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Apr 11

I have run out of weather metaphors

Clouds. Storms. Hurricanes. Tornadoes. Tsunamis. Forget it. We have now reached utter and complete Clusterfuckness.

 

Jay spent 62 days in the hospital. He came home, hoping to slowly recover from what was called both an aspergillus infection and a sever pneumonia. Within 2 weeks of being home, he was back on oxygen. It’s been downhill from there. His FEV1 is now 24%, which I believe is lower than before his transplant.

Last Wednesday, the doctors finally used the word they  have tiptoed around and avoided for 4 months: REJECTION. There is no hope of recovery. His only chance is a second lung transplant. Yep. Total clusterfuck.

We sat on the news for a week as we tried to wrap our heads around it. Is it statistically even possible? Is he healthy enough for a second transplant? What will going on the list again mean to our family?

In short order, this is what is going to happen: we need to sell our house and move to a house with no stairs so he is no longer prisoner. Right now, he’s been sleeping in the living room and has access to a half-bathroom, but taking showers requires going up or down a set of stairs and that is an epic undertaking. And no, before you suggest putting in a lift, out house cannot accomodate one. And in the long run, the smart decision, though it breaks my heart, is to sell this house we love and move somewhere where he can be more comfortable.

I am not going to pretend I am ok. I am going to be perfectly honest: I don’t know how I can possibly do this a second time. Being on the list, it’s very stressful. It’s a lot of waiting and doing nothing. No travel. TONS of doctors appointments that take over your life (never mind that I already manage tons of those for Diver Girl) He will get sicker and weaker. I was just getting some great contract offers for work. I had to cancel or turn them all down. My job now is 100% getting Jay and the girls through this. Again. And hope that none of us turn to hard drugs.

The girls initial reaction was what you would expect: It’s not fair, why us again, why didn’t the doctors do more to fix it sooner, all of the things that I have asked myself, they asked to. They had very different ways of handling it. And I know in the weeks and months to come, there will be a lot more questions and surely some questionable behavior. Moving is going to be hard on them. They love this house. We won’t be having epic pool parties anymore. All of the special things about this house – gone. For sure, we are very fortunate. We can afford to move and find somewhere else. I tell them all the time that it could in fact be much worst. But it’s sort of hard to focus on the good things when the bad things just keep punching you in the stomach. Over and over again.

 

6 comments

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  1. Anna in Turin

    V, I am so sorry your family has to go thru this AGAIN…..I truly hope the wait will be brief and that Jay can get his new lungs in a short time. Here’s to your family finding another awesome house …. Let me know if you, Jay or the girls would like anything from Italy….anything you cannot find or is hard to locate in Montreal….sending major hugs and gros bisous your way.

    all my love,
    Anna

  2. Tracy Smiley

    Wow. I was fingers crossed, legs twisted, that you were busy living the good life. The life that is not filled with endless craptastic appointments. I am so sorry to hear this news. I will be thinking of you and hoping that the perfect house has new and even better things for the girls and you to love. Hugs from Minnesota.

  3. Kikilia

    V- I am so sorry this is happening.

    I hope you find the perfect house and that another transplant is possible.

    Kik

  4. Steph

    So so sorry to read this. I hate that you have to deal with so much. I wish I lived in Montreal so I could help out in some way. But for now I’ll be keeping you + your family in my thoughts and hoping for some better news soon. Big hugs!

  5. meena

    I follow your blog and was hoping things were taking a turn for the better. Sending many hugs and good vibes your way.

  6. JoAnn in NJ

    There doesn’t seem to be any word that will be meaningful enough to express how much I feel for your lovely family. Sorry is too puny a word. Epic word fail on my part, but the emotions are in the right place. I am outraged and heartbroken for your family. I want so much for you guys to get a unicorn and rainbow ending to all this medical stuff going on in your world. I’m going to keep you all in the good place in my heart and head and hope like crazy that the next few weeks/months/years/decades are kinder to you.

    JoAnn

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