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.

savannah

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.

Ben -

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.

lung transplant

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.)