ENCOURAGEMENT FOR A CF PARENT

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The advancement in medicine today versus when I was a kid has been amazing and has done so much to help the cf community.  Even with today’s advancements in medicine and technology like Orkambi and The Vest, I still see a lot of parents posting things about their kid(s) struggling to keep their lungs clear.  Sometimes the medicines work, and sometimes they aren’t enough.  Sometimes kids go into the hospital once a year, and sometimes they go in once a month.

For the past several months, it’s really made me think of things from the parent’s point of view.  It’s gotta be hard for a parent.  I can’t imagine what it’s like to see your kid struggling and feeling powerless.  If you’re a CF parent looking for encouragement, I would like to share a medication that has helped me fight CF since I was a freshman in high school: EXERCISE.  I was running defense for the first 16 years of my life, but once I began exercising, I was finally able to run some offense.  I got into weight training, running, swimming, sprinting, HIIT, boxing, etc.  Anything that would push me to get better and would really challenge my lungs.

Shortly after I was born, my mom noticed some things about me that didn’t seem right.  I was given a salt test and they found out that I had cystic fibrosis.  I was 6 weeks old.  Growing up, I was always doing aerosol treatments and this one thing called a “percussor.”  I hated that thing.  Even with the aerosols I was taking and the contraptions I was using, I would still have to go in to the hospital.  The things I was doing wasn’t enough.

Here is the difference I noticed before I started exercising and after I started exercising:

Without exercise – I had been hospitalized twice for lung infections. I was going to the doctor for checkups every 3 months.

With exercise – Not one hospital admission for 22 years.  I go to the doctor once per year….so that they will continue my prescriptions.  My lung function is currently 100%.  At one point, a doctor said to me regarding CF, “…it’s like you don’t even have it.”

Exercise works.  I know this because it has worked for me.  If it is working for me, I know it can work for your kid(s) as well.  I recently reached out to others with CF and asked if they could share how exercise has impacted them.  The response I got was amazing.  I can’t thank them enough for their responses.  I want to share the feedback I have received because I think it will offer some encouragement for you and your child’s life.  I hope this can be something that will show you the power that exercise can have for them.  Here are their stories:

 

skihunterr

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Twitter: @SKIHUNTERR

“Hi, saw your tweet and thought I’d respond. Have CF, 34 years old and Exercise kicks my CF’s arse! Been cycling since 2010 on average 5 times a week. Last year alone I cycled 5,500 miles including riding around Sicily and cycling up Alpe d’huez! Sport and exercise is so important and really supplements physio!”

 

Charlton Buchanan

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Twitter: @cbuck3323

“Exercise has definitely helped in my fight against CF. While I was in high school running cross country and track, my lung function actually got over 100% at one point and I was the healthiest I have ever been. Even later on down the road once my lung function was declining, exercise would always help keep me out of the hospital longer”

 

Jason

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Twitter: @Jarstachio

“Hi Matt!  I just read your story on your website and you are a really inspiring guy. Congrats on keeping on top of your treatments. I know it’s a daily grind. My name is Jason and I am also 36yrs old (37 in May) living with CF.  I was actually diagnosed later in life at 15 yrs old. If you are looking for a CF story, feel free to use mine. Most of it is located here : https://www.saltyskinfitness.com/about.

If you are looking for additional information, I would be happy to provide it. I hope all is well with you. Cheers!”

His story from his website:

Before 2014, I was a recreational athlete that didn’t follow a focused exercise program. Living with Cystic Fibrosis, my health was ok but I was getting frequent lung infections that needed oral and IV antibiotics. My eating habits were poor, at best, and the beer gut was forming nicely. Along with my now wife, Chantal, we decided it was time for a change. We hired a personal trainer and started a strength-training program in April of 2014 to prepare for our upcoming wedding. We also, of course, changed our nutrition habts. I began to see the tremendous benefits of my consistent efforts. I felt stronger, my stamina and flexibility improved, and I was getting fewer lung infections. Hurray! 

After  being laid off from my project management job just before our wedding, I realized I did not want to continue down that career path. While it was a difficult moment in my life, I took the opportunity to really think about my future. Fortunately, it was not hard for me to see my next move. I knew that I wanted to become a fitness coach. It was quite a scary career shift but I wanted to help others experience the benefits of strength training and healthy nutrition just as I had. I love to hear about and witness personal success stories. I believe that, through training and healthy eating, anyone can achieve their goals.

Now, as a husband and dad, I need to stay healthy to be able to grow old with my wife and see my little girl grow up . My goal, as a coach, is to help out moms and dads find ways to incorporate fitness and healthy nutrition into their lives. I want them to have the energy and strength to make the most out of the time they have to hang out with their kids, partners, family and friends.”

 

Emma

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Twitter: @emma1401

“Ok, that’s great! It all really goes back to when I was about 18 months old my mum realised there was something not quite right. I wasn’t really eating or when I was eating I’d be sick and have really bad stomach pains all the time. My mum was constantly at the doctor to ask for some help and the doctor always told my mum there was nothing wrong and she was being paranoid. When I was about 7/8 he told my mum I was asthmatic and that I should take an inhaler to help my symptoms (this didn’t not help at all). I have been dancing since I was 2 and had always found it really hard to keep up because it was like my lungs weren’t working as they should, then when I was 10 I went back to the doctor as I wasn’t feeling well again and (it was a new one this time) she told me it was a chest infection and gave me some antibiotics to clear it up. Three weeks later I was back to the doctor and she noticed something wasn’t right as if it was a chest infection, I shouldn’t be getting the same symptoms again. She referred me to the hospital for more tests and after many years of trying to find out what was wrong, they told me I had CF.

My lung function was very low, I was extremely underweight and had 4 chest infections at once. I was diagnosed 4 days after my birthday and 10 days after being diagnosed I was sent for emergency IVs in hospital. All whilst doing ALOT of dancing my lung function mixed with he correct medication began to creep up to a point the doctors and nurses were happy. Then when I was about 15(?) I was asked to participate in an exercise trial my doctor was doing to see if increasing my exercise would help to increase my lung function. After increasing my dancing even more and doing more exercise classes my lung function hit an all time high 93% which I never thought would ever happen. It has since remained in the high 80’s/low 90’s but of course has dropped at points where there’s been infection in my lungs and they have seized to work properly. I’m proud of what I have managed to achieve as without the amazing work of the NHS I think it’s fair to say I could’ve died due to how unwell I was and to be able to share my story with someone is something I am also grateful for. Thank you”

 

Katie Gaffing

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Twitter: @KatieGaffing

“I am currently training for the London marathon (I have CF) this has helped with my lung functions massively !! X”

 

Micaela Ramon

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Instagram: patriciamicaela

“I live in an island so I have always been walking and swimming not as sport but for fun and to share time with friends and family. Doctors say that that’s what keeps me “healthy” you know… as healthy as we can be”

Martin De Mik

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Instagram: mdemik

“Hey man, saw your post about exercise and CF. Where do I even start..
Ive put on over 40 lbs (20kg) of muscle in the past 10 years. It gives me a buffer when i have an infection. It kept my lung function stable at 115% from my 18th to my 28th (if it wasnt for Orkambi I’d still be hitting those numbers now. Exercise is the best meditation i can think for any CFer. Period.”

Now what can I eat?

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Instagram: nowwhatcanieat

Website: Nowwhatcanieat.blog

Website: http://www.fiit.tv

“Would love to contribute – post transplant expertise has helped me so much with my recovery both physically and psychologically.
I think discussing it pre is so key too but often find myself frustrated that there is little to no acknowledgement that while it can really help hold of the progression of the disease sadly sometimes it’s still not enough and if you have to stop exercising so actively or end up having your health decline and/or then have to have a transplant or meds to help you along or to stay alive despite exercise efforts it isn’t a reflection of failure… obviously having inspirational Cf fitness people out there is great but there needs to be something to put this more in context in my opinion?!”

 

Mandee M Carter

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Instagram: saltynsweetcf

“I work out at least 4-5 days a week in the gym. It has helped me build muscle, keep a good weight on and also helps my lung function and breathing better. Now, I haven’t been to the gym since end of November bc I got real sick for the 2nd time ever since I was diagnosed at 7. I’ll be 38 on the 18th. January was only the 2nd time I’ve been put in the hospital. The last time was 7 years ago. My lung function has been in the 70’s. Not sure what it is right now. But I start back to the gym tomorrow. I’m so excited bc it makes me feel so good and helps me sleep at night.
If you have anymore questions, please feel free to ask. I’m an open book.”

 

Ela Castillo

Instagram: ela_castillo

” Exercise helps me with airway clearance, healthy weight gain (increased appetite and muscle weight), and mental health. 💪”

 

Tosha Wise

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Instagram: mrs_t_wise

“Hi there!
In response to your post about exercise:
I started out doing home workouts 3× a week, slowly progressed to making it to the gym for the elliptical, then eventually some light weight training. About 3 months in, I joined a kickboxing circuit gym, called 9Round. It’s a 30 minute HIIT workout with strength training and aerobic exercise. Started with 3x a week, to 6x a week. I have been going for almost a year now and I can tell a HUGE difference in my endurance and emotional health

I stay healthier, more often and am able to keep my own pace AND push myself. It’s been such a blessing and to say I do kickboxing, WITH CF, it’s the best feeling 💜💪🥊”

 

The Salty Mutant

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Instagram: thesaltymutant

“Saw you IG post, not sure if I apply for what you’re looking for. As I have had two lung transplants, but I’ll give you a quick overview. In 2015 my lung volume dropped by a lot as well I had a small amount of rejection. My lung team didn’t think I would recover and would be dependent on O2 for the rest of my life. I found myself a trainer and we worked 4 times a week with small sets slowly building my strength back as well recovering some of my lost lung volume after about 8 months of a set routine I was O2 free and within a year I was felling the best I had in a long time.
Until my recent hospital admission, but I plan on doing something similar and get back on track.”

 

Isabelle Rosamond

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Instagram: bellrose1990

Instagram: the_cystic_fibrosis_channel

“I would be happy to contribute. I can happily say as well, that going to the gym has definitely helped me feel (finally) like I have a bit of control with my CF, instead of it controlling me all the time!

My last hospital admission was in July 2017 and before that I hadn’t been in since 2011. However, my mindset after going in last time changed drastically to what it was before.

Before I went in, I felt like the decline in my lung function was inevitable and that there was nothing I could do to prevent it. I felt that there was no point in actively trying to improve it.

In 2017, my lung function was better than ever after I got out of the hospital and instead of being resigned to a declining lung function, I decided I wanted to try and see if I could maintain my lung function. So, I started going to the gym.

Whilst I haven’t completely maintained my lung function, I have slowed down the decline in my lung function, which has ultimately made me feel in control for once.

This control has driven and empowered me to want fight my Cystic Fibrosis even more and encourage others to find their own way to take control.”

 

Kassandra Hope Case

Instagram: thesassycfer_

“Exercise helped me get through my transplant recovery. I use to do CrossFit about a year before my transplant and had to stop due to lung function. I would have struggled with recovery a lot more if I wasn’t in the shape I was pre transplant. I have done gymnastics my whole life. I have always exercised and I am getting back at it being at home.”

Michele Rodriguez

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Instagram: miarod137

“Hi I’m Michele. Diagnosed with CF at 2 years old. Working out is what I use for my CPT. I don’t have the option to have good ole fashion hand CPT and I found the vest to be just a cheap massage. Cardio and weight training is what gets me coughing to get the sputum up. I have found my love with Orange Theory Fitness the intense HIIT cardio training works my lungs to the fullest!! I’m a Respiratory Therapist and I love to share my knowledge of what works for me to my patients.”

 

Justin

Instagram: justinlivinlife

“I use running as my exercise with CF. Usually do about 5 half marathons a year. In 2015 I successfully completed doing a half marathon for the year”

 

 

 

I hope this blooooog has helped you as a parent.  If it has, please feel free to let me know in the comments.  Also, if you have a testimonial as to how exercise has helped you to fight CF, please tell us in the comments.  Whether it’s a few sentences or a few novels, your story can help a parent who is struggling.

I will follow this up by explaining HOW I utilize exercise to help me fight CF.

Until then,

STAY TUNED

 

 

 

3 thoughts on “ENCOURAGEMENT FOR A CF PARENT

  1. Christian Lease says:

    Hi Matt. I am part of the LifeLineRacing non-profit team – we had an exchange a few weeks ago after we posted one of your bits on our website relaunch. One of the things we do is post daily links to cystic fibrosis and Exercise + CF articles on our FaceBook page. This particular blog (which we posted today) really got us excited! It is so completely in line with what we have have learned in the last 11 years with our son, Emlen, who has CF. Emlen is a competitive swimmer who trains year-round (along with his brother, who is 15). While we have not been able to completely avoid hospital visits, we did have one bronchoscopy where the MD thought they had the wrong patient – there was no way someone with CF had lungs that look that good.
    In addition to the clear physical benefits of routine exercise, the social aspects of being on a team and exercise-related stress relief are invaluable.
    Finally, please keep doing what you are doing! The awareness you bring to CF and the benefits of exercise is invaluable.

    Like

    1. BOURNE to TRAIN says:

      I couldn’t agree more with everything you just said. I love that they thought they had the wrong patient because his lungs were doing so well. I believe that if Emlen sticks with it, his health will be very well for the future. Thanks for sharing the blog. I always like to return the favor. I’ll share your stuff too.

      Like

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