fluids. The normal range for K+ is 3.5-5.5 and while it might not seem like he was much over the normal range, this is an electrolyte that impacts the rhythm of the heart and therefore needed to be treated. Any dialysis nurse will tell you they have lost patients due to high serum (blood) potassium levels. Jody’s kidney function is decreased but not enough to cause such a spike in his K+. After some discussion it was decided that he would come to Hopkins to be directly admitted instead of going to a local ER. Once at Hopkins they redrew his labs and started an IV while waiting for the labwork to come back. They planned to give him laxatives throughout the night that would help him excrete the potassium through his bowels (so much for a good night’s sleep). If the K+ level would not come down, surgery this morning was going to be cancelled. This was the point when I put a call out via our Jody Needs Lungs Facebook page, asking you to pray. Jody took his first dose of the laxative and 30 seconds later the doctor came in and said his repeat K+ level as 4.9. Normal! What lousy timing, had he come in 30 seconds sooner Jody wouldn’t have needed to take the laxative. Still, we were glad that our prayers had been answered and his level was back to normal. It does make us question the accuracy of the original result. Jody still received IV fluids overnight to help improve his kidney function but at least he no longer needed to be hooked up to the heart monitor nor receive multiple laxatives throughout the night.

This morning went off without a hitch. His potassium level stayed down throughout the night.  A repeat chest x-ray today showed more broken wires but one of the broken pieces migrated to a better, more superficial, area. The surgeon seemed pretty excited about this, noting that it would make the piece much easier to remove.  This would require another lower incision but seriously, after a lifetime of scar-inflicting procedures/surgeries, what was one more? Again the surgeon questioned why his wires migrated so freely but soon they would be gone altogether. Shortly thereafter Jody left for the OR.

 

*Post-Surgical Update*

As I was working on this post while Jody was in surgery Dr. Bush came out much sooner than expected to tell me surgery was done. His exact words were, “This was the easiest wire removal I’ve ever done, it was bizarre!” I don’t think it was bizarre, I think it was God! The wires were all superficial so he didn’t even see the lungs. He also mentioned that Jody must not have much scarring because of the way the wires were able to migrate freely (again, totally God!). No chest tubes. No exploring. No complications. Easy peasy. Dr. Bush even told me he could go home TODAY!!! Once again I felt humbled by God’s grace and the miracles He has performed in Jody’s life.

As it turns out we won’t be heading home today.  The anesthesia used for Jody’s surgery hit him hard and he spent all afternoon fighting nausea, vomiting and light-headedness.  He is still very sleepy but is finally starting to feel a little better. Pain has been minimal. I’m confident we’ll be home tomorrow and am glad to be on the other end of this.  I’m especially relieved that surgery went so much better than anticipated.  We appreciate your prayer support and believe it impacted the outcome of the events of the last two days. Here’s to Jody living pain and wire free!

Just for fun:  On the right is a picture Dr. Bush took for me. He laid the wires out as they were positioned in Jody’s chest (Picture Jody lying on the OR table with his head to the right in this picture and feet to the left). Eight broken pieces! No wonder the poor guy was in so much pain with all those wires floating around.

 

 

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)

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Photo courtesy of John Martin Photography

Dangerously Immunosuppressed

6 Oct

It’s never favorable to hear a doctor (or in this case, transplant coordinator) say, “It’s not good!” when referring to something pertaining to your health.  This was the news Jody received yesterday after his bi-weekly blood work was reviewed by his Hopkins team.  As you probably know, any organ recipient must take medication to lower their immune system and prevent their body from rejecting the donated organ.  Lung transplant recipients require high doses of immunosuppressants and it’s a fine line they walk between their immune system being under or over suppressed; Under puts them at risk for rejection, over puts them at risk for infection/illness.

Jody’s levels have been up and down quite a bit this past year.  When he’s had a few weeks of stable lab work, meaning his anti-rejection medication is in the desired range, and we think they’ve found the perfect dose for him… it randomly goes out the window.  Despite no change in dosage or routine, his levels come back high or low and his meds need to be adjusted again.  While this isn’t ideal and none of us really know why Jody’s body responds this way it hasn’t been a serious concern… until now.

Last weeks blood work once again showed an out-of-the-blue high level of one of his anti-rejection (immunosuppression) drugs.  Unlike before, this caused his infection-fighting white blood cells (WBC’s), a key part to ones immune system, to drop dangerously low.  Jody was sent for STAT labs yesterday since it had been five days from the time of this critical result (it seems the local lab never sent the results to Hopkins… heavy sigh!).  Naturally, after 5+ days of too-high-dosed immunosuppressants, his WBC count dropped even lower and knocked out his immune system, leaving him at very high risk for infection.  So what does this mean?  It means even more diligence in germ prevention.  Jody needs to wear a mask in our house, particularly when around our daughters.  He is to avoid public places.  He can only drink bottled/filtered water (no tap water).  No fresh fruit, vegetables, salads or raw/under-cooked meat.  Finally, LOTS and LOTS of HANDWASHING!

Jody will have more blood work drawn on Thursday.  The doctors want to see if his WBC level will rise on its own now that they’ve stopped and decreased his immune lowering medications.  It is probable that he will need shots of Neupogen, a drug which stimulates white blood cell production, to help boost his levels.  This is a very expensive medication and we’ve been warned that it is often denied by insurance companies because of the cost.  Apparently it’s also not readily available in our area because Johns Hopkins called 10 local pharmacies until they were able to find one who carries the drug.  Jody has been told that a common side effect of Neupogen is bone pain and fatigue.  We should know after Thursday if he will in fact need to start these injections.  In the meantime…

Here are a few ways you can pray for us:

  1. That Jody can avoid an infection while his body is so at risk.
  2. That his body would naturally build more infection-fighting white blood cells.
  3. That our insurance would cover the Neupogen injections should they be warranted.
  4. That Jody’s body would absorb his anti-rejection medications more evenly (less highs and lows).
  5. That his kidneys would recover from the negative impact of the too-high-dosed immunosuppressant.
  6. Good health for myself and our two young daughters.

Thank you for your concern and prayers, they are always appreciated.

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
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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.

# Why I Stride 4 CF

9 Jun

It’s been nearly two months since my last post.  I owe you an update on Jody, and I plan to do that soon, but I’d like to use this post to tell you about the CF walk we participated in last month.  Each year the Cystic Fibrosis Foundation holds nearly 600 walks nationwide to raise funds for research and drug development for CF.  They term these walks “Great Strides” events.  One of the things I enjoy the most about this event is being in the presence of so many people who know and understand Cystic Fibrosis.  It seems like almost every day of my life I need to explain CF to someone, and while I’m happy to do so, and consider it a calling of sorts, it’s a relief to be in an environment where I don’t need to do that (even if for just one day).  It was fun to meet other CFer’s and CF caregivers, and to encourage them to press on in their fight against Cystic Fibrosis.

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We walk for a cure for Cystic Fibrosis!

Jody and I would like to thank those of you who joined us for this walk; your support meant more than you know.  Likewise, we are appreciative to all the people who made a donation to our team and ultimately helped those living with CF.  Would you believe this one-day Lancaster Great Strides event raised over $172,600?!  Can you imagine how much is raised nationwide?  This is exciting for those of us that have been touched personally by the work of the CF Foundation and hope for a cure for the disease.

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Team Journey with Jody

 At the walk Jody and I were privileged to say a few brief words and share a portion of Jody’s journey with those in attendance. I am continuously amazed at the reach of Jody’s story and although it has not always been an easy road, I hope that we are able to use it to encourage others. At the walk I was also able to meet a few readers of this blog and it was fun to hear your stories (thank you for introducing yourselves to me). Overall it was a fun morning of hanging out with friends and family, raffles, photos, exercise, lunch, and most of all… supporting a cure for Cystic Fibrosis.

Below are a few snapshots of the event (click photos to enlarge and read/add comments):

FYI: Per the guidelines of the Cystic Fibrosis Foundation for outdoor events, people living with Cystic Fibrosis need to maintain a six-foot distance from one another to prevent the spread of bacteria and cross infections. In order to make those with CF easily identifiable at the walk, anyone who has the disease is given a green shirt like the one Jody is wearing and is asked to keep a healthy distance from anyone else with the same green shirt.

 # WeStride4Jody

(and others living with Cystic Fibrosis)

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