Saturday, November 14, 2009

Parents, Would You Roll the Dice on CF?

**I posted this a couple of months ago and got a great response. I thought I'd give it another go around this week. Make sure you take the time to read through the comments too!**

I would really really really like all of your opinions on the following article...

Should Bad Genes Mean No More Kids?

filed under: health

My husband and I chose to have more kids, knowing we have a 25% chance of having another child with cystic fibrosis. Are we selfish?

Maybe, but I think my daughters are pretty grateful to be here.

Homeschool Mom: Is it selfish to have more kids when you know you and your husband have a bad gene and you have already passed it on to two kids? Frankly, I'm not sure. I know I love my kids and I am taking care of their health needs and they are growing and thriving, but I also know that they have a big burden in their lives. I have the burden as well, of course, but it is different when you are the person who is suffering with the physical symptoms. They definitely feel the burden, they deal with it, and they are not happy dealing with it. In fact, I asked each of my children with cystic fibrosis if they could change one thing about their lives, what it would be. Each one said they would want to be free of CF. My husband and I have the same wish. Even the youngest, who does not have it, said her second wish would be that her siblings no longer had CF (her first being that she wants a pony).

Let's face it, having a chronic illness that demands many inhaled breathing treatments, oral drugs, sometimes intravenous drugs, and hospital stays, and which causes you to have pancreatic insufficiency so you have to take pills every time you eat, plus a host of other symptoms and problems that would take up my entire page, is not fun. But does that mean that never having been born would have been better? Well, how can anyone truthfully ever know?

I do know my children are happy and as healthy as their friends. Their condition does not prevent them from doing anything. They do have to work hard to maintain their health, and they have to see many doctors on a regular basis, but for now they are as energetic and exhausting as any other kids. The tragedy would be if their health deteriorates while they are young and they succumb to CF. Obviously that is not something I contemplate too often, because it would be heartbreaking, but when I really consider it, I know that a tragic end does not mean a life was meaningless, it means a tragedy has occurred.

There are no guarantees when you have a child. I remember when I heard about the Christian singer Steven Curtis Chapman, who lost his 5-year-old daughter when his son hit her while backing out of the driveway. Who could foresee such a tragedy? Children get cancer and other illnesses, and sometimes they die horribly and painfully. We do the best we can with our children's difficulties. I think my husband and I are good and loving parents who try to do the very best for our children. I would take my children's illness upon myself if I could. I would give my life for them, but I would never give them up, nor second-guess a decision to have given them life in the first place. The world is a better place because my children are in it, and you should all just count your blessings they are here!

Follow up questions:

What would your decision be?
Would you have more children?
CFers, how would you feel if you knew your parents made that choice?
Any parents out there struggling with this very issue?

I would love your feedback on this issue guys, so please, comment away!!!

Thursday, November 12, 2009

Great Opportunity for CF Awareness

Here's some of the things that I'm so thankful for today....

I would be remiss if I didn't acknowledge how thankful I am for all of those who have served in our great military. I have many family members who have served honorably (and continue to do till this day) and am humbled by the dedication they have to serve. My dad retired a Chief Master Sergeant in the United States Air Force a handful of years back and his retirement ceremony continues to be one of the most emotional days that I've ever had. I can say without a doubt, that I was more proud of my dad that day than I have ever been before. To see how many lives he had touched during his military career was truly breathtaking. So to all of the men and women who serve this great country of ours and protect freedoms that I take for granted every day, THANK YOU!!!
I'm so thankful for my positive support system that has grown online. I've always had great family and friends that have been there for me and root me on like nobody's business, but it's nice to feel all of love coming from parts of the CF community. Like all of my other fibros and cysters know, you'll never really get it, unless you're in it. The fact that I have so many of you cheering me on that have been there and feel what I feel means the world to me. You'll never truly know what it means to me and I only hope that I can support and inspire all you as much as you have supported and inspired me.

I'm so thankful for the opportunity that Mandi and I have coming up this weekend in Dallas, Texas. We've been invited to be the "CF Education and Information" czars at an event called the CF Concert Series. I just hope that when people walk away from that event, they'll know more about CF than when they came. And if things go really well, we'll be able to plant a seed in those people that not only make them feel compelled to learn more about Cystic Fibrosis, but to pass that knowledge on to friends and family. A cure for CF starts with awareness and we hope to be able to create much of it at this event.

Wednesday, November 11, 2009

Down, but NEVER Out!

So as many of you know already, I took my PFTs again yesterday. Would you like the good news or the "bad" news? I'll go ahead and give you the "bad" news first. My PFTs were down. They went from a FVC of 83% and an FEV1 of 68% to 73% and 60% respectively. Now, here's why I say "bad" news. I of course never ever like it when my numbers go down, but this can actually be explained.

I just ended a cycle of TOBI. Want to guess what my PFT numbers were after my last cycle? If you guessed almost identical to what they are now, you'd be correct. When I blew my PFTs out of the water last month, I was on my off month of TOBI. So what does this mean? Well, one of two things: it's either pure coincidence or TOBI bothers my lungs while it's in there killing the bugs. I'm going to have to go with what's behind door number two Pat! I always feel a little "off" during my TOBI months. I'm usually achy, have hot flashes and generally feel more tired. It also probably didn't help my numbers that I was traveling so much this month and I hacked up some blood last week. So, that's the "bad" news.

Good news you ask? Like one of my Facebook friends said, this gives me the opportunity to "recalibrate and recalculate". I love that by the way Kelly! That's the first thing I thought when I blew those numbers (not in those exact words of course, those are yours). I was thinking, alright Ronnie, let's figure out what you did or didn't do this month that you did or didn't do the month before. Where do I start? Like I said, I was traveling a lot this month. Traveling means less consistent exercise, less consistent treatments and less consistent sleep. Well I'd say that's enough to send my lung function down 10% right there! Now it's up to me to make a new battle plan for this month and stick to it. No excuses!

I never take these "bumps in the road" lying down. If CF raises me some bad PFTs, I'll re-raise him with more exercise. If CF raises me with tiredness, I'll re-raise him all-in with increased treatments (Sorry for the poker analogies). Point is, I'm willing to do whatever I have to do to maintain and increase my lung function. I know that the investments I make now, will pay off in the future. For me this month, it may mean a hospital stay. If we're going to be honest, my doctor wanted me to get a bed in The Hole tonight. He's concerned with my drop in lung function + hemoptysis + other symptoms. Unfortunately, I can't go in tonight. I'm traveling to Dallas on Friday to be part of the CF Concert Series. If I get more sick by making that choice and pushing off a hospital stay, then it's on me. I'll have nobody to blame, including Mr. Cystic Fibrosis, but me. When it comes down to it, life is choices, and I am alone responsible for every one that I make...

...but yeah Dr. Martinez, I'll take that bed next week!

Tuesday, November 10, 2009

My Top Ten Favorite Ways to Kill Time in the Hospital

After reading Sydna's great guest post on Sunday, I decided to put together a hospital themed list. My list is all about how I find myself killing time while I'm in the hospital. Now, keep in mind, I've averaged about 90 days a year hospitalized over the last handful of years. Killing time is essential. Otherwise, there is no doubt that I would go stir crazy. Luckily, I've never really minded being in "The Hole" because I know it's what I need to stay on top of my game.

10. Taking Naps - I never, let me stress, NEVER take naps. If I am caught napping, that means that I'm either REALLY sick or I didn't sleep the night before. It's nice to take some little cat naps while in the hospital. Sometimes it's also necessary, cause as all of you CFers know, consistent sleeping patterns in The Hole are nearly impossible. Towards the end of my stay, I'm usually up until 3 in the morning.

9. Blogging - Not that I don't do a lot of blogging when I'm not in The Hole, but in the hospital I usually do video blogs. Those are fun cause I can get more of my thoughts out and I can make you stare at this dreadful mug for five minutes :) If you've been following this blog for awhile you also know that I like to film things like IV placements, discharging of a PICC line and PFTs.

8. Visiting My Old Peds Floor - I absolutely LOVE my old ped nurses. Seriously. Every. Single. One. (Did I do that right? I always think it looks so cool :) ) They are always smiling and make me feel like a million bucks every time I see them. One thing about going to the hospital as much as I have during the course of my life is it has created a big time family environment for me. I know most nurses and RTs personally and they know most of my family as well.

7. Organizing My iTunes - I never like doing this while I'm doing it, but man does it feel good when I'm done. I'm pretty sure that I am at least borderline OCD when it comes to, well, pretty much everything. All of my songs need to have the correct genres, correct album covers, all information filled out and there can be no repeats. I've literally spent hour upon hour organizing all of my stupid songs.

6. Walking the Grounds - It's fun to walk around the grounds of the hospital and try to spot things that have changed since the last time I was there. It's pretty easy to do because they are ALWAYS working on the campus. I go to a teaching hospital that is attached to a University. They are always expanding by adding new buildings or renovating old ones.

5. Hidden Object Games - Mandi and I usually spend hours playing hidden object games that we find online. In fact, we use a site called If you've never played them, you'll either really enjoy them or you'll throw your computer out of the window.

4. Listening to John Jay and Rich - This is probably Mandi's favorite part of me being in the hospital. Usually on Saturday and Sunday mornings we grab some Dunkin Donuts, curl up together on a chair and listen to podcasts from JJ&R. You can find them at and I HIGHLY recommend listening to "War of the Roses" and "Second Date Update" podcasts. I guarantee you'll be laughing.

3. "Terrorizing" Student Nurses - Maybe I chose to harsh of a word, but I couldn't think of what else to call it. Whether it's making up symptoms or tapping on my chest to create an irregular heart beat, I'm always messing with them. Here's my favorite thing to do though: There are these antennas in each room that will send out data to the nurses station if you're hooked up to a certain heart monitor. These antennas have four arms and look like a mini ceiling fan. Often, on their way out of the room, I'll ask them to turn my "fan"on. I'm not kidding 10 out of 10 times, they'll keep flipping the light switch off and on wondering why the fan won't start to spin. I've even had some say they'll call maintenance to get it fixed. Love it!

2. TV series on DVD - My cousins (I have about 100 of them) will often bring me TV series they like on DVD. While in The Hole, I've managed to watch every season of the Office, LOST, 24, Freeks and Geeks and King of Queens. I'd much prefer that than watching live TV because after getting DVR I am now a commercial snob and refuse to watch them anymore. If you have any "must see TV" for me, let me know and maybe I can add it to my list for the next stay.

1. Playing Video/Board Games - I'm a competitor. I don't care what it is. If I'm doing it, I want to win. If it's not a competition, most likely I'll turn it into one. This goes for board games too...especially if it's my little brothers or Mandi. We like to play Sequence, Skip-bo, Scrabble, Boggle etc. The only time I play video games is when I'm in the hospital but it definitely takes me back to my younger years when my buddies would come by and we'd play until the sun came up. Again, if you have any suggestions on new games, I'd love to hear them.

Well, that just about does it. What about you guys? What do you do to kill the time while you're in The Hole? Feel more than welcome to leave some comments today and give me and others some more ideas. You can also contact me if you'd like to form your own Top Ten list and post it on this blog.

Monday, November 9, 2009

Everyone Can Use a Cheerleader

As some of you may remember from my previous posts, I am training for a half marathon that is at the end of this month. I ran yesterday, as Sundays are my days to get a long run in, but I really really really didn't feel like running. I could think of a million and one reasons why I didn't want to go and a few why I shouldn't go! It was hot, I had to do it alone, I was tired, I could just do it tomorrow, I hadn't been drinking enough water so I'd be dehydrated, and many, MANY more. Never-the-less, I laced up my Asics and hit the pavement. It was not a very enjoyable run from the start. Just one of those days when everything feels off, and as my mouth dried out and my legs went numb, I constantly had to keep my mind from flashing back to all my reasons as to why I shouldn't be running. I had to keep the little voice in my head from saying, "told you so." With a mile and a half left in the run, I saw Ronnie on a bike riding towards me, yelling, "Good job honey." Boom, I instantly felt less tired, had more energy and suddenly the last 1.5 miles didn't seems so far (although my mouth was still just as dry). Ronnie rode the last leg of the run with me; cheering the whole way.

It reminded me how far a little encouragement goes in motivating me. Somehow, a few cheers from the sidelines really does a lot for me. When we got home, I told Ronnie how awesome it felt to have him cheer me on when I felt so tired. We both agreed that it's a good thing to remember to do more often. Not only when we're running, but with anything. This really goes for all things related to CF: treatments, exercise, hospital stays, taking meds, PFTs, and the list goes on. Stuff that is not so fun, and often times tiring, becomes a lot easier with a little help from people on the sidelines.

This week, I've made it my goal to be super uplifting to the people around me. Join me and do the same!! Hopefully, someone in your life will return the favor!!

Sunday, November 8, 2009

Favorite Things About the Hospital

Today, I'm proud to present to you a blog from a cyster that I have recently met over in the Facebook world. Which reminds me, if you have Facebook and you read this blog, find me and friend me. If you already are a friend, then make sure to suggest to me other CFers and CF parents that I can meet! Ok, back to this great blog that will be featured today. It's by my cyster Sydna and her blog can be found over at I really like the positive spin she put on hospital stays. I myself may have to write up a "Top Ten Things about Hospital Stays" but for now, I give you Sydna's top ten. Enjoy!

With an impending hopsitalization on the horizon, I thought I would compile a list of my favorite things (a.k.a. the silver lining) about the hospital (affectionately referred to as Spa Seton). Mind you ladies and gents, these are in no particular order...

1. Rather than having to get up each morning, put on makeup, curl my hair and find something cute to wear, I can simply put on my pajamas each morning, or rather, keep them on! What's not to love about an excuse to wear pajamas all day? And, it's expected. I can even get coffee in the gift shop or go across the street to Caffe Teo for a spiced apple cider and they see my PICC line and bam, pajamas are instantly perfectly acceptable attire. 14 days of pajama bliss without makeup and hair!!

2. No dishes!! I loathe dishes. They are the bain of my existence and the number one reason why I don't cook all the time. I hate doing them. I hate drying them. I hate putting them away. Dishes slightly stain the ritual of cooking. For 14 days I have no dishes but I get home-cooked meals! Sign me up :)

3. Nebulizer treatments. Now hold on before you get too excited - not so much the actual treatment as it's not my job to remember them! The RT (respiratory therapist) is supposed to remember my treatments. :) She comes in, sets it all up, hands me the cup and I breathe. Hmm, I could get used to this. Afterwards, she rinses it out and we repeat every four hours.

4. Coffee and other breaks! My doctor gives me a pass to leave for up to four hours each day. It doesn't always work out, but the nurses are super nice and they don't count the trip across the street for coffee as a "pass" so I can indulge in lattes and pastries from La Madeleine (a stone's throw from the South entrance), Caffe Teo and the cute gift shop in the North lobby. And since we all know I'm a glutton for coffee, this works out well.

5. Battle scars! Growing up, I was always the caution kid. The kid who never broke any bones and rarely came home with cuts and scrapes (minus the incident where I thought I could magically skateboard down a steep drive even though it was my first time and instead managed to reacquaint my stomach with both gravity and the gravel street). When I leave the hospital I come home with a PICC scar. You're thinking I'm mental but finally, I get to be like the other kids and show off my battle wounds!! I now have four of these white scars in my arm and they all have a story to tell.

6. The craft-o-matic bed! Remember those commercials for old people where the bed bends in all these funky shapes to make it more comfortable? Guess what ladies and gents - the beds at Spa Seton do the same thing. And you too can enjoy them, but only if you are lucky enough to stay there. They bend up, they bend down and they rise up. Adam and I like to climb in to the tiny bed, put up the guard rails (careful, it gets rowdy in our bed!), raise it all the way to the top and watch TV. The bed goes nearly to the top of the room. It's quite entertaining on a rainy day :)

7. Friends! We're all busy and we all have lots of commitments and obligations. But, I get to see more of my friends when I'm in the hospital because they love coming to visit me in the spa. :) In two weeks' time I see more of my wonderful friends than I see in a six-month period I bet. It's a great way to catch up!!

8. Nap time. I adore nap time. I took it for granted in kindergarten and all during camp, but now, I love it! I just don't get naps anymore. Ironic how that works out :(. Needless to say, I have ample time to nap at Spa Seton. There is nothing better than curling up with my pillows and Lefty (my squishy elephant, aptly named Lefty so as not to be confused with the Republican elephant) in the late afternoon when the sun peaks through the curtains.

9. Food network! I can watch food network all day long and not feel even the slightest bit guilty! Then I get out my laptop and save all those delicious recipes to my recipe box :) I could watch this channel almost all day and never get bored. It's fun waking up, catching the news, actually seeing the sunrise (usually I'm at work before the sunrise and my office is sans window so I usually have no clue what the outside world looks like until I leave at 4p) and then watching the food channel, reading, playing games and not feeling like there is something I should be doing (e.g. dishes, cleaning, etc.) As I said, I don't have to make dinner, do the dishes, clean up my apartment, etc. It's like a vacation from life and it's mundane chores.

10. Beef tips. I know, this seems out of place. Let me explain. My mom is a fabulous cook and she never cooked things like beef tips in brown gravy on rice. This is Luby's food!! Damn, it's good. Sunday evening is beef tip night. I could eat this every night. Good thing the CFers are on double portions so I can have twice as much. Sorry A, no dinner for you on Sunday nights - I'm eating my 2nd portion!!!
So what do you guys think? Do you have your own list? You can either leave some of your favorites here in the comments section or contact me if you'd like to write a guest post :)