Appreciating a Disease's Lessons

The other day I received a text message from a friend of mine, who happens to have Cystic Fibrosis herself.  This friend was there for Megan and I when Megan was going through her 6 month decline, and I can’t describe enough how she (and her husband) went above and beyond for us.  

They would visit at the drop of a hat, when I just needed an hour away from the ICU, and Megan needed an hour away from my ugly mug.  They would bring clandestine snacks for Megan when she had cravings, as she almost never had an appetite, but when she did, she needed broccoli and cheese soup (I can no longer stand the smell) or M&Ms RIGHT NOW.  

I spoke with her every day during Megan’s hospitalization, giving her status updates, vital statistics, and news.  She would get all the gory details, and, if I happened to be running late with the call, I would get a text not long after, asking how Megan was doing.  She really did care whole-heartedly.

Did I mention that her husband ALSO has Cystic Fibrosis, and received a double-lung and liver transplant about 10 years ago?  He watched Megan’s organ transplant reject, and I can only imagine the anxiety and fear it brought he and her, to wonder if and when it could happen to him.  HIS brother died from Cystic Fibrosis not long before his transplant.  Oh, and of course, Megan’s brother died in 2005 from it, waiting for a transplant...I watched him take his last breath in the ICU.  Megan died after her transplant rejected, while waiting for another.  A mutual friend of all of ours died when her transplant rejected, and I don’t know how many more in this circle have died from Cystic Fibrosis, either waiting for a transplant, during transplant, after their transplant rejected, or, to put it bluntly, because they simply had no hope of transplant and just died.  

 

“According to the National Institutes of Health (NIH), the current average life expectancy for CF patients in the United States who live past childhood is about 37 years.” 

 

CF is a motherf****r of a disease.  I’m not going to mince words, because thinking about what it does to people and families actually physically pisses me off.  Most people who have it are gone before age 40.  In that snippet just above, the words “who live past childhood” are very, very telling.  I don’t have it (it’s genetic), and until I met Megan, I had never known anyone who did.  Now, 15 years after becoming familiar with the disease, I’ve seen or known at least a dozen people who have died because of this asshole of a disease, including my brother-in-law and my wife.  I’ve seen countless others that are currently struggling just to breathe, and/or so sick that they might as well be dead.  There’s no cure.  No “magic pill” that reverses the damage that this disease does.  One can only hope to slow or stop the progression, and ultimately, get a double lung transplant that sticks around for longer than a year or two.  God forbid you can even HAVE children...most sufferers are infertile...but if you do, you’re almost guaranteed that those children will not have you as a parent when they reach adulthood themselves.  

Why am I bringing this disease and its shitty consequences up?  Well, it’s twofold.

First, January 6th, 2011 is when Megan received her lung transplant.  Six years ago, she was on her deathbed with a collapsed lung, fully sedated, and frankly, forsaken.  By some stroke of luck, a higher power, or just fate, in the middle of the night her doctor came by her bedside, and informed me that they had “found a donor”.  Less than ten hours later, she had new lungs, and was recovering nicely in the ICU.  That isn’t something that just “crosses your mind” every year...it was the second most significant moment in our lives, even if it only bought us three more years.  

Secondly, the friend that texted me did so on Saturday, the day after the anniversary, to reach out and ask questions about Megan’s transplant.  She was asking, because HER sister is in the state Megan was, those six years ago.  She’s dying.  She was listed for a transplant, but her kidneys are failing, so they removed her from the list.  Her sister is fighting her ass off to get those kidney numbers back into an acceptable range, and get back on the transplant list, but time is her enemy.  She’s on a breathing machine, doesn’t have much of an appetite, and is losing weight.  Understandably, my friend is beyond concerned...she’s terrified.  This may be the “closest to home”, besides herself, that CF will affect her life.  I know her sister.  Not closely, but she’s a friendly acquaintance. Any and everything I can do for her or her sister is on the table, but besides moral support, nobody can really do anything except wait and see...its a shit sandwich, and we all have to take a bite.  

The story is the same for almost all CF patients...gradually get sicker and sicker over the years, but “not quite sick enough” to be listed for transplant.  Then, when you’re “sick enough” (also known as “all but dead”), you get listed, and hope that you get the transplant within a few months, because soon, you will be “TOO sick” for a transplant.  This is what is happening to my friends sister.  

She’s reaching out to me because Megan went through this, as did her brother, and I was eyewitness to both people.  I was at Jason’s bedside in 2005, along with his family, when he died.  I was holding Megan’s hand when she gave birth to Shelby in 2007, when we got word of a donor in 2011, and I was holding her hand when I saw her heart rate drop to 3 beats per minute, then flatline, in 2014.  I have somehow been witness to all of the possible major life events that can happen to someone with CF, and managed to keep my sanity.  

As much as the news of her sister sucks, I am taking a silver lining, even from this.  My friend said “sorry to make you relive this” after she had described the details, and I thought nothing of it, because she didn’t need to be sorry.  She needed to vent.  She needed to ask questions about Megan’s experience through me.  She needed to kick and scream and cry and bitch.  She needs someone to take her out for a beer or twelve.  She needs even fifteen minutes to go down to the hospital cafeteria and be distracted.  She needs a hug from Shelby (which, as Sarah says, are “magical”) and likely needs to punch something.  If she didn’t have CF herself, she needs a cigarette, or better yet, a joint, to go with her dozen beers.  Most of all, she needs her sister to get a goddamned lung transplant most ricky-tick.  

The silver lining that I’m taking from this is that Megan is the person who made me able to be there for this friend.  If Megan was still around, of course, she would be talking to her, but Megan’s dead.  My friend is coming to me, an “outsider”, quite simply because of the example Megan set for all of us.  It’s not because I’m some shaman that can go burn sage and perform a chant at her sister’s bedside to make her “all better”.  It’s because I’ve been where she is.  I’ve seen Megan watch her sibling die, and I’ve seen Megan die.  Because I’m a widower to CF, I can help those who have lost, or are losing those closest to them.  I’ll do everything that I can to ease her mind, but frankly, she knows as well as I that “easing one’s mind” is about the extent one can deal with CF.  

I urge each and every reader to register to be an organ donor.  

 


Showing 4 reactions

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  • commented 2017-01-15 17:51:07 -0800
    My husband developed idiopathic pulmonary fibrosis at age 64. He never smoked or did anything to develop this disease. He was put on a lung transplant list but died within 6 months of diagnosis. Please I beseech you all to be donors. It will be two years without him in February and I miss him every day. We had 43 years of love together.
  • commented 2017-01-13 12:53:12 -0800
    Great post Mike. So important. This disease sounds incredibly shitty. Not that ALL diseases arent shitty, but man …. to to struggling to breathe, literally …. has got to be one of the most awful feelings in the world.
  • commented 2017-01-12 07:13:38 -0800
    I strongly agree that everyone should register to be an organ donor. Give the gift of life even if its just for a little while for that person. Help another family to make precious moments with their loved ones.
    My husband was an organ donor and when he passed away his eyes were donated and now two people in the world are seeing through his gift to them. It is a beautiful feeling to know that these two people can now see the ones that love them so much and wake to see the sunrise and go to bed at night after seeing the sunset, two of the things my Mike loved to see:)
  • commented 2017-01-10 17:17:47 -0800
    Mike, this post was a difficult read for me. CF is a mother f*cker. A life stealer. But, like you, I am better able to handle things because I watched Jared live thru 2 lung transplants to only die from a rare bacteria. What a blessing you are to your friend. How wonderful that you can help her. Answer her questions and give her so much support. Megan would be proud.

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