Tag Archives: gift of life

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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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…

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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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The Significance of a Trash Can

20 Dec

Three months!  That’s how long Jody has had his new lungs.  In some ways it seems like it was just yesterday when we received that much-anticipated phone call, and in other ways it feels like a lifetime ago.  Who knew ones life could change so drastically in such a short period of time?

This past week I began reflecting on some of this and am only now realizing just how sick Jody was before his transplant.  Infections, hospitalizations, shortness of breath, oxygen tanks, doctors appointments, limitations; they were our norm.  I had forgotten what it was like to live a life not dictated by disease.  I grieved the lives we once lived before CF took over, but at the same time, the longer we lived that new life the more I became comfortable with it and it felt like normal (even though I knew it wasn’t).  I’m only now realizing just how much I subconsciously worried about Jody during this period. People living with Cystic Fibrosis take their final breath each and every day, often not making it to the point of transplant.  I’m SO grateful to the team of people who took care of Jody during these years of decline.  I’m thankful for the way they valued his life and cared about him as well as for the wisdom they displayed in knowing the right time to start the transplant process (even though at the time it was a scary and overwhelming option).  Thank you, Lord, for placing these people in our lives.

Over these last two years Jody has had to give up many responsibilities around the house as simple things, such as going up the stairs, became work in and of itself.  Jody was not happy to give up a lot of these things, nor was I always (or ever) happy to have these responsibilities added to my ever-increasing work load.  I can think of multiple times this past winter when after working a 12 hour shift I came home to our large driveway, full of snow, and knew I would be responsible to remove it.  This was the last thing I wanted to do after a long and tiring day.  I felt grumpy and irritated with the situation and missed Jody being able to help out with these things.  He, on the other hand, felt grumpy and irritated that he had to watch me (from inside the house) having ‘fun’ on our riding mower, snow blower attached, as I cleared the driveway (although I wouldn’t have called it ‘fun’).

Things like taking out the trash each week, filling the gas tanks in our vehicles, mowing the lawn, grocery shopping, running errands, laying our girls down for naps, or checking on them when they needed something or were being naughty (because those things required going up stairs), are just a few of the things Jody gave up.  I share this with you because three weeks ago I came home from work one afternoon (on trash night) and before I even pulled into our driveway I immediately noticed the trash cans sitting there, ready and waiting for pick-up the next morning.  It was a simple task with huge implications, and I was struck by it.  Jody is getting his life back!  The weight I have carried for so long is slowly but surely being lifted.  I am getting my helper back!

Despite the fact that things are going really well, I’m finding that it’s hard to give up something which had become so engrained in me.  It’s odd not to rush Jody to the car when we go outside in the cold, to let him go check on the girls upstairs, to send him out to pick something up at the store.  I have carried so much guilt for not being able to do enough and for making Jody do things that he probably shouldn’t have been doing, like taking care of our girls while I worked.  Any time my work phone rang and displayed a home number I found myself holding my breath and almost afraid to answer, fearing something was wrong (because sometimes it was).  Jody has never been a complainer but I knew his job as stay-at-home-dad (forced on him by disease progression) was not easy.  How could it be with 22% lung function?

It’s wonderful to share with you how much two new lungs have changed our lives.  Jody has more energy than I have seen in years.  I can leave for work in the morning without guilt because I know that he is more than capable of caring for our children while I am gone.  When I come home I hear stories of all the fun things they did that day and I smile and think to myself how thankful I am for organ donation.

There is so much more I could share with you in this post about how our lives are changing (and it’s only been three months).  I don’t feel like I’ve done a very good job of expressing the change in mindset CF and transplant have played in our lives.  It’s hard to put into words the way I feel in my head and heart but hopefully you have somewhat of an understanding of this.  Just as it took time to adjust to the ‘loss’ of life as Jody’s CF progressed, so too will it take time to adjust to this rebirth of life (although I think this will be less of an adjustment since we’re gaining rather than giving up).  While I believe Jody will beat the odds of transplant I feel cautious to jump in with wholehearted belief that this positive change in our lives is here to stay.  Having given up so much in the name of disease it somehow seems easier if I keep myself prepared for the worst.  I don’t know if you could call this being guarded or just being realistic?  Conversations like we had this week in clinic about hospitalizations and viruses, especially those which can cause a rapid, drastic decrease in lung function do not make it easier for me to believe this new life is here to stay.  Regardless, the changes I am seeing in Jody right now are amazing!

Now for a brief medical update.  Last Friday (12/12) Jody had a routine three-month bronchoscopy done.  He was put to sleep for this procedure so a scope could be inserted through his mouth and into his lungs.  They were then ‘washed’ and checked for rejection and infection.  I am glad to report that he has neither of those!  Additionally, the damage that was displayed after Jody’s aspiration in the hospital has been resolved. One more good thing to share… Jody’s lung function this week hit 91.4% (and that’s after the bronch when doctors expect to see a temporary decrease in function)!  He wanted to hit 90% by Christmas and he did.  We praise God for all these good reports and are cautiously optimistic that they will continue.

I’ll end with a photo collage of a family outing we recently took to Dutch Winter Wonderland, a local amusement park for kids.  These tickets were gifted to us and would not have been possible if it weren’t for Jody’s new lungs.  It has been a long time since we did something like this and we look forward to many more of these outing where precious, lasting, memories can be made.

Family Fun @ Dutch Winter Wonderland.

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Years Restored

22 Nov

Jody is doing well.  Really well.  On November 15th he reached the two month mark, and I have to say, his new lungs are downright awesome!  Each week at clinic his lung function continues to climb.  This past week he was at 81.5%!  I can hardly wrap my brain around this considering a few short months ago he was down to 22%.  Can you imagine what that must feel like?  Recently I looked at my records of Jody’s PFT’s from when we started dating 10 years ago (yes, admittingly I do have 10 years of records in my file cabinet).  In 2004 his lung function was hanging around 75%.  Through the next ten years he experienced a slow and steady decline until his lungs nearly gave up here in 2014.  One night in surgery erased 10 years of damage.  It’s crazy!

Pulmonary rehab is going well and Jody is definitely becoming more active.  In fact, this past week in clinic he was reminded not to overdo it because he has a very thin wire holding his chest together right now.  Jody has a transverse sternotomy incision which means they cut his breastbone in half horizontally instead of up and down.  This provides greater access for a lung transplant surgeon than the traditional (vertical) sternotomy.  I searched online to find a photo of this to give you a visual and this is the best one I could find (sorry it’s a little blurry).  On x-ray you can see the bow tie-like wires holding Jody’s sternum together until it heals.  Until that time he continues to have lifting and stretching restrictions.

Speaking of restrictions… two weeks ago his transplant coordinator gave us the impression that he could start driving when he felt up to it, and recently he did.  After two months of me, and only me, at the wheel it was great to have him back at it… he could drive himself to rehab.  At clinic this week he was given a lecture about having started driving and told that he wouldn’t be cleared to drive until six months out of surgery.  The coordinator (who seems to call the shots) did correct the doctor and say that it wouldn’t be that long.  It was frustrating to be given this gentle scolding when just two weeks ago Jody was told that he would know when he felt ready to get behind the wheel.  Perhaps they should have clarified that just because he felt ready didn’t mean he was ready.  So now we’re back to me and only me behind the wheel.  This is complicated because I am back to work, Jody has rehab three days a week and our youngest daughter needs to get to and from preschool three days a week.  Jody’s clearance to drive couldn’t come soon enough.

One thing Jody’s new lungs allowed us to do recently was to celebrate our youngest daughter’s fourth birthday.  We didn’t do anything fancy, just the four of us here at home, DSC_0308Ain fact, I didn’t even make a cake, I bought one (gasp).  Most of you know that one of my favorite things to do is make/decorate fun birthday cakes for our girls but this birthday I decided I didn’t need the added stress.  Piper, forgive me, I promise I’ll make it up to you next year.  The cake I asked the bakers to make turned out cute and she probably didn’t even care that it wasn’t made by me.  Do you remember this post, ‘Thank you, transplant, for waiting two more days?‘  I guess I could have titled this one, ‘Thank you, transplant, for this day.’  I’m so glad our daughter didn’t have to celebrate her birthday without us.  The hope of this transplant is that Jody will thrive, beating the statistics of lung transplants just as he beat the odds stacked against him so many years ago when he was diagnosed with Cystic Fibrosis.  Hopefully he will be around to celebrate many more birthdays.

One final note, our family received some sad news this week that Jody’s Mom, Sharon, was diagnosed with colon cancer.  She has an appointment with a surgeon in two weeks and until then we are left with very little information on the staging of her cancer and the treatment plan.  We know she will have surgery on December 10th and we appreciate your prayers for that.  Thankfully I am off work that day so I can be there for her surgery.  Pray that God would fill her with hope and minimize the negative thoughts that come with every cancer diagnosis.

Thanks for continuing to follow Jody’s Journey.

‘For I will restore you to health and heal your wounds,’ declares the Lord…

Jeremiah 30:17

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Two Down, Ten to Go

9 Nov

All things considered, Jody had a good week.  He’s eating well (many thanks to the people bringing delicious meals), he gained a pound, and he was even a little more active at home. On Monday he had a local speech therapy session where they taught him additional exercises to strengthen his swallowing muscles.  It seemed kind of pointless because he had already been practicing the strategies he learned while in the hospital and on Wednesday he completely and totally passed his sixth swallowing study.  He no longer needs to use his adult ‘sippy’ cup, he can drink without fluid restrictions, and he can eat foods of mixed consistency (like cereal with milk, or soup).  At this point he is still taking his pills with Jell-O or pudding, but he’s been cleared to take them with water, just one at a time.  Jody was very excited to have passed this test.  I’m glad too but feel a little cautious after everything we’ve been through.

At clinic on Wednesday Jody’s PFT’s were 73%!!!  One week ago they were 64% and the week before that they were 50%.  It’s mind-blowing!  This past year watching Jody’s PFT’s had become something I dreaded, they were so disheartening, and a little too much reality that his lungs were failing.  Now, with two healthy lungs which are getting used to their new home, his PFT’s are not so depressing.  In fact, they’re actually uplifting.  Watching those numbers climb is confirmation that transplant was worth it. We hoped for this.  We prayed for this.  It hasn’t been easy, but we thank God for this gift.  There is a reason people refer to organ donation as ‘the gift of life’… because it is… truly.  I may not speak of it often, but we have not for one day forgotten Jody’s donor and his/her family.

Also at clinic this week Jody lost his metal!  If you’re not following me, I’m talking about his staples… all 67 of them.  After seven weeks his incision had healed well enough and the staples were ready to be removed.  It was simple and painless, and now he has one less (or 67 less) things on his body that don’t belong there.  The day he gets his feeding tube and central venous catheter out will be another day to rejoice.

Because Jody was not on enough medication (enter sarcastic tone), he was started on five new meds this week.  The most notable one is a medication to lower his blood pressure, which has been elevated as a result of his immunosuppressants.  To help with his high blood sugars we’ve started giving him four extra units of insulin on top of the sliding scale at breakfast, lunch, and dinner.  Remember that unlike ‘normal’ diabetics he doesn’t need to limit his sugar intake (because of his Cystic Fibrosis).  For now this increased insulin seems to be working.  Jody was not diabetic before transplant and it is still possible that once his Prednisone dose is tapered down (currently he is on 17.5 mg), his sugars might improve.  However, this could also throw him into full-blown diabetes.  Time will tell.  Obviously our hope is that he will not be diabetic for life.

As you may have noticed, there are so many side effects to the medication Jody is required to take.  I just mentioned high blood pressure and high blood sugar, but it doesn’t stop there.  The Tacrolimus causes his hands to shake noticeably.  Our oldest daughter has asked more than once, “Daddy, why are your hands shaking so much?”  These shakes even render his handwriting illegible.  We are told that with time his body should adjust to this medication and the shakes may be less.  Jody still has blurred vision (although not nearly as bad as in the hospital), and this past week we noticed his speech was off.  When we mentioned the speech thing at clinic the team didn’t seem to have an answer for it or to be concerned by it.  Anyone who knows Jody can pick-up on it pretty quickly.  It’s hard to know what could be causing it if it’s not a known side effect of his medications.  I guess we’ll just keep an eye on it and pray that it resolves with time.

Friday Jody started his first pulmonary rehab session.  This is done locally and actually he was doing this at the same center pre-transplant.  Then it was to preserve the lung function he had, now it’s to improve it and get him back into shape.  Pulmonary rehab is basically guided exercise.  Jody is very deconditioned right now so he is looking forward to rehab and the strength it will give him.

There are plenty of moments when Jody or myself are frustrated that things are not moving along as fast as we would like them to (even though we know he has come a long way).  Usually this happens when he would like to be doing more or when I wish he could do more.  I was thinking about this the other day and realized that because we have been talking about a double lung transplant for so long, it’s become the norm to us and has lost the wow factor.  Don’t get me wrong, it’s still huge and we know it, but sometimes we forget just how huge it is.  It’s not until I tell a complete stranger and watch their eyes grow large, and hear, “Oh, wow!” spill from their lips.  It’s not until I hear the lead anesthesiologist who was in the OR with Jody (1 of 4 who were there) say that a double lung transplant is the hardest thing for an anesthesiologist to perform, “By far harder than a heart transplant.”  It’s not until I hear from a transplant coordinator that a lung transplant requires higher doses of immunosuppressants than any other transplant performed today.  And this week, it was when the transplant doctor said that it takes ONE year to fully recover from this surgery that I was once again struck by the magnitude of it.  We have been told this before by other lung transplant recipients but this time it really hit home.  In this day and age people have major surgery, go home a few days later (if not the same day), and are back to work a few weeks after that.  When I hear that it takes ONE year to recover from this three and a half hour surgery, I become that wide-eyed person, appreciating the greatness of it and I too utter, “Wow!”  When we remember this, we embrace the progress Jody has made already and know not to rush his recovery.  A year sounds like a long way off when our lives have already been on hold for a year, but what’s another year when he has the rest of his life to live after that?  Sometimes I feel that people think that since Jody is home all is well and that transplant is done.  As you can see, the surgery is complete but this is far from over.  Two months down, ten months to go…

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Baby Steps

22 Sep

Today marks one week since Jody was given the gift of life; a new pair of healthy lungs, for which we’ve all been praying.  Truthfully it’s hard to believe one week has come and gone.  It has been an intense week with many highs, most notably Jody’s first breath with his new lungs, but the week had it’s fair share of low points as well.  Lately it felt like we were having more low points than high points, as if Jody’s progress had come to a halt. We continued to rejoice in these new lungs and believed things would get better.  Jody has said a few times over this past week, “I didn’t know it was going to be like this.”  “They don’t tell you all of this beforehand.”  That being said, he has no regret in his decision to have the transplant done because he realizes that what he is experiencing right now is temporary, and will get better.  He knows that down the road, when he’s enjoying life again, watching his girls grow up, and free of his sick and diseased lungs, it will be the reward for his current suffering.

In my last post I talked mostly of the swallowing study and Jody’s need for a feeding tube.  Surgery for this is scheduled for today at 3:30 pm.  Since we are in a hospital its doubtful that this will be the actual time of surgery, but keep him in your prayers around that time.

Since that last post it seems Jody’s biggest issues have been finding the balance between pain management and low blood pressure.  The doctors believe his thoracic epidural is likely the culprit for his low blood pressure.  He was weaned off of the continuous IV medication which was helping this since he was doing so well and his pressures were stable (that was when he was still able to get up and walk).  In the three days since that time Jody hasn’t really been able to get out of bed or walked because every time he tries, his blood pressure drops and he nearly passes out.

The epidural Jody had been using up to that point was not a narcotic.  It was strictly a numbing agent.  He was getting a continuous rate of this medication to keep his chest area numb, and he had a trigger button which could be pushed for additional pain relief.  He was also getting IV Tylenol and on occasion IV Dilaudid to help when his pain level jumped (usually because of coughing or movement).  The night before last, the doctor covering the floor decided to restart the Dopamine (the medication to increase his pressure) and trial turning off Jody’s epidural to see if it would help with his blood pressure which was in the 60’s again.  While I believed he needed this medication to help with is BP, I was completely and totally against the decision to turn off the epidural.  I don’t think Jody quite understood the implications of this decision.  Slowly, but surely, as the numbing agent wore off, the pain increased… and increased… and increased!  It got to the point where Jody was quietly moaning, writhing, entire body tense, tears flowing.  Again, it was awful to watch!  Again, all I could do was hold his hand, and acknowledge how beyond horrible he must have felt, even tortured.  Thankfully the nurse he had was great and could see his obvious distress.  After multiple phone calls, and probably a good 20 minutes of this (which I’m sure felt like a lifetime to Jody) that same doctor finally returned the nurses page and ordered stronger IV pain medication.  Honestly I wanted to wring his neck for the unnecessary pain he had just caused my husband.  After an hour without use of his epidural, it was turned back on.  Prior to this episode Jody hadn’t been pushing his button for extra numbing medication too often.  They doctors kept reminding him that it was programmed so he couldn’t get too much and that he could and should push the button more often. Once the epidural was turned back on we had a lot of catching up to do in the area of pain management.  During that time they said Jody pushed his button something like 132 times, desperate for relief (not to worry, he wasn’t dosed with the medication that many times because the machine knew better).  It took awhile for Jody to get comfortable again, but by about 1:30 am he finally fell asleep and I did the same.

In the morning (yesterday) I woke up to the sound of Jody talking to his nurse.  Instantly I could tell his speech was off, that he was slurring his words.  I recognized it, and figured it was medication induced but he seemed fairly comfortable.  Late morning it was decided by a team of physicians, that they would once again turn off Jody’s epidural (again with the intent of improving his blood pressure), only this time they would give him a Dilaudid PCA instead.  This is a continuous dose of narcotic into his IV and another button to push for extra doses of pain relief when he needed them.  In addition, they also gave him some volume expanders to help with his blood pressure.  As the day progressed it seemed like Jody was getting worse.  His skin was cool and clammy and he was incredibly diaphoretic (sweating buckets).  We were changing his pillow cases constantly.  Just to touch his arm my glove was coated in sweat.  He was pale and felt and looked awful.  Whenever Jody had been given this drug before (at a much lower dose) he always asked the nurses to push it really slowly because if given too fast he felt chest tightness and shortness of breath.  The problem with the PCA was that when he pushed the button it dosed rapidly and Jody felt the effects of that.  He preferred not to push his button because of that, however the pain was too unbearable not to push it.  Finally, late afternoon I had watched him suffer enough and asked his nurse to have the doctor come and evaluate him.  I knew something was not right and I suspected it was the Dilaudid PCA which was causing all of this.  Dr. Shah, the surgeon came to see Jody and while it seemed he didn’t necessarily agree with me, decided to switch him back to the Bupivacaine epidural (numbing medication), and take the narcotic PCA away.  Dr. Shah is a very smart man, and he runs a tight ship and an excellent lung transplant program, but I knew something had to change and that Jody could not stay in his current condition.  Honestly I’m thankful that I spoke up, because once Jody got back on the epidural he was able to take a nap, and when he woke up, he looked so much better.  His speech was clear, he was processing his thoughts and carrying on a normal conversation.  The sweating had mostly subsided, and he looked comfortable.  By 5:00 pm he even stood in place for a minute or two without feeling dizzy.  It was the best he looked in the last three days.  Additionally, his blood pressure was fine.

Since that time I learned that there was apparently a disagreement that morning among the doctors about stopping the epidural in the first place.  When the anesthesiologist came to see us in the evening he said he was waiting all day for the phone call to restart the epidural (He knew Jody would need it).  In young people like Jody whose nerves are fully functioning he said a PCA just isn’t effective for pain with a clam shell incision.  That was quite evident (not to mention all the negative effects of the drug mentioned above).

Jody had a decent night of sleep and looked good when he woke up today.  It strikes me as ironic to think that when he came from the ICU into the Cardiovascular Progressive Care Unit (CVPCU) he was on the Dopamine for his blood pressure and had the epidural and was doing well and making great progress.  He was weaned very fast from the Dopamine and they changed his pain management as I described and things went down hill fast.  He has come full circle and is now back on both the Dopamine and the epidural, just like when he arrived on the unit, and he is finally looking well.  He’s taking baby steps now in his recovery but even though they are small they are moving him forward, and we thank The Lord for that.  I know that they don’t want to keep him on the Dopamine for too long and it’s a scary thought to think of having to go through what we just went through so we ask that you would join us in praying that Jody would be able to hold his blood pressure when they do wean him, especially while on the epidural which he needs for pain relief.

A final positive report, Jody just got out of bed and walked about 250 feet!  Considering he could barely pivot from bed to chair over the last three days this was wonderful to see. I’m hoping this slow progress continues.

Lots of people have been asking about visits.  Because Jody is on large doses of drugs to suppress his immune system, we are limiting the number of visitors in to see him.  This past week he hasn’t really been up for visits period just because of how lousy he has been feeling.  His days are pretty busy and we also want to make sure he is getting the rest he needs.  If this changes, we will let you know.  Feel free to send him emails, texts, and phone calls and he will respond as he is able.  He is encouraged by all your kind words, cheering him on, and helping him through this journey to new life.

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Goodbye ICU

17 Sep

Today is post-op day two and Jody is progressing wonderfully.  I am amazed at how much has changed in such a short period of time.  I ended my last post telling you that Jody was going to have a swallowing study done before he would be granted permission to eat or drink.  In the words of the surgeon, he “Failed miserably!”  This comes as no surprise.  During the transplant itself the vagus nerve is cut and this can impact ones ability to swallow.  I’ve read that it’s quite common for people to fail their first swallowing study.  Dr. Shah wants to repeat the test on Friday but until then, no food or drink.  Jody is dreaming of an Italian sub and many of his favorite foods.  On the plus side, they are allowing him ice chips and I don’t think they have ever tasted so good.

Immediately after Jody was extubated and able to talk (more like utter a few words here and there, since he wasn’t up for much talking), we noticed his voice was very hoarse and quiet.   This could be the result of damage from the breathing tube or from the vagus nerve being cut as previously mentioned.  The doctors have been keeping a close eye on this and said they can do injections to help his voice if it doesn’t improve.  But guess what… it did!  It’s still not perfect, but it’s much better.

Yesterday morning Jody had four of his six chest tubes removed.  In case you’re wondering, chest tubes are tubes that are inserted through the skin and into the lining of the lungs to allow drainage of fluid and air.  It was great to see him lose those four tubes, but the two remaining are causing tremendous pain.  I’m going to estimate that the tubes removed were a 1/2″ in diameter and each one was inserted about 8″ inside his body.  You can imagine how having 48″ of plastic tubing inside you, moving and rubbing might be painful.  Pain management is working with Jody to ensure he is as comfortable as possible.  Even though only two tubes remain, he is moving and walking now so when the tubes inside him move, it causes intense pain and his entire body begins to shake.  It also hurts to take deep breaths which is important for him to do.  Jody looks forward to them being removed once the amount of drainage coming from them decreases.

Look at him go! (Progressive Care Unit)

Did you read that he is moving and walking?!  That’s another great improvement.  Yesterday Jody took his first walk.  It was quite the scene with about three staff members: One supporting him, one pushing his machines & pumps and another following him with a rolling chair in case he needed to sit down.  Jody walked 250 feet, taking two breaks in between.  Today he’s been up and down even more and walked about 450 feet, taking only one break.  The physical therapist says he’s making great progress.  I truly believe if it weren’t for the chest tubes he’d be going even further.  Rehab and physical therapy are going to become a big part of Jody’s recovery.  Each day he will be expected to walk more and to exercise because the harder he works the better it will be for him in the long run.  His recovery will be faster and his lungs will be stronger.  Today as Jody walked he was surrounded by a lot of the equipment he is still hooked up to but one thing was missing… the O2 tank he’s been carrying on his back for the last year.  I feel like all I can say, over and over, is “It’s amazing!”

Get well wishes from the girls (taken in the ICU).

Jody’s blood pressure, which had been really low, hanging in the 60’s is improved as well.  He is still getting IV medications to help with this, but it is staying in the low-normal range.  Yesterday he also had the Swan Ganz catheter removed (this is a catheter that is inserted through his neck and into a pulmonary artery to measure pressures in his heart).  Anyone with this type of catheter is required to be in the ICU so with it gone and with all of the progress he was making he was ready to be transferred out of the cardiovascular surgical intensive care unit.  I couldn’t wait to get him out of there. There are a lot of rules and regulations in the ICU, and I had to leave from 6-8 am & pm (four hours a day) for change of shift.  The nurses were great (for the most part), but I often feel they see little need for family involvement (including a spouse).  It’s frustrating being asked over and over to leave for minor things, especially when I felt Jody would benefit from me being there.  I think me being a nurse (which they didn’t know), and having a need to know what was happening medically with Jody, made this even harder.  So many times I had to bite my tongue and walk away graciously.  Because I couldn’t say it to them, I’ll say it to you; I know without a shadow of a doubt, their perspective would change if it was their loved one lying in that bed.  That issue aside, Jody really did receive wonderful care in the ICU and I’m so grateful.

Room with a view (Progressive Care Unit)

Jody is now in the progressive care unit where he will stay until discharge.  I’m loving it here already.  I don’t have to leave for four hours a day, there is a toilet and shower in the same room (I was going to the NICU to shower, and had to walk a long distance to use a bathroom).  The nurses seem relaxed and the overall environment is less strict.  I can even walk into his room at anytime without the secretary stopping me to “check with the nurse if it is okay.”  An added bonus… he’s got a room with a fantastic view of the Harbor.

As you can see Jody is making so much progress!  I think back to the 30 Day Prayer for Jody prayer challenge and I truly believe God heard our prayers and is honoring our requests.  I know that this doesn’t mean there won’t be bumps in the road, there will, but every smooth turn is reason for praise.  Earlier today when Jody was experiencing a significant amount of chest tube pain I told him I was sorry and that I know one day it will all be worth it.  He responded with, “It already is!”

One small area of concern (to us, not so much to the doctors) is Jody’s vision.  We are not exactly sure when it started, he noticed it yesterday, but he is having a hard time seeing.  He can’t even read a text message on his phone held right in front of his face.  Dr. Shah thought it was blood pressure related, which has improved but his vision has not.  Now he is thinking it is epidural related.  It could also be related to one of the new meds he’s on.  The plan for now is to wait until the epidural is removed and if it doesn’t improve after that they will consult ophthalmology.  Prayers appreciated.

There is one more random piece of information I would like to include even though it doesn’t really ‘fit’ in this post.  I find it interesting and would like to be able to remember it so I need to include it.  This relates to a post I wrote back in March of 2013.  Jody was having major hemoptysis (bleeding from his lungs) and had an extensive pulmonary embolization.  If you ‘followed’ me back then you might remember that in order to stop the bleeding they injected micro beads into his bronchial arteries which acted as clotting agents.  I clearly remember being told that they had to use more clotting agents on Jody than they had ever (in the history of Hopkins) used on a patient.  You can read more about that by clicking here.  Anyway, fast forward to the present.  Dr. Shah told us that when he made the cuts to remove Jody’s old lungs the clotting agents came spilling out.  He made it sound as if they were flowing everywhere and all over the place (probably not literally, but how he made it sound).  When I told him about how much of the beads they had to use to stop the bleeding, he said he was not at all surprised to hear that based on what he saw.  For some reason I found this tidbit oddly fascinating to know.

Today is September 17th, 2014.  On September 17th, 2013, one year ago to the day, we were told the hard truth… that Jody needed a lung transplant.  We weren’t prepared for those words, and it took some time accepting that fact.  Today we sit here, new lungs installed, and we rejoice in the miracle of it.  This past year has been rough, but the doctors were right, Jody needed lungs.  And now he’s got them!

 

*** It’s probably not customary to send flowers to a man in the hospital, but just to be on the safe side, if you were thinking of doing so, don’t!  Jody is not allowed to be around them at this time.***

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The Transplant Story

16 Sep

Before I begin I want to thank you for all the calls, texts, comments, messages, etc.  I wish I could respond to each of them, but it’s just been too busy here in the ICU.  I should also note that I am not allowed to talk on my cell phone in Jody’s room, and that is where I have been spending my time (there is no land line to his room either).  I am so touched by your encouragement and I know Jody will be too.  I can’t wait for him to read all the comments you left on my blog, thank you for doing so.  After a ‘decent’ night of sleep, I’m ready to put Jody’s transplant story on paper (technically a computer screen).  To make things easier on myself and to help Jody & I remember the details, I’ll put the events in a timeline.

Sunday, Sept. 14th, 2014

3:35 pm: Received phone call from JH transplant coordinator of lungs for Jody.  Told to leave ASAP.

4:20 pm:  Left our house (needed to wait for someone to come take our daughters).

5:42 pm:  Arrived at JHH after an uneventful drive.

6:15 pm:  Taken to the ICU where he would remain for his pre-op period.  We were told that surgery was scheduled for 9 pm.  Here they started IV’s, drew labs, did a few other tests, and had him do his pre-op scrub down.

8:30 pm:  Anesthesia consents were signed.

9:00 pm:  Surgery consents were signed.

9:35 pm:  Left the ICU for the OR

11:24 pm:  Surgery began.  The time between when he left for the OR and when surgery actually started was the time it took for anesthesia to place all the lines/tubes that he would need for this procedure (breathing tube, central lines, A-line, femoral line, etc.).

Monday, Sept. 15th, 2014

12:16 am:  Jody’s new lungs arrived.

12:39 am:  Left lung was being put in.

2:25 am:  Both lungs were officially in (JODY GOT LUNGS)!!!

3:00 am:  Dr. Shah, the transplant surgeon came out to talk to me and tell me how everything went, which was well.

3:35 am:  Transferred out of the OR and into the ICU (exactly 12 hrs after receiving the call from home).

5:30 am: I returned to the ICU to see Jody for the first time post-operatively.

When we got the call at home I wasn’t sure what to think, especially after the two previous calls which ended in dry runs (check out those posts if you haven’t read them, by clicking here & here).  I honestly wasn’t as willing to believe that this was the real deal as I had been during the previous run.  Jody, on the other hand, somehow knew this would be the one, and he was much more emotional about it, compared to the previous dry runs.

Once the ball got rolling, the timeline of events seemed to progress rather quickly.  You might think I’m crazy for this, but I purposefully chose to be by myself for the procedure.  I didn’t know how I would react or respond and I didn’t want to feel like I needed to be strong for others or that I was entertaining people while I waited.  I appreciated our family’s understanding of this.  Since transplant happened in the middle of the night on a Sunday night, I had the entire waiting room to myself.  The lights were dimmed, it was quiet and peaceful, it was just me, and it was great!  Truthfully, I felt very calm.  I knew that we were being covered in prayer by the few people who knew Jody had been called.  I knew that Jody was in good hands with Dr. Shah and even better in the hands of The Great Physician Himself.

For me, the most emotional time up to this point was after Jody left for the OR.  I walked to the parking garage to drop off and pick up some things.  While there I heard the incoming sound of the JH chopper.  Instantly I knew it was carrying Jody’s lungs and I needed to see it!  I went running, bags and things falling all over the garage, which thankfully wasn’t busy.  As I watched the chopper land, and heard the loud roar of the engine & propellers, I became overcome with emotion.  Suddenly I felt such intense grief for a family who, while we rejoice, are gathering to mourn the suddenly loss of a loved one (brings tears to my eyes even as I type this).  How do you thank someone for a gift such as this?  My feelings of grief were followed by joy, hope, fear, and nervousness, all rolled into one.  I had my moment of tears, but as the chopper lifted back up minutes later, I wiped my tears, and carried on.  In case you paid special attention to the timeline of events, you may have noticed that it turns out I was wrong about that chopper carrying Jody’s lungs.  They didn’t arrive until 12:16 am!  Either way, I believe God used that moment to help me feel a small fraction of what the donor family was feeling.  Please, please, as you pray for Jody and his recovery, remember this giving and grieving family in your prayers too.  It’s unbearable for me to think of what would have happened to Jody if new lungs never came and it hurts to know that another family is experiencing this pain in their hearts.

The thing I was most nervous about following transplant was walking back to see Jody for the first time.  I felt pretty prepared for all the equipment, but how do you prepare yourself to see a loved one lying still and helpless and on a breathing machine?  I wasn’t prepared for what I saw.  The gobs of lines, tubes, and machines had no effect on me.  It was his face.  I saw him from the door as I prepped to go in (donning gown, gloves and mask), and I felt like I’d just had the wind knocked out of me.  He looked, putting it bluntly, dead.  The color of his skin, the stillness of his body.  My first thought was, “He looks like he’s lying in a coffin!”  It took courage to bring myself to walk into his room.  As I stood there, I couldn’t get past that thought, and I began to feel queasy so I grabbed a chair to sit down beside him.  I must have done a good job of hiding my shock at how he looked because it went completely unnoticed by the nurse taking care of him (who was wonderful by the way).  Honestly, it probably took a good hour until I could see past the ‘deadness’ in his face and skin, but thankfully, eventually I could.

At this point in time Jody was completely and totally sedated.  In fact, he still had paralytic agents in his body from surgery so he literally could not move.  For many hours he laid there completely still and unaware of anything going on around him.  Jody has what is termed a ‘clam shell’ incision, one that goes completely across his chest horizontally, instead of vertically as seen in heart surgery.  The clam shell incision is known for being especially painful.  For this reason, late morning yesterday they inserted an epidural catheter, much like women use for labor, only this numbs his upper chest.  Once the catheter was in and Jody was receiving pain mediation to his incision they started to wake him.  In order to start using those new lungs, he needed to be awake.  It was around 11:30 am when they lowered the ventilator settings to allow Jody to do most of the work of breathing, and breathing he did.  It was awesome!  The unpleasant thing for him was being awake, tied down, and having a tube down his throat.  He had been warned pre-operatively of the need to stay calm and not fight because it would only make it worse for him, and make the gagging sensation worse as well.  Knowing and doing are two very different things.  Throughout the day, this became the hardest thing to watch.  He was so uncomfortable with that tube and all we could do was tell him over and over that he needs to relax and stay calm.  I held his hand and rubbed his hair, doing the best I could to calm him down.  It was miserable.  There were times he looked at me like, “You have NO idea what this is like, I can’t do this.”  I could see his frustration and how desperately he wanted that tube out… but his lungs weren’t ready yet.  I truly cannot put into words how awful this part was for me.  Over and over I wanted to weep and say, “I’m so so sorry you have to go through this (again the tears fill as I type).”  I realized that this gift of life comes at a huge price for both the donor and the recipient.  It’s no piece of cake!

From a breathing stand point Jody was doing great, that was never an issue, thankfully.  Initially Dr. Shah told me that they planned to remove the breathing tube today, and I wondered how we were going to make it until then.  Jody’s nurse called me his “Professional Calmer Downer,”  because he was much calmer when he could feel my touch.  But how could I sit at his bedside all night (after already losing 24 hrs of sleep), and how could he endure it?  They began testing Jody to see if he would be able to breathe completely on his own if they pulled the tube earlier than planned, and he passed with flying colors!  At 4:35 pm they extubated him (removed the breathing tube), and it was instant relief for Jody.  Do you want to know the first words he managed to faintly whisper?   Of all the things he could have said, like, “I wanted you to stop telling me to relax,” or of all the things he could have complained about, such as pain, he instead chose three little yet powerful words, “I love you!”   This speaks to his character.

Jody had essentially been breathing on his own on the vent, but with the tube gone, it actually looked like he was breathing on his own.  They put him on 2L of oxygen, not because he needed it but “just to make us (the team) feel better.”  Remember, coming into the hospital he was on 6L of continuous O2 and was still short of breath.  By 5:00 pm (only 25 minutes later) they removed the oxygen all together and he was breathing 100% on his own.  It was amazing!  His pulse ox started in the high 80’s and slowly increased to around 94-95% which is where it’s hanging right now.  Next to the birth of my children, this was the most miraculous thing I’d ever seen!  Someone else’s lungs, in him, breathing, on their own, just as they had done before.  It worked!!!  Jody no longer has scarred and failing lungs in him, but instead, strong, healthy ones!  To see him off oxygen was… can’t even find the right word, only more tears.  He has continued to breathe free of any assistance, and it’s breath-taking for me.

Jody is doing amazingly well, but the journey is far from over.  He has low blood pressure which they are working to improve.  They want to keep his lungs dry so they need to avoid giving him fluids.  Instead he’s on meds to improve his pressure and also got a few blood transfusions since surgery which has helped. One thing that is really bothering Jody is his dry mouth.  He hasn’t been allowed any liquids, including ice chips because of the risk of aspiration into his new lungs.  He will undergo a swallowing study this afternoon which will determine if he will be allowed to eat or drink.  After being given medications which cause dry mouth, and his mouth hanging open throughout surgery and the entire time he had the breathing tube, I can’t imagine how parched he must feel.  Please pray that God would take this feeling away from him and/or that he would pass his swallowing test when they are done.

There is so much more I could share with you but I need to stop.  I’m glad I could finally get this out to you.  Today is a busy day for Jody and I will continue to update you when I can.  Praising God for answered prayers, may He receive all the credit for Jody’s incredible progress!

I'm Breathing!

 

 

 

 

 

 

 

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Jody Got Lungs!

15 Sep

It is with a heart full of awe and gratitude that I announce:

Jody got lungs

Third time was the charm!  Jody is out of the OR and now in the cardiovascular surgical intensive care unit (CVSICU), where he arrived at roughly 0345 this morning.  Surgery was a success, but he is far from ‘out of the woods.’  He is currently sedated and a ventilator is doing all the work of breathing for him while his new lungs rest.  There is hardly a square inch on his body that is not hooked up to a line, tube, or machine.  They are, at this very moment, placing a thoracic epidural which will help to keep his pain under control and in turn improve his breathing (once he is doing it on his own).  I am assured by the nursing team that Jody is right on target with where he needs to be in his recovery process.  There is a long road ahead, especially for Jody.  We covet your prayers.

I realize that I have not given you much detail; it has been a sleepless night and a busy morning.  I don’t feel that I have the time (or energy) yet to write a proper post, but wanted to get something brief out to you.  I do have one favor to ask.  I would LOVE if you would leave comments here on the blog (instead of, or in addition to, Facebook).  Blog comments can be printed out and cherished forever as we remember this journey in the years to come.  I think it would be awesome for you to use this time to write something specifically to Jody so that when he wakes up he will be overwhelmed by the care and kindness of the people around him, both known and unknown.  Imagine waking up to lots of lovin’!  At his point, you know more than he does about what’s happening.  Encourage him and show him your support.  When I look at him now I am saddened that he has to go through all of this, but overwhelmed by the strength and fight he has in him.  Let him know how he inspires you!  Ready. Set. Go…

 

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