Blog Archives

New Lungs in Texas

Today may have started out rough but it sure ended up being a great one. I forgot my work laptop at the office last night so I had to drive 45 minutes round trip to pick it up. Shortly after my husband left for work, I noticed his ID badge was sitting on the counter so he had to come back and get it. Hot messes! So on to the good stuff…

Two weeks ago, a fellow CF Wife whose husband is #1 on the transplant list waiting for a new pair of lungs, had a dry run. A dry run is essentially a heart breaker. You spend so long in declining health and pain praying every day and night for a second chance at a better life. Naturally, when you get ‘the call’ it literally changes everything. Unfortunately that call for Darren ended with a poor pair of lungs. But late last night there was another call, one that had positive news. They rushed to the Baylor University Medical Center and this time the lungs were pink and healthy, meaning time for transplant!

The surgery itself can take anywhere from 6 – 12 hours and we are still waiting on news. I’m sure Dana is just sitting with her husband, making sure she’s as informed by the doctors and praying. I can’t wait to hear about his recovery and I just kindly ask that you lift up your prayers for my fellow CF Wife and her brave, fighting husband. He spent 49 years with a nasty pair of lungs so he truly deserves this fresh new pair for 49 more years! :0)

I leave you with a picture that came across Facebook and is so poignant that is should speak for itself. Please sign up to make a difference today and be sure to spread the word. There is no reason to be afraid of being an organ donor. Be informed!

Sign up to be a donor today!

There’s power in prayer… praying for Darren to finally breathe easy!

Many the Milestones

I apologize for my absence the past 2 months, however it’s with great pleasure that I can look back at all the milestones that have happened. Where do I begin? Surely, we can start off with a quick update on me and then get into the good stuff. I’m officially down 32 pounds and have remained such for the past month. I’ve got a few pounds left till I’m more satisfied but I’m amazed at how I feel… so accomplished! Now to the good stuff!

Baby Mania
 Let me start by telling you February was a good month! I know countless people who are due this November, be it family, friends and a few CF wives too. I will admit it stung a little bit at first- the people who would vent to me about their frustrations in trying to start a family were soon pregnant, however amazingly enough I learned to take it more as a good luck charm. My sister-in-law is due with her 2nd on the 7th, dear friends from my college years are due with their first the following day and my best friend, whom I have been given the great honor of being Godmother to “puffin” as she so aptly named baby, is due the 15th. I don’t know the specifics of due dates on my fellow CF wives but oh I am so happy for them. One is even pregnant with twins… oh la la!

These recent developments have actually calmed my need to begin a mom ASAP. Something clicked after all the appointments and investigation – we need to enjoy our life and soak it up while we have the chance. It’s refreshing and I don’t feel guilty buying new music, movies or books now!

Work/Career
My job has definitely been keeping me busy, as I continue to learn the client services side of marketing, and the demanding schedule of hockey playoffs (courtesy of sponsoring Madison Square Garden). I’ve been fortunate enough to be able to also help my sister-in-law on the side to set up her new at-home-salon. We are so proud of her for making this step and the progress looks amazing, with her marketing materials to match! In respect to my amazing husband, he has flourished in his role, managing three demanding desks (categories) in the world of retail. He came home yesterday to announce that he had been requested by the Group VP to move over to a new, larger desk – candy. This move will not only allow him to learn the grocery side of the business, but take on more responsibility and increased exposure. I know he’s ready, willing and able to rock this new desk… but I’ll surely be staying clear of all the free candy!

Creative Outlook
In addition to creating business materials for my sister-in-law, I’ve branched out to help others with my design work. I revamped my high school logo to be featured on banners throughout the new addition and all elements going forward. It’s nice to leave a legacy! Also, I really have gone crazy in tapping into my crafty side. My Cricut machine has remanded dormant since I got it for Christmas some years ago. I recently became enthralled with the opportunities and expanded my cartridges, accessories and supplies to start putting it to good use. I created vinyl wall sayings for my in-laws, door numbers for my sister-in-law, and HEMI outdoor vinyl quality for my dad to place on his truck. Men!

One of my coworkers, Lauren, who is more like a little sister, got married on May 19th. After discussions of her wedding planning and how everything was wrapping up, she admitted they did not have any toasting glasses. I was going to change that! Her wedding colors were blue and green so thankfully I had green vinyl on hand and searched for nice champagne flutes. I had seen a project when logging into my Circut Craft Room about putting vinyl to make your own champagne toasting glasses and I was excited. I think they turned out great and I know how touched she was to have them. Here they are!

For Mr. & Mrs. Simon


CF Events

On a cold, rainy Thursday in April, I had the great pleasure of attending the first annual CF Milwaukee’s Finest event. We honored 8 young professionals who dedicated the prior 6 weeks to learning more about Cystic Fibrosis and raise funds to help support finding a cure. One of those honorees is actually our great friend and fraternity brother, Rick. He actually worked with the CF Directors to start the event and beyond being proud of him, his support and involvement with the CF Foundation truly touches our heart. Above celebrating the accomplishments of the 8 honorees, I had been honored to have been asked to speak for the attendees and give them insight from a CF Wife. My words came easier thanks to my preparation and it felt so nice sharing our story and my perspective, one that not many put into consideration. I got a very sweet note from the CF Director who organized the event and it said that a CF mom came up to her to thank her for offering the new perspective. I was touched and besides, now I’m more than just a sidekick to my famous husband!

In other news, I ask that you please keep my fellow CF Wives and their husbands in your prayers. I was able to connect with another wife last week and invited her to our Facebook group, and unfortunately 3 short days later her husband passed away. I know having gotten in touch with her and introducing her to the immeasurable support of the fellow wives is a gift from God, but it hurts my heart to have her go through this so soon. There are also wives who are patiently waiting for pink, healthy lungs to give their husband’s a second chance at life and finally to breathe easy. This week a few also moved up the list and were also just recently listed. CF is a crazy disease. It’s so different from husband to husband but the one thing I’ve learned is to keep an open mind and open heart.

I beg of you to spread awareness and sign up to be an organ donor. You don’t take your organs with you to heaven and we NEED them down here.

Until next time, breathe easy my friends!

Pieces of Me

one of the CF Wives shared a link to a very touching story and I feel more than compelled to share with everyone who may read this blog. a vibrant 13-year-old girl lost her life in a tragic skiing accident, but lives on in those who received the second chance of life through her organ donation. her parents yearned to hear her heart beat one more time and through their organization set up in Taylor’s memory, the mother of two young boys reached out to find them.

http://www.godvine.com/Mother-Hears-her-Daughter-s-Heart-Beat-One-Last-Time-649.html

it’s such a touching and moving reunion that you cannot refrain from allowing the tears to flow freely down your cheeks. sometimes they say in tragedy comes light and these parents found that to be true. Taylor lives on not only in their hearts but in the mother of two. please consider signing up for organ donation. you never know if you will be in need of one someday.

I can’t help but learn from the other CF Wives who are waiting for the miracle of two healthy lungs to come their way and give their husband and their children’s father a new breath of life. or from the wives supporting their best friends post-transplant, enduring a intense regiment of medication, therapy and living one day at a time, one breath at a time. in their strength and hope is a light of reality that one day I too could be in their position. the idea of waking up every day praying that today could be the day, or going to bed at night sending prayers for a miracle tomorrow is an overwhelming thought, but still a very true reality.

god bless all the active organ donators as well as those who have already given the precious gift of a second chance at life. god bless the man or woman who is out there that may someday give my husband a fresh breath of air. in a society of selfishness and greed, you can only hope more see the true grace behind organ donation.

•112,080 people are waiting for an organ
•18 people will die each day waiting for that magical organ
•1 person can help save up to 8 people

http://www.organdonor.gov

breathe easy…

The Power of Two

I just ordered our anniversary cake to prepare for our 1st wedding anniversary next month! The Extra Special Touch Bakery is beyond amazing and we are so excited to enjoy a little piece of our big day again… not to mention watching our wedding footage!

it’s amazing how quickly a year goes by and how much life can change. if you told me that we would be celebrating our 1st year in a completely different state I would have told you were crazy! but when you have someone in your life to stand by you and truly make each day better you understand the power of two!

on another topic of the same subject, we attended a CF Education night last year that featured the Stenzel twins. Anabel Stenzel & Isabel Stenzel-Byrnes wrote a book talking about their life in dealing with CF as not only twins, but of a bi-racial background. as double-lung transplant recipients, they have become global advocates for organ donations to give back to the cause that gave them another breath of life!

what is even bigger news is they released a feature documentary titled “The Power of Two.” it’s being screened around the US. according to the Boomer Eiason Foundation, the documentary “has been selected for a prestigious Oscar-qualifying documentary showcase and has captured the attention of Hollywood at Los Angeles screenings this week.” great job ladies!

it’s amazingly sad that a mere 37% of adults in the US have signed up to be organ donors so anything you can do to raise awareness is appreciated. my dad showed me his organ donor sticker on his license when I was a kid and as soon as I got my drivers license I made sure to get an organ donor sticker too. for those that believe that it’s signing your life away, please do some research to clear your naive thought process.

check out http://www.thepoweroftwomovie.com for more information and where to find a screening near you!

breathe easy!