Tag Archives: lung transplant

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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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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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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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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Merry Christmas ’14

24 Dec

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

Christmas collage

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

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First Post-Transplant Clinic

31 Oct

Wednesday we traveled back to Hopkins for Jody’s first post-transplant visit in the Transplant Clinic.  For now this will be a weekly occurrence with the goal to gradually increase the space between appointments.  As I mentioned in my last post Jody’s first week at home was a rather miserable one as he dealt with painful abdominal cramps and bloating which made eating difficult.  These symptoms were the result of a bowel obstruction.  There were so many possible causes for this: Narcotics, dehydration (for so much of his hospitalization he was on severe fluid restrictions, both oral and IV), too many CF enzymes (since he has lost so much weight-now down to 105 lbs, his enzyme requirements are less), and CFer’s in general are prone to obstructions (although it’s never been an issue with Jody in the past).  There are other possible causes as well.  At this point we didn’t care so much about the cause as we did getting it fixed.  For two nights Jody did GoLytely, a type of bowel prep that is often used prior to a colonoscopy to clean out a persons system, so to speak.  When this failed to work we knew he needed something more invasive.  A barium enema was added as first on our list of things to do on Wednesday.  This basically includes filling the colon with a special liquid (barium) so that it becomes visible on x-ray.  A blockage can then be identified and hopefully broken up.  Jody was definitely obstructed but thankfully the procedure worked to fix it.  Immediately after the procedure we went to eat lunch and he ate more than he had all week and the best part was that he didn’t have that painful cramping in his abdomen as a result.  He’s been eating and pooping ever since, and it’s great to see him feeling better.  Hopefully this (obstruction) won’t be an ongoing issue that he has to deal with going forward.

The rest of our day long but was rather uneventful.  Jody had a chest x-ray and then his first post-transplant hopsital PFT’s (pulmonary function testing).  He now has a machine at home to check these twice a day and we were anxious to see how the home machine correlates with the hospital machine.  The numbers were surprisingly close.  His lung function this day was 64%!!!  When we left the hospital a week prior he was at 50%.  This number is expected to continue climbing and we’re told usually peaks between 6-12 months post transplant.  I still can’t believe how easy Jody makes this testing look compared to a few short weeks ago.  Even the tech who performed the test commented on how neat it was to see him walking in there, no oxygen, and able to do the test so effortlessly.  Can you imagine how ‘easy’ it will be for him as his lung function increases?  I’m so in love with these new lungs of his!

Post-transplant PFT

In clinic we met with Jody’s transplant coordinator and the doctor.  Jody’s primary transplant doctor also happens to be a CF doctor (one of the few who works both CF & transplant) so it’s been neat to see him through the years as one of Jody’s primary CF docs and now his primary transplant doc.  At his appointment we reviewed his extensive medication list and made some changes.  We reviewed all the home self-monitoring data we’ve been recording (vital signs, weight, PFT’s).  They checked out his incision and all the healing sites where tubes and lines were removed.  Dr. M listened to his lungs, smiled and said, “You’re lungs sound SO good!”  Those words seem so foreign after years and years of unclear lung sounds.  It’s music to our ears.  Jody’s x-ray did show that he still has inflammation and fluid in his lungs (we knew this when we left the hospital) so hopefully this will resolve on its own.

Jody’s been having a hard time sleeping at night because he needs to stay at a 30% angle.  He has pillows propping him up so that his shoulders stay upright but it makes it hard to change positions at night.  It’s also hard for him because he is not normally a back sleeper.  He wakes up with back and neck aches.  Some nights he even sleeps half of the night in bed and the other half on the couch.  I never quite know where he’s going to be when I wake up.  Jody talked to the doctor about this in clinic but they hold firm to the fact that he needs to sleep upright to prevent another aspiration episode (even though he doesn’t eat for over three hours before bed).  I’m going to order Jody a wedge pillow I found online to see if that helps.  Jody has thought about buying a recliner chair but that doesn’t seem like a reasonable long-term solution; we’re too young to sleep in separate chairs beds.  If this is a lifelong thing we may need to break-down at some point and order one of those mattresses that sits up.  For now I hope the wedge pillow will work, obviously that’s the easiest and cheapest solution.

The last two days have been much better than all the previous days at home.  It’s been great to see Jody eating again and not paying for it afterwards.  Speaking of food, many of you have asked how you can help, and here is one way you can bless us.  Our friend Kendra has kindly set up an online meal schedule for us.  Meals are so wonderful, especially for me, so I don’t have to worry about cooking in addition to taking care of Jody and our girls.  When I go back to work I know they will be even more helpful.  If you are interested in bringing us a meal you can CLICK HERE to sign-up online.  Thank you to those of you who have already signed-up or brought a meal, you don’t realize how helpful this is to us, and we are so very grateful.

 

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Updates from Home

26 Oct

Jody has been home from the hospital for five days now and we are settling into a new routine.  I have three weeks off work and while I’m thankful for that, it doesn’t seem like nearly enough.  I remember the transplant coordinator at the hospital telling me to be sure I was rested and ready for discharge because it would be “all you (me) at home” taking care of Jody.  I am surprised at how much time post-transplant caregiving takes (that and being Mommy).  Twice a day Jody has a number of self-monitoring tasks he needs to do and record, such as weight, vital signs, lung function testing, etc.  DSC_0346AHe has an extensive medication regimen that begins at 8am and concludes at 10pm (see photo on right of all his oral medications).  He also has a number of intravenous (IV) and inhaled medications.  It is so weird to me that his entire medication list is new (as in, he no longer needs most of the CF meds he’s been on for as long as I’ve known him). It feels like everything I’ve learned in the past 10 years about Cystic Fibrosis is thrown out the window and now I’m learning an entire new beast called ‘lung transplant.’

At discharge we sat down with a pharmacist and Jody’s transplant coordinator to review his meds and fill his first pill box.  We were given an eight page chart full of medications to guide us with what to take and when to take it.  This first week I gave Jody a ‘free pass’ and I took responsibility for giving him all of his meds at the appropriate time.  Next week we will do it together and the third week he will do it by himself while I watch.

I learned a few things this past week, one being that the pill box provided by the hospital was not working (at least for me).  There were not enough slots in a day to accommodate the numerous times he needs to take meds.  For instance, all morning meds were lumped into one slot even though they are taken at different times throughout the morning.  After an unsuccessful Google search for a six-slot per day (or more) pill organizer, I decided to get creative and make my own.  I bought two seven-day pill boxes with four slots for each day.  I flipped the boxes on their side to make the seven-days become seven-slots (per day).  DSC_0376Now I can label the specific time Jody needs to take his meds and I even have an extra section for PRN (as needed) drugs or Jody’s digestive enzymes.  I realize that pill boxes are not exciting reading material so please know the only reason I share this with you is because there are a number of pre and post transplant readers of my blog who might find this method helpful for them as well.

In addition to medications, Jody also needs to check his blood sugar four times a day and often requires insulin coverage (he will most likely develop full-blown diabetes as a side effect of some of the medication he is taking for his lungs).  One thing that is odd about this is that because of his Cystic Fibrosis, which still affects his GI system, he doesn’t need to limit his sugar/carbohydrate intake.  As a result, he can eat things most diabetics would need to avoid, although it does cause his blood glucose levels to rise significantly.  It’s hard for me to understand this balance or lack thereof.

On the day of discharge Jody had swallowing study #5 done.  If you remember, the week before he was given permission to eat again, but wasn’t allowed to drink thin liquids.  At this test they did clear him to drink regular liquids but he must tuck his chin down to his chest to swallow.  He is still experiencing laryngeal penetration where the liquids go down into the larynx and are stopped by the vocal cords from entering into the lungs.  He was given a special cup to use for liquids because it only allows him to take in 10 mL of fluid per sip.  I lovingly refer to this cup as his ‘adult sippy cup’ because that’s just how it looks.  This cup prevents him from taking in large volumes which would most likely make their way past the vocal cords at some point.  After everything we’ve been through another aspiration episode is the last thing we need.  Jody also can’t eat foods that are mixed with liquids such as cereal or soup, like vegetable.  Additionally, to prevent aspiration he needs to sleep at a 30 degree or more angle. Propping pillows and not being able to change positions at night has been difficult and uncomfortable for Jody. He is waking up with back pain as a result. We’ve heard mixed talk about the follow-up plan regarding his swallowing issues.  He might need speech therapy to give him exercises to strengthen his swallowing muscles or they might just wait and repeat another swallowing test (yes, #6!) after he’s been eating on his own (which could in itself fix the problem).  For right now Jody is really glad to be able to drink again, even if it is just 10cc’s at a time.

At this time Jody is not allowed to be left alone.  Because he is immunosuppressed, and we are in cold and flu season, we continue to be careful about germs and exposing him to outside people.  It’s hard to know when and how to let up on this.  As far as I am concerned, for the first time in five weeks I am mask-free!  This is both liberating and terrifying at the same time.  I often wonder if I will ever kiss him without fear of killing him by spreading some bug I may not know I have.  I realize everything is quite fresh right now and that I will probably relax about it in due time, but for now the fear of germs and bugs is still very real.

I wish I could say we’ve been living it up here at home and having the time of our lives, but it simply wouldn’t be true.  While the routine is going fine, Jody has not been feeling well.  He has spent much of the week sleeping and is having a lot of intermittent yet intense abdominal pain.  Eating makes the cramping and bloated feeling worse, not eating is causing him to lose weight that he shouldn’t be losing.  It’s hard to encourage him to eat, knowing the pain it will cause him, yet its hard to see the skin hanging off his body knowing it will only get worse if he doesn’t eat.  It wouldn’t surprise me if they start using his feeding tube again for extra nutrition but Jody is strongly against this.

Bowel obstruction could be the cause of all the abdominal pain Jody is experiencing.  Today the doctors called in a prescription for him to do a colonoscopy-type bowel prep that should clean out his system completely.  Tonight he is feeling a little better but he also hasn’t eaten so it’s hard to say if the clean-out worked or if its his empty stomach that has him feeling a little better.  This has been an ongoing issue for Jody and it is very frustrating and overwhelming for him.  He has had moments where he sincerely wondered if all of this (transplant) was even worth it.  I know that deep down he knows it was, and that he will get better, but we (you and I) can’t belittle how hard this major surgery was on him (and anyone else going through it).  It’s so much easier for me to say, “Of course it was worth it!!!” because I’m not the one experiencing it first hand.  For this reason I chose to stay quiet, but it didn’t keep me from shouting those words in my head.  I know that in his heart Jody knows transplant was worth it; he’s got a wife and two little girls to live for and to watch grow into young ladies.

Speaking of little ladies.  On Tuesday our family of four will finally be back together.  Our youngest daughter had a recent live vaccine so she wasn’t allowed to be in the same house as Jody for a two-week period afterwards.  It turned out to be a smooth transition to home only having the oldest with us because she is in school for eight hours a day, and is also a little more independent.  I’m excited to have everyone at home under one roof, but I’m not gonna lie, I’m a little nervous about it too.  Please pray that God would give me an extra dose of patience and that things would go smoothly.

We will be heading back to Hopkins for transplant clinic on Wednesday.  This will be a weekly thing for the time being but the visits will gradually be spaced further apart.  Hopefully by this weeks appointment Jody will feel better and won’t need to stay; that possibility is never very far off.  Please continue to pray for Jody’s ongoing recovery and especially for the GI issues he’s been having.  Your words of encouragement do wonders for the soul.  It is so touching to know that people (still) care and so I hope you will take the time to continue uplifting Jody with your words/comments.  Until next time… thank you for reading.

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