Celebrating 5 years!

16 Sep

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

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

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

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

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

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

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

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

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

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

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

Five years post double lung transplant

Happy 5th Breathday Jody!

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

Thankfulness is not cliché

23 Nov

Thanksgiving 2017

Thanksgiving 2017

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

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

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

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

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

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

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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.

 

 

 

 

 

Pneumothorax Explained

10 Oct

I sat in the endoscopy waiting room at Hopkins this past Friday as I have done many times over the last two years.  Jody had just completed the last of his post-transplant surveillance bronchoscopies (this was his two year bronch).  Now that the routine bronch’s are complete, any ordered in the future will be to rule something out or because the doctors are suspecting something.  Dr. Mathai, one of the pulmonary doctors that we’ve gotten to know through the years (not a CF or transplant doctor), had just came out to the waiting room to tell me everything went great, the lungs looked good and that Jody would be in recovery soon.  I’ve heard this speech many times, but don’t get me wrong, it’s always reassuring to know that things still look good.  Dr. Mathai left and I went back to a journal I’d been working on, knowing that I would be called back to the recovery area in about 20 minutes.

About 15-20 minutes later (I’m guessing) a doctor came out to speak with the young women sitting in the chair across from me.  She looked to be about my age.  The doctor told this lady that her husband’s procedure went well and was finished but that she wouldn’t be able to go back to recovery to see him because there was a patient back there who was having problems.  Unfortunately, her husband was in the bay next to the one with the problem.  Apparently this patient was having chest pain and they were asking all family to leave the area.  The doctor didn’t want this patient to worry about what was taking so long so she was simply reassuring her that everything was fine with her loved one.  This woman was not happy, in fact she was mad, “I don’t understand!  I’m family, I should be allowed to go back and see my husband!”  The doctor left and she continued to complain to me about how unfair this was that she couldn’t go back to see her husband because of someone else’s.  All I could do was wonder, could it be my husband?

As soon as I overheard that doctor explain that a male patient was crashing (they wouldn’t ask all family to step out if it was a stable situation), my stomach tightened.  I really don’t know how many bays (rooms) there are in endoscopy, I’m going to guess around 30.  It’s a big unit and they are always full.  The chances of that crashing patient being my husband were so slim and yet I couldn’t shake that nagging feeling.  I immediately began to pray.  I didn’t know what was happening but God did and even if it wasn’t my husband that person could obviously use some prayer.  I waited a few minutes then picked up my phone to text a friend about the conversation I had just overheard, and to pray for Jody, “just in case.”  Before I finished that text my phone rang.  It was a 410 (Baltimore) area code. That number confirmed my fears… Jody was the crashing patient! He was the reason the woman next to me couldn’t go back to see her stable husband.

I answered and Dr. Mathai was on the other line.  He told me that Jody was in a lot of pain and that he had a pneumothorax (collapsed lung).  A team was on it’s way to put in a chest tube to remove the air that was building up, causing his lung to collapse.  He said he was stable (although he seemed very vague and I kept thinking of what the other doctor had said).  He told me Jody would need to be admitted and that he would update me in an hour.  A little over an hour the pulmonary fellow called me to say that Jody was back in recovery with his chest tube and was doing much better, I breathed a sigh of relief.

In recovery after pneumo and chest tube placement

Jody doesn’t remember much of what happened after his bronch since he was just coming out of anesthesia.  He remembers waking up in the recovery unit in excruciating pain and unable to catch his breath.  He remembers hearing Dr. Mathai say, “We need to get him back to the operating room NOW and we need to get a chest x-ray to know what’s going on.”  The next thing he remembers is waking up in recovery with a chest tube in his right side and a bandaged hole in his right upper chest where they unsuccessfully tried to place the first tube.  His pain and breathing was much improved. That being said, it still hurt.  Chest tubes are painful.

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Pneumothorax illustration (via Google, exact source unknown)

You might be wondering how Jody ended up with a collapsed lung from his bronch, after all, this was probably near his 15th one and it never happened before.  Every time we sign the consents for this procedure we are told of all the possible risks, pneumothorax is one of them.  This complication is so rare, occurring in somewhere around 1% of all cases that no one actually thinks it’s going to happen.  I mean really, think of the odds of being in that 1% group.  During a bronchoscopy with biopsy the doctor inserts a scope down into Jody’s lungs, performs a lung “washing” and then takes a tissue sample.  This sample is sent to the lab to check for rejection.  When that tissue sample was taken this time, it must have punctured Jody’s right lung, allowing air to leak from the lung into the space between his lung and chest wall.  The more he breathed, the more air was escaping.  This build-up of air pressure caused his right lung to partially collapse.  My guess is you’ve seen the Hollywood version of this sometime in your life when a patient on a medical show is found gasping for air and someone quickly jams a syringe into their right upper chest to relieve the pressure.  Suddenly the patient is able to breathe again, and with chest tube in place, allowing air to escape, Jody could too.

One of many chest x-ray’s

Over the next day and a half Jody was well medicated and gradually weaned off the oxygen and chest tube.  The first day his tube was hooked up to suction, which uses pressure to remove air and fluid.  A CXR (chest x-ray) the next morning showed his lung was re-inflated so they switched his tube over to water seal. This allowed air and fluid to escape by gravity instead of being pulled out by suction. After four hours of this another CXR was done.  It showed no new accumulation of air and so the chest tube was clamped altogether. This meant noting could drain out.  If Jody had a small, slow leak in his lung, this would certainly show it.  Three hours later, another CXR. Everything looked good, no air leaks.  The fellow came and pulled the tube with Jody lying down in bed.  It was evening by then, but she said we were free to go home and she left.  Jody sat up a minute or two later and was immediately hit with intense pain in his chest.  His breathing was fast and shallow as he struggled for air.  When the call bell didn’t work to bring staff to the room I ran to the desk and soon we had help.  They ordered a stat CXR to make sure he hadn’t developed another pneumo (unlikely but his symptoms were similar and so it needed to be ruled out).  The CXR was negative and this sudden onset of pain and shortness of breath was ruled, pleurisy, a fancy medical term for irritation or inflammation of the tissues that line the lungs and chest cavity, in this case, probably the result of the chest tube being pulled.  Jody was dosed heavy with IV pain medication which knocked him out, a reassuring sight after fear that he was going downhill again.  All that excitement bought us another night at Hotel Hopkins.  Jody only required one dose of pain medication before bed and thankfully by morning his pain was pretty much gone.  We were discharged around lunchtime yesterday.  Over the next few weeks Jody is not supposed to lift anything heavy.  He’s also not allowed to do lung function tests for six weeks (he normally does them twice a day).  The purpose of this is to give his lung time to heal, making sure the small puncture site is securely closed and won’t break open causing another pneumothorax.

We certainly hadn’t anticipated spending our entire weekend in the hospital but I’m thankful to the team at Hopkins that kept Jody safe and to all of you who jumped in and prayed for him.  I also want to give a shout out to my Mother-in-law who sacrificed her birthday to watch our girls so I could be with Jody at the hospital – Thank you.  I’m glad Jody doesn’t have anymore bronch’s scheduled and I think in the future we’ll pack a bag just in case.  Jody took this experience in stride and kept his sense of humor (when well medicated).  “Well,” he jokes, “At least I went out with a bang!”

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Jody’s 2nd Breathday

15 Sep

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

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

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

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

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

James 1:17

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

 

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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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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

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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.

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