Needing the Deads' Voice

Just two weeks ago, I wrote of a friend that was, at the time, fighting for her life in the ICU, hoping for a lung transplant.  She was on death’s door, and no one could guess if she would make it another week, waiting for a donor.

 I am happy to say, that, as of yesterday, she received her transplant.  A call came in late in the night on Sunday, and by 8:00 AM, she was being wheeled into surgery.  That’s all well and good.  It’s great news, in fact.  It’s one less person that is going to die from Cystic Fibrosis this week.  I witnessed Megan’s brother Jason in almost the exact same state, back in 2005.  He didn’t make it.  I witnessed Megan in almost the exact same state in 2011.  She DID make it.  It’s always hit or miss, but in this particular case, it was a “hit”.

But.  There’s always a “but”.

But there were some complications with this surgery that throw me right back into the uncertainty and anxiety that I lived with for over a decade.  Mind you, this friend is more of an acquaintance.  It’s her sister that I’m actually close with.  A sister that has leaned on me a bit for advice and recaps of Jason and Megan’s paths to transplant or lack thereof.  Now her sister is in a state that I’m not sure any of us has experienced.    

Upon first chatting with her a few weeks ago, I was able to state with confidence and and a clear head about what she could expect, and what was a total guess.  I relished in the fact that Megan’s transplant, rejection, and death still held meaning and gave hope or insight to someone a few years later.  Yeah sure, it would have been great if she didn’t, you know, die, but at least the fact that she did was able to help in some small way.  

Last evening, I received a text:

Just met with the surgeon. He is pleased with her transplant - it was a success. However, her lungs were severely attached to her chest wall cavity and so detaching it resulted in the swelling of her new lungs. They need to keep her sedated with her chest open for a few days. They're hoping to reseal her in approximately 3-4 days and then very slowly wean her off of the ventilator. Her new lungs are in as good of condition as possible as her donor was younger than she is. Please continue to pray for her and her donor's family who is giving her this chance at a new life.”

What in the actual hell?  All the hope and joy we held out for most of the day, and at the end of it, she’s going to be lying in a hospital bed with her chest open for 3-4 DAYS?!?!  Now, for those not familiar with transplant, they want to have you “sealed back up” as quickly and cleanly as possible.  The risk of an infection taking hold is immense, even when (like in Megan’s case) the surgery is clean and done in less than 6 hours.  To have an incision  a gaping hole open in your rib cage and chest wall for a few days is frightening.  

I had no words.  I never experienced ANYTHING like this with Megan, or Jason.  Jason, again, never made it to transplant, and Megan did, and the surgery went cleanly.  The only “complication” with Megan were that the donor lungs were slightly bruised...just something they “wanted to keep an eye on”.

This particular case though, only took me to the summer and fall of 2014, when Megan was lying in an ICU bed for six months, on a ventilator, then off, walking one day, then bed-ridden the next, having no appetite and being sedated on Tuesday, then eating like a horse and talking our ears off on Wednesday. It f*****g sucked.  You didn’t know if she would be alive the next morning, just as you didn’t know if she would be receiving a transplant, or going into septic shock.

How am I supposed to convey THAT experience to my friend?  That her sister is at a HUGE risk for infection, and that all she can do is hope for the best?  I know Megan.  She would bluntly tell her that “shit’s not good, hope for the best, but expect the worst”.  I can’t do that, for some reason.  There is a tremendous pull in my mind to simply tell my friend what she wants to hear.  She’s smart, she KNOWS this risk, as she has CF herself, and her husband received a double-lung and liver transplant, simultaneously, a few years before Megan.  Still, I can’t repeat to her what she already knows.  I simply said “there are no words” and that I would check in with her in the morning.  

We’re planning to head up to the hospital in the next day or so, to visit.  It will be the first time for me stepping foot into that godforsaken ICU since I walked out, tears flowing, on November 19th, 2014.  I still won’t know what to say, and will probably need more help than her sister at that time.   The last time I was there, I watched my wife die.  I have no way of foretelling what it will be like to smell, see, and hear that ICU again.    

This is one of those cases where Megan’s death is truly ironic.  

What we both need is Megan’s voice, but we need it because Megan isn’t here.


Showing 3 reactions

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  • commented 2017-01-24 17:20:35 -0800
    Agree, you are a good friend to be there. I had to take my Dad to the emergency room 2 years after taking my husband there. Neither stayed nor died there, but the end was near for my husband. You are well aware of what might happen, and how you might react, so at least you are preparing yourself for worst case scenario. That’s all you can do. Being there for your friends at this time of need is huge… and I bet as much as you don’t want to be there, there’s a bigger part of you that realizes you can’t be anywhere else. Take care.
  • commented 2017-01-24 11:55:59 -0800
    will Sarah be with you when you go? I agree with Marisssa to prepare yourself emotionally for the triggers that are sure to come. I know for myself, I could NOT go anywhere near the hospital where I saw Don , lying there dead – where I found out he had died, where I was taken into that tiny private room to be told my husband had died. Just driving BY that hospital gave me panic attacks and anxiety for a good 14 months. Then I moved out of NJ, so I didnt have to go near it anymore after that. If I had to go near it or in it even now, Im quite sure Id feel nauseous and unable to function. The smell, the memory of “would you like to see him?” and that tiny room, all of it haunts me. Yes, be there for your friend, for sure. But pleaase take care of yourself and have a plan if you NEED to get the hell out for a few minutes. If Sarah is with you, she can help you with this. Youre a good friend.
  • commented 2017-01-24 11:22:10 -0800
    Just prepare an escape route just in case the sight, sounds and smells are too much to bear. Prep your friend ahead of time as well. Let her know that you may need to step outside if you become overwhelmed.

    My husband had cancer so he spent a fair amount of time in the hospital on two occasions. I know all the shift changes, the cleaning staff schedules and how to reset the IV machine when/if the hose gets a crimp in it. Not that I would touch anything but you get the picture.

    Thankfully, the hospitals where he spent the majority of his time have closed (because new hospitals have been built) but the ICU sounds and smells are still the same.

    Power through if you really feel like you can but tap out if you need to. I don’t remember who said it (I think it was on this site) but there are no prizes for being the best/strongest widow/we. You must be good to yourself before you may be good for anyone else.

    Peace and blessings,