Tag Archives: cystic fibrosis

Remembering 9.15.14

16 Sep

Transplant stats

Transplant stats chalkboard art

On this day, at this time (0845), one year ago, I sat at a table in the family waiting room of the cardiothoracic surgical ICU at Johns Hopkins Hospital.  It had been a whirlwind of events over the previous 36 hours and I had finally gotten some sleep and was ready to share the story of Jody’s double-lung transplant.  I remember feeling such a sense of hope and wonder as well as gratitude and grief.  My heart ached for the family who suddenly mourned the loss of life, a family to which I felt instantly connected through organ donation.  Tears flowed as I typed and they have continued to flow throughout this first year following Jody’s transplant.

Sometimes the tears come when I’m driving alone and thinking of the donor family or thanking God for Jody’s gift of health.  Often they come when I’m watching Jody do something I know he couldn’t have done a year ago, like jumping off a diving board and swimming the entire length of a pool, or racing our girls in the yard, or even snow blowing our driveway in the freezing cold.  The other week I watched him play a Frisbee game with his friends, running back and forth, effortlessly and free of an oxygen tank, and again my eyes began to water.  I’m so very grateful and no amount of words can adequately express what I feel in my heart.

It is so hard for me to believe it has been one year since Jody’s surgery.  I remember it like it was yesterday and the entire experience has filled my thoughts so much this past year, sometimes more than I would have liked.  It was such a life altering experience, filled with highs and lows, non of which could be too quickly forgotten.  Jody, on the other hand, remembers very little details about his time in the hospital which is probably a blessing.  I’m glad he can’t remember how miserable he was with that breathing tube down his throat.  I’m glad he doesn’t know all the silly things he said and did while experiencing hallucinations as a side effect of his medication.  I’m so glad he can’t remember what it was like to have his oxygen sats drop to the 60’s and not be given oxygen because it would be “toxic” to his new lungs (just watching it was scary enough).  I’m glad he doesn’t remember when he felt like giving up.  But I remember.

When I look at photos of Jody’s transplant I can’t see the picture as you would, I have a memory and an emotion attached to it.  You might simply see a picture of Jody and I together in the hall, smiling.  I know, for instance, that the picture was taken after his return to the ICU when he could barely walk 50 feet (and had been walking two miles a day just a few days prior).  I know that I took that picture when he needed to stop for a break during that 50 foot walk.  The picture reminds me of how I felt when taking it.  My mind is full of memories and especially in the first few months following transplant, normal conversations were hard.  My husband had just had two vital organs removed and someone else’s organs put inside him, small talk just didn’t interest me.  It seemed everything around me reminded me of transplant in some weird way and so it invaded my thoughts often in those first few months after returning home.

Yesterday was just another day on this journey we call life, but it was a big, important day to me.  It was one year since Jody’s surgery and it held so much meaning.  He survived!  I survived!  We, as a family, survived!  I remember writing the blog post Two (months) Down, Ten (months) to Go, referring to the 12 months the doctors say it takes to recover from a double-lung transplant, and thinking how far away that sounded.  Jody was so weak and frail when he came home from the hospital.  He was down to 100 pounds and it seemed like even the slightest touch hurt him.  I couldn’t wait until I could hug him like normal again and not worry about hurting him or feeling every last one of his bones.  God is good and Jody has made it through those first 12 months!  In fact, not only is he living, he is thriving!  His lung function is better than it has ever been; yesterday he blew 105%!  He was also told yesterday that he can stop checking his blood sugar because he hasn’t been requiring insulin and his post-transplant diabetes seems to have resolved (since he is on a lower dose of prednisone).  His hemoglobin A1C, a measurement of the overall effectiveness of blood glucose control over a period of about three months, was 5.1 (the last time they checked it, it was 6.3 which was still higher than they wanted for him to be declared diabetic free).  I remember in the early post-op days, Jody’s transplant coordinator talked about post-transplant diabetes and that “sometimes” people can get rid of it (although she didn’t sound very hopeful that that would be the case with Jody).  I remember praying about it and have enjoyed watching his sugars improve with each tapering dose of his steroid.  How awesome it is for this to be gone and what a 1st breathday gift!  Hopkins will continue to check his level every six months, and we know it could come back, but for now we celebrate this small milestone and no more finger sticks for Jody.

This past year has been a year of physical healing for Jody and emotional healing for me.  I can honestly say there were times following transplant, particularly when I went back to work, where I felt like I was going to lose my mind.  I was pulled in so many different directions caring for everyone and everything.  I ran the house, cared for Jody, cared for our daughters, cared for my patients, and gave up many days off only to spend them at Johns Hopkins.  I was exhausted, physically and emotionally.  It was about that time I wrote this blog post.  The good news is I pushed through.  God strengthened me and slowly but surely Jody began to improve.  He could look after himself and soon he was helping with our girls and doing small things around the house, like the post I wrote about how significant it was to watch him take out the trash.

Today our lives are so different, not just from one year ago when Jody was recovering from surgery, but from two and three years ago when so much of our time revolved around illness and hospitalizations with Jody experiencing frequent lung infections resulting from his Cystic Fibrosis.  I cannot believe we have gone an entire year without ANY hospitalizations!!!  It’s so foreign to us but it’s good.  Real good.

I do not understand why God chooses to allow healing for some and not for others.  I know many CF wives who have lost husbands, some before transplant and some after transplant.  I don’t know how long God will allow Jody the health that he has right now but I praise Him for it.  I recognize that Jody’s complete healing can only come Him.  I also thank God for the healing He has begun in my heart and pray that He will help me to put my full trust in Him for my/our future, and not live a life of fear.

And we know that in all things God works for the good of those who love him, who have been called according to his purpose. Romans 8:28 NIV

This reflection of transplant has clearly been more my viewpoint than Jody’s (this is, after all, a blog about being a CF wife).  I don’t make light of all that Jody endured because I know he took a beating; I witnessed it first hand.  I remember so many times thinking to myself how strong and brave he is, and a true inspiration.  Even in his darkest moments he didn’t give up (and there were a few times I know he wanted to).  I’m so proud of Jody for the way he adheres to his post-transplant routine, full of medications, rehab (for the first six months), lab draws and self-monitoring.  It has been pure joy to watch him blossom over this past year.  I can’t imagine doing life with anyone but him.

As I draw this post to a close I have a few things to share with you.  First is a video* I made where you can see for yourself the difference Jody’s new lungs have made.  It’s a video of him doing his lung function tests before and after transplant.  Jody has a hard time watching this video because he says it was one of the few times he felt defeated (giving it his all and it not being good enough).  Before watching, take a deep breath and quickly blow out all your air… hold it for as long as you can.  Did you cough?  Did it make you short of breath?  Watch Jody’s before and after, to see the difference transplant has made in his life.

The second is a video* which you may have seen already since I posted it on our Jody Needs Lungs Facebook page yesterday.  This is a video which reflects upon Jody’s five weeks in the hospital and his first year of recovery.

Finally I’m sharing a few photos.

*If you are an email subscriber you may have to visit my actual website to watch the above videos.

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# Why I Stride 4 CF

9 Jun

It’s been nearly two months since my last post.  I owe you an update on Jody, and I plan to do that soon, but I’d like to use this post to tell you about the CF walk we participated in last month.  Each year the Cystic Fibrosis Foundation holds nearly 600 walks nationwide to raise funds for research and drug development for CF.  They term these walks “Great Strides” events.  One of the things I enjoy the most about this event is being in the presence of so many people who know and understand Cystic Fibrosis.  It seems like almost every day of my life I need to explain CF to someone, and while I’m happy to do so, and consider it a calling of sorts, it’s a relief to be in an environment where I don’t need to do that (even if for just one day).  It was fun to meet other CFer’s and CF caregivers, and to encourage them to press on in their fight against Cystic Fibrosis.

2015 Great StridesB

We walk for a cure for Cystic Fibrosis!

Jody and I would like to thank those of you who joined us for this walk; your support meant more than you know.  Likewise, we are appreciative to all the people who made a donation to our team and ultimately helped those living with CF.  Would you believe this one-day Lancaster Great Strides event raised over $172,600?!  Can you imagine how much is raised nationwide?  This is exciting for those of us that have been touched personally by the work of the CF Foundation and hope for a cure for the disease.

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Team Journey with Jody

 At the walk Jody and I were privileged to say a few brief words and share a portion of Jody’s journey with those in attendance. I am continuously amazed at the reach of Jody’s story and although it has not always been an easy road, I hope that we are able to use it to encourage others. At the walk I was also able to meet a few readers of this blog and it was fun to hear your stories (thank you for introducing yourselves to me). Overall it was a fun morning of hanging out with friends and family, raffles, photos, exercise, lunch, and most of all… supporting a cure for Cystic Fibrosis.

Below are a few snapshots of the event (click photos to enlarge and read/add comments):

FYI: Per the guidelines of the Cystic Fibrosis Foundation for outdoor events, people living with Cystic Fibrosis need to maintain a six-foot distance from one another to prevent the spread of bacteria and cross infections. In order to make those with CF easily identifiable at the walk, anyone who has the disease is given a green shirt like the one Jody is wearing and is asked to keep a healthy distance from anyone else with the same green shirt.

 # WeStride4Jody

(and others living with Cystic Fibrosis)

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.

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!

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.

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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