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Her Story

May 6, 2010

You may know that I am Pledging Great Strides. I met a young woman named Katharine through the blogiverse, and her story touched my heart.  I wanted to do something, in her honor. The Albany Great Strides event is just over a week away, and in order for you to get an idea of why I made this decision I asked Katharine if she would share her story with you, and so she did.  I have a few things to tell you about Katherine as well, so you will see my notes in green as you read along. oxoxo

 

Hi THS readers! My name is Katharine and I blog over at From A to Pink, where I talk about what it’s like living with cystic fibrosis. When I started my blog Heather was one of my biggest supporters – leaving incredibly sweet comments, tweeting me encouragement, and just generally being one of the best blends I’d found in my short blogging life.

3784828843_f1452856c6 Katharine is a beautiful young woman. Her smile is warm, and her eyes are kind. 
She is a lot like your sister, your best friend, your roommate. 
She is a lot like the person you want to be when you grown up.

When she told me she wanted to participate in a Great Strides walk in my honor I was floored. Here was someone I’d never met in real life, who was going to take the time to support a cause obviously near and dear to my heart. So when she asked me to share my story with her readers, I of course said yes! Below is a little piece of my journey, and my hope is that it gives a face to the disease, rather than just a list of symptoms.

I will never be able to put into words what it means to have met such a genuine soul like Heather’s. She has gone above and beyond anything I ever expected when I started my blog, so THANK YOU, Heather.

 bandw-me1 Katharine has a story to share.  Just like you do. Just like I do.
Our stories may be different, but we are all so similar.
Some people hide their stories. Katharine bravely shares her story, with purpose.

Each CF patient’s story is a little different; here’s my version.

I was diagnosed late, at 16 – most CF patients are diagnosed by the age of three. After being sick with a cough and numerous bouts of pneumonia for almost three years, my doctors were ready to throw up their hands. Asthma? No. Allergies? Nope. COPD? Not that, either. It was then that I was taken to Johns Hopkins, as a sort of last resort, for a sweat test.

After a couple hours at the hospital I was sent home with my parents to wait for the results. I don’t know how many excruciating hours later, but we got a call – I had tested positive for cystic fibrosis.

me-and-mom-bday1

me-and-dad-bday1

Katharine has a Mother. Katharine has a Father. Katharine is a daughter.
I don’t know what it’s like to be a parent, but I know what it’s like to be a daughter.
I know what it’s like to loved unconditionally.
I can not imagine what CF means to Katharine’s parents.
I can not imagine what they felt the day they learned that their 16 year old has CF.
Can you?
 

This kind of news is always hard to swallow, but especially at 16. Suddenly I was faced with hours of daily treatments, a handful of pills to swallow, and follow-up appointments with my doctors to figure out my future as a CF patient.

Luckily, I have a more mild case. I don’t have any of the digestive issues (meaning I don’t have to take enzymes with every meal and am able to gain weight) and my lung function has remained at relatively healthy levels (with a few dips here and there). But cystic fibrosis can be unpredictable, so the “what ifs” are always hanging over my head.

The hardest part for me has been managing my disease on my own. Incorporating up to two hours a day of chest therapy and medication into my life, after 16 years of nothing at all, has been difficult. Not to mention all the other implications this has on my future.

9020_525639263071_53001692_31272449_4178294_n

Katharine feels love.  Katharine feels hugs. Katharine feels support.
Katharine is just like us.
If you were in her place, what would you feel?n28500100_31299307_2391

Daily treatments:
– some form of chest therapy (either the VEST or Acapella) 15-30 minutes, twice a day*
– Pulmozyme (via nebulizer) once per day (5-10 minutes)
– Zithromycin one pill Mon., Wed., Fri.
– Advair one puff, twice a day
– Hypertonic Saline (via nebulizer) once per day (30 minutes)
– Albuterol (as needed)

*Chest therapy is done in order to move the mucus out of my lungs. This is VERY important in preventing infection. And this is probably what I’m worst at doing on a daily basis.

This is a pretty light load in comparison to other CF’ers and could also change depending on how I’m doing health-wise.

I also visit the adult CF clinic at Hopkins every three months. If my lung function takes a significant dip without reason, I’ll go more frequently until I get it back up.

 5535_548411322327_17603843_32757586_6015528_n (1) Katharine Dances. Katharine reads books, and likes Justin Timberlake, and the beach.
Katharine likes to color code her calendar and trying new food.
Katherine likes to travel and enjoys the color pink.
Katherine is a lot like me. And you. And a lot of people I really love.

Speaking of lung function, you’re probably wondering what I’m talking about. The number my doctors care most about is my FEV1, which is how much air I can push out of my lungs in a certain amount of time (at least, that’s the non-medical way of putting it). A person without CF would fall somewhere in the 85-95% range. I am currently between 70% and 75%. My goal is to get it into the 80s and keep it there. I’ve had it as low as 50% at which point I was hospitalized for a couple of days, hooked up to IVs and sent home to continue them for two weeks. Not fun. So I’d like to keep that from happening again.

The 10 years since my diagnosis have been hard. And I’m still a long way from fully dealing with what it means to have this disease. Completing the daily treatments I have to do continues to be a struggle, even though they will add years to my life.

I started my blogs in hopes that it will help hold me accountable. Because when it comes down to it, I’m the only one that can keep myself healthy. I can decide to take my medication or not. I can do my chest therapy twice a day, or I can half-ass it. I can go to the gym, or I can sit at home and watch TV.

CF is a tricky disease. We carry bacteria that are only harmful to other CF patients, meaning that support groups (aside from ones online) are nonexistent. If I find out someone has CF, I have to keep my distance. It can be very lonely.

Luckily I have an amazing boyfriend, wonderful family, and fabulous friends who support me in whatever way I need. Whether that’s a shoulder to cry on, letting me vent my frustrations, or gathering people to participate in a fundraiser. But they can only do so much. Like I said before, the rest is up to me.

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Katharine has friends and family, just like you do. Just like I do.
Katharine’s loved ones participate and support Great Strides programs.

The other reason I wanted to make CF the focus of my blog is because it’s such an unknown disease. And awareness is key in finding a cure.

The first memory I have where I realized how little people knew about this disease was at a Martina McBride concert. It was a benefit for CF, and the first one I’d attended since my diagnosis. Seated next to me was a mother and her young son. At one point he turned to her and asked, “Mommy, what’s cystic fibrosis?” To which she replied, “I’m not sure, I think it’s a muscular disease.”

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Katharine dreams about her future. Katharine has fears and doubts and confusion.
Katharine doesn’t know what’s coming for her.  Katharine doesn’t know how long she has to live.
She doesn’t know what milestones she will reach in life.  But that doesn’t stop her from dreaming.
Katherine has hopes and goals like any other twenty-something.

It’s because of experiences like that that I want to educate people about CF. Especially because my belief is that people would be much more willing to support a cause that they understand. One where they know where their money is going (research), who it’s going to help (CF patients), and what it’s for (to make CF stand for “cure found”).

I am so thankful for people like Heather who are helping to spread the word – because of her kind heart and generous spirit, people with cystic fibrosis stand a chance at a normal life.

kath_pants Katharine is a lot like you, and she’s a lot like me. I would like to think that if I was in her situation, that my loved ones would support me anyway they could.  I would like to think that strangers would offer to learn about my diagnosis and spread the word about what CF is.  I would like to think that people that have never met me would be touched by my story and want to participate in Great Strides events or donate a few dollars to the cause – because I have been touched by Katharine’s story. I have been touched by her honesty, and her genuine desire to bring awareness to an illness that so few people know about.  I’ve been moved by her winning attitude and her seemingly resilient smile. 
I’ve been inspired by her words:

 

Please consider making a donation.  Please consider making a step to cure cystic fibrosis.  Please consider doing it for Katharine, and please consider doing it for yourself. Every dollar counts.

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6 Comments leave one →
  1. May 6, 2010 7:45 pm

    What an inspiring and courageous woman! I ran part of the Boston Marathon with someone from the Mass General CF team, and I learned a lot from her.
    I also know someone who was diagnosed at 2 and is now a 50 something mom of 4, healthy and doing great. So many strides are being made in such an important cause!

  2. May 6, 2010 9:57 pm

    Kat is my sorority sister and one of my good friends. Like Katharine I have a chronic illness, and her blogging and holding herself accountable has made me start to do the same. While I’ve never seen Kat at her worse, she’s seen me at mine, when my body shut down and my kidneys started to fail. Kat was the only person that could understand their own body working against itself. Kat and I always say “we’ll outlive them all,” and truly I think we might.

    Heather, you have realized what a wonderful friend Katharine is and what an inspiration she is. Thanks for walking for her! It’s people like you that will go out of their way for a perfect stranger that gives me hope. It’s people like you that will help fund the cure for CF, the cure for Lupus and help Katharine and I outlive them all. THANK YOU!

  3. May 7, 2010 5:26 am

    there is a set of twins from my home church who both have CF. theirs is a very rare and serious case, and both have had multiple organ transplants, including a double lung transplant for one. I always found it amanzing how strong they were through it, despite the frailty of their low states. they are currently being treated in Toronto, and a wonderful man [Harry Voortman, of Voortman cookies] flies them to the city from my hometown in his private jet [about a two-hour flight] every time they need to get there. their story is inspiring, although it is far from being over yet. from the time they were very young, they were told that they would never live past sixteen, but here they are now in their late twenties, sick but yet very much alive. I have an enormous soft spot for people with CF, and I hope and pray for the best for Katharine.

  4. May 7, 2010 4:37 pm

    Thanks so much to both of you for sharing this story! I think it’s so important to educate people on conditions like CF!

  5. Liz permalink
    May 7, 2010 9:04 pm

    What a beautiful, inspiring young woman.

  6. May 8, 2010 6:18 pm

    You are an amazing woman Kat! I’m from Baltimore and I read your blog. Your story is so inspirational! And what you are doing to raise awareness is so important. 🙂

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