For the Sake of Love & Health

29 Apr

As I begin this post I struggle for words to adequately describe the significance of Jody’s new lungs. When you have watched a love one suffer, increasingly, for any period of time, it hurts deeply. When you live in fear for said loved one’s life, it’s hard and scary. When you bear witness to said persons healing it’s incredibly amazing and freeing. The gift of life, at the expense of another, one that can never be repaid, is so very humbling. The challenge then becomes, how can I (we) honor and protect that gift?

Never again do I want to see Jody struggle for breath, to be separated from him time after time by a hospital for the sick. To live in guilt because I’m not enough and can’t give my all to everyone who needs me (spouse, children, work, etc.). In some ways Jody’s transplant has made me almost more fearful of the future. I will never forget how sick he became two weeks after transplant when he developed aspiration pneumonia and was transferred back into the ICU. I remember sitting at his bedside, thinking to myself, this is what it’s going to be like if he gets a hard-to-treat infection, his new lungs stop working or they go into serious rejection. I’m going to watch him struggle and suffer only this time, the end will come, and I will be left a young widow, and mother. Obviously I don’t know what the future holds and I hope my vision from the hospital is far from the truth but either way, I will do everything in my human power to protect Jody’s gifted lungs and keep him well. I want him around for a VERY long time!

That being said, I thought I would use this post to share with you some of the guidelines we live by. You might remember in the hospital after Jody’s transplant we received a three-ring binder, Jody’s “Owner’s Manuel for life,” they called it. This binder is full of information about post-lung transplant life and holds guidelines for practices which prevent lung infections. Common infections can become very serious and even life-threatening for one with a weakened immune system. The list below was given to us by Jody’s transplant center, Johns Hopkins, and if you are a lung transplant survivor, you probably have similar guidelines given to you by your center, which I encourage you to follow.

Here are the rules of lung transplant by which we live:
•  Wash your hands with soap and water frequently, before eating or drinking, and after using the bathroom.

– This one is kind of a no-brainer.

•  Avoid persons who are not feeling well or who have active infections (cold, flu, skin infections, diarrhea, stomach flu, etc.)

We take this guideline VERY seriously.

•  Wear disposable gloves for any high risk situations.
•  Never change diapers of an infant, and avoid any direct contact with an infant who has received oral polio vaccine in the last six weeks.

Thank goodness we’re out of the diaper stage.

•  Avoid individuals who have been vaccinated with any live virus (chicken pox, measles, mumps, rubella, nasal flu) for at least two weeks.

– So, friends, family, please stay away if this is you or your children.

•  Avoid individuals who did not receive the flu vaccine.

– We’re especially thankful to our family and friends who got the flu shot (even though they preferred not to) so they can continue spending time with us.

•  Wash fresh fruits and vegetables thoroughly and/or peel skin before eating.
•  Be sure that all ground meat, chicken, fish and pork are thoroughly cooked before eating.
•  Never eat sushi.

– Actually, we have an entire paper filled with foods from all food groups that Jody is to avoid, such as common cheeses, salmon, crab, sliced deli meats, store bought salads, well-water, brewed tea, raw honey, and the list goes on and on.

•  Cook eggs until the yoke is solid before eating.
•  Do not eat raw cookie dough or “lick the bowl” when preparing cakes.
•  Use only plastic, dish washable cutting boards.
•  Do not eat at buffets.

– This is due to the risk of bacteria growing on food that has been sitting out for too long, possibly kept at improper temperatures, as well as the risk of infection from people touching the handles of the serving spoons.

•  Avoid large crowds, especially in close quarters indoors (movies, concerts, plays, religious services). If this is not possible, wear a mask, and wash your hands frequently.

– We are church-going people so this one is challenging for us. We did stay home during most of the cold/flu season this year, especially with Jody being so freshly transplanted. My concern is actually less about Jody (he can wear a mask and wash his hands), and more about our young daughters picking up something in the over-crowded classrooms, and bringing it home. In fact, our first Sunday back with the girls that is exactly what happened, much to my dismay. I’d like to add that if I’m sitting beside you at church and you see my sanitize my hands immediately after shaking your hands, don’t take it personal, it’s not that I think you might be germy (or maybe I do), I’m just trying to keep my family healthy.

•  Be aware of people around you – If someone seated near you is coughing or sneezing – get up quietly and MOVE! These precautions are especially important during flu season (October thru March).

– Sometimes I think I’m a little too aware of the people around me. I can pick up on someone coughing from across a room. I cringe when I see people coughing into their hands or blowing their nose and not washing their hands or using hand sanitizer afterwards. I can envision their germs spreading onto everything they touch afterwards.

•  You should never participate in gardening or digging in the dirt (fungus and mold live in the soil and grass).

– This is a hard one for Jody since he enjoys working in the yard and even went to vo-tech for landscaping. I, on the other hand, don’t enjoy yard work. So if you drive past our house and see lots of weeds growing, you’ll know why.

•  NEVER empty kitty litter or clean the cat litter box.
•  Avoid kittens at all times. Adult cats may present a lower risk of giving you an infection but can also be a problem.

– Good thing we’re not cat people.

•  Avoid all birds and their droppings.
•  No traveling/flying in an airplane for at least one year following transplant.
•  When flying in an airplane you must wear a mask and keep the air vent closed.
•  When outside in the sun, wear protective clothing, broad brimmed hat, sunglasses, sunscreen and lip balm. The best times to be outside are early morning and late afternoon. Transplant meds make the skin more sensitive to the suns rays, resulting in high risk for skin and lip cancers. You must see a dermatologist yearly to watch for changes in your skin.
•  Anti-rejection medications are time sensitive and must be taken twice a day (every 12 hours) FOR LIFE!
•  Every day (twice a day) you must monitor and record your weight, blood pressure, heart rate, temperature, home lung function, and blood glucose levels. Bring these with you to all clinic visits for review.

– I created a spreadsheet for Jody to record this information (I didn’t like the one that was provided to us by the clinic). If you are post-lung transplant feel free to download this document for your personal use if you find it helpful.  Lung Transplant Log

By now you’re probably getting a picture of how intense the rules are following a lung transplant. These things apply to Jody for the rest of his life and believe it or not, the above list is not all-inclusive, we continue to learn of new things that we need to watch out for or avoid altogether. I could probably write another blog post on how we actually put all of this into practice and what we do to keep Jody healthy, especially with young children in the home.  I will say that Jody always carries a mask with him and we have hand sanitizer nearby at all times. Obviously we do not enjoy being so diligent about avoiding infections and I often day dream about what it would be like to not be so consumed with avoiding and fighting germs. To not worry every time we go to someone’s house that the hand towel in their bathroom is one their entire family (including children) have been rubbing their hands and mouths on for a week. To not freak out internally when my kids are playing with another child who is coughing. I can hardly imagine what it would be like to have a cold and not worry about it putting a member of my family in the hospital. I remember when Jody’s CF doctors were beginning to talk about transplant (because he kept getting sick and dropping his lung function), I told one of them, “I think this entire thing is going to make me a germ-a-phobe.” His response was, “That’s okay!”

I imagine there are people around us who might not understand and think us extreme. Perhaps they’re tired of hearing us say that we can’t do something because of Jody’s transplant. Those people have probably never lived in a hospital or were faced with the real possibility of losing the love of their life. Once you’ve faced that, you never want to experience it again. I don’t ever want to see Jody, oxygen saturation dropping into the 50’s, gasping for air, barely able to move, out of his mind with hallucinations, and/or on a ventilator. The truth of the matter is that while I daydream of being “normal” I’m happy to be my germ-crazed self because it means that I have a reason to be this way. If Jody was not living, I could be “normal” and much less fearful of even the common cold, but he is worth every germ-fighting, infection-preventing routine we practice (and even the few gray hairs that I’ve acquired along the way).

* I apologize to all the email subscribers who I confused by accidentally (and prematurely) hitting the “publish” button while writing this post.  Oops!

We Need A Cure

9 Apr

Cystic Fibrosis.  Do those words have meaning to you?  Is it something you’ve heard of but know little about?  Maybe you’re all too familiar with those two short words?  Or perhaps you’re like most people and have no idea what they mean and the impact they have on one’s life.

Obviously the term, Cystic Fibrosis, carries much meaning for Jody and I.  Actually, I have a love/hate relationship with CF.  I have met so many great people because of this disease and our shared understanding of it.  It’s been neat to see how this blog has connected some of us, something I never would have imagined when I started it.  This disease has allowed me to be a part of a group of fellow CF Wives online and they are a great resource and support when I need it.  I’m also thankful for all the healthcare workers (especially ours) who have made treating people with CF their life’s work.

There are many things I don’t like about this disease, clearly it’s taken us down some difficult paths we would not have chosen for ourselves.  My heart breaks for those I know, or have learned of, who have had lives cut short because of Cystic Fibrosis, and I thank you for sharing those stories with me.  What it boils down to is… WE NEED A CURE!

Jody and I have been asked to participate in the Lancaster area Cystic Fibrosis Foundation – Great Strides Walk for CF.  Actually, Jody has been chosen as the Honorary Chairman of the walk and we will be saying a few brief words at the event.  In addition, our team will be leading the walk.  Will you join us?  Great Strides is the foundations largest fundraising event with more than 125,000 people participating, nationwide.  Funds raised support Cystic Fibrosis research and drug development, moving us closer to the cure we so desperately need.  We believe in the work of this foundation because we have been touched by it directly.

We would love to have you join us, team Journey with Jody, for some fun and exercise while supporting a cause that is near and dear to our hearts.  And since Jody is the star of our team, and the honorary chairman of the walk, you’ll be supporting him too.

Click this link to join our team or to make a tax-deductible donation to team Journey with Jody.

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I’m ready to walk for a cure… are you?

EVENT DETAILS:

Date: Sat., May 16th, 2015
Check-in: 9:00 AM
Walk: 10:00 AM
Distance: 5K (approx. 3 miles)
Event Location: Garden Spot High School, New Holland, PA

FYI we will be using the Journey with Jody shirts we sold at our auction as our team shirts.  We have a few left if you are interested in purchasing one.  If you do not have one just wear a black shirt (and only if you’re feeling really crafty, decorate it with your own Journey with Jody lettering).

This is a family friendly event that includes activities for kids.

Here’s a two-minute video of what Great Strides is all about:

 

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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Because you asked for it…

28 Jan

Today is the day Jody has been dreaming of for the last four months!  Why, you ask?  I’ll tell you… if you keep reading.  Many of you have noticed that I’ve taken a break from blogging and I’ve been increasingly questioned about this.  I’m touched that so many of you enjoy reading my posts and take interest in knowing how Jody is progressing in his transplant journey.  In this post I’ll do my best to give you an update on how things are going, but I warn you, it’s likely to be a long one.

Since transplant Jody has needed a daily intravenous (IV) infusion of a powerful anti-viral medication (Ganciclovir).  In the hospital this drug had special connectors on it to prevent the nurses from touching the medication.  At home the drug came packaged in about three layers of bags, we were given gloves to wear when handling it, and gowns to wear (I guess) when administering it, as well as a special box to dispose of it.  Jody needed to take this drug because he tested negative for CMV (Cytomegalovirus), and his donor tested positive.  We had been warned pre-transplant that this is a common occurrence as many of us have been infected, unknowingly, with the CM virus.  To help you better understand, here’s a brief explanation of the virus from the Mayo Clinic:

“Cytomegalovirus (CMV) is a common virus that can infect almost anyone. Most people don’t know they have CMV because it rarely causes symptoms. However, if you’re pregnant or have a weakened immune system, CMV is cause for concern.

Once infected with CMV, your body retains the virus for life. However, CMV usually remains dormant if you’re healthy.”

Anti-viral medication, handled like a chemo drug.

Anti-viral medication, handled like a chemo drug.

It amazes me that so many CFer’s test negative for this virus because it seems they so easily catch everything else. Regardless, because Jody was so immunocompromised fresh out of transplant and his team did not want him to get the CM virus, he had to take this IV infusion for three months, stopping mid-December.  At that point he converted to a pill form which won’t necessarily prevent him from getting it like the IV did.  It is likely that he will contract this virus at some point in time, as most people do, so he is tested routinely for the virus so it can be caught and treated early if and when he does get it.  Jody is no longer on IV’s but he does still have his Hickman catheter in his chest which he flushes daily to maintain patency.

Christmas '14In December our family enjoyed a simple and quiet Christmas at home, just the four of us.  One thing that was missing this year was a 30 foot oxygen line, getting stepped on and yanked beneath the presents and wrapping paper. It’s absence was welcomed.

Hello 2015!In January we celebrated the arrival of the new year with hope that it will be one of healing and change; healing from the last three years of our lives and change as our lives become (ideally) a little less dictated by disease and sickness.  For two years, and especially this past year, we have felt held back and it’s great to feel those reins being loosened.

Jody is now four months post double-lung transplant and since my last post he has continued to improve.  He is still participating in pulmonary rehab three days a week, and his lung function is still climbing.  It’s incredible, and crazy and wonderful!  I wouldn’t doubt Jody will soon hit 100% lung function!  His breathing has never been better!

Jody’s anti-rejection medications come with many side effects and we are still working to manage them.  His blood pressure, which had been high for months following transplant, and was unchanged by an anti-hypertensive drug, is now much lower after the addition of a second blood pressure medication.  The steroid he is on is being tapered down toward the maintain dose he will take for life.  Each time his dose is lowered his blood sugar levels improve.  It is possible that he will be one of those few people who will not be (medication induced) diabetic for life.  We hope that once he reaches his maintenance dose of Prednisone he will be able to stop checking his blood sugar and injecting himself with insulin.  How great would that be?!

Jody seems to be very sensitive to his Tacrolimus, one of the anti-rejection drugs.  His desired blood Tarco level is between 12-14.  This is the range where the drug is most therapeutic for him.  His levels seem to be jumping all over the place, going low at 11 or high at 16.  His dose keeps changing and we have yet to find the perfect fit that keeps him steadily in his desired range.  It’s odd that even on the same dose his numbers fluctuate so much.  This drug is hard on the kidneys and Jody’s kidney function is definitely showing signs of impact from it (and other) medication, especially when his Tacro levels are elevated.  This is a little worrisome to me, a once nephrology nurse, especially knowing that it’s not uncommon for lung transplant patients to eventually need a kidney transplant as well.  Jody’s kidneys have taken a beating through years of potent antibiotics, toxic levels of drugs, and other necessary medications, known to be taxing on these hard-working organs.  Obviously we pray healing and protection over Jody’s kidneys.

Guys Cabin Weekend '15Overall things are going really well.  Jody is breathing independently and enjoying life… cautiously… after all, it is still cold & flu season.  This month he even got to enjoy a fun ‘guys’ weekend away with some friends, something that would have been near impossible a few short months ago.  His new lungs are AWESOME and we remember with gratitude, the person/family who gave them to him.

As I mentioned in the beginning, today is the day Jody has talked about for the past four months.  Today is the day he got his feeding tube taken out!!!  He has hated that thing since the day it went in.  It was put in out of necessity, he hadn’t been allowed to eat for over a week.  Actually, he probably only ate a week and a half out of the five weeks he was in the hospital.  I’m glad for the nutrition this tube provided him during that time, but since coming home, and being given the okay to eat, the tube hasn’t been used (with the exception of daily flushing to clear the tube).  At discharge Jody weighed 100 lbs, today he is 124.  Thank you to the many of you who brought us delicious meals, you played a part in this much needed weight gain.

You might be wondering why Jody’s feeding tube has stayed in this long if it hasn’t been used for the last three months.  Steroids impair healing and because Jody was on such a high dose, his feeding tube hole might not have closed had they taken it out three months ago.  Picture him taking a drink and it immediately coming out his stomach (we’ve seen videos of this).  Each month the doctors have lowered his steroid dose and he is finally at a level where they feel his tube can be pulled without complications.  This is great news because the tube has caused Jody great discomfort.  It is now gone, leaving Jody with yet another scar, proof of all he’s endured on this journey.

Jody’s has now been approved for monthly clinic visits.  It’s so great to be spending less time at Hopkins.  Sometimes he still has appointments there for other reasons, like today, but it’s great to have his transplant appointments less frequently.  For the past year (or more) we’ve been going to Hopkins at least monthly, often even more frequently then that, so I can hardly imagine what it will be like when Jody’s appointments become even more spaced out.  To put Cystic Fibrosis and transplant on the back burner of our lives again seems dreamy.

I warned you this might be a long post.  I’ll end by asking for your continued prayers for protection over Jody during this tough cold and flu season.  Ironically the girls and I have gotten colds (we have them now) but we’ve managed to keep them from Jody (so far).  Our family has avoided the stomach bug and flu that has been spreading like wildfire.  We’ve been warned about how any of these might impact Jody, and would prefer to avoid them (and another hospitalization) altogether.

Thanks again for reading and for your continued care and concern for Jody.  On Saturday he will be celebrating his 43rd birthday… out of the hospital, breathing great and healthy.  One couldn’t ask for much more than that!

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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