Saturday, February 13, 2010

Do you procreate if you have bad genes??

I found this article and the subsequent comments very interesting. To view the comments and full article, click here.

Do you procreate if you have a bad gene? Discuss

04. Still AliceI’m reading a gripping and scary novel called “Still Alice,” by Lisa Genova, about a Harvard psychology professor who develops early onset Alzheimer’s. The novel is written from Alice’s perspective so you are in her head as she slowly loses her grip on reality and what’s going on around her.

Bear with me, this does relate to parenting: After she learns she has the disease, she is told that it is genetic and a test exists to screen her three grown children. One of her grown daughters is undergoing fertility treatment to try to have a baby. Alice thinks about what she would have done had she known she carried the gene before she got pregnant.

Would she have conceived these children or taken precautions to prevent them? Would she have been willing to risk the random roll of meiosis? Her amber eyes, John’s aquiline nose, and her presenilin-1. Of course, now, she couldn’t imagine her life without them. But before she had children, before the experience of that primal and previously inconceivable kind of love that came with them, would she have decided it would be better for everyone not to?

This is interesting because most of us carry a gene for disease in our family history. My mother has diabetes and I knew the gene could be passed on. I decided to have children. Part of my decision was based on the fact that my mother took good care of herself and lived a normal life without complications (she continues to do great). I also developed diabetes at 28 after having gestational diabetes with my first pregnancy. My oldest daughter does not have diabetes; my youngest was diagnosed when she was 4. Don’t know how I could possibly have regrets. She lives a normal life on the insulin pump and is perfectly healthy. I would make the decision again today.

In the book “Still Alice,” her daughter decides to have children. Since she is doing in vitro fertilization, they will screen the embryos and only implant those without the gene for Alzheimer’s.

To view the full article and comments, please go to

Friday, February 12, 2010

Confessions of a Chronic Cougher

I received a great question by a mom over in the CysticLife community that I wanted to take the time and answer over here on RSR. Here is her background story with (bolded) questions:

levi has been sick for about a week and now he is to the point where he is coughing while laying down, running around and basically on and off all day. its a wet junky cough and i swear i have been using my stethoscope for the past 3 1/2 years and i never can tell what the heck im hearing if its a wheeze if its not? so anyways the last three times he has been in over the last few months with colds he has not cultured anything not normal so the doc has been going back and forth as to whether or not to admit him so i really dont want to push taking him in because id hate to see him go in at this age. last time he was a champ but he was a little over 2 and honestly would get poked and then forget about it but now he is older and brighter so he knows whats coming he still does really well and isnt afraid of the doctors or anything like that but we want to do what is best for him. he usually gets a cold and starts with a runny nose then he starts to get a wet cough and then he starts the wheeze so most of the time he starts an oral antibiotic and then prednisone. he already does albuterol 3 times a day and his vest 3 times a day for 30 minutes. we started that after his last hospital stay because they did it 3 times a day when he was in so we thought is three better than 2 and they said yes so why the heck wouldnt we continue that if it is better so right now he is doing his vest 3 times a day for 30 minutes and he doesnt mind it at all he actually likes it because that is the only time we let him watch tv that way he looks forward to it and an hr and a half is enough tv in my option for a 3 year old. so anyways he is already doing that all the time so is there anything else you think we could be doing to help him. its hard to because he totally wants to play and run around but then he just coughs more. i usually let him play until he decides its too much or if hes coughing a ton we just do something else like draw or something more calm. anyways i just totally rambled so we are at that place of not knowing what is best. any suggestions or insight to how you feel when you are going through something like this. its hard because he can only tell us so much of how he is feeling. we know his body pretty well but only externally from what we see we see and hear but we cant tell how he is feeling. basically we do all that we can he never misses a treatment well i shouldnt say never (well maybe 2 or three when we go to disneyland or the beach or something fun but basically we are all over his health and do all that we can to keep him healthy. so any advice would be awesome! sorry for rambling. k the boy is off the vest gotta run. we will be in touch. have a great night!

First of all, I can't stress enough that it sounds like you're doing a wonderful job in raising your boy! It sounds like you've found a nice balance between his life and his cystic life. A couple things I would say to you however...

One, coughing does not always mean sick. I'm a chronic cougher. There, I said it. No seriously though, I cough all of the time. I've coughed since I was his age and I continue to cough now. I coughed when my lung function was over 100 percent and I cough now with it in the 60's. Point is this, it's important to look for other signs that your child is giving in order to determine an exacerbation or not. You can check mine off the list every time I get sick. I'm more tired but I sleep less. I have to force myself to eat. I wake up in the middle of the night coughing; all night long. I usually wake up more tired than when I went to bed. I have a REALLY tough time motivating myself to exercise. My stools float more. They're stinkier. I'm generally nauseated. And I can't get my mucus to ever be clear at any point of the day. Whew!! I know, quite a list. But, it's important to note, that that is MY list. As a parent, you want to make mental notes about some things that ALWAYS happen when they are really getting CF sick. For me, coughing isn't one of them. I'm always doing it.

It sounds like you have your son on a very strict treatment regiment. Here's a couple of things I would try to switch it up. Have you ever thought about hand pounds? For me (apart from running), nothing works better at getting the mucus up and out. Ultimately, that's what is important. Getting the gunk out of there. If you can manage the mucus, you can manage Cystic Fibrosis. Is there something that ALWAYS gets your son coughing? It sounds like it may be just running around and playing. I would suggest having him do that more. There's nothing magical about the vest, I hate to break it to you. I mean, it does a great job for most people in doing it's job, but it's not the only horse in the race. We as a community have to figure out what works best for us at clearing out our lungs and forcing us to take deep breaths. You, as his mother, have that responsibility for your young son.

Also, to get back to what you hear when you listen to Levi. You may never hear him wheeze. In my 30 years, the doctors have told me that they have heard me wheeze less than 5 times. In fact, 9 out of 10 times, even while in the hospital, they say I sound "pretty good". Maybe it's because of all that coughing I'm doing :)

Last piece of advice. Use your instincts as a mother. There's no guide out there written specifically on how to manage your son's CF. We're all different. Sure, we can take bits from some and pieces from others, but like I say to people all of the time, "You're CF has NOTHING to do with anybody else's CF". The proverbial different strokes for different folks. Don't ever make decisions based on being the mother of a child with CF; make decisions based on being the mother of a child.

Thursday, February 11, 2010

Thankful for Random Acts of Kindness

Today, I am SOOOOO thankful for random acts of kindness. I am fortunate to experience many random acts of kindness by many of you pretty regularly, but I wanted to point out one that really touched me recently. I'm not going to mention any names (since I haven't got their permission to do so), but a mother/daughter team within the CF community really put a smile on my face this week.

It all started with an email on CysticLife that I received on Sunday:

Very Nice Cyster: Hey Ronnie, so being from Louisiana an all we celebrate Mardi Gras pretty big and of course eat ALOT of King Cake.. We have some really good bakerys that make them fresh daily and ship them out all over the place and me and my mom would LOVE to send You and Mandi one .. we just need to know where to send it

Me: Wow!!!! What did we do to deserve that?!?!? And what exactly is King Cake? You guys are too good to us :)

VNC: well i dont even know how to describe it lol.. it kinda looks like a huge donut with iceing and some have fillings but it taste nothing like a donut.. it taste soo much better .. the tradition is that there is a baby hidden in the cake and who ever gets the baby has to buy the next king cake .. lets just say in the one month of the year when they make king cakes i gain bout 10 not really but im sure i gain some haha...You guys are AWESOME for creating this site and mom an I enjoy it soooo much.. so we thought you might enjoy a king cake .. its soo much better than jelly beans haha

Me: I look forward to it!!! Should I have it tested for poison first? You don't hate me right??? :)

VNC: lol I promise there is no poison in it.

And wouldn't you know it, Wednesday afternoon I received a big ol' package with "KING CAKE" written across the top. It was a very colorful box that looked like a big Mardi Gras party. Inside was the real treat though. When I opened the box, I discovered beads, a Mardi Gras mask, more beads, a King Cake, beads, a story explaining the history of the King Cake and, oh yeah, a handful of beads. I was beaded out today!

It really felt like this family was sharing a part of themselves with me and I found that to be very special. I can't explain to you guys how happy I was to receive this package and that fact that they thought to include me in there Mardi Gras cheer was very humbling. I certainly never expect anything like this ever to happen, but when it does, it really warms my heart. We have such a strong, loving and caring community out there and I am so happy that I'm able to be a small part of it.

Wednesday, February 10, 2010

Made a Turn During a Hiking Blog

Yesterday I did something that I haven't done for quite a long time. Hiking. In fact, I haven't been on a hike since Mandi and I got engaged. We actually hiked the same trail yesterday, but didn't quite make it to the top. It was a very leisurely hike, but still challenged me quite a bit. To be honest, I wasn't really looking forward to it. I had just gotten into a nice groove with work, when Mandi came into the office and said, "Get your shoes on, we're going for a hike!". Uh, ok.

I don't know what I would do without that girl. Well, besides work more but work out less :) She does her best to keep me from working 10 hour days 7 days a week and for that, I am grateful. The problem is, once I get rolling and focused, it's hard for me to snap out of it. Mandi has figured out a good way to work through that, it's called "leaving me with no other choice by using my own words against me". She will literally quote to me things she has heard me say to other people to motivate them or to get the message of exercise and lung function out there. I mean, I can't really argue with that. And let me tell you, I love her for it.

During yesterday's hike, Mandi continued to push me all the way to the end. She's a great coach. She's a great motivator. She's a great fiancee. I've really found something special in her. I know for a fact that I wouldn't be where I'm at today without her and she's the motivating factor for me to get to where I want to be.

It's funny, this blog was going to be a blog about switching up your exercise routine to keep your body guessing. Hiking is a great way to switch it up. Somewhere in paragraph two I made a turn and never recovered. Oh well, I'll just have to cover that topic another day!

Tuesday, February 9, 2010

Top Ten Things I Love About My Morning Walk

If you've been reading this blog for a while then you know that one thing I highly recommend is a morning walk. I truly believe that for me, my morning walk is more important for me than even some of my treatments. Not only can it serve as a good physical treatment, but it can serve a good mental treatment as well. If you're thinking about starting an exercise program but just don't know where to begin, I suggest starting with a brisk 15 minute walk first thing out of bed. Those that have tried have reported back nothing but good things!

So here it is, the top ten things I like about my morning walk:

10. Get to spend some quality time with my (four-legged) girl

I don't know who is more excited in the morning, me or Jezzabel...wait, that's an easy one, it's by far JBell. She can barely contain herself as I put on my shoes and wait for her command, "Get your leash".

9. It's peaceful

Often times I find that it's just me and the world...and people in their cars leaving for work.

8. It's nippy (cold)

Arizona doesn't hardly ever get down right cold, so we have to find joy when it's just a little bit cold outside, even if by "a little bit", we mean 50 degrees.

7. Feels good to get up and start moving right away

If I transition from my bed to a couch or chair to drink my coffee first, it still kind of feels like I'm sleeping. There's just something about getting right up and at em!

6. It always smells so clean outside first thing in the morning

I know you guys know that smell I'm talking about (unless you live in NYC) :)

5. It's a good time to start preparing for the day

I'll often go over my checklist for the day and start thinking ahead of time about priorities that need to be done first and those things that I can push off until tomorrow :)

4. It forces me to take deep breaths before my treatments

The morning walk definitely serves as a good lung exercise. I find that if I take a walk first, my lungs can generally expand more during my nebs.

3. It gets me hungrier

Often times, instead of thinking about what I have to do that day, I just think about what I'll eat when I get back home.

2. I cough up more junk during my morning walk than I do my morning Vest

If I ever got lost on my morning walk, I could just follow a trail of my mucus back to the house. It gives a whole new meaning to the yellow brick road :)

1. My lungs always feel more clear on the days I get my walk in

I'd say this one is pretty self-explanatory. Bottom line: I feel better the days I go for a walk first thing in the morning.

Do you guys take walks in the morning? If so. what do you love about them? If not, why?

Monday, February 8, 2010

Confessions from a Football Dummy: Superbowl Edition

Welp I said it. I'm a football idiot. I get the know, 4 quarters, touchdowns, field goals, I even know 4 downs. I get the basic rules. But when it comes to team names, strategy, players and the like, I'm LOST. Ronnie on the other hand is a football wiz kid. He knows current players, past players, records, strategy, EVERYTHING. (For those of you who don't know, Ronnie coached football for 7 years and played through high school...which by the way, he'll never tell you this, but he's in the high school football hall of fame. I found that out only recently, but it's a fun fact that I thought I would share with you!!) Anyways, I tell you all of this, to explain the incredible divide between my football watching and his. Every weekend we watch football, both college and pro, and I generally sit, uninterested and unhappy that we're "wasting a day" with games. Buuuuut the Superbowl provides us both with entertainment. He watches the game, and enjoys the commercials, I JUST watch the commercials and half time show.

I must say, I was underwhelmed by the ads this year. In fact, I was trying to think of my favorite, and I had a tough time even remembering the ads that were on. I did notice that Doritos and Bud Light were all over advertising this year. I wonder if they even have an advertising budget left, and it's only February.

I loved Carrie Underwood's National Anthem at the beginning. But I'm pretty sure it could have been terrible and I would have loved it. I just love Carrie Underwood. She is so adorable and man can she sing.

As for the half time show - who decided that The Who would be the half time show? That's all I have to say about that. My favorite half time show was still years ago when Bon Jovi, Justin Timberlake and Britney Spears performed together. I think that was like 5 years ago though, so I'm not sure who's been organizing these half time shows lately, but I'd really like them to step up their artist selections!!

ANNNND there you have it. Those are my takeaways from the Superbowl this year. What were yours? Did you have a favorite ad? Please refresh my memory and tell me a few. Did your team win? Lose? What'd you think of the half time show? And lastly, who can tell me how they get the computer generated yellow line on the field to not show up on the players?

Sunday, February 7, 2010

What I Did to Increase My Lung Function

Guest Post by Nicole

Hi everyone! After reading my blog (link to and seeing how I greatly increased my PFT’s in one month‘s time, Ronnie asked me to write about how I did it. RSBR is so inspiring and gives so much motivation to CFers, that of course I was honored. So thanks, Ronnie, for this opportunity!

Now, when I sat down to write this, the first thing I thought of was “well, of course, medications are the reason why my lung function went up.” That is part. In addition to my normal daily routine, over the last few weeks I have been taking Singulair, Augmentin, 7% hypertonic saline and Tobi (because it is my “on” month). It is possible that this combination had some miracle powers to it, but I have a slightly different theory.

One month ago, my FEV1 was 35% and my FVC was 48%…the lowest I ever remember my numbers being in recent years. This. Scared. Me. I started on the above routine, but most of all, I stuck with it. Compliance is key in cystic fibrosis. I have always been pretty good about treatments and pills, which I believe has kept me healthy this far. That being said, it has only been the past 6 months or so that I’ve done Tobi like I should and this is the first time I’ve stuck with the hypertonic saline. It is a pain in the ass to sit for treatments that last over 3 hours a day. There are plenty of other ways I’d like to spend my time. But this improvement made me see that it is worth it. Yesterday my FEV1 was 51% and my FVC was 73%. My goal now is to get my FEV1 in at least the 60’s and my FVC in the 80’s. I will continue my compliance with medications and I am going to start an exercise routine because I know, as do all of you who read RSBR, that makes a difference.

Now, I know there are many CFers that feel like they can’t improve their PFT numbers; that once their numbers drop that is their new baseline. Well, I don’t believe that is true. I think that with medications, compliance, and exercise it is very possible to achieve greater lung function. I challenge you to give it a try, push yourself and in a couple months you WILL see a difference. It is so worth it. The couple hours a day of treatments can add years to your life.

There is one more thing I would like to talk about and that is asthma and allergies in CF patients. A month ago, when my numbers were so low, I felt short of breath and had a tightness that just wouldn’t go away. That is when I added the Singulair, which I had taken during Spring allergies earlier this year. I must say that I think it made a HUGE difference. This Fall season is hard on a lot of us and I encourage you to look into different treatments for those symptoms. My doctor also told me to start taking Zyrtec to see if that helps me even further. Sometimes we are so busy treating CF that we forget about other underlying issues. It is very common for people with CF to also have asthma -if you have wheezing, shortness of breath, or tightness talk to your doctor and see if asthma or allergy medication may be beneficial to you. I felt like nothing was going to make me feel better, and who knew one little pill would do so much?

I hope that you find inspiration (whether from my post, RSBR or from another amazing CFer) to give it a try and take charge of your life. You CAN improve your situation and I’d love to hear how you do it!


My name is Nicole and I am 25 years old. I was diagnosed with CF at age 2 and with CFRD at age 13. I am an Army wife and have been married to my wonderful husband Rob for 3 years. We are originally from NY, currently stationed in NC and will soon be moving to GA. I enjoy traveling, cooking, and spoiling my furbaby Brooklyn - a 3 year old rottie rescue. My next goal in life is to overcome infertility and experience the joys of motherhood.

Note from Ronnie: I just wanted to give a big thank you to Nicole for writing an outstanding guest post for RSR. She is a great example of a CFer who decided that she could do more to manage her disease and then acted upon it. She has shown that although it may take some changes, through a little bit of hard work and dedication, we CAN have some control over this disease. I encourage you to leave Nicole your encouraging comments as well as any questions you may have!

If you are interested in writing a guest post for RSR simply send me an email with a little bit about yourself and what you'd like to write about.