My Two Favorite Dorks

My Two Favorite Dorks

Sunday, August 10, 2014

CF Friends


A recent lunch date with Jessica Newport - she's four years out from transplant at Duke!

I Remember...

  • The first one to show me that living a healthy, active lifestyle could go a really long way to keeping CF in check. And that you could be an adult with CF and still have a pretty awesome life.
  • The first one who I really, really cried about after he died. He was a writer, he had come to NC for transplant but had problems getting listed. We had the same doctor, too. One of the last things he wrote that I read was about him escaping with his girlfriend to spend a few hours at the NC State Fair one beautiful October evening. He talked about the magic of this moment as a suspension of his current reality, and about how in love he and his girlfriend were. He died a couple of weeks later.
  • The first one - ok, really the only one - I had a crush on. Hey, just because it isn't advisable to hook up in person doesn't mean we can't have a little online romance!
  • The first "CF couple" that I knew. They created quite a stir in our little online CF community. But they were happy. And everyone could see that.
  • The first transplant scar I saw in person - WOW! - and the amazing strength of the woman who showed it to me.
  • The first person I knew of with end-stage CF who unapologetically did not want to get a transplant...and stuck to her guns.
  • My sweet sweet friend who was so close to death waiting for transplant that her surgeons decided they could no longer wait for the perfect lungs, so they transplanted her with lungs that had a touch of emphysema. She got a few more years of life after that but it was never the post-transplant life she imagined for herself.
  • The first friend I saw develop crazy strange complications after transplant surgery: a nerve to her foot was damaged which made her not be able to walk right; she got a fungal infection in her heart, for which she had to have surgery and almost died; finally, the fungal infection spread to her eyes and she is almost blind because of it. But she is alive and otherwise doing well 5 years after transplant.
  • My friend who created the most unbelievable written chronicle of living with end-stage CF while waiting for transplant - unfortunately, most of the writing has since been lost. He was also incredibly smart and had as good of a handle on CF as many doctors. Losing him was like losing a funny, talented, slightly nutty CF encyclopedia.
  • Being hooked up by the previously mentioned friend with another CF woman because he thought we were a lot alike. We became great friends, she is still one of my closest friends with CF, and we share many interests including yoga, environmentalism, blogging, making soap and enjoying life's little zen moments.
  • Another sweet sweet friend with a penchant for large dogs and taking awesome photographs. She was also one hell of a graphic designer. On her way to the hospital for her transplant she wrote of seeing a rainbow and what a wonderful sign it was that this was her time to be transplanted. Unfortunately, after a smooth surgery and extubation, about a week later things went completely to shit and she died, breaking all of our hearts.
  • My friend who was way more punk rock than CF.
  • An incredibly knowledgeable cystic who we watched slowly die online, mostly by herself, in her apartment, through her posts about wanting relief from the stress and anxiety of breathing with end-stage lung disease.
  • The first two-time double lung transplant recipient I met in person. She's still a very good friend and has helped me with some of the big questions I had about transplant for myself.
  • Meeting a woman with CF online with my exact name! I know, "Laura Smith," what are the odds, right? Still kind of unusual.
  • The first guy I met with CF who was a total goof ball! And not in an annoying way, but in a positive, funny, make-life-more-enjoyable way. He has a heart as big as Texas and a gift for saying the thing you need to hear most at the exact time you need to hear it.
  • The one I thought I could save but could not because I discovered too late how similar we were...we shared most of the very same reservations about transplant and, whereas I was able to reason through mine, she never was able to get to that point. I just have a nagging feeling that things could have ended up differently for her. And it sucks.
  • The one who has always stuck by me, and who is always the first to ask me how I'm doing when we chat, no matter what crazy thing may be going on in her world.
  • The first Duke CF transplant recipient I reached out to when I started pursuing transplant there - she has given me more answers and information and been more helpful than I thought any one person could.
  • The first guy with CF I met when I started pulmonary rehab at Duke. I jokingly call him a "professional rehaber" because he has gotten too healthy since he moved here for transplant. I was lucky to meet him because we have an incredible amount in common: similar age, we're the same type of proactive/informed patient, we're very connected to and concerned about the people around us. I've been able to learn a lot from him.
  • The first of my CF rehab buddies who I was able to see go through transplant - from the ends of the end stage fatigue/nausea/coughing fits to her showing up with brand new lungs and looking absolutely amazing four weeks after transplant.
  • The first of my CF rehab buddies who could never make it to listing, but who died trying.
It's funny how I've gone from the kid who was always "so healthy" with CF, who almost looked down at or felt sorry for other kids with "bad" CF, and had absolutely no desire to connect with them to a woman who will fearlessly almost always go up to someone new I see at rehab or the doctor's office who I suspect to have CF and introduce myself.

People come into your life for different reasons and if you're lucky enough, you discover something valuable in them. And if you're super lucky, you can give a piece of yourself to them to help them on their journey. There's nothing unique about CF, just that we have an extra special value we can bring to each others lives.



This blog is dedicated to John, Alan, Rhiannon, Marjolein, Paul, Kelly, Melanie, Sandy, Shannon and the many others who have touched our lives and then been taken away from us far too soon.

3 comments:

  1. Beautiful post, Laura, that reflects your values perfectly.

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  2. Laura, I love to read about your journey and think a "what if" about Shannon. I know how hard this wait is for you. Just want you to know that my brother had 2 dry runs and a 3rd success! 17 years of success! I am reading every day and all of my positive energy is going to you for success and a new life of health. Patty

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