Showing posts with label Cystic Fibrosis. Show all posts
Showing posts with label Cystic Fibrosis. Show all posts

Wednesday, July 20, 2016

A Boy, A Girl, And A Life With Cystic Fibrosis

This post was sponsored by Walgreens Cystic Fibrosis Services as part of an Influencer Activation for Influence Central. I received compensation as a thank you for my post.

It was a beautiful summer night.  Two weeks before, I had just began to date a young police officer that I had been introduced to at a local restaurant where I was working for the summer.  We both worked night shifts and usually met up after work to play tennis, basketball or soccer as we were getting to know each other.  I'm sure you've heard about the nearly 24 hours of daylight in an Alaskan summer.  It helps young people to have no good sense about being loud outside in the middle of the night.  My belated apologies to the neighbors!!

This night felt different.  As my cousin was dropping me off to his house after work, I told her that I knew I was in love with him, and that I might tell him.  She said it wasn't possible, that it had only been two weeks and I should wait to say anything.  But this was different and I knew it.  I knew that I was in hook, line and sinker and there was no turning back.  I was young and I was in love!  Surely there's a song about that, right?

 As we were talking, he said I have something to tell you.  Imagine my butterflies when I said "I have something to tell you, too".  It was so exciting!!!!


Until he said "I have a terminal illness and I thought I should tell you"  Umm, excuse me???  What?  My stomach felt like a horse had kicked me in the gut.  It physically hurt as I tried to understand what he was telling me.  It was such a shock that I couldn't process it.  I asked what he meant.  And he said "I have Cystic Fibrosis."

It was the first time I'd heard those words and I didn't know what they meant.  Many times, the diagnosis of CF is the first time a person and their family have heard of it.  Cystic Fibrosis is a complex disease which mainly focuses on the lungs and digestive system.  It is caused by gene mutations and is something that the patient has their entire life.  It must be managed every day.  With CF, there is no such thing as a common cold.  Such a simple virus to others can cause a very serious pneumonia or worse.  My boyfriend was just 26 when I met him and a few years before, he was told that he wouldn't live to see 30.

I had to make a choice.  Would I choose to live with CF in my life or would I choose to live without it.  I already told you that I was head over heels for him, so I took the path of living with Cystic Fibrosis.  I knew immediately that I wanted to spend any time he had with him rather than miss it all together.

Thanks to research and progress in medicines, he has already doubled the life sentance he was given as a young adult.  He was told that CF was a terminal childhood illness and through the years of our marriage, we have seen incredible genetic discoveries and the great progression of medicines and therapies to treat the condition.

Here he is at 60.  How is he still not grey?


CF is still very serious and a strict adherence to the medications to treat various aspects of it is mandatory, and sometimes can be overwhelming.  We've had hospital stays, IV at home treatments, physical therapies...you name it, he's gone through it.  I help him to remember to take the medications and I nag encourage him to do the therapies.  If you are a care giver to a CF patient, remember that the end result is worth any arguing they might do about doing any of their therapies.  I have a hard headed husband but I want him to stay alive so I help to get his medicines and therapies arranged.

He has a medication that he takes for 28 days and then takes a 28 day break and starts again.  Sometimes it has been difficult to remember when to start.  I'm extremely thankful for the Walgreens CF Champions, Navigating the Journey together program.    20 years ago, we had a difficult time obtaining his medicine.  It's called Tobramiacine or Tobi and we've been through insurance denials and inability to physically be able to purchase anywhere when we were in Alaska.

The Walgreens program is fantastic.  Every month at just the right time, they call to ask if we're ready for the next delivery of the medicine.  They tell us what day and what time it will arrive.  They are never late, always on time.  We know when to make sure we're home to sign for the delivery.  The medicine comes in a styrefoam cooler with cold packs ensuring it stays cold and dark until use.  It's very important that he has it on time and Walgreens pharmacy CF program makes it happen.  It helps relieve some of the stress of counting out the 28 days and being afraid I might miscount.

Even though he lives with Cystic Fibrosis, my husband is a determined man.  He wanted to be a police officer when he was young and he determined to do so even though he had recently been told his life would be short.  He was determined to survive when he was shot as a young officer.  He was determined to be a SWAT cop and solve difficult homicide cases.

My husband was determined to experience all the other areas of the department.   He was determined to make our department a better place.   He was determined to improve his abilities and rose to the rank of Deputy Chief over a department of about 500 people.  He was always known as a hard working, determined officer.  Here he is as a Captain of Patrol.


Even with CF, he has been determined to survive and take care of our family.  He worked almost 40 years as a cop and is now taking on the next task of retirement.  If you have CF, I want you to know that you can still make your dreams come true.  You can accomplish the things you want to, you just have to be determined.  Be determined to adhere to the modalities your doctor has prescribed and then just go for it.  If you are the parent of a child with CF, just know that my husband is proof that your child can do anything.  If you are the spouse of a CF patient, then high five, cuz you know my journey.

Last picture.....this is a picture of him being honored for the shooting when he was young and his determination to survive along side of a picture from the summer we met and started dating.  *butterflies*


That's my superhero.  A superhero living with Cystic Fibrosis.

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