Archive | March, 2015

Infection… but no rejection

26 Mar
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Pre-bronch selfie

Since I last wrote, Jody had his six-month post-transplant bronchoscopy.  In case you forget, this is a procedure where he is put to sleep so they can introduce a scope, via his mouth/throat, into the lungs.  His lungs are examined and “washed” with saline.  Tissue samples are taken to check for rejection.  It normally takes about two days until we get the results of this test back.

Like his three-month bronch, this one showed no rejection!  Praise the Lord for that!  It did however show that he is growing a bacteria called Pseudomonas Aeruginosa.  This came as a surprise (to us)… sort of.

Pseudomonas is a bacteria that Jody harbored in his old, CF lungs.  Once he got it, it never went away.  That’s sort of the thing about Cystic Fibrosis.  They have thick, sticky mucous in their lungs and once bacteria gets in there it finds a home in the mucous and is hard, sometimes impossible, to eradicate completely.  This bacteria is typically controlled with inhaled and oral antibiotics, however, when it flairs up (becomes more numerous), one experiences symptoms and is said to have a lung infection, or a CF exacerbation.  Normally this calls for IV antibiotics to again lower the number of bacteria.  Those of you who have been following Jody’s journey before transplant know that he has spent his fair share of time in and out of the hospital fighting these frequent lung infections.  In the past it became clear when Jody had an infection because breathing became a little more labored (as his lung function decreased), cough and mucous production increased, and Jody became much more tired.  Those were his classic signs that it was time for another hospitalization and IV antibiotics.

We had been warned that it’s not uncommon for some of those old CF bacterias to make their way into the new lungs.  It could have been sitting in his trachea (or elsewhere) when the new lungs were placed, and eventually made its way down into the lungs.  Actually, we found out that a very small amount of this bacteria showed up on his three-month bronch (which they didn’t tell us at the time), but that it was too small to treat.  Now, three months later, it’s grown to a quantity worth treating.  We were surprised to hear of this infection because Jody feels great; breathing is good, he has no cough, no mucous, and no drop in energy.  He has none of the “classic” signs of an infection that we’ve grown so familiar with identifying.  I guess that’s the beauty of new lungs.

In case you’re wondering, this does not mean Jody’s CF has returned.  Thankfully, this cannot happen.  Jody will never again have Cystic Fibrosis in his lungs.  This means that he no longer has that thick, sticky mucous which bacteria love so much.  He should be able to get rid of the infection completely (yeah!).  He is treating with oral and inhaled (nebulized) antibiotics for three weeks; no IV’s, no hospitalization!

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Post-anesthesia and breathing well

Here is a picture of Jody after the bronchoscopy, still a little drowsy from the anesthesia.  I share this photo because even though he’s in and out of sleep, you can see on the monitor, if you click on the photo (middle number in blue) that his oxygen saturation is at 99% on room air (no oxygen).  Seeing that never gets old!

Aside from the infection, the latest issue we are dealing with is the possibility of Jody haven broken the internal wire holding his sternum (chest) together.  Over the last week or two he’s been noticing pain in the center of his chest, that feels shallow, like somethings rubbing.  In certain positions he moves he can hear a “popping” sound.  These signs point to a fractured internal wire.  Next week we have an appointment for a CT scan of his chest which will tell us if our speculation is correct.

Like us, your next question might be, how will they fix that?  Honestly, we’re not really sure.  When Jody asked his transplant coordinator this question, her response was, “I don’t want to tell you because I don’t want to give you anxiety.”  This response produces almost more anxiety because it sounds like the fix for broken wires is pretty ugly.  Of course, I imagine the worst; having his transplant incision opened to remove or replace the wires, needing chest tubes, needing the thoracic epidural again, pain issues, etc..  Most likely it won’t be that bad,  but it would have been nice for the coordinator to give us a better answer.  Who knows, maybe the wires are perfectly intact and there’s another reason for the pain.  As always, I’ll keep you updated as we learn more.  We appreciate your prayers about the infection and the possible broken wires.

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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