Archive | December, 2014

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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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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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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