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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

Fevers and the Common Cold

3 Dec

It’s fall.  Cold and flu season!  This is the time of year when I always feel a little more on-guard.  During the spring and summer we relax our crazy mask wearing, hand washing, germ-avoiding practices for what feels like a chance at a “normal” life.  Don’t get me wrong, no matter what season we’re in we are still a little cautious, it’s just not in the forefront of our my mind during those warm, sunny months.

The last few fall and winter seasons since Jody’s surgery have gone really well for him and he managed to escape even the common cold.  We were prepared for the worst but the worst never came.  It was mind boggling to me that he, the immunocompromised transplant patient, could avoid the coughs, congestion and sore throats that the rest of us were experiencing.  I felt relieved that it was me taking on the cold and not him.  God wrapped Jody in the invisible bubble of health that I wished for after his transplant and I praise Him for it.  Unfortunately though, bubbles don’t last forever and Jody’s has popped.

This November was a rough month for us.  One of our daughters caught a cold and was also diagnosed with strep throat.  She missed four days of school because of on-Resting while fighting a coldgoing fevers. Jody and I both caught her cold (thankfully not the strep); mine was mild and resolved quickly, Jody couldn’t shake his.  After a trip to Hopkins for a nasal swab and evaluation he was diagnosed with Parainfluenza 1 (a fancy name for a strain of the common cold).  This required us to make another three-hour (round trip) drive to Hopkins to pick up a rare anti-viral medication (Ribavirin) that we were told wouldn’t be available locally. He was also started on an antibiotic.  Jody seemed to be going downhill fast so we were glad to get him treatment and boy did that Ribavirin knock the virus right out of him!  I was amazed at his turn-around in less than 24 hours (which was great because we were getting ready to host our daughter’s 6th birthday party).  As Jody continued on this antiviral medication, the side effects of nausea and dizziness grew worse, making it hard for him to  do things around the house.  We counted down the days until he would finish his prescription.

Soon after his course of medications were complete, our daughter developed another fever and missed her sixth day of school (I didn’t mention she missed her first day of kindergarten because of a concussion the night before, poor thing). I worried that her strep might have returned since she had just finished her antibiotics a few days prior.  Fighting StrepAfter a trip to the pediatrician’s office we were reassured that it was just a viral infection that needed to run it’s course.  Thankfully that was a 24 hour virus and by the next day she was feeling better.

A few days later (or a week, it’s all running together), our oldest daughter developed a fever.  A week after that our youngest had another fever.  Both girls were coughing and blowing their noses.  Soon Jody began experiencing cold-like symptoms again.  Thankfully he didn’t deteriorate as before but he definitely couldn’t fight it on his own. This week he made another trip to Hopkins for another swab and more PFT’s.  His lung function was down a little and this time his nasal swab tested positive for Parainfluenza 2 (a different strain of the common cold than what he had a few weeks ago).  Tomorrow he will start the Ribavirin again and a different antibiotic.  This time the doctors ordered medication to help with the nausea but unfortunately he’ll have to deal with the dizziness.  There was a brief mention of him possibly needed a course of IV’s in the near future but for now they’ll hold off until they get more culture results.

Through all the stuff going on with Jody and our girls I’ve managed to avoid most of it… until today.  I checked my temperature this morning at work (expecting it to be normal), and it read 101 degrees.  Beside unusual sweating, I felt fine.  This brings our fever count to five over recent weeks and the colds feel on-going.  These illness are minor when compared to those our family has faced in the past, but I’m a firm believer that God still cares about our fevers and colds, no matter how miniscule.

Perhaps I’ve become assuming of Jody’s invisible bubble, maybe even expectant of it.  Either way, I’m committing to focused prayer for healing and protection over Jody, our daughters, myself and our home.

I’m praying for Jody to get his bubble back!

Please join me.

 

 

 

 

 

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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Sternal Wires

4 Aug

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.

 

 

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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.

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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

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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.

For the Sake of Love & Health

29 Apr

As I begin this post I struggle for words to adequately describe the significance of Jody’s new lungs. When you have watched a love one suffer, increasingly, for any period of time, it hurts deeply. When you live in fear for said loved one’s life, it’s hard and scary. When you bear witness to said persons healing it’s incredibly amazing and freeing. The gift of life, at the expense of another, one that can never be repaid, is so very humbling. The challenge then becomes, how can I (we) honor and protect that gift?

Never again do I want to see Jody struggle for breath, to be separated from him time after time by a hospital for the sick. To live in guilt because I’m not enough and can’t give my all to everyone who needs me (spouse, children, work, etc.). In some ways Jody’s transplant has made me almost more fearful of the future. I will never forget how sick he became two weeks after transplant when he developed aspiration pneumonia and was transferred back into the ICU. I remember sitting at his bedside, thinking to myself, this is what it’s going to be like if he gets a hard-to-treat infection, his new lungs stop working or they go into serious rejection. I’m going to watch him struggle and suffer only this time, the end will come, and I will be left a young widow, and mother. Obviously I don’t know what the future holds and I hope my vision from the hospital is far from the truth but either way, I will do everything in my human power to protect Jody’s gifted lungs and keep him well. I want him around for a VERY long time!

That being said, I thought I would use this post to share with you some of the guidelines we live by. You might remember in the hospital after Jody’s transplant we received a three-ring binder, Jody’s “Owner’s Manuel for life,” they called it. This binder is full of information about post-lung transplant life and holds guidelines for practices which prevent lung infections. Common infections can become very serious and even life-threatening for one with a weakened immune system. The list below was given to us by Jody’s transplant center, Johns Hopkins, and if you are a lung transplant survivor, you probably have similar guidelines given to you by your center, which I encourage you to follow.

Here are the rules of lung transplant by which we live:
•  Wash your hands with soap and water frequently, before eating or drinking, and after using the bathroom.

– This one is kind of a no-brainer.

•  Avoid persons who are not feeling well or who have active infections (cold, flu, skin infections, diarrhea, stomach flu, etc.)

– We take this guideline VERY seriously.

•  Wear disposable gloves for any high risk situations.
•  Never change diapers of an infant, and avoid any direct contact with an infant who has received oral polio vaccine in the last six weeks.

– Thank goodness we’re out of the diaper stage.

•  Avoid individuals who have been vaccinated with any live virus (chicken pox, measles, mumps, rubella, nasal flu) for at least two weeks.

– So, friends, family, please stay away if this is you or your children.

•  Avoid individuals who did not receive the flu vaccine.

– We’re especially thankful to our family and friends who got the flu shot (even though they preferred not to) so they can continue spending time with us.

•  Wash fresh fruits and vegetables thoroughly and/or peel skin before eating.
•  Be sure that all ground meat, chicken, fish and pork are thoroughly cooked before eating.
•  Never eat sushi.

– Actually, we have an entire paper filled with foods from all food groups that Jody is to avoid, such as common cheeses, salmon, crab, sliced deli meats, store bought salads, well-water, brewed tea, raw honey, and the list goes on and on.

•  Cook eggs until the yoke is solid before eating.
•  Do not eat raw cookie dough or “lick the bowl” when preparing cakes.
•  Use only plastic, dish washable cutting boards.
•  Do not eat at buffets.

– This is due to the risk of bacteria growing on food that has been sitting out for too long, possibly kept at improper temperatures, as well as the risk of infection from people touching the handles of the serving spoons.

•  Avoid large crowds, especially in close quarters indoors (movies, concerts, plays, religious services). If this is not possible, wear a mask, and wash your hands frequently.

– We are church-going people so this one is challenging for us. We did stay home during most of the cold/flu season this year, especially with Jody being so freshly transplanted. My concern is actually less about Jody (he can wear a mask and wash his hands), and more about our young daughters picking up something in the over-crowded classrooms, and bringing it home. In fact, our first Sunday back with the girls that is exactly what happened, much to my dismay. I’d like to add that if I’m sitting beside you at church and you see my sanitize my hands immediately after shaking your hands, don’t take it personal, it’s not that I think you might be germy (or maybe I do), I’m just trying to keep my family healthy.

•  Be aware of people around you – If someone seated near you is coughing or sneezing – get up quietly and MOVE! These precautions are especially important during flu season (October thru March).

– Sometimes I think I’m a little too aware of the people around me. I can pick up on someone coughing from across a room. I cringe when I see people coughing into their hands or blowing their nose and not washing their hands or using hand sanitizer afterwards. I can envision their germs spreading onto everything they touch afterwards.

•  You should never participate in gardening or digging in the dirt (fungus and mold live in the soil and grass).

– This is a hard one for Jody since he enjoys working in the yard and even went to vo-tech for landscaping. I, on the other hand, don’t enjoy yard work. So if you drive past our house and see lots of weeds growing, you’ll know why.

•  NEVER empty kitty litter or clean the cat litter box.
•  Avoid kittens at all times. Adult cats may present a lower risk of giving you an infection but can also be a problem.

– Good thing we’re not cat people.

•  Avoid all birds and their droppings.
•  No traveling/flying in an airplane for at least one year following transplant.
•  When flying in an airplane you must wear a mask and keep the air vent closed.
•  When outside in the sun, wear protective clothing, broad brimmed hat, sunglasses, sunscreen and lip balm. The best times to be outside are early morning and late afternoon. Transplant meds make the skin more sensitive to the suns rays, resulting in high risk for skin and lip cancers. You must see a dermatologist yearly to watch for changes in your skin.
•  Anti-rejection medications are time sensitive and must be taken twice a day (every 12 hours) FOR LIFE!
•  Every day (twice a day) you must monitor and record your weight, blood pressure, heart rate, temperature, home lung function, and blood glucose levels. Bring these with you to all clinic visits for review.

– I created a spreadsheet for Jody to record this information (I didn’t like the one that was provided to us by the clinic). If you are post-lung transplant feel free to download this document for your personal use if you find it helpful.  Lung Transplant Log

By now you’re probably getting a picture of how intense the rules are following a lung transplant. These things apply to Jody for the rest of his life and believe it or not, the above list is not all-inclusive, we continue to learn of new things that we need to watch out for or avoid altogether. I could probably write another blog post on how we actually put all of this into practice and what we do to keep Jody healthy, especially with young children in the home.  I will say that Jody always carries a mask with him and we have hand sanitizer nearby at all times. Obviously we do not enjoy being so diligent about avoiding infections and I often day dream about what it would be like to not be so consumed with avoiding and fighting germs. To not worry every time we go to someone’s house that the hand towel in their bathroom is one their entire family (including children) have been rubbing their hands and mouths on for a week. To not freak out internally when my kids are playing with another child who is coughing. I can hardly imagine what it would be like to have a cold and not worry about it putting a member of my family in the hospital. I remember when Jody’s CF doctors were beginning to talk about transplant (because he kept getting sick and dropping his lung function), I told one of them, “I think this entire thing is going to make me a germ-a-phobe.” His response was, “That’s okay!”

I imagine there are people around us who might not understand and think us extreme. Perhaps they’re tired of hearing us say that we can’t do something because of Jody’s transplant. Those people have probably never lived in a hospital or were faced with the real possibility of losing the love of their life. Once you’ve faced that, you never want to experience it again. I don’t ever want to see Jody, oxygen saturation dropping into the 50’s, gasping for air, barely able to move, out of his mind with hallucinations, and/or on a ventilator. The truth of the matter is that while I daydream of being “normal” I’m happy to be my germ-crazed self because it means that I have a reason to be this way. If Jody was not living, I could be “normal” and much less fearful of even the common cold, but he is worth every germ-fighting, infection-preventing routine we practice (and even the few gray hairs that I’ve acquired along the way).

* I apologize to all the email subscribers who I confused by accidentally (and prematurely) hitting the “publish” button while writing this post.  Oops!

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Infection… but no rejection

26 Mar

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Pre-bronch selfie

Since I last wrote, Jody had his six-month post-transplant bronchoscopy.  In case you forget, this is a procedure where he is put to sleep so they can introduce a scope, via his mouth/throat, into the lungs.  His lungs are examined and “washed” with saline.  Tissue samples are taken to check for rejection.  It normally takes about two days until we get the results of this test back.

Like his three-month bronch, this one showed no rejection!  Praise the Lord for that!  It did however show that he is growing a bacteria called Pseudomonas Aeruginosa.  This came as a surprise (to us)… sort of.

Pseudomonas is a bacteria that Jody harbored in his old, CF lungs.  Once he got it, it never went away.  That’s sort of the thing about Cystic Fibrosis.  They have thick, sticky mucous in their lungs and once bacteria gets in there it finds a home in the mucous and is hard, sometimes impossible, to eradicate completely.  This bacteria is typically controlled with inhaled and oral antibiotics, however, when it flairs up (becomes more numerous), one experiences symptoms and is said to have a lung infection, or a CF exacerbation.  Normally this calls for IV antibiotics to again lower the number of bacteria.  Those of you who have been following Jody’s journey before transplant know that he has spent his fair share of time in and out of the hospital fighting these frequent lung infections.  In the past it became clear when Jody had an infection because breathing became a little more labored (as his lung function decreased), cough and mucous production increased, and Jody became much more tired.  Those were his classic signs that it was time for another hospitalization and IV antibiotics.

We had been warned that it’s not uncommon for some of those old CF bacterias to make their way into the new lungs.  It could have been sitting in his trachea (or elsewhere) when the new lungs were placed, and eventually made its way down into the lungs.  Actually, we found out that a very small amount of this bacteria showed up on his three-month bronch (which they didn’t tell us at the time), but that it was too small to treat.  Now, three months later, it’s grown to a quantity worth treating.  We were surprised to hear of this infection because Jody feels great; breathing is good, he has no cough, no mucous, and no drop in energy.  He has none of the “classic” signs of an infection that we’ve grown so familiar with identifying.  I guess that’s the beauty of new lungs.

In case you’re wondering, this does not mean Jody’s CF has returned.  Thankfully, this cannot happen.  Jody will never again have Cystic Fibrosis in his lungs.  This means that he no longer has that thick, sticky mucous which bacteria love so much.  He should be able to get rid of the infection completely (yeah!).  He is treating with oral and inhaled (nebulized) antibiotics for three weeks; no IV’s, no hospitalization!

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Post-anesthesia and breathing well

Here is a picture of Jody after the bronchoscopy, still a little drowsy from the anesthesia.  I share this photo because even though he’s in and out of sleep, you can see on the monitor, if you click on the photo (middle number in blue) that his oxygen saturation is at 99% on room air (no oxygen).  Seeing that never gets old!

Aside from the infection, the latest issue we are dealing with is the possibility of Jody haven broken the internal wire holding his sternum (chest) together.  Over the last week or two he’s been noticing pain in the center of his chest, that feels shallow, like somethings rubbing.  In certain positions he moves he can hear a “popping” sound.  These signs point to a fractured internal wire.  Next week we have an appointment for a CT scan of his chest which will tell us if our speculation is correct.

Like us, your next question might be, how will they fix that?  Honestly, we’re not really sure.  When Jody asked his transplant coordinator this question, her response was, “I don’t want to tell you because I don’t want to give you anxiety.”  This response produces almost more anxiety because it sounds like the fix for broken wires is pretty ugly.  Of course, I imagine the worst; having his transplant incision opened to remove or replace the wires, needing chest tubes, needing the thoracic epidural again, pain issues, etc..  Most likely it won’t be that bad,  but it would have been nice for the coordinator to give us a better answer.  Who knows, maybe the wires are perfectly intact and there’s another reason for the pain.  As always, I’ll keep you updated as we learn more.  We appreciate your prayers about the infection and the possible broken wires.

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Six Months Later

15 Mar

Today is March 15th.  Six-months ago today Jody underwent one of the riskiest, most challenging surgeries that can be performed.  His life was placed into the hands of a talented surgeon, a team of knowledgeable anesthesiologists and a room of OR staff.  He was ultimately protected by The Great Physician himself.  A half-a year, 26 weeks, or 182.5 days ago, Jody was quite literally given the gift of life; he received a double-lung transplant!

The road since transplant has not been without its challenges but things are looking up.  Miraculously, Jody has avoided all the nasty stuff going around this winter and has not seen the inside of a hospital room since the day he was discharged from his transplant stay (October 21st).  Actually, this is the longest span of time that he has gone without being admitted to the hospital in over a year, maybe even two.  We’re so accustomed to him being in the hospital every two or three months (sometimes even more often) that it seems odd to have gone six months without it.  Could it be that he might go an entire year without being in the hospital?!?!

As healing continues, Jody has been enjoying the life of the rest of us, one where breathing comes naturally.  He can climb the steps to our second floor without needing to sit down and catch his breath at the top.  He can laugh freely without it turning into a 10 minute intense coughing fit.  He can spin and dance with our daughters without huffing and puffing and getting tangled in oxygen tubing.  These are simple things but in life they make up the big things.  These are the things we learn to really appreciate when they don’t come so naturally anymore.

Here are a few more simple big things that Jody has enjoyed over the last few months:

His birthday

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The ability to inflate a balloon using his new, properly functioning, air-filled lungs.

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A daddy-daughter date

Painting Date with Daddy

Having his central line removed after five months, which means he is finally free of all lines and tubes on his body.

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Getting back in his wood shop and building us a custom window seat with lift tops for storage.

(How wonderful it was to hear the sound of his power tools and to smell the old familiar scent of fresh-cut wood).

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Getting to use our snow-blower. Cold air and failing lungs do not get along so Jody has not been able to use this ‘toy’ for the past few years. His exact words after doing this were, “It’s such a thrill to be out there, doing stuff, and not hacking (coughing) away!”

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Six months ago Jody was sick.  On the outside he looked healthy, but on the inside he was struggling to do something so innate, so natural… breathe.  There’s no telling how long Jody would have lived had it not been for the selfless gift of a heartbroken family.  To them we will be forever indebted.

This was Jody six-months ago, life forever changed…

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This is Jody today… double-lung transplant survivor, living, breathing, and enjoying life!

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