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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)

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Five Dreaded Words

16 Aug

“I think I’m getting sick.”  Those are some of the most dreaded words for a CF wife to hear.  There is a lot of physical, emotional, and financial stress behind those five words (physical, as in coordinating childcare, getting things done at home, rotating between home, hospital, and work, etc.).  When Jody speaks those words I’m usually not surprised and often it’s something I’ve wondered about myself.  It takes a conscious choice however, to move from denial of another infection to accepting the inevitable, and seeking treatment. This begins by making a dreaded phone call to Jody’s CF team, alerting them to his symptoms and our suspicion of another infection.  Such was the case this week.  We enjoyed the entire month of July free of infections and hospitalization, for which we are oh so thankful!  Suspecting our infection-free period was coming to an end, Jody made that dreaded phone call this Tuesday and was seen in the CF clinic on Thursday.

As a result of Jody’s complicated (antibiotic) allergies with anaphylactic reactions, we have been told in the past that he is no longer allowed to start IV antibiotics from home.  Instead, his team feels he needs to be monitored closely, in a hospital setting, to ensure his safety when initiating these powerful drugs.  Because of this, we left for our Hopkins appointment on Thursday with our bags packed, prepared to stay, but hoping to return home.  And that’s just what we did!  Surprisingly enough, Jody’s doctors decided to put him on the same antibiotic regimen they used in June (Zyvox, Zosyn, & Colistimethate), and felt he could begin them from home since they were well tolerated before.

Jody's "Luggage" (O2 tank and a continuous IV pump).

Jody’s “Luggage” (O2 tank and a continuous IV pump).

Yesterday morning all of his supplies were delivered.  I inserted and dressed the needle in his chest (he has an implanted port for medication administration), and with the Epi pen nearby, he began all of his antibiotics, thankfully without any difficulties or reactions.  For the next two weeks (at least), Jody will have some extra “luggage” to carry around, as he puts it, referring to a continuous IV pump used for one of the three above drugs.

Jody's continuous IV pump

Jody’s continuous IV pump

The advantage to this pump is that he doesn’t need to wake up early and during the middle of the night to give himself his medications since it will do it automatically while he sleeps.

We’re really glad Jody was able to avoid another hospitalization.  I work 24 hours this weekend and it gives me much peace of mind to know that he will be at home, relaxing, instead of in the hospital where I would be missing out on his care and physician visits.  Still I wish I could be home with him this weekend but such is the life of a CF wife.

Completely off the subject, the wait for transplant continues.  August 25th will mark five months of being active on the list.  After getting the first call for his new lungs only a month after being listed (which turned into dry run 1 of 2) we naturally assumed transplant would happen sooner rather than later.  Honestly, for a variety of reasons, we truly believed it would happen in June or July.  Our oldest daughter turns six August 24th, and will begin kindergarten the next day (8/25), so we are now hoping that transplant will at least hold off for this, especially since she has a lot of anxiety about starting school.  It’s hard to think that because transplant hasn’t happened yet we will miss out on a lot of her kindergarten experience when the time does come, and it also poses a lot more work for our parents, who do not live in our school district, and will need to transport her to and from school everyday.  Our youngest also starts preschool in the beginning of September so she will need to be transported back and forth as well.  This is one of the reasons we hoped transplant had happened already.  On the flip side, we understand that in order for Jody to get his new lungs it means the loss of another life, and that’s not something we want to rush, especially just to make our schedule more convenient.  Schedule aside, Jody is ready for his transplant.  He’s tired of the hassles of Cystic Fibrosis, the struggle to breathe, the inability to do the things he enjoys, and of the need for continuous oxygen.  While we may not understand it, we trust that God’s timing is better than ours, and hold firm to the belief that Jody will get his new lungs in God’s most perfect time.  Until then, please continue to keep him, and our family in your prayers.

 

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The Calm Before the Storm

11 May

Lately I’ve been posting blog updates roughly once a week, but thankfully this week I don’t have much to report.  Jody is stable and infection-free right now, and it’s wonderful!  I hesitate to say that aloud because in times past, as soon as I’ve told someone that he’s doing well, it changes, and an infection hits.  When things are well and good (as well as they can be with 25-30% lung function), it makes me dread the sickness that will inevitably come.  Even the lung transplant and recovery is something I’m not especially looking forward to.  I know that it will include months of high-stress, juggling caregiving, parenting, working, and keeping house.  I know that during that time I will desire to be exclusively at Jody’s bedside, to go to appointments with him, to help him recovery and simply to be there for him however he needs me.  But those other responsibilities will call and I won’t be able to be there 100% the way that I would like.  While Jody knows and understands this, it’s hard for me to accept.  As you can imagine, knowing this stress is just a phone call away, I’m super thankful for the calm before the storm.

Dr. Shah (Jody’s transplant surgeon)

Since I don’t have too much to report this week, I’d like to share with you a short video where Jody’s transplant surgeon, Dr. Shah, talks briefly about the lung transplant process at Hopkins.  This is the surgeon I talked about last week who offered to pay for our gas and dinner because he felt badly that our crazy, stressful drive for transplant ended up being a dry run.  This is also the man who will hold Jody’s warn, hard-working, failing lungs in his hands, and replace them with those which will bring life again.  I couldn’t be more thankful to him and the rest of Jody’s CF and transplant teams.  Please watch this video to learn more about Jody’s upcoming transplant.

 

One more thing, we could use your prayers for extra special protection over Jody’s health.  One of our daughters has come down with a cold and as history would have it, Jody inevitably ends up with an infection, leading to a hospitalization when this happens.  It goes without saying that we prefer to keep him home and well.  So please join us in praying that this cold goes away quickly and without spreading to the rest of our family.  Thank you in advance.

Officially Listed!

28 Mar

It’s been a little over two weeks since my last post and I can now share with you that Jody has officially been made active on the national transplant list through UNOS.  His actual list date was March 25th.  In my last post I told you how we were having a hard time making this decision, and that Jody’s doctors were not in complete agreement with which way to go either.  Recently we learned why this has been a hard decision even for Jody’s team of physicians: he doesn’t fit the picture of a “typical” CF patient listing for transplant.

When most adults with CF (80%) are listed, it’s because they are using oxygen 100% of the time, and are losing weight (which is super important for those with CF to be able to fight off infections).  I’ve never talked about CF and weight before, so you may not know that many people with CF do not have any digestive enzymes so their body does not naturally absorb all the fat and nutrients from the food they eat.  While they take digestive enzyme pills to help with this problem, they are not quite as effective.  For this reason, almost anyone you meet with Cystic Fibrosis will be quite thin, despite a high fat diet.  Jody for instance, drinks 1600 calorie shakes every day to help him gain weight, and can eat as much fat in his diet as he wants (if you’re thinking to yourself, ‘must be nice,’ think again, you wouldn’t want the rest of what he has to deal with).  In general, people with CF have to work really hard to maintain their weight so when weight begins to fall, this is problematic.  Jody does not fall into either one of the categories above: he’s maintaining his weight, and while he wears oxygen most of the time, he can also go without it if he is sitting down and not doing anything.

One of the driving forces behind the decision to list Jody now is the frequency of which he needs IV antibiotics to fight off infections and keep him well.  He used to bounce back after these IV’s, meaning his shortness of breath would go away, his lung function would improve, and he would return to his normal, active self.  In the past six months or so, this hasn’t been the case.  Jody’s lungs are worn and tired, and they don’t have much bounce-back left.  It is important to replace them now, while he is well enough to withstand such an intense surgery/recovery.  The doctors know that in Jody’s current state it wouldn’t take much (even just getting the flu) for him to go downhill fast, and be too sick for transplant.  And so, Jody’s CF and transplant doctors, are finally in complete agreement with the decision to make him active on the list, and this is what we were waiting for.

You might have some questions about what happens next, but I think I’ll save that for my next blog post (because this one would become too long, and you’d probably lose interest).  We’ll pick up where I left off soon but for now, I’ll leave you with a really good five-minute animated video that helps to explain organ donation and transplantation at a basic level, it’s worth watching.

 

To List or Not To List

12 Mar

Jody and I are facing what is proving to be one of the most difficult decision we’ve had to make thus far in our married life, which is whether or not to make him “active” on the transplant list.  If you’ve been following Jody’s journey you know that Jody needs a double lung transplant, this is indisputable!  But if you’ve been following my blog you also know that lung transplants are by no means a guarantee for a long-lasting life, in fact, statistics prove it’s quite the opposite.  Balancing the need for new lungs to live a quality life, verses a life cut short by lungs transplanted too soon is delicate.

We were first approached with the idea of transplant for Jody back in September (2013).  You might remember this emotional post.  After undergoing extensive transplant testing, Jody was seen for the first time in the transplant clinic in December (2013) where he was kindly told that despite having 30% lung function, and requiring Oxygen to breathe, he was too “healthy” for transplant at that time.  Again the doctor pointed out those scary statistics; that transplanted lungs only last an average of five years and only 50% of patients even live five years post transplant.

Since that time Jody has been followed closely by both the Cystic Fibrosis and transplant clinics.  It seems at every appointment those statistics are repeated to us over and over (as if, even after hearing them spoken only once, we could ever forget them).  Most recently we were told that 20% of patients don’t live through the first year post lung transplant.  This may sound like a low number if it’s the chance of snow being predicted, but it sounds like a high number when it’s referring to someones life (especially someone you love).  It really is hard to stay positive and hold onto hope for what sounds so hopeless (and with medical “proof” to justify the hopelessness).  Yet I understand the doctors need us to comprehend the seriousness of all this and to be able to make an informed decision, and I appreciate their honesty.

Jody and I feel as if we are on an emotional roller coaster.  First, we struggled to accept the need for transplant, and when we finally did, we were told it was best to wait.  Then we were forced to accept this less-than-ideal quality of life, so different from the life we’ve always known.  In addition, we’ve been approached with conflicting opinions from Jody’s doctors, all of whom we trust and respect.

Last week, when Jody was in the hospital the CF doctor (who also works on the transplant side of things), again suggested we hold off on activating Jody on the list, arguing that he didn’t want to start “the clock” prematurely, but acknowledging that Jody’s quality of life is not ideal.  However, he also mentioned that two of his colleagues (CF doctors as well) disagreed with him, believing that now was/is the time to list.  Ultimately, we agreed to wait, hoping to buy more time before the transplant becomes absolutely necessary.

Yesterday Jody had a post hospitalization follow-up appointment in the CF clinic.  The majority of the time at this appointment was dedicated to the question of whether or not to make Jody active on the list (we weren’t anticipating this being the focus of the visit).  The physician essentially told us that the team is in agreement that now is the time.  Yet it was a just a week ago that we were told the opposite (and it doesn’t seem like much has changed between then and now).  So how do we know when it really is “the time?”  According to the doctor today, it’s when living as you’ve been living is no longer worth it.  When ones quality of life has become basically, unlivable.  Naturally when talking about my husband and the father of my young children I want to jump up and scream, “What are you talking about?  How can life ever be ‘unlivable’ when you’ve got kids who desperately need a Daddy?”  Instead I sit there quietly and calmly, with a few tears in my eyes, because I know that I’m not the one living the unlivable life: Jody is!  My love for him needs to be greater than my fear of losing him.  Only Jody can know when he’s had enough; when the only option left for him is transplant, potentially shortened life and all.  It is true that transplanted lungs could give Jody a new lease on life, but in making this decision we need to be prepared for the worst and hope for the best.

And so, as I mentioned in the beginning, it seems we are facing one of the toughest decisions of our married life.  It feels like an end-of-life decision I’d rather not contemplate (unless maybe Jody were 85 years old and had lived a long, enjoyable life).  I fear making the wrong decision.  What happens if we choose to wait and Jody becomes critically ill, making it more difficult for him to recover from this major surgery?  What happens if we choose to list and he doesn’t survive the surgery or first year?  It’s a gamble and right now we have no answers.

We could use your prayers that God would guide us in this decision, and make His will clearly known.  We also pray that God would bring the doctors to complete agreement with one another.  Finally, pray for peace when the decision is made.  I know the enemy wants nothing more than to confuse us and to take away the fragile hope to which we cling.  We are under no pressure to make a quick decision and as always will fill you in when we do.  Until then, breathe easy, and appreciate those hard-working lungs of yours!

My Story of Hope

9 Jan

Photo by Collecting Wonder

In this post I’m going to share a story with you that I have shared with few people.  It begins a little over a year ago, in October of 2012.  This was the time when Jody initially began to experience shortness of breath and frequent hospitalizations.  It was the first time our lives were being seriously impacted by Cystic Fibrosis and I was having a hard time dealing with it.  I felt, in one word, hopeless.  It was hard to stay positive about a progressive disease with no cure.  Every major coughing spell (which happens a lot for someone with CF), was a reminder, a smack in the face, that we couldn’t get away from this disease.  I missed (and still do), being able to do the things we’d always done.  I believed the lousy statistics about Cystic Fibrosis and lung transplants.  I began to dwell on the negatives, fearing the worst for our future.  It was a hopeless feeling.  And so I began to pray that God would restore my hope, but I wasn’t prepared for the way that He would do it.

There have been few times in my life when I can say with confidence that God spoke something to me, this was not one of those times.  This time, God’s message to me was loud and clear.  It came in the form of random daily encounters, always with the message of hope.  I wish I had written these things down because I don’t remember all of them, but I’ll share with you some of the ones I do (in no particular order).

  • One day I was driving by myself in the car and was passed by an 18-wheeler with the word “Hope” written in big bold letters on the side of his trailer.
  • Another time I turned on the radio in the car only to hear the words, “… and here are your words of Hope for the day…”
  • One morning I was sorting through a box of childhood things my Mom had given me and found, at the very bottom, a daily inspirational flip book titled, “Words of Comfort & Hope” (I don’t recall having this as a child, nor do I know why I would have ever needed it).

    Yard sale mug & childhood item

  • I love to drink my coffee/tea in a big mug.  This summer I was browsing at a yard sale and glanced at some mugs a lady was selling (I love to yard sale shop, but have never looked at mugs before, I just don’t need any more).  Oddly enough, I could see that of the batch she was selling there was one big mug in the group.  I walked over, picked it up and had to chuckle when I read what was written on it, “Bee (actually a picture of a bee) hopeful, believe in miracles.”  It was probably the best 0.25 cents I’ve ever spent and has become my favorite mug, and a daily reminder.
  • One day I received a thoughtful message from a relative letting me know that she is praying for me for hope.
  • Another day I walked into a patients room at work.  Her bedside table was covered in books.  I asked if she likes to read (an obvious question I know).  Her response, having never met me before, was, “Yes, and I have a book for you.  It’s called “Hope Beyond Reason.”  She went on to explain that it was a book about a pastor who had cancer and wasn’t expected to live, but did.  She didn’t know my story.  One of these days I’ll get around to actually taking her advice and ordering the book.

There were more encounters like this, they happened often, and I couldn’t get away from them.  I knew God was trying to tell me something, and even though I had prayed for hope, I still rejected it.  As God spoke to me, I spoke back, pointing out those ugly statistics and grieving for others close to me who had lost loved ones far too soon.  But the messages continued until one day, after yet another sign, I surrendered the fight.  I remember literally saying aloud, “Okay, God, I get it!”  And you know what happened?  The messages/encounters instantly stopped.  After a month or two of signs from God and resisting His message, He knew I had finally gotten it and accepted it.

Receiving God’s message in my life was actually the easy part.  Living it out was, and still is, the hard part.  Jody will continue to get sick, sicker than I’ve ever seen him.  Both my responsibilities and stress level will increase.  People with CF are still dying (just this past week another CF wife lost her husband).  Despite all of this, God is calling me to choose hope.  And so, I hope that the progression of Jody’s disease will be mild and that we’ll be able to accept and adjust to each new stage.  I hope that his transplant will come at the most perfect time, before he’s too sick, making recovery extra difficult.  I hope (and this is the hard one for me), that his transplant will be a success and that he will live far beyond the time that statistics say he should.

My reminder to choose hope

Am I scared to death of the “What if’s?” Absolutely.  There are many impacts of Jody’s disease that I fear.  Obviously I know that having hope doesn’t mean that everything is going to turn out the way that I want it to, it could be the exact opposite.  Regardless, I am working to turn my fear into hope.  I am choosing to believe that having hope in my life means that no matter what happens God is not going to leave me hanging.  As a reminder of all of this, I bought myself a “hope” necklace.  One charm is purple, the color which represents Cystic Fibrosis, and the other two charms create the phrase, “I will hope.”  When I put this necklace on, or when I look at it in the mirror, I am reminded to choose hope.  This is a work in progress for me, but it sure beats the alternative, which is hopelessness.

The Dreaded Clock

14 Dec

I’ve been putting off writing this post.  Sometimes it’s nice to push things out of my mind and pretend all is well, that Cystic Fibrosis doesn’t exist in our lives.  But it does!  And so, if I must be brought back to reality, writing is a positive way for me to reflect on and process everything happening in my family.  I have enjoyed blogging and Monday (Dec. 16th) marks one year that I have been doing it.  Thank you for reading and following along on our journey, especially to those of you who have done so from the beginning.  Thank you also to those who consistently leave comments, it helps me to know that you are reading, and do care (that I’m not doing it in vain).  I hope that over the past year you have learned something about Cystic Fibrosis and what it is like to live with this invisible, incurable disease.

Now for an update on where things stand with Jody and his need for a lung transplant.  Transplant testing should be done by the end of the month.  It has been so time-consuming, taking what feels like almost all of my days off work, and we are looking forward to more free time once this is officially completed.  As these head-to-toe test results come back, I continue to be amazed at the way that Cystic Fibrosis effects all systems of the body.  Having said that, Jody’s tests have come back pretty “normal,” at least for a person living with CF (maybe not quite normal for you or I), and we are thankful for that.

This week we had our first visit in the lung transplant clinic.  Jody will now be seen routinely in both the CF and transplant clinics.  One of the doctors in the transplant clinic, we’ll call him Dr. M,  also happens to be a CF doctor (who we know and trust), and our appointment was with him.  At this visit he looked at Jody’s overall health: His lung function is stable at 30%, he is using oxygen intermittently, and he’s holding his weight.  It was Dr. M’s suggestion that we continue with the transplant process, because Jody DOES need new lungs, but that we wait to make him “active” on the list until a further time.  His words were, “We don’t want to start the clock before it’s too soon.”  That dreaded clock… I know all about that clock!  This is the clock that counts down the days of your life after a lung transplant, statistically speaking.  This is the clock that has been haunting me, day and night, since the doctors recommended starting the transplant process.

That day back in September when Jody’s doctor had the transplant talk with us I remember feeling caught by surprise.  I didn’t think Jody seemed sick enough to be discussing transplant, especially when I compared him to other CFer’s I know who are waiting for lungs.  But I trusted the opinions of the doctors and understood their concern that Jody was not improving from the lung infection he was fighting, and in fact, he was getting slightly worse.  Since that day I have struggled to view this transplant as something positive.  To me it feels more like the beginning of the end for us, as that clock ticks in my ear.  Being 32 years old, with five and three-year old daughters who need their Daddy, I’m not ready for the beginning of the end.

Going back to our appointment in the transplant clinic.  When Dr. M recommended waiting to make Jody active on the transplant list, we didn’t know whether to be happy or sad.  The quality of life we have as a family is not what we are used to and what we once had.  We can’t enjoy day trips together anymore, Jody can’t play with us out in the snow, and I have picked up more responsibilities around the house, as things have become harder for Jody, just to name a few.  We had finally accepted the need for a transplant, and were trying to comfort ourselves with the hope that this could indeed give us our lives back (despite how long it lasts).  Now, instead, we are going to wait for Jody to progressively get worse, worse than he already is.  While other wives are waiting for their spouses to get a haircut, or a promotion, I’m waiting for mine to start losing weight and the ability to breathe.  I get to look forward to watching him get worse before he can hopefully get better.  Dread is becoming an all-too familiar feeling.  On the other hand, I don’t want to prematurely start that clock on Jody’s life so I understand the decision to wait until it is absolutely necessary.  Neither side of the pendulum is ideal.  Jody will be monitored closely by the transplant team, and since testing is all but done, his status can very easily be changed from inactive to active on the transplant list when the time is right, however soon or far away that is.

Thank you again for reading my blog over this past year.  Please join us in praying that God would reveal the most perfect time for Jody to be listed for his new lungs, and for us as we emotionally prepare for this and whatever our future holds.

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”

Jeremiah 29:11

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