You are invited to attend a free web-cast event SATURDAY, APRIL 22, 2017

RARE LUNG DISEASES PATIENT EDUCATION DAY ON CYSTIC FIBROSIS, CHILDREN’S INTERSTITIAL LUNG DISEASE AND PRIMARY CILIARY DYSKINESIA

REGISTER NOW AT:
https://attendee.gotowebinar.com/register/6993341835513746691

This event is co-sponsored by the American Thoracic Society, the Cystic Fibrosis Foundation, the Children’s Interstitial Lung Disease Foundation and the Primary Continue reading You are invited to attend a free web-cast event SATURDAY, APRIL 22, 2017

What Living on My Own Has Taught Me

By Ella Balasa

Living alone has its perks and its downsides too. It can get quiet at times. There isn’t someone’s presence here constantly. The upside is having the flexibility of doing what I want on my own time. Although I have recently come to realize, more responsibility means less free time to do whatever I want whenever. Having CF, this means a lot more responsibilities. Many young adults are living with their parents through their early 20s. This is something I did as well, and have recently made the transition to being on my own. There are a few things I have learned so far:

Time management is important. I have to think through my day before it happens. Fitting in 3-4 breathing treatments a day is an absolute must, so everything else I do in a day has to be worked around when I do those. I have to think about when I need to do certain things to be able to get places at certain times and to accomplish what I need to do in a day. Nutrition is also extremely important, and to make sure I’m having healthy meals, not grabbing take-out on the way home or out, pre-planning meals is something I have to think about. For example, taking something out of the freezer the night before, so I can prepare it in a crockpot the next morning to be ready to eat by that evening. When I plan things I am able to accomplish more, in a more efficient way.

I’ve learned the meaning of discipline. This goes along with time management. There are times where I can’t go meet up with a friend because I need to be home doing treatments, cleaning nebulizing vials (we all know how tedious and annoying this can be) grocery shopping or taking care of other responsibilities. I no longer have my parents nagging me and reminding me to do tasks that I need to complete. I have to take the initiative and do without being told.

I have a greater appreciation for my parents. I now realize how much my mom did for me. Mostly cooking meals, cleaning the house, taking out the trash, and just her caring nature. When she would randomly bring me a snack as I typed away at my computer. It’s the little things like that I miss the most.

Freedom. This is the best positive aspect to the whole situation. I do love feeling the sense of independence and accomplishment that comes with figuring things out on my own, planning my days, and getting things done in the time they need to be. I wouldn’t trade it. It is nice to not have constant reminders from parents and nagging about things I’m doing wrong or what I should be doing. And I feel proud that I am able to live my own life despite the extra daily challenges.

Although it is more work to be responsible for myself, I think it’s a very important step for young adults including those with CF. Parents of children with CF can be quite overprotective and may have a harder time letting go and allowing young adults to manage their own lives. It teaches responsibility and discipline and in the long run is beneficial for CF adults as they are better prepared to take on more obstacles and challenges with managing life with CF.

Making it Matter Ep. 31—Julia Recovers From the Stomach Flu

The past few days for Julia have been rough! She was dealing with the stomach flu, but now she’s better (yay!). So in order to get her back on her feet, we decide to launch the first ever Making it Continue reading Making it Matter Ep. 31—Julia Recovers From the Stomach Flu

OWN IT: Cystic Fibrosis Survival Rates in the United States vs. Canada

A study published in the Annals of Internal Medicine concluded that “the median age of survival [is] 10 years higher [for CF patients] in Canada than the United States.”

If you’re wrapped up in the world of cystic fibrosis news like I am then you’ve probably seen this study floating around the Internet for the Continue reading OWN IT: Cystic Fibrosis Survival Rates in the United States vs. Canada

Making it Matter Ep. 30 – Living with a Roommate

When people with cystic fibrosis head off to college the big decision is whether or not to live with a roommate. If we choose to live with roommates, for many of us it will be the first time we are very much sharing our cystic fibrosis with someone else. The need to perform Continue reading Making it Matter Ep. 30 – Living with a Roommate

Tell Congress to Oppose the American Health Care Act

The House of Representatives will soon vote on legislation that would jeopardize access to affordable and adequate health care coverage for people with cystic fibrosis.

The bills would effectively eliminate Medicaid expansion and alter Medicaid’s funding structure in a way that would reduce access to care Continue reading Tell Congress to Oppose the American Health Care Act

Exploring the Cause of Chronic Lung Transplant Rejection

Exploring the Cause of Chronic Lung Transplant Rejection, in a Quest to Stop It

http://www.newswise.com/articles/view/670346/?sc=mwhn

For patients affected by lung diseases such as pulmonary fibrosis, chronic obstructive pulmonary disease, cystic fibrosis and others, cures for their diseases are incredibly rare, if not nonexistent. Continue reading Exploring the Cause of Chronic Lung Transplant Rejection

The things we do for the hospital

Ironically I had this post planned for the end of January but as I mentioned in my last post I caught the flu and needed to be hospitalized.  So this post got pushed back and I got to try out the things I posted in it.

Though most of us don’t let CF define us, there are times when it does dictate our lives.  Sometimes it can be as big as not advancing in our career because we Continue reading The things we do for the hospital

Five things I learned about volunteering—By Reid D’Amico

Five Things I learned When I Started Volunteering with CF Organizations

By Reid D’Amico

During my years in high school and undergrad, I spent much of my time in isolation from CF volunteering. Though I was diagnosed, I had little ability to come to grasps with my CF. I isolated myself from it, and even remember the chilling alertness that would come over me when I Continue reading Five things I learned about volunteering—By Reid D’Amico

That is NOT pity worthy IMO

By Amy Braid

I’m currently inpatient getting IV antibiotics. I caught the flu a few weeks ago and as per the course it wreaked havoc on my lungs. But after a week I’m feeling better already and counting down to discharge day.

Continue reading That is NOT pity worthy IMO