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.
We have all heard expectant parents say they don’t care what the sex is as long as the baby is healthy. Nobody wants to hear their child will face a life long illness that will involve daily medications and treatments. This is what the approximately 30,000 adults and children living with Cystic Fibrosis face.
Cystic Fibrosis is an inherited, chronic disease that causes a thick sticky mucus that interferes with normal function of the respiratory, digest and reproductive systems. The treatments and illnesses caused by CF affect all aspects of the lives of those inflicted with the disease.
When My daughter was younger she spent many years on a gymnastics team. It was there that we met Katie. It was not long after joining that we learned she lived with CF. It was easy to see why she was such an inspiration to all who met her.
All the girls worked so hard to achieve their goals, but Katie had to work extra hard. When the girls woke up at 5 AM to head to a meet Katie had already been up an hour and a half doing her morning treatment, add to this the daily meds and frequent illnesses and you could not help but be inspired.
I recently asked her mom what she found the best way to keep someone on tract with treatments. This was her response:
“To keep someone on track you have to start from the beginning doing them all the time no skipping. You have to teach them the importance to their health and to keep them out of the hospital. A lot of CFers tend to try to skip when they become teenagers and when they go off to college or move out on their own. They really need a important activity or sport that they do not want to miss.Katie used to talk to kids that were trying to skip and encourage them to stay on track. Katie had gymnastics and cheering to keep her on track and you know that sometimes no matter how hard she tried she would end up with an infection and end up in the hospital. There were a few times when her CF DR. wanted her in the hospital, but she told him she had a gym meet in a couple of days and then she would come in. He always let her wait because he knew how important it was to her and we would meet him at the hospital right after the meet.”
The girls have grown now. Katie stayed very active in Gymnastics and Cheering. She now coaches Cheering. When preparing to write this post I decided to ask her a few questions, below are her responses:
What is your daily CF treatment regimen and what effect does it have on your day to day life:
” It takes me an hour and a half to do my therapy twice a day, so that is a good 3 hours that is lost in my day because of having to do medication. Plus, you add on the many pills (I currently take 60 some odd a day), the inhalers (I take three), the Miralax drinks (I drink 4 or 5 16 oz drinks a day, could be more if I am having an obstruction), plus the diabetes medication (I currently am on an insulin pump), it can be frankly quite exhausting. It can get frustrating, especially if you want to go do something with family or friends, but you have to do all the medication first. To be to work, I have to get up 3 1/2 hours beforehand. The importance is so huge though. If I don’t do all my medications on a daily basis my PFTs (Pulmonary Function Tests) will decrease as time goes on. It will continue to decrease, making it harder to breathe and function on a daily basis.
When you don’t do medication, your cough can increase, which increases the chances of getting an infection. Infections can make it so that I am either in the hospital or on home IVs for at least 6-8 weeks, if not longer.“
How can friends and Family most help those living with CF:
“The biggest way family and friends can help is by being supportive and always being there for the person.”
I am sure you can see the importance of everyone working together with the best interest of the person living with CF in mind. I just learned about Walgreen’s CD Champions “Navigating The Journey Together” program. This program was set in place to help those living with Cystic Fibrosis, as well as their caregivers. They offer education about everything from administering medications to what the right medications and daily medication regimen will help improve day to day life.