Tag Archives: lung transplant recovery

Surviving

8 Dec

Christmas tree shopping

I can hardly believe we’re entering the second week in December.  I think I’m going to blink and realize that Christmas has come and gone.  Last week we went out and bought a real tree (which we had approved by the transplant team).  Pre-transplant, the cold weather was very bothersome for Jody.  As soon as he breathed that cold air into his failing lungs it caused his chest to tighten and elicited lots of intense coughing.  So much so that sometimes it even caused bleeding in his lungs.  Last winter I dreaded every time he stepped outside.  Few things scared me like the site of him coughing up bright red blood, standing helpless, waiting and wondering if and when it would stop.  People with CF have died from this alone; it can be very serious.  I used to tell Jody to wrap a scarf around his mouth and nose, I’d tell him to go straight to his seat (I’d buckle the girls into their car seats), and sometimes we’d even use his handicapped sign to park close to an entrance so he had less exposure to that cold air.  Often he needed to do an Albuterol nebulizer treatment after being outside to help open up his airways, relieving some of the chest tightness.  There are so many things we take for granted in life, like being able to go outside and breathe comfortably and effortlessly.  This winter is going to be different.  While I’m scared of the fact that it’s cold and flu season (and I’ve been warned that Jody could be admitted 10 times this year for various bugs and infections), I feel such peace knowing that he can walk out the door and breathe well.  No longer do I fear him coughing, no longer do I dread the site of blood spilling from his mouth.  It’s odd to not hear his cough anymore… but it’s wonderful too!  All that to say, aside from being cold, our hunt for the perfect Christmas tree went well; no oxygen, no shortness of breath, no coughing, no blood, and one perfectly green, perfectly fragrant six-foot Fraser fur.

Jody continues to make great progress, and his PFT’s are still climbing.  Last week at clinic he was up to 85.4% lung function.  Oddly, just two weeks after being lectured for driving and told that he wouldn’t be allowed to drive for six months, he was given the okay to drive again.  We don’t pretend to understand what changed their minds, nor do we question the decision since Jody feels ready and it will make our lives easier to have two drivers in the family again.

I have been back to work for about 2-3 weeks now and it has not been easy.  People ask me all the time how Jody is doing, and I appreciate that, he’s been through a lot and deserves to know that people care about him.  Unfortunately, that’s normally where the conversation ends.  Very few people ever think to ask how I am doing, really doing.  These past three months (nearly) have been anything but stress-free.  We’re finding that Jody has very little memory of his five weeks spent in the hospital which, for him, is probably for the best.  I on the other hand have full recollection of it all, including things that I have chosen not to share on my blog.  I’ve had very little time to process all of this as I have lived on survival mode.  The weight of ‘single’ parenting, care giving, working to provide for my family, housekeeping, chauffeuring, arranging babysitters and doctors appointment after appointment are heavy upon my shoulders.  Nearly every day off work is spent at some kind of appointment.  I have adjusted my work schedule when I can, working all kinds of shifts to lessen the need for sitters, at the expense of sleep.  Work in and of itself has been stressful lately with census surges and less than ideal staffing.  Jody and I have had very little quality time together since transplant and I’ve spent little time with friends and doing the things I enjoy.  All of this has taken its toll on me.  This entire experience, including the two years leading up to transplant, has certainly changed me.  I’m overjoyed with how well Jody is doing with his new lungs and words can’t describe how thankful I am for this gift, but just as it’s been hard on him it’s been hard on me too.  I’m dreaming of a relaxing vacation, just he and I, where the ocean is clear, the sand is white, and his scar is faded.  It will be a long time until this dream comes to fruition but I trust that one day it will, after all, isn’t that the point of this transplant, to enjoy life, to make dreams come true?  We may not be reaping the full benefits of Jody’s new lungs yet, but I know we will.  I know that my stress level will decrease, and one day (hopefully soon), life will be ‘normal’ again.  Until then, I continue to put one foot in front of the other and press-on.  Just like Jody, I’m a survivor!

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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

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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