2016: What goes down, might come up

2016 is a big dog dragging me toward 2017. I’ll explain in a minute. First, some backstory.

The year didn’t start well. January, February and March, my arch-nemesis months, delivered days ripe with fresh/nasty viruses, leading to two separate hospital stays.  Bad hospital stays. Both were filled with fevers, chills, severe SOB, and raging headaches. I ate Tylenol and yogurt and worked each day, barely, waiting for my late afternoon crash and burn facedown on the plastic bed.

I spent 24 days in the hospital and 12 days on home IVs over the course of two stays, leaving with my lowest lung function and O2 readings ever. And a bloody nose from sinus surgery as a bonus.

I left the hospital sniffing O2 24/7. The CF Clinic called it a “milestone” stay, but not in a good way like you’ve reached something great in your life. I learned that milestones can work backwards, in a bad way, in the medical community. I like them the other way.

So I wore oxygen in public for the time. Me no likey. I hated it. One website compared it to any other physical limitation, like wearing a knee brace. Sorry, I didn’t see it that way and still don’t. The oxygen cannula lives on your face, for everyone to see. It’s hard to hide if you don’t want to talk about it.

I didn’t accept this O2 milestone as fact. I got lucky. I have to thank a wonderful member of the CF Clinic team for giving the right tool for the job of getting off oxygen. She gave me an Aerobika. I started using it for 3 hours a day, and the poisonous oyster scum rose from the depths of my lungs and I got better. Slowly, but better.

(The Aerobika reminds me of the Flutter, but is easier to use, and works during treatments, a real bonus of doubling up on time. End of Aerobika commercial.)

Skip ahead to July.

IMG_2298

We went island hopping. This is Salt Spring island with Vancouver Island in the distance.

My family and I went to Vancouver Island for 9 days and had the greatest vacation ever. Forests, ocean water, jellyfish, ferry rides, deer, snakes, one raccoon, sheep, crabs, birds and awe-inspiring dinners every night in Victoria . And high-tea at The Empress Hotel.

I felt great. I climbed city streets, stairs, hills. I went paddle boarding and zip lining. All with no to little shortness of breath.

A miracle. I’m grateful. As if I needed more proof I’m the luckiest guy in the world.

I flew on a plane with no issues, though I have to use O2 now.

Which brings me back to that big dog dragging me to 2017. I’m one bad hospital stay away from needing O2 24/7 again, perhaps permanently. It’s coming. It is. Something oxygen this way comes.

I’m milking every day and every moment until then. Summer can’t go slow enough because I know “winter is coming.” And somewhere out there is a virus waiting, lurking, ready to etch its name into my lungs.

It will happen. I’m not looking forward to it. I can’t slow the damn clock. It’s such a strange feeling knowing that beating is on the way and knowing there isn’t anything I can do to avoid it. I just have to make it through whatever happens because who knows what next summer will bring. Perhaps, something magical like this summer. I can hope.

 

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14 thoughts on “2016: What goes down, might come up

  1. John,

    It’s so good to see you posting again but sorry that it came out as a mix of the good and bad. I was wishing it would only be the good.

    Knew that you had mentioned an earlier hospital stay but had no idea it was that serious. But then again, any hospital stay is serious. Glad that you recovered and had a fantastic vacation, I’ve been thinking about how nice it would probably be to visit Vancouver Island. Might have to make it out that way and see sometime in the future.

    Again, glad to see you posting again and thanks for the update.

    Keep milking it and wishing you many more magical times.

    Larry

    • Hi, Larry,

      Thanks for first to comment on this post, a first after a long absence. You would love Vancouver Island. Camping galore. However, now that I think of it, you live in a place with forests. No need to go there. Unless you want the great food and amazing ocean views. Never knew there were some many smaller islands there.

      John

  2. Hey Hollywood! I too, have been raised from the dead. I received new lungs on January 1 and then headed directly to ECMO, and then trached on my 40th birthday, January 18 until May 8. I finally got paroled on May 26 and I’ve been slowly learning to walk again. It’s tough, but I have new lungs with no rejection. Still waiting for the big huge breath (up to 58% right now) but I’m planning my exotic vacation for the end of November when I’ll have what you had in Vancouver. I can’t wait. I hope your summer slows down. Mine is going too fast. The twins start seventh grade in 2 weeks. I’m just glad I’m here to see it.

    • Hi, Tara,

      Thrilled you replied. Thrilled you have new lungs. Not thrilled about ECMO. But I’m glad you’re still in the game and still there for your kids. I’m truly glad you get to see them enter 7th grade. Mine is going into high school and I never thought I’d live to see her do it. My goal is to see her graduate from high school.

      Can’t wait to hear where you’re going on vacation. Not sure Vancouver Island is the place to go in November. A bit cold for my taste.

      What happened that you had to go on ECMO?

      John

      • I don’t remember the ECMO, I don’t remember the first half of January. I was on ECMO directly after the surgery. My lungs were too “wet” to work. They had to dry out I guess. The two lower lobes on each side were collapsed and infected from the get go. I had one surgery in February to open the right side and one in March to open the left. I had more blood transfusions than I can count and about 10 surgeries later, I was done with surgeries and then my body had to recover from all the trauma. I had major PTSD anxiety for a lot of my hospital stay.

        After ECMO for 10 days I was placed on the ventilator and that didn’t come off until May 8. It was a really long winter. That’s why we’re going to Hawaii in November! We’re staying on O’ahu and I’m in charge of the planning. There’s a group of about 15 going with our family. It’s going to be fun.

      • Oh, my gosh. Words escape me. I can’t believe you went through all of that. Unreal. I am thrilled you are going to Hawaii in November. I would live there if I could. Have a great time. Thanks for staying in touch with me and letting me know what has been going on with you and the kids. I’ll wishing great things for you every day.

  3. You must stick around a lot longer than hs graduation – who else is going to bug your daughter as good as you?

    ❤ ❤ ❤

    Here's to many more miraculous family vacations TOGETHER.

  4. Hey! It’s so good to hear from you! I’m so sorry for the rough new year but glad to hear you got off the O2 full time and were able to enjoy your vacation. What a miracle. I’d love to know more about the Aerobika.

    Sending love and good wishes,

    Margie

  5. I love my Aerobika! I’m so glad you had success with it. Three hours a day it a lot of airway clearance. You’re hard work paid off! I’m so glad you recovered and were able to enjoy vacation.

    I’m on my 12th week of IV’s, but I’ve done them all from home. I’ll find out this week how much longer. It’s annoying.

    So glad you posted!

    Stacey

    • Hello, Stacey,

      The Aerobika is awesome. I used to use the Flutter, but that was twice the work. 12th week of IVs? argh. At least you’ve been home (small consolation but it’s better exercise, as I hibernate in the hospital). Hope you find out you’re done with them.

      Thanks for the note. Good to hear from you.

      John

  6. Dear Madman

    When the cold dark fingers of CF wrap themselves around you they don’t like letting go to easily!! Pleased to see that you managed to escape them and have a brilliant time on Vancouver Island and to be able to fly as well must be a bonus?

    Girls both doing really well at the moment, Robyn has now moved over to the adult CF team, which makes me feel even more older.

    Keep well my friend.
    Sean
    (aka the man with the target on his chest!)

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