Great Strides 2014

Great Strides 2014 was last week.

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Great Strides is the annual fundraising walk for the Cystic Fibrosis Foundation. I walk to honor my late brother-in-law, Ben, who lived his entire life with CF and died in February of 2013 as a result of the disease.

I first participated in 2011 when the walk happened to fall on the day after Ben’s double lung transplant! How’s that for serendipitous timing? Our team was teeny tiny that day, but I can almost guarantee you that we were the happiest people on the course.

Ben looking like his usual self only one week after his double lung transplant!

Ben looking like his usual self only one week after his double lung transplant!

The following year, Ben was able to participate and led our team with gusto! Last year, we had our largest team to date, but we were missing our most important member: Ben had died a few months before the walk.

There is no cure for Cystic Fibrosis. As it takes its toll on someone’s body, it gets to a point where their best option is a lung transplant, assuming they are lucky enough to get new lungs. The cruel irony is that only 50% of lung recipients make it to five years post-transplant. This is why I’m so passionate about Great Strides and the Cystic Fibrosis Foundation. I feel like my participation is a way to do something for Ben and for the 70,000 people currently living with CF. The progress that has been made in treatments and life expectancy is awesome, but I’m praying for the day that there is a cure.

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This year our team raised $1,400. Not too bad considering there were only 11 of us. I personally raised $300. Thank you so much to those of you who donated! You were on my heart during the walk.

I think the timing of the walk wasn’t the greatest (there were so many events on that day), but honestly, I also think that for some people it’s easier to not think about it. I don’t begrudge anyone that; we all grieve in our own ways. For me, it helps to participate, but I respect that for others it might make them feel worse.

The walk itself was lovely. The course was moved this year from the semi-industrial looking Fair Park to lush Vitruvian Park in Addison. This was Geronimo’s first time participating, and he loved it! Our regular walks had him in good enough shape to make the 3 mile course no problem.

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Plus he got lots of compliments. Strangers wanted to take his picture and asked me what kind of dog he was. Geronimo got plenty of pets and hugs. We were even singled out by the DJ. As we walked by the stage, he said (into the microphone), “The next time you get your chow’s haircut, don’t take him to the zoo!” I responded by shouting back, “He’s not a chow!” I have no problem admitting that he looks ridiculous, but for the record, Geronimo is a red heel/Aussie shepherd/border collie mix. No chow in him.

G-mo and I walked at an easy pace with my mother-in-law for all 3 miles. I was really proud of her for not taking any shortcuts! We got the chance to catch-up, and the fact that we went slower than I would have normally gave me just that much more time to enjoy myself. Afterwards, I went out to lunch with my mom, her boyfriend, and my mother-in-law. We were all pooped from so much time spent in the humidity, so a little Tex-Mex and a lot of air conditioning made for the perfect end to the day.

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Another great year of fundraising has ended, and I’m already looking forward to Great Strides 2015!

(You can read more about Cystic Fibrosis here.)

(You can register to be an organ donor here.)

(You can donate to CFF here.)

Super Bowl Sunday

For most people, Super Bowl Sunday is about football, eating, laughing at commercials. Although I’m not a huge football fan, I’ve always enjoyed watching the Super Bowl. Chalk it up to the fact that I moved to Texas during the Dallas Cowboys’ heyday. I still remember camping out on the floor of our living room surrounded by snacks (we were never allowed to eat in there) when they won in 1995.

Although Cowboy victories are a thing of the past, I still tune in each year. In 2011, I watched from the hospital with Ben and my mother-in-law. Ben was a die-hard Green Bay fan, and it was such a disappointment for him to be cooped up while his favorite team was playing just 20 miles away. We made the best of it with way too much food and running commentary throughout the entire game. (We didn’t even realize it when Christina Aguilera flubbed a line in the anthem or how silly the half time show looked – the tiny hospital tv made it look pretty neat.)

For 2012 the game was again watched with my in-laws, this time at their house. Ben was out of the hospital and approaching a year post-transplant. Stephen was in Afghanistan, so I wasn’t in the best of spirits. I showed up wearing sweatpants and spent the entire game eating spinach artichoke dip.

I couldn’t tell you who played last year. I watched the game like a zombie. A group of us hastily arranged ourselves once again at my mother-in-law’s house, once again with snacks galore, but this time without Ben. The game was held the day after he died. Being that he was a dedicated sports fan, it seemed right to watch it and think of him, to imagine him watching from the best seat in the house.

I have thought about watching the game this year. I want to cheer along with everyone else and pretend that it’s a normal day. But it won’t be. February 2nd is the anniversary of Ben’s death. A year before, I held his hand as he slipped away. The memory of everyone’s faces, red and wet as we hugged each other and sobbed, is still fresh.

Ben’s death had been inevitable. He was born with Cystic Fibrosis, which has a median predicted age of survival in the mid-30’s (Source). The lung transplant Ben received was nothing short of a miracle. It gave him the chance to leave the hospital and live life on his terms. Sadly, half of lung transplant recipients don’t live more than 5 years post-transplant (source). Ben didn’t even make it two.

If you aren’t already, I urge you to consider becoming an organ donor. You can register here. Be sure to talk to your family so that they know your wishes. If you have the means, please consider donating to Great Strides, the fundraiser for the Cystic Fibrosis Foundation. In addition to your gift helping to find a cure for those still fighting CF, it also gives comfort to those of us who’ve already lost a loved one to the disease.

April Is Organ Donor Awareness Month

If you google “Savannah Ramza” you will see pictures of a beautiful young girl. You’ll see that she was a cheerleader, that she had thick brown hair and a fantastic smile. You’ll also see that she died in March of 2011 at the age of 16 in a car accident. And if you keep reading, you’ll realize that she was an organ donor. What you don’t see are the faces of the people that those organs went to, the relief those families feel, the domino effect of people impacted by her gift.

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Savannah was in my 7th period class my very first year as a teacher. It was a smaller class, maybe only 15 students, so I got to know the kids pretty well. I don’t know if I can remember a single day that Savannah didn’t seem happy or bubbly or smile. She was a smart student and an eloquent writer with looping, round handwriting. I marked her as “a pleasure to have in class” on her report card, and she was.

I don’t know the details of Savannah’s accident, if she was at fault or made poor choices. I know that she was in the ICU for a few days, that a candle light vigil was held in her honor at a local park, that she died shortly after, that she was too young, that her family and friends mourn her deeply, but also that they are comforted by her decision to be an organ donor.

There was a local news segment not long after she died, in which her classmates and friends talked about Savannah and her decision to be an organ donor. They talked about how they admired her for it and how cool it was that she was able to save other people’s lives even though she was gone. They all said that they planned to become organ donors as well, following her lead.

I know that people have lots of reasons for not being organ donors, but I hope that if you aren’t one already, you will think about all the people you could touch (strangers and friends alike), the lives you could save, the good you could do.

100 million Americans are currently organ donors. (That sounded like a lot to me until I read that Miley Cyrus has 400 million Twitter followers.) One organ donor has the potential to save 8 lives. 18 people die each day waiting for organs.

Because of people like Savannah and my brother-in-law Ben, I’m passionate about organ donation. I’m also an organ donor myself. Are you?

  • Facts and figures about organ donation can be found here.
  • Register to become an organ donor in your state here.
  • You can read more about Savannah here.
  • Ben’s transplant story can be found here.

Chronic Rejection

Cystic Fibrosis (or CF) – A genetic disease that causes the body to produce thick mucus making it hard to breathe. The lungs and pancreas are the primary organs impacted by CF. In the United States, somewhere in the neighborhood of 30,000 people are living with CF. Another 10 million people (1 in 31 Americans) carry the gene.

Life expectancy – As of 2009, the median predicted age of survival was estimated to be in the mid-30’s. 45% of those with CF are over the age of 18. The is a vast improvement over decades past. In the 1950’s, CF was known as a “child’s disease” as most of those who had it were not expected to live long enough to even attend school. Unfortunately, even with these improvements, life expectancy is still tragically low.

Cure – there is no known cure. There are drugs and treatments that can improve the quality of life and lengthen the life expectancy of those with CF, but even a lung transplant is not a cure.

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Standing in order from oldest to youngest: Stephen, Ben, Josh.

Standing in order from oldest to youngest: Stephen, Ben, Josh. Taken in September.

Those who have followed my blog for a while have heard me talk about Ben before. He is my brother-in-law, and he was born with CF. He has dealt with it his entire life, always with grace, a good attitude, and a fighting spirit.

In 2011, Ben was fortunate to be the recipient of a double lung transplant. (1,700 lung transplants were performed that year.) The surgery went without a hitch, and Ben recovered with miraculous speed.

At the one year-mark, it seemed like Ben was doing better than ever. (80% of CF patients to receive lung transplants live to see the 1 year anniversary, 50% make it 5 years post-transplant.) In the months since then, his health has declined. Last fall it was determined that he is facing chronic rejection.

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Ben a few hours after his lung transplant.

Chronic rejection – long-term loss of function in a transplanted organ. In the case of the lungs, it may take the form of scarring, inflammation, respiratory tract infections, and overall decreased lung function. Chronic rejection is more common in lung transplants recipients than those of other major organs.

There was in incident in November when Ben suddenly went downhill. It was very touch-and-go for a few hours. Stephen took emergency leave so we could fly home to be with the family. That incident might have been related to rejection, but it might not. (Our best guess is that it was related to a port that was improperly flushed by a nurse.) At the end of our time home in November, Ben was doing well, and in a matter of days he was discharged. It seemed like he was on the up and up.

But he struggled to gain weight, was still suffering shortness of breath, feeling weak, and returned to the hospital in December. On Monday, we were told that his oxygen numbers were so low, that if he didn’t get a transplant in the next few days, that he probably wouldn’t live much longer.

Talk about a kick to the gut.

He has been intubated and is breathing with the aid of a ventilator. The doctors took a chest x-ray, and it appears now that things are not as bad as they initially thought. (It was a terrible 24 hours waiting to hear the prognosis.) The “must get a transplant in two days” timeline was determined to be incorrect. So it seems that Ben has more time, but he is still fighting rejection and his health is still not good.

Josh, Me, Ben at Passover last year. They aren't my brothers by blood, but I love them just as much.

Josh, Me, Ben at Passover last year. They aren’t my brothers by blood, but I love them just as much.

Ben is back on the transplant list. New lungs are his best chance for improvement. It is likely that he’ll remain in the hospital until he gets another transplant.

So where does that leave us? We hope and we pray and we wait.

What can you do? If you aren’t already, consider becoming an organ donor. I don’t expect Ben to get your lungs, but 1,700 lung transplants a year seems dismally low. More people need to become donors if we want our loved ones to have the chance they deserve in their time of need. If you are already an organ donor, make sure your family members know your wishes so they can carry them out. (Organdonor.gov has more information if you are interested.)

If you want to help CF patients in particular, think about donating to Great Strides. Josh (Stephen’s youngest brother) is participating this year and raising money for the Cystic Fibrosis Foundation. (I participated last year; you can read about it here.) This is a fantastic organization to put your money towards since almost every single penny goes directly to support the development of new drugs to fight the disease, improve the quality of life for those with CF, and ultimately to find a cure.*

(All statistics are from the Cystic Fibrosis Foundation and Second Wind.)

Lung-a-versary and Great Strides

Saturday was a really special day. Not only was it the Cystic Fibrosis Foundation’s Great Strides 5k walk. It was also my the one year anniversary of my brother-in-law’s double lung transplant. What a reason to celebrate!

Our friends and family gathered at Fair Park prior to the walk. Last year just a handful of us participated. This year, we had a big group, a transplant-recipient, and matching t-shirts!

I personally raised $419 and our team as a whole raised $2,275 ! Thanks to those of you who donated! I know that times are tough these days and money is tight for lots of people. Every little bit helps, and I’m so excited that we raised as much as we did.

We were a little late getting started, but there was no rush. The fun thing about Great Strides is that most people just take their time and enjoy the walk. It only happens once a year, so I made sure to soak it all in and take tons of pictures.

Ben and his girlfriend, Sorelly, during the walk.

While we were walking, I took the opportunity to ask my Ben (the brother-in-law) some questions – I’m nosey like that. He said that the most common question he gets about the lung transplant is, “Did it hurt?” So, did it? Not really. (They had him on a bazillion drugs; that probably helped some.) I even got to see his scar, which doesn’t look that bad; it’s relatively faint. It goes horizontally across his chest below the nipples. (I joked that it looked more like he had breast implants taken out than new lungs put in.)

In the past year, Ben has really gotten to enjoy life. He works, he works out (we even ran a race together), he has a girlfriend, he got his own apartment and a puppy, and things are good. Just last year, he was stuck in the hospital for going on 6 months. None of this would have been possible with out his organ donor. We don’t know who gave their lungs to Ben, but we are forever grateful. I am acutely aware that this weekend marks one year since the donor lost their life. I made sure to say thanks and send good vibes to their family. I don’t know the pain they must feel over their loss, but I hope they can find some comfort in the fact that their loved one has blessed our family immensely.

Post Great Strides, it was time to grub up. The crew headed to my mother-in-law’s house where she had quite the spread. Everyone hung out and just enjoyed each other’s company. I made sure to get in tons of nibbling. (Everything was deelish!)

What a day! Thinking about Ben’s lung transplant makes me feel (a) lucky that my body works as well as it does, (b) thankful that there are people out there willing to donate their organs, and (c) happy to see someone as deserving as Ben get a new lease on life. These lungs couldn’t have come to a better person. Happy one year lung-a-versary, Ben! May these lungs serve you well for many years to come!*

65 Red Roses

Last week the movie 65 Red Roses premiered on OWN. I had never heard of it, but my brother-in-law posted about it on Facebook, so I decided to watch it. The movie is a documentary about Eva, a twenty-something living with Cystic Fibrosis. She started a blog (you can read it here) to share her story and connect with other CF patients.

Eva. Source

Over the course of the movie, we see how Eva suffers (the coughing is the worst; it sounds so painful), we watch how isolated she is (CF patients run the risk of spreading infection to each other so personal contact is discouraged), and we see her wait months and months for new lungs.

My brother-in-law, who was also born with CF, had a lung transplant last May. It was jarring to see Eva experience some of the things I know that Ben went through, to see her family feel some of the same emotions that we felt. (At one point, her dad breaks down crying, “Can’t she just catch a break?”) I also wondered if some of what I saw Eva suffered through were things that Ben experienced unseen to the rest of us.

The facts on CF are scary:

  • 40% of  people living with CF in the US are 18 or older (a huge improvement over previous decades when CF patients didn’t live as long).
  • 30,000 people in the US have been diagnosed with CF.
  • About 1 in 20 Americans (approximately 12 million) carry the CF gene.
  • There is no cure. (Even those who are fortunate enough to get a lung transplant are not cured.)

In two weeks I’m going to be walking with Ben at the Great Strides 5k (a huge fundraiser for the Cystic Fibrosis Foundation). So far, I have raised $354 dollars. My goal is $500, so I’m getting close! 90 cents of every dollar goes to research, care, and education, and every little bit helps. If you have a little bit of moolah to spare, please consider donating it. (You can find my fundraising page here.) And if you haven’t seen the movie 65 Red Roses, it’s worth a watch!*

Great Strides

Back in September, I wrote a post about organ donation, something that is near and dear to me. My brother-in-law was born with Cystic Fibrosis. It’s a genetic disease, so he’s had it his entire life.

By the grace of God, Ben had a lung transplant last May.

I’m not exaggerating when I say that he has a new lease on life. The day after his transplant last year, my mother-in-law, other brother-in-law, and nephew all participated in Great Strides, a CF walk and fundraiser. It was perfect timing that while Ben was recovering from a double lung transplant, we walked and celebrated!

The huge crowd at Great Strides Dallas last year.

My team bringing up the rear!

This year I am once again participating in Great Strides. Please consider donating to my fundraising page. The money goes toward Cystic Fibrosis research, care, and education. I know that money is tight for many people these days, so I understand if you can’t contribute and I am grateful for any amount that you can spare.

You can find my fundraising page by clicking here. Thank you!*