Round 1

Round 1 goes to CF. We were hoping that a week of IV fluids (hydration therapy) would be enough to break up the junk in my lungs and get me back on track. Though I did make some progress, it wasn't nearly as much as we were looking for. So, for Round 2, we're bringing out the big guns: IV antibiotics. Fortunately I'm still being treated at home and am keeping out of the hospital. Unfortunately, I also managed to come down with a head cold this week, because I'm a drama queen. So right now I'm all runny nose sore throat miserable, which pretty much sucks. But hopefully by this time next week I'll be feeling miles better!!!

Anyone wanna brave my germs? Visitors welcome! 

On the plus side, I got a day off from treatments yesterday while they worked out the transition from hydration to antibiotics, and my wonderful friend Sandy came all the way down from NY to visit! Not only did I get a chance to get out and about all day without being attached to an IV pole (for the first time in a week!), I got to do it with a friend! Definitely lifted my spirits and gave me energy to buckle down for this next round of treatment. Thanks so much Sandy!!!!!

Community support

B"H, despite being sick, I had SUCH a nice Shavuot! I'm so grateful to live in such a caring community! From setting me up with meals close to my apartment, to getting me a wheelchair, to scheduling people to chauffeur me around town, everything was worked out to put my illness on the back burner and allow me to experience simchas yom tov. Cherry Hill rocks!

Health issues and adjustments

Some of you know that the last several months have been medically difficult for me. In October I had a significant CF exacerbation and was hospitalized most of the month. It took until March/April for me to really regain lung function and feel close to fully recovered. Unfortunately, my health started slipping again a couple weeks ago, and I'm currently going through another round of breathing problems. Fortunately I haven't been hospitalized, and we're hoping that a week of home IV fluids will help clear things up, but it's still a disheartening setback. Once again I'm indefinitely out of work and on temporary disability, and even once I get passed the stage of acute illness it's going to be another long haul to scratch and claw my way back to mostly-normal lung functioning. I've had to make significant changes in my daily life, and need to continue making more as I adjust to new medical realities. It's been difficult, and I won't pretend that my disposition has been all sunshine and daisies throughout the process. It's gotten easier to manage with practice though.

I'm pretty much on house arrest this week due to the ridiculous amount of pollen in the air these days. Truthfully, right now even walking down the hall is difficult for me, so I'm not much inclined to be out and about anyway. It would be lovely to have some company though to break up a long boring week. And for those who aren't local, prayers are always greatly appreciated! My full Hebrew name is Keren Eliana bas Sara.


On the bright side, my family has been awesomely supportive and I don't know what I'd do without them. My employer has also been incredibly understanding, for which I am so grateful. AND, despite all this, I still managed to move into a new apartment! Ok, so technically my family did all the hard work; I just directed. Thanks Mom and Frank!!! I'm so excited to be living near the frum community now (especially with yom tov coming!), while still having my family close by. Upwards and onwards to better things!

On Cystic Fibrosis and Birthdays

In the 1950s, life expectancy of a CF child was 5 years. In the 1970s, CF patients were expected to live less than 20 years. By the 1990s, life expectancy was 30 years.” (www.associatedcontent.com/article/1106012/cystic_fibrosis_or_systic_fibrosis.html?cat=70)

“Cystic fibrosis is a genetic disease that frequently has its first health impact in infancy. The disease often progresses through childhood into young adulthood, with death usually occurring as a result of pulmonary complications. The average lifespan has been steadily increasing, with a mean life expectancy of 30 years by 1995.” (www.atsqol.org/sections/specific-diseases/cystic-fibrosis.html)

Today is Tu B’Shvat, which also happens to be my Hebrew birthday. And today, I am 30 years old.

People mark their lives with many milestones. First day of school. Graduations. Getting married, the birth of a child. I’ve seen some of those milestones, and am still awaiting others. But two of the most unexpected and hard-won of my life’s milestones occurred with the seemingly commonplace celebration of birthdays.

CF statistics go by the year you were born. For those born in the seventies, like me, fully half of us were not expected to see our twentieth birthday. By the time I was 12 my health was deteriorating, and my own doctors didn’t think I’d live to graduate from high school. But I did, and pushed still further to that fateful twentieth birthday and beyond.

At the time, however, I wasn’t actually aware of how very significant that was. I didn’t realize that CF came with a life expectancy until I was a teenager. I grew up with a different number hanging over my head, for by the time I realized that CF was a fatal illness the median life expectancy had reached 30 years. That was the number on the brochures, the articles, the websites, and that number firmly lodged itself deep in my mind as the age by which I would be dead or dying.

But today, I am 30.

I’m neither dead nor dying, and don’t plan to be either for a long time yet. I am a self-assured, educated young woman. I live independently, nearly 100 miles away from my family. I work full time in a demanding field that I love. I manage my medical needs subtly and competently, and walk through my days with the appearance of any average person on the street.

Yes, there are bad days. Sometimes, there were so many bad days that it seemed they would never come to an end. But end they did, and I know that when bad days come again they, too, will end. I will suffer them, and survive them, and move on, as I have done for the last 30 years. As I plan to do for 30, 40, 50 years more. The statistics only said that half of us would not see a twentieth birthday, a thirtieth birthday. For those born in the United States today, the statistics say that half of them will not see a thirty-seventh birthday. But me? I have no more limits. I’m 30! They never said how long those of us in the other half will live. One of my friends pointed out that by the time I reach each designated age the life expectancy has changed again, so clearly I’m going to live forever!

So many people hide from their birthdays, as if the years that number your life are a shameful secret. What an unfortunate waste of a glorious day! I plan to unfurl the years of my life as the shining banner of victory that they are. Look at me! I am 30! I have been granted 30 years of living, learning, and hopefully growing. I have been granted the unbelievable miracle of continuing to live, learn, and grow beyond these 30 years!

Today is my birthday, and it is a blessing!

What have I gained from Cystic Fibrosis

I wrote the following as part of a college scholarship application, in response to the question, "What have you gained from Cystic Fibrosis?"

“You have Cystic Fibrosis? Oh…” The words trail off quietly, implying the speaker’s shock, sympathy, and pity for the poor illness-inflicted victim. How many times have all of us heard those same words, that same tone – those same thoughts? Yet in their sorrow, these people – often our dearest friends or family members – fail to see what lies beyong the name “Cystic Fibrosis,” beyond the title of “CFer” or “CF patient.” For though in one sense it may be a curse, a burden we would all gladly give up in an instant, in another it can be a blessing as well – if we but choose to look for it.

What have I suffered from Cystic Fibrosis? I could speak for ages about the pain, the frustration, the endless hospital visits and medications, the limitations… but we all know of that. Anyone with eyes can see that. The stranger on the street who only knows statistics can understand that much. What have a gained from Cystic Fibrosis, however… that is a question few people think of, and even fewer would dare to ask. It seems so heartless, after all, asking about the benefits of a deadly disease that must be endured day in and day out for a lifetime. The benefits, however, the insights and knowledge and growth we can take from this disease, are the most important thing of all. The light shining through the darkness must be sought out, for it is what gives us the strength to keep going and fight on.

Look how many people live their lives today, floating carelessly from one day, one hour, one minute to the next, taking their existence for granted and living for the pleasures of the moment. How many people do you suppose stop and think how wonderful it is to be able to breathe in the air without struggle or pain? Not very many… in fact, until recently I never thought of it either. I only dwelled on it when a breath without strain became a rare thing rather than a commonplace one. It is the simple things we take most for granted… until we lose them.

How many people blithely make plans for the future, mapping out weeks, months, years – even entire lifetimes – without a thought that these grandiose schemes may not come to pass? No one ever thinks that the opportunity to shape one’s future may be yanked from one’s hands before even getting a chance to try. After all, the future is up to us, it is ours to hold – unless you realize that your future may not stretch on very far.

We run, we jump, we dance and play, speak and sing, revel in the power and beauty of our bodies and their capabilities. We stretch and test ourselves, push to the very limits, test and overreach our abilities and skills. Our bodies are ours to command, ready to perform any task the mind can conjure up for them – unless inexplicably they begin to fail us, and the mind begins to set goals at which the body can now only sigh wearily and turn away from.

What have I learned from having Cystic Fibrosis? If anything, it is the one lesson which is most important for everyone to learn: never take anything for granted. Every breath, every thought, every motion, is a precious gift which can easily be lost. Every moment of life must be reveled in and known for the remarkable thing that it truly is. Anything which seems commonplace and comes to be expected and mundane – shouldn’t be. For even the most mundane and common of things will be sorely missed once they disappear.

I look at the people around me, those who are “normal” as I only wish I could be, and I envy them. I envy them their abilities, their strengths, which I sometimes lack. Yet at the same time, I pity them. I pity their inability to truly see the amazing privileges they are granted. And I look to myself and realize yes, I may be lacking some things which they have, some basic physical abilities which they can take for granted… but emotionally, intellectually, I have something more. I have the unique ability to look at life from a different perspective, and realize how rich it truly is. Thank G-d for my weakness, for in actuality it is my strength… for though they can run, I can see.

The scholarship application also required a creative presentation. I turned my feeding pump
into a carnival and used the pictures to create this collage.