Saturday, November 7, 2009

Should CF Women Have Babies?

I received this email over on Facebook from a women who is reaching out for help. I wanted to share it with you guys and hope to get her some feedback. Please leave your comments for her here or you can always e-mail her directly.
ronnie i am 21 i have cf and all my life i was told im dying give up all the negative stuff on top of that my mom was in lighter words insane honestly unfit to raise me and know im happy to report i went from living with her being 80 lbs and 40% lung function to being with my now husband and i went to 122lbs and 72% function im very happy but heres the problem my doctor isnt happy she actullay is mad im not better and my husband and i want to have children and she sat there in front of me in clinic and told me i was dying and i shouldnt bring a child in to this world with a dying mother and told me if i did get prego i should terminate if it had cf but thats like my mother terminating me and you you know what should i do i know i need my doctors on my side to go through a pregnacy it says so on all the websites and that it is possible and it could be healthy and all that should i try and find another cf doctor report her for paiteint doctor abuse if so how i live in houston texas there are no other cf adult care doctors but her in my area i know your a guy but i really need help i have just learned in the last year all about my illness for my self lost my medicaide lost ssi everything cause of my mom and she never told me anything about my illness so im really just now learning about it and i have no clue about anything out there to help my husband and i with any problems we have such as prescripton cost doctor rights anything i really need help from my cf community please feel free to contact me on here or by email and if you need other people opion feel free to post this i need all the help i can get from anyone who can give it thank you
I'm sure that she would love to hear from some of you cysters out there who have babies of your own. It sounds like she is very interested in carrying a child, but seems a little uncertain about bringing a child into this world without being able to guarantee it a "normal" upbringing. What would you guys say to her? I'm sure any feedback would be much appreciated.

Friday, November 6, 2009

The First Time I Did 7% (HTS)

Some of you may be thinking, "wait, 7% of what?". So let me explain...7% saline solution is a pretty new treatment in the CF circles. It's exactly what it sounds like, it's salt water in it's most basic form. They first became curious about this "drug" when they discovered that CF surfers in Australia had much higher lung function then there non-surfing CF counterparts. After years of clinic trials and research, 7% saline solution was born. Some of us refer to it as HTS (Hypertonic Saline) or HyperSal. If you're curious, I currently do two HTS treatments a day, but this post is about my first experience with huffing "salt water".

The first time I ever inhaled 7% was while I was in the hospital more than a couple of years ago. I remember the docs asking me if I had tried it yet and if I wanted to give it a whirl. They also said that it can be quite an experience the first time and recommended that I try 3% which is 7%'s weaker cousin. Being the big old bad man that I am, I of course refused and asked for the big gun. They told me to expect to cough a lot while getting used to it, which I responded to in I'm sure a very smart arse kind of way with, "That's the point isn't it???".

My next treatment came a couple of hours later. After sucking in the albuterol and atrovent it was time for the 7%. Oh. My. Goodness. I seriously thought I was inhaling sand paper. I couldn't take a deep breath without the back of my throat feeling like it was being attacked by the tickle monster. I coughed liked you wouldn't believe. I'm not sure how much of the HTS I actually inhaled because I spent most of the time coughing. I couldn't believe that there was another single CFer in the whole wide world that could stand to do that stuff. I couldn't be defeated though and I tried my hardest to suck that thick salt air deep down into my airbags. I'm not going to compare it to torture, but it surely wasn't Magic Mountain at Disneyland. Needless to say, my first experience with HTS wasn't exactly a pleasant experience.

Fast forward to I said up above, I now do 7% twice a day and tolerate it just fine. It's just something that my lungs (and throat) had to adjust to. I actually didn't start doing it at home until earlier this year and sadly, I must admit, it was because of laziness. Prior to the pre-made capsules that they have now, they were distributing bottles of 7% that I had to access with a syringe and then shoot into my neb cup. After hearing so many fellow CFers swear by HTS and it's ability to improve lung function, I decided to bite the bullet and start doing HTS at home. As luck would have it, they just recently started using HyperSal at my pharmacy which comes in pre-made vials just like Pulmozyme or albuterol. So now I have absolutely NO EXCUSES.

Oh yeah, one more thing on my first experience with 7%. Remember how I told them to just give me the big dog because I was such a big old bad man? Well, after that first 7% treatment I requested that they bring the 3% instead. I just couldn't stand all of the coughing. But wait, that's the point isn't it?????

**Special note for all of you that receive my email updates from FeedBlitz. That service will be ending today. My trial period is up and I refuse to pay for the service. I hope that you continue to follow this blog and if you have any suggestions on other FREE email services, I would gladly take them. You can also look into following this blog through a blog reader (Google Reader, Bloglines), the RSS feed or any other way you know of :) Thank you for your continued support**

Thursday, November 5, 2009

Family, Great Weather and Golf

Every Thursday I like to write a post about things I am thankful for. This post will be mostly pictures as, what do they say? Oh yeah, pictures are worth at least a couple of hundred words :) I had a blast with my family out in San Antonio. My dad recently moved (back) there to work for the VA as a hospital administrator. He and my step-mom Denise recently (as in one week ago) moved into a new house in a really pretty neighborhood. I actually didn't spend too much time in it as we were on a golf course almost my whole time there (which was fine by me!). We did however have a family bbq with some cousins and my aunt and uncle who were in town. They were in town to go to the Notre Dame vs. Washington State football game (my uncle and cousins are HUGE fans of ND). All in all it was an absolutely great trip. Now I just hope to get my dad and Denise out to Arizona!

Little family portrait (Denise, Me, Dad)

Probably the coolest picture I took all week.

Golf course we played at the first day. It was settled in a canyon.

A super lonely golf cart.

This was the course we played at the second day.

We pushed a water stand over to lock my dad in the bathroom.

He asked nicely so we let him out!

My uncle Phil has "mad game".

This was the birdie put my dad choked on (sorry dad, had to do it).

A course with a view.

Pretty cool shot of my dad getting out of the bunker.

All of the rabid fans walking into the Alamo Dome to watch Notre Dame.

All of the band stuff was actually pretty cool.

So can you tell that I'm my father's son?

Wednesday, November 4, 2009

Why Runners Like To Feel the Burn

A good friend e-mailed this NPR clip to me today about running that I wanted to pass along to you guys. It's called "Why Runners Like To Feel the Burn" and it is very interesting. If you have some time today, I would highly encourage you to take the time to listen to it.

What compels hundreds of thousands of runners to compete in marathons every year? Ira Flatow and guests discuss running research — from how humans are adapted specifically for long-distance running to why working up a sweat might be good for the brain, as well as the body.


Daniel E. Lieberman, professor, Department of Anthropology, Harvard University, Cambridge, Mass.

John Ratey, M.D., author, Spark: The Revolutionary New Science of Exercise and the Brain, clinical associate professor of psychiatry, Harvard Medical School, Cambridge, Mass.

Link to audio:

I also wanted to post this cartoon that Mandi forwarded me today. Now, keep in mind that she NEVER forwards anything, but she said she had to because she laughed out loud. Needless to say, I laughed out loud also.

The Truth About Dinosaurs

Tuesday, November 3, 2009

Top 10 Traits Cystic Fibrosis has Instilled in Ronnie

As some of you have read in past posts, I often say that I'd rather have Ronnie with CF, than date the man Ronnie would be without it. I truly mean that. I believe Ronnie has been shaped by his CF and many of the character traits that I have fallen in love with have been instilled in him because of his CF. Here's the top 10:

10. Reliance - When Ronnie is sick, he is forced to rely on others. When Ronnie's well, he insists other's rely on him. He understands the beauty of symbiotic relationships. He understands the give and take in a healthy relationship. I love that he isn't too proud to allow me to take care of him when he's feeling off and his insistence that others rely on him.

9. Acceptance - Ronnie's accepts the fact that his has CF; he embraces it. He has realized that not everything is in our control, and when you can't control a reality what can you do? Accept it. Since he was young, Ronnie has owned his CF, been proud of it...even flaunted it. There is much to be said about someone who can take a challenge, accept it, and embrace it.

8. Discipline - It is not easy to get up an extra 30 min to an hour and a half early every day before school. It is not easy to remember to take meds every morning. It is not easy to exercise 6 out of the 7 days in the weeks, especially when it hurts. To manage his CF, Ronnie has been required to do all of these things. The result? Discipline.

7. Optimism - Ronnie understands there are 2 ways to view life: the glass half empty and the glass half full. Many people who have hard times or struggle at times find it all too easy to view the glass half empty. Ronnie, on the other hand, has realized that CF can present daily struggles, and makes it very easy to ALWAYS see the glass half empty, so he has made the choice to always be optimistic.

6. Perseverance - CF has a way of knocking you on your butt when you least expect it, and often times knocking you back down right when you get back up. In order to continually get back up, you have to persevere. A good example of his perseverance is when he was in for 50 days last winter. Each week he would work out, rest, eat well, each week he thought it would be the week he could get out, and each week his lung function didn't budge. So what did he do the next week? He worked harder!! And eventually, after much hard work and perseverance, he got out.

5. Patience - Ronnie is the most patient person I have ever met. He understands that not everything will be done in his own timing. Not better after 30 days in the hospital? Wait until you are better to get out. Want to go on vacation, but it's time for a hospital stay? Wait to go on vacation. Want a cure for CF? Wait for a cure.

4. Appreciation - Ronnie appreciates every day. Being told from a young age that your life may be shorter than most, you begin to cherish every day, every memory, every breath. When it comes to life, Ronnie takes it all in. He notices beautiful sunsets, a good cup of coffee, a good joke. He never rushes. Why rush life, he asks? He enjoys every day and doesn't let those around him busy themselves too much so that they don't stop and smell the roses.

3. Perspective - Ronnie is really good as putting things in perspective. I often fret about the little things. The things that a year from now won't matter. He has a great perspective on life. He enjoys the good, brushes off the bad and realizes that most things here on earth won't matter in the end.

2. Faithfulness (and Trust) - Ronnie has eternal faith. He truly believes that God will work everything out in His way and in His timing. He continues on, praying, trusting and believing that everything with work itself out. When things don't work out the way he envisioned or hoped they would, he embraces the reality with a smile on his face, trusting it is the way it should be.

1. Humor - Sometimes when times are hard, all you can do is laugh. Ronnie can make just about anything funny. There aren't many occasions when Ronnie isn't cracking a joke or any topic that is off limits to be the butt of one or two jokes. With only one of two words, Ronnie can have me laughing with tears running down my face. He is the funniest person I have ever met!

**PS - These are in no particular order. I "hmm'ed and haw'ed" and couldn't decide on a good order!!!

Monday, November 2, 2009

Who's That Lady? (Who's that lady?)

A lot of you have asked me various questions regarding Mandi, who she is and her role in my life. I've directed many of you to different blogs she has written, but I thought for those of you who have come on board to this blog recently, that I would make it easier for you. Please click on the links to get to know Mandi a little bit better.

What is Mandi: Relationships and CF
Where is Mandi: The Night We Met

There are many other blogs that Mandi has written if you haven't gotten your fill yet. Just go to the label cloud and check out Mandi Monday, girlfriend or relationships. If you ever have any questions for Mandi please don't hesitate to contact her through this blog or through her Facebook.

Here's a little look on what we do for fun...

Sunday, November 1, 2009

Saved by the Blog: One Woman’s Journey with Lung Transplant, Listing, and Life.

Guest Post by Piper Beatty

As a tried and true cystic, I sometimes like to pretend that I’m prepared for anything on the health front. 30 minutes of hardcore shaking while inhaling what essentially boils down to ocean water? No problem. Hospital stays complete with those middle-of-the-night blood draws that always seem to get ordered no matter how much I protest? Bring it on. CT scan with contrast and a little barium thrown in for good measure? Seriously, can’t you do any better than that?

Nope, there’s no denying that we CFers are a tough breed, ready to face just about any obstacle with generally good humor and the knowledge that we’re doing all we can to improve our health today and in the future. And besides, we’re experts at this whole “medical thing,” right?


So you can probably guess that it came as a bit of surprise to find myself standing in my doctor’s office fighting back tears and wondering when I was going to wake up from what had to be a bad, surreal dream. “Transplant?” I thought wildly, “no way! That’s for other people, or at the very least for the very distant future! There is NO. POSSIBLE. WAY. that what she’s saying right now about transplant referrals and evaluations has anything to do with me.” I honestly think that in that moment I had a pretty good idea of what runs through a deer’s mind when it sees those headlights approaching at 60 MPH. And I’m pretty sure that’s when instinct kicked in and took over.

My first instinct was to run, as fast as I could – literally. We all know that exercise is a HUGELY important part of CF care, and you don’t have to look any further than our beloved RSR blog to see how much of an affect running (and walking, swimming, lifting, bike riding . . . do I need to keep going here?) can have on your life and your lung function. So immediately after hearing the news, I took off running my own “miracle mile.” Using O2 as needed, and monitoring my HR, I started exercising more intensely and more aggressively than I ever had before. I was fixated, and it paid off as I started to grow stronger and developed more endurance. In fact, by the time I had my official transplant evaluation later that same year, I not only blew everyone away during my cardio exercise stress test, but I also walked 2200 feet in 6 minutes without oxygen, putting me firmly in second place for my center’s all-time record. Um, yeah, I was proud.

Despite all the benefits of exercise, however, I continued to get sick often and my PFTs remained relatively low. Then, after a couple of repeated back-to-back infections that resulted in lowering O2 sats despite my best efforts and that of my awesome healthcare team, instinct #2 kicked in: stand still, open eyes wide, and watch the headlights approach with statue-like serenity. This is the period I refer to as my “sick phase,” because it is honestly the first time in my 27 (nearly 28!) years of living with this disease that I felt genuinely “sick” in the truest sense of the word. My lungs were failing, I reasoned, and I needed a transplant, so why was I working so hard to keep the lungs I have now “healthy,” especially when the results seemed so mediocre?

And here’s where all of you come in, because it was largely the online CF community that helped snap me out of the dreaded “sick phase.” I don’t know if you all have ever sat down and read through some of the blogs on here, but we’ve got some amazing “cysters” and “fibros” out there sharing their stories. CFers who ran half-marathons months before their transplants, who have climbed mountains with their new lungs, who are starting families, living miracles, and surviving into their 40s, 50s, and beyond both with and without transplants. To my inner deer in the headlights, these messages were like a gentle nudge (okay, sometimes more like a forceful shove) off the highway. I realized that having CF is all about being as strong as you can possibly be and enjoying life to the fullest, two lessons I thought I’d learned as a fun-loving, active, and relatively stubborn CF child – but I guess we all need a reminder now and then.

In the past few weeks/months, I’ve decided to live by the motto of “proactive waiting.” For me this means making myself as strong as possible, both mentally and physically. I’ve read up on transplant to help prepare myself and make sure my expectations line up with the reality of what is, to put it mildly, a major surgical procedure. I’ve also read as many success stories as I can, and talked to many CFers who are living their dreams with their new lungs, because I know that positivity and believing in the best possible outcome is part of a full recovery. A great transplant role model of mine told me that “if you walk into a transplant, you’ll walk out of it,” and I’ve been trying to live that way each day: walking and strength training to keep my body healthy, meditating to relieve stress, and finding ways to stay productive, happy, and social even if I just plain don’t feel well that day (my puppy, family, and my friends help a lot on that front!).

Most of all I hope I’ve learned to trust, both in myself and in the greater plan. I trust that lungs will come at the right time, and I trust myself to be ready to receive them as the true gift of life that they are. So that when that call comes, I can walk into it with what I consider to be true “CF style”: a strong body, a positive mind, and a life well lived – with a wide-open future.

And no oncoming headlights.

Bio: My name is Piper, and I'm a 27-year-old CFer who lives and plays in New York City with my adorable puppy. I was diagnosed at 6 weeks old and started representing the CFF at fundraising events just a few years after that, so I've always believed in the power of spreading CF awareness and the importance of fighting for a cure. With the help of encouraging parents, I went to college and then on to grad school, after which I practiced as a lawyer on Wall St. for two years before taking a break to concentrate on my health. A year ago I started preparing for a double-lung transplant, an ongoing process throughout which I have been blessed with incredible support from my amazing family, wonderful friends, and the phenomenal doctors at New York Presbyterian Hospital. I consider this phase of my life a great exercise in patience, trust, and learning to enjoy life no matter what it throws at you, and I'm also looking forward to the future with amazing new lungs!

Note from Ronnie: I just wanted to give a big thank you to Piper for writing an outstanding guest post for RSR. Her blog ( one of the first that I followed near the beginning of the year and remains one of my favorites. I love the pro-active attitude she has had and continues to maintain even through this transplant process. I encourage you to leave Piper 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.