First Hopkins CF Clinic Visit

28 Feb

Today Jody had his first visit at the John’s Hopkins CF Clinic.  During this visit we met with one of the doctors, one of the nurses, the social worker, and the dietician.  I took my point and shoot camera along to snap a few pictures (isn’t a blog post always better with pictures?), unfortunately though, the battery was dead (note to self, check the battery before leaving the house next time).

Overall, Jody had a good visit today.  His lung function is currently 32%, which is where he has been hanging since his infections last year.  Imagine, if you or I lost 70% of our lung function we would think we were dying.  For Jody, this decline has been so slow and gradual through the years that his body has adjusted, and for the most part, this decrease has gone unnoticed… until last year that is.   This past fall was the first time we began to see symptoms of his declining lungs, but we are now beginning to see small improvements.

One thing the doctor today recommended is “pulmonary rehabilitation.”  In plain English, supervised exercise, three times a week for 12 weeks.  During the exercise session Jody’s heart and oxygen level can be closely monitored.  The goal of this therapy is to start slowly, and gradually increase his exercise tolerance as his lung function (hopefully) increases.  We’re not expecting to see a huge jump in function, but small increases in lung function can mean big increases in tolerance of day-to-day activities.  Since we won’t be driving to Baltimore three days a week for this therapy we are hoping to get it set up here in Lancaster.  Please pray that this can be done without too much hassle.

We go back to Hopkins in three months, and during that visit Jody will have a full body Dexa scan done.  This is a test that measures bone density, and is recommended for CF patients because of an increased risk for osteoporosis.  In the meantime he will have a slew of labs drawn and we will work on setting up his pulmonary rehab.  It was nice to meet some of the members of our new CF team today.  We hope our relationship with them will be just as personal as it was with our previous team.

Dream Vacation

16 Feb

Incredible!  That is the one word I would use to describe our “us” (no kids) vacation to Riviera Maya, Mexico.  From the time we pulled out of our drive way until we arrived home seven days later, everything was smooth sailing.  We flew through all the airport check-points and customs without them batting an eye at Jody’s medical supplies.  Thankfully, everything arrived with us safely intact (unlike our honeymoon when his nebulizer broke from rough handling by the airport).  The majority of our time this week was spent as lazy beach bums.  I thought I’d share a little of our vacation with you through a few pictures (click on the photo to enlarge it).

Our room

Our awesome roof top balcony, complete with jacuzzi tub.  We enjoyed sitting in this at night while gazing at the stars.

Below is one of my favorite pictures from the week (I love the lighting and the reflection).  This is a restaurant on the resort overlooking one of the pools.

So happy to be doing what I love with the love of my life.

Dining at the Mexican restaurant (our favorite of all the ones we tried).

Playing Skip-Bo while Jody did his nebulizer treatments.

We attempted pictures on the beach with our tripod, but clearly the wind had another idea.

Flying home

Those are a few of the 500+ photos from our trip.  What a great week we had!  While the rest, relaxation, and quality time were incredibly fantastic, I think my favorite part of the trip was that for one week we were able to forget about Cystic Fibrosis.  We forgot about the stress and sickness of this past year, and that which may come in our future, and we lived in the present.  It was good great for the soul!  Sickness or not, I highly recommend a trip like this, away from the craziness of life, to relax, refresh, rekindle and recharge; it’s an investment you’ll never regret.

Life Philosophy

5 Feb

In 2012, Jody spent a total of 26 days in the hospital, and completed roughly eight weeks of IV antibiotics (spread throughout the year).  Since then, he and I have developed a new-found appreciation for life. We want to make the most of our “healthy” time together.  Understanding the nature of Cystic Fibrosis, we know that one day Jody will need oxygen to help him breathe, and even the slightest physical activity will become a challenge for him.  Until that day comes, we want to live to the fullest!

This philosophy is what prompted us to book a trip for just us (no kids) to an all-inclusive resort in Riviera Maya, Mexico, and we leave tomorrow! We will be staying at the Grand Bahia Principe Sian Ka’an, and Lord willing, we will enjoy seven days of sun & sand, rest & relaxation, sleeping in, no schedules, no responsibilities, and most importantly, quality time (so often neglected in the craziness of life).  How wonderful does that sound?!

Since Jody can’t take a vacation from Cystic Fibrosis, we’ll be packing our suitcase with his nebulizer and the medications that go along with it (on ice), digestive enzymes, vitamins and oral antibiotics, weight gaining shakes, and a letter from his doctor explaining the need for all of this equipment/medication.  Could something go wrong in Mexico?  Of course… but it’s worth the risk!  Staying home and living a life of fear is not really living at all.  So off we go, spending time together and creating new memories which CF will never be able to take from us.  Praying God would surround us with His protective arms, bless our time together, and watch over our little girls while we are apart.  Stay tuned for a post vacation update with pictures.

Happy Birthday

31 Jan

All birthdays are special, however, birthdays for those with Cystic Fibrosis warrant an extra special celebration!  Why you ask?  Despite the incredibly advanced world we live in, the average life expectancy for a person living with CF in the U.S. is a lousy 38 years.  Although far too low (in my personal opinion), this number has risen significantly through the years.  In 1955 children diagnosed with CF were not expected to live long enough to attend grade school*.  Diagnosed in 1972, my husband’s family was told he would probably never live to graduate high school, but he did!  And he keeps on living, fighting, and defying those ugly odds.

Today Jody turns 41 which means a celebration is in order!  Last year I threw a big 40th birthday “Minute to Win It” game show themed party (see picture).  This year won’t be quite so extravagant, but we’ll celebrate nonetheless.

Happy Birthday Jody!  You are a fighter, and I appreciate everything you do each and every day to keep yourself healthy; the countless pills, nebulizer treatments, chest percussion (when I remind you), weight gaining shakes, and sometimes even the cumbersome IV’s.  I hope your efforts are rewarded with many more birthday’s to come!

* Life Expectancy in CF 

Kidney Stones

25 Jan

Today it isn’t Jody’s lungs giving us problems, it’s his kidneys.   Jody has an extensive history of kidney stones, so this is familiar to us.  Recently, during our consultation at John’s Hopkins we learned that people with Cystic Fibrosis are at an increased risk for developing kidney stones related to the malabsorption of calcium.  That, combined with a family history of stones, and a diet conducive to stone formation significantly increases Jody’s risk.

During Jody’s last hospitalization in October a CT scan showed he had a few kidney stones.  Since he was asymptomatic and in the hospital for a CF related infection, and in acute renal failure, nothing was done (which was okay).   We had an appointment with a urologist the last week of November, and I clearly remember him saying, “We’ll see you in a year.”  Knowing full well that Jody has never passed a kidney stone and has always needed surgery, I had my doubts that it would be a year until we saw him again.

Fast forward two months.  Today Jody woke up in severe, walking-doubled-over pain, obviously related to his kidney stones (he has learned the classic signs).  He had another CT scan and met with the same urologist we saw back in November.  The plan is narcotics for pain control over the weekend, and medication that could help him pass the stone on his own.  If not, he is scheduled for surgery on Monday morning.  Obviously we would prefer the least invasive route, but given his history we are prepared for surgery.  Please pray that either way the stone would be safely removed, and especially for comfort for Jody until that time.

Meet Jody

8 Jan

This is Jody, my easy-going, problem-solving, hard-working husband.  He is the reason for this blog.  That said, let me introduce you to him, or rather, let him introduce himself through some fun Q & A.

What makes you unique?

I have Cystic Fibrosis

What is important to you in life?

Family & my relationship with God

What do you do for fun?

Woodworking & remodel my 1930’s home.

What’s your favorite indoor/outdoor activity?

Volleyball

If you could choose to stay a certain age forever, what age would it be?

40; it’s in between

What is one quality you admire most in others?

Loyalty & love for the Lord.

What bad habit would you be willing to give up if it guaranteed you would live to be 100?

Biting my nails

What is your favorite thing to eat?

Mexican

If you had to evacuate your house immediately, what is the one thing you would grab on the way out?

How much time do I have?

If you could have a luncheon with any three people (real or fictitious/from any time period/dead or alive), which three people would you choose?

1.  Jesus

2.  Noah – I want to know how he built the ark

3.  Harrison Ford

What did you do growing up that got you into trouble?

I played a practical joke that resulted in 10 days of in-school suspension.

What is your biggest fear or worry?

Leaving my family.

What would people be surprised to know about you?

That I’m 40 (people always think I’m 30).

Well there you have it, Jody in a nutshell.  I think he’s a pretty awesome guy, and feel blessed to be sharing my life with him, Cystic Fibrosis and all.

New Year, New Clinic

1 Jan

As the new year begins we have some exciting news we’d like to share.  Jody has been accepted into the Cystic Fibrosis Center at Johns Hopkins in Baltimore, MD!  What does this mean?  It means that all of Jody’s CF care (routine check-ups, as well as hospitalizations), will be done through Johns Hopkins.  This was by no means a simple task, and it took much determination and persistence to make happen.  You may be wondering why this is so exciting to us, let me explain.

Jody has been a patient of his current CF clinic for seven years.  While we have developed a great relationship with his outpatient CF team, we have been less than impressed by his inpatient care (when he is hospitalized with a CF exacerbation).  In general, this clinic tends to be a little more laid back in their care, and we desire a clinic that is a bit more aggressive.  CF patients (and their families) really get to know the staff at their clinics so this is the hardest part about transferring Jody’s care. For example, when Jody calls his CF nurse he doesn’t need to say whose calling, she knows his voice.  We have received birthday phone calls, cards, and his nurse even crocheted a blanket for our youngest daughter when she was born.  Needless to say, this move is bittersweet as the staff of this clinic will be dearly missed.

So why Johns Hopkins (JH)?  It doesn’t make sense, right?  We’re giving up a 30 minute drive to his current clinic for a 90 minute drive to his new one.  Here’s why:

  • The pulmonary team at JH is ranked #4 in the nation for pulmonary care (and they’re only 90 minutes away from us; we do recognize though that this will be hard when Jody is hospitalized).
  • The average lung function of CF patients at JH is better than that of the three other clinics  in the surrounding areas.  Could this be the result of better care?
  • JH performs lung transplants so it will be easier to start that process when the time comes.
  • JH came highly recommended to us by a colleague of mine whose husband underwent a lung transplant there.  This colleague played a crucial role in getting us accepted into the clinic (M.T. if you are reading this, THANK YOU so much, we couldn’t have done it without you).

We feel so grateful for this opportunity.  Over three months ago I made my first phone call to the Johns Hopkins CF Center and was told that because we have a CF clinic closer to us geographically, they couldn’t accept Jody as a patient.  The lady explained that they treat over 400 CF patients, and that they just didn’t have room for more (despite the many phone calls they get from people trying to get into their clinic).  If you are interested in hearing the rest of the story, and how we actually got Jody in, I’d be happy to share (but feel I need to end this here since it’s getting rather lengthy).

If you think of it, pray for us as we make this transition, and begin building those relationships with the center team members.  We are hoping this change brings only positive results!

Here’s to a happy, healthy, new year!

Hello World!

16 Dec

Hello friends, family, and those unknown to me who stumble upon this blog!  I am new to the blogging world and this is my very first post so bear with me as I strive to figure out how it all works.  The primary use of this blog will be to keep you updated on the health of my husband of 7.5 years, who lives with Cystic Fibrosis (CF), a chronic lung disease.  In future posts I will introduce you to Jody (my husband), give you an overview of life with CF, and will bring you up to date on Jody’s current health.

Thanks for checking out my blog.  I would love to hear from you so please feel free to leave comments (especially words of encouragement when times are tough).  Lastly, if you want to receive automatic updates, please subscribe via email or RSS feeds.  Stay tuned… I’m looking forward to sharing our CF life with you!

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