My CF Story

On October 20, 1980, I was born into a very loving family. When I was 3 days old, I had surgery to fix a bowel obstruction (meconium ileus) and my parents found out their first born had something called cystic fibrosis. They didn’t know too much about cystic fibrosis but they knew it was serious. The doctors explained that cystic fibrosis is a genetic disease that causes abnormally thick and sticky mucus that clogs the lungs and obstructs the pancreas. Back then, there weren’t a lot of treatment options for CF patients. My parents were told to give me enzymes with anything I ate (as a baby, sprinkled in applesauce) to help me digest my food and they learned how to do daily manual chest physical therapy to help loosen any phlegm in my lungs. My parents were told that I probably wouldn’t live to see my adult years. I can’t even imagine how difficult and overwhelming this all must have been for my parents to hear.

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Well, God made a perfect match when he chose Ted and Diane Cushing to be my parents. They heard the devastating news the doctors told them but they also believed God had a great plan for my life. They chose to trust in Him and not worry about the years ahead. And growing up, I never experienced a sense of worry from my parents. Concern, yes, but never worry or anxiety.

Our family life was very busy. My parents encouraged everything. Church, youth group, ballet, tap dancing, violin, trombone in marching band, piano, choir, tennis, friendships, vacations….we did it all. I’m thankful to my parents for sharing their zest for life with us (I have a younger sister. She is a cf carrier). They didn’t shelter me. And I thrived. I appreciate that we spent more time laughing and celebrating the little victories rather than dwelling on the hardships and disappointments.

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I was a pretty healthy kid. Cystic fibrosis was just part of our life. I had quarterly doctors appointments and hospital stays. More CF treatment options became available as years passed-daily treatments and medicines to keep my lungs as clear as possible and help me digest my food. This was life. This was my norm and I didn’t know any different.

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Sweet College Years
My college years were wonderful. I recommitted my life to Christ, made some amazing friends and met Jim Grumbine, the man of my dreams, whom I married in 2003.

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Those years were wonderful¬† and very challenging. I was living on my own for the first time. I was suddenly responsible for my health care. My parents weren’t around to remind me to do treatments all the time. Classes, choir, orchestra, treatments, part time jobs, exercise, friends…..It was tough finding the time to do it all. Unfortunately, my treatments were not the priority during my 4 years of college. I was hospitalized 2 times during those 4 years for a ‘tune up’. (For cystic fibrosis patients a tune up refers to a hospital stay where they receive heavy duty IV antibiotics to fight any infection that may be going on in their lungs. My tune ups usually last about 2 weeks.) I can say that I was faithful in exercising pretty much every day and that helped to keep my lungs fairly clear.

Reality Check
In 2006, I was in the hospital for a tune up and this time, my health didn’t seem to bounce back like it had in the past. My doctor showed us the previous 4 years of quarterly lung function tests. Four years of working full time and I had lost a significant amount of my lung function. Doing my treatments and getting the exercise I needed often took a back seat when I came home from work too tired to do much more for the day. Not being compliant had caught up with me. Jim and I decided that my health needed to become our priority. I now work part time for the family business and this gives me the time I need to be compliant with my treatment plan. We have seen an improvement in health stability since making this decision.

My Treatment Plan
Jim and I work as a team everyday to stay compliant with my treatment plan. In addition to inhaled medicines, a little device called the acapella, oral medications, and my diabetes management, I get 5 sets of chest physical therapy each day. Jim does manual chest physical therapy for 3 of those 5 sets. For the other 2 sets, I use a vest to vibrate my lungs for 30 minutes each set. Currently, it takes me about 4 hours each day to do all of my treatments. Six days a week, I also exercise for 1-2 hours. At this point in my life, this is the most effective treatment plan option for me. I take the responsibility of being a good steward of my body very seriously. Maintaining my health is a job 365 days a year. The choice I make each day to be compliant with my treatment plan allows me to invest in other things like a part time job, volunteering, relationships, church, and hobbies (I love playing tennis, hiking with my hubby and dog, laughing with family and friends, taking pictures of sunrises, singing on the praise team….). I’m thankful to have access to effective treatments and for an amazing husband who motivates me each day to give 100 percent.

Research and Drug Development
It’s an exciting time to be alive. Many new treatments and medicines have become available to CFers in the last 20 years that my parents never dreamed I would have access to. We continue to be involved in fundraising for the Cystic Fibrosis Foundation and I participate in clinical trials whenever I have the opportunity. I am so hopeful that a cure for this disease will be found in my lifetime.

God knows best
Sure, I’ve prayed for physical healing and both of us continue to pray for this. Most days I’m very tired of fighting this disease. I think about breathing. I’d rather spend treatment time doing other things. Cystic fibrosis is relentless. My health is always a consideration. I crave normalcy. But at the same time, we are so certain in our hearts that God doesn’t make mistakes. I know that I am fearfully and wonderfully made. I trust that God’s plan is perfect. He gives me remarkable strength and endurance each day. He’s given me an amazing life partner to experience life with. Going through the hardships together make us appreciate the joys so much. I believe God uses all things for good. And I can’t deny that I’ve seen Him use CF for good in my life.

I will continue to do everything I possibly can to be a good steward of the physical body God has given me and I will continue to thank and praise Him for always providing the resources and relationships I need to thrive and endure. I hope my determination and perseverance is an encouragement to those around me. Life is a blessing. Even on the toughest days, there are always joyful moments. God has given us some pretty amazing opportunities so far in this life and I’m excited to see what He has in store in the days ahead. This is the race marked out for me.

14 Responses to My CF Story

  1. Betsy says:

    I love the name of your blog! I’m praying God gives you the strength to run with perseverence as you fix your eyes on Him!

  2. Kiera Erickson says:

    Emily, I just got a chance to read much of your blog. It was so encouraging- I cried through most of it because you are such an inspiration to me and many others. I can’t help but see that this blog and sharing your story- the joys and struggles is part of your calling. God is using you! I’m also challenged to be more positive and be thankful in the midst of trials. Love you Em!
    Kiera

  3. nancy drury says:

    Just learned of your website its fantastic you and your family are a remarkable bunch and God gave your just the right husband, I love the title of your page. God has and is doing wonderful things in your life. continue to be an inspiration for us all
    Nancy Drury

    • Emily Grumbine says:

      Hi Nancy, Good to hear from you:) God is so good all the time:) Thank you so much for your encouragement. You are very sweet. I hope you are well.

  4. Emily,

    Your story brought back so many memories of our childhood. I just discovered this blog, and I’m in tears. You’re an amazing woma, you always have been, and you’re such an inspiration. I miss you, my friend <3 You have always been destined to do great things, and this blog gives hope to many CF patients and parents of CF babies. I just shared in my moms group!

    • Emily Grumbine says:

      Hillabunga! Thanks for the encouraging words. It’s been too long! From what I’ve heard when I see your mom (once in a while at a store or at the gym), you are an amazing mom and such a go getter! You have always known how to achieve great things. Never afraid to put in the work to get the reward! I love that quality. Blessings to you and the family!

  5. Giselle says:

    Emily – you are amazing! I never realized all that you go through. You are such an inspiration and I’m so happy that God provided Jim in your life. I’ll continue to keep you in my prayers! Love you! You and your family mean a lot to us!

  6. Isaac Groenendyk says:

    Thank you so much for sharing your story. I came across your blog though the CF Foundation. My son who just turned 1 also has CF and also needed surgery for a bowel obstruction shortly after being born. Reading stories like yours and hearing your faith gives families like mine encouragement and hope. Thank you.

    • Emily Grumbine says:

      Not that there is ever an ‘ideal’ time to be born with cystic fibrosis but I would say that I am so hopeful for those diagnosed today with cystic fibrosis. A cure will be found and I believe that your son has a very bright future:) When I was born in 1980, there really wasn’t much in terms of treatment options. We have come so far:) God bless and thank you for your encouraging words.

  7. Hello Emily. Have you heard about Stanford CF clinical trials on NAC? NAC stopped disease progression in the treatment group while controls declined. NAC thins mucus and we at Sharktank believe it is a good complement to Indrepta. You can get PharmaNac in the US. Sharktank is manufacturing a NAC supplement to assure better quality at lower cost.

    • Emily Grumbine says:

      Thank you for your comment.I currently take pharmanac fizzy tabs 900mg twice daily.I’m excited to learn that sharktank is manufacturing NAC.

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