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I Survived the ICU

Title graphic — sand coloured background with turquoise and teal shapes. A circle shows a photo of me, a white woman in a white T-shirt and lounge pants sitting on the boardwalk, smiling. Text: I Survived the ICU. Logo for The Seated View

Trigger warning: Medical trauma

So, where was I?

The last time I posted, I had the flu and was pretty miserable. It was the precursor to a roller coaster ride into a very dark place.

The flu turned into pneumonia, which sent me to the hospital in the middle of March. There was a trip to the ER, admitted into isolation, and then to the ICU with Acute Respiratory Distress Syndrome (ARDS — only click on that link if you enjoy chills going up and down your spine). Interestingly, this may have had more to do with my asthma than my being immunosuppressed. Anyway, I was put in an induced coma on a ventilator, and had an emergency tracheostomy.

Soon after, I came as close as it is possible to dying, and actually flatlined for 10 seconds during another nerve-racking event.

Photo credit: Ken Allen.

Description: I lie in a hospital bed, ventilated and surrounded by medical equipment

We figure that officially makes me a zombie.

What? Too soon?

I remember none of it. Well, that’s not entirely true. There is a blank space between the several days before I went to the ER and when my memories started emerging again around March 30, just after waking up with the trach. I was sedated through much of the really scary stuff, leaving my family to cope on their own. Not particularly nice of me, but when you’re given enough sedation to down a horse, there isn’t much choice.

It wasn’t actually enough sedation to down a horse. I fought it hard, so it was enough sedation to put four men under. I find this endlessly amusing.

I’m really grateful to Ken for taking the photo of me sedated and in isolation, for knowing that I’d need it. It helps make the whole thing more real. Although truth be told, part of me is convinced that it is an elaborate Photoshop prank.

Given the crashing episode, everyone decided to be extremely conservative in how my case was approached. After waking up, I spent the next 10 days in the ICU, then was moved to a ward.

And was on a ventilator until two weeks ago. Which meant I spent 14 days being conscious, but not able to talk. I’m sure you can imagine my reaction to that!

It was … “interesting.” A separate post will follow about that part of the experience. For now, suffice to say that I will never shut up again.

I’ve been home for a little over a week now and am getting stronger every day. It’s going to take a while to get back to normal — lying in a bed for 33 days decimates your strength and stamina. I’m just being good to myself, eating as much as I can, and taking however long I need to get back to normal. And waiting for the tracheostomy stoma to close so I can really start to talk again!

There is so much about this experience that is overwhelming and deeply emotional. Especially hearing my family’s stories of the first two weeks when things were so dire. Noticing the way they keep looking at me with relief and wonder in their eyes, making sure I’m still here, still me, touches my heart and makes me realize how close it was. Which is also deeply weird, because my experience is, as I mentioned, of a blank space and waking up with the trach, extremely weak, but feeling remarkably like myself.

And that makes me a very lucky woman. To go through everything I did and come out the other side physically weak, but mentally just the same is fairly close to a double miracle. Both my GP and my rheumatologist attribute this to me being a healthy person prior to the nightmare. Which also sort of amuses me, what with having a chronic illness and all.

I am overwhelmed with the gift of life I have received.

I am beyond grateful to the staff of the MSICU and the Medical Unit at St. Michael’s Hospital in Toronto for all they did to save my life and get me back home.

I cannot say enough about the way my family (both biological and chosen) pulled together and rallied around me, their love carrying me through. There are so many moments that I remember — and a whole bunch I don’t — that made this hard thing easier for me.

I’m also so grateful for the support I received from my friends and people in my “real life,” as well as online communities. The comments on my sister’s Facebook posts, the prayers, the thoughts that went my way helped immensely when I was stuck in the ICU, scared and silenced.

And then there is The Boy. My rock, my safe person, the one who held it all together, took care of Lucy, came to see me every day, and dedicated himself to making my first week home as easy as possible. Thanks to him, the reentry into life was a gentle and protected slide.

There is so much more that I’ll talk about in later posts. For now, I’m going to enjoy being alive and being home.


Photo credit: DavidG

Image description: I’m sitting in my wheelchair, smiling, under a pink umbrella at Sugar Beach

24 Comments

  1. Kenzie @ Life According to Kenz on April 26, 2016 at 5:47 pm

    Oh, Lene. My prayers have been with you and they will not stop. I am so happy that you are home and taking all the sweet time you need to recover. Thank you for sharing this with us — you are incredible.



  2. Judith on April 26, 2016 at 6:05 pm

    Phew.



  3. Eileen on April 26, 2016 at 6:18 pm

    OMG I had no idea…I was dealing with my mom having open heart surgery and my car accident of which both my mom and I are doing ok. I am so glad you are doing better and have maintained your sense of humor. I will pray you continue to recover and enjoy life! <3



  4. Greida Quintero on April 26, 2016 at 6:31 pm

    Thank God! I am so happy that you are here again, your support and contribution is no over yet, you have much to give everyone like you struggle every day with our disease. I will pray you



  5. Colleen on April 26, 2016 at 7:41 pm

    Wow! I'm glad you are recovering!

    I was thinking about you before I saw this. There was something I saw I thought you would be interested in, but I don't remember it. Not important.

    Get better!!!!



  6. Renee H on April 26, 2016 at 8:00 pm

    Be well! ❤️ 🙏XXXOOO



  7. Vanessa Collins on April 26, 2016 at 8:08 pm

    Still keeping you in my thoughts and prayers, Lene. I think you have a wonderful family, and The Boy is a keeper! 😉 You just take your time and enjoy each day. You are such a life force in our RA Community online. You are truly loved by many. I hope that love helps you get better soon. You are a bit of a miracle, methinks!



  8. AlisonH on April 26, 2016 at 10:51 pm

    I cannot tell you how good it feels to see you home and recovering. A thousand thanks to Janne for keeping us posted along the way and to all those who looked out for you in all the ways your further-out community wishes we could.



  9. phat50chick on April 26, 2016 at 10:53 pm

    Hell and back you say! Lene, glad you made it through the darkness. What an ordeal, but it seems that your sense of humor is intact, if little else.

    Seriously, happy to hear from you. Keep talking



  10. cathy kramer on April 26, 2016 at 11:11 pm

    My heart is so happy to have you back. I went into panic mode knowing you were in the hospital but not hearing from you. A big thank you to The Boy for replying back to my panicked email and for keeping me up to date. We were missed like crazy.



  11. NVSunshineGirl on April 27, 2016 at 12:01 am

    Always enjoy your writing. Goodness gracious lady. Glad you are on the way to being healthy again. Bless you😊



  12. L."Wren" Vandever on April 27, 2016 at 1:00 am

    I'm so glad you're recovering and home, Lene. The world would be a darker, sadder place without you!

    Dr. Wren's orders: Take care of yourself, keep eating well, stay hydrated, rest when you can and be active when you can, and laugh out loud at least 10 times per day. Then check back in with us and let us know how you're doing.

    Sending a big hug, my dear. Pass it on to the Boy and the rest of your family for me, OK?



  13. Rick on April 27, 2016 at 2:30 am

    Lene, we have all been so concerned for your health. I am so glad you are feeling better. Take things in stride, recuperation is important.



  14. Abigail Goben on April 27, 2016 at 3:17 am

    Glad you are recovering!! I bet Lucy is happy to have you home too



  15. Pip on April 27, 2016 at 4:24 am

    Glad you are getting better!



  16. sylvia reynods on April 27, 2016 at 6:05 am

    If ever anyone could be called a fighter and a hero your it Lene,now i hope your body heal and you get back to what you were before all this happened darling.xxxxx



  17. Ann Wall on April 28, 2016 at 12:05 pm

    Lene, I am so inspired by you.So glad and relieved you recovered.Your humor, intelligence, kindness are so important to me and so many of your community. We Love you. Prayers for you.Don't overdo !



  18. MelissaH on April 29, 2016 at 5:53 pm

    We are very happy to have you back!



  19. LynnM on April 30, 2016 at 3:28 pm

    I was wondering where you were. That is SO not what I expected to read! What a terrifying ordeal for you and your family. So glad you're enjoying being home and alive. Whew.



  20. carlascorner on May 3, 2016 at 11:00 am

    Lene: I've been traveling but have been keeping up with your unexpected medical adventures. I'm glad I'm back on US soil and you're back home getting better. Do take care as you continue to recover. Thanks for filling us all in.



  21. Linda Perkins on May 5, 2016 at 6:08 pm

    Wow, oh wow! That you still had the strength to blog is amazing! Congrats on surviving such an ordeal! My favorite part of your story? That you said how hard it was to not talk for two weeks and “For now, suffice to say that I will never shut up again.” Ha ha ha, I wish I had that excuse for all the talking I do, LOL! You are too funny. Glad to hear you're doing better now. Keep smiling! 🙂



  22. Elizabeth on May 28, 2016 at 6:52 pm

    I can't begin to tell you how relieved I am that you are recovering so nicely! May your recovery proceed rapidly! Love to you!



  23. Melissa on October 3, 2016 at 2:30 pm

    Hi Lene. I found you through one of your books a couple years ago. Was diagnosed last year with RA Lung (Intersticial Lung disease), and was lying awake in pain one night very recently while trudging through a seasonal lung flare, and found your blog. You're my new RA hero!



  24. Becca on March 30, 2019 at 10:58 pm

    Hi, I stumbled upon this blog post and felt compelled to comment. First of all I have to say, you send like an impressively strong person to have gone through everything you went through with a chronic illness and dying and needing to be on a ventilator with a trach for a prolonged period of time. I can really empathize with your post. I’ve never had a trach, but I died and was resuscitated twice myself. By all odds I should be dead or at least have some serious brain damage, but mentally I’m still all there. I may be bedbound, on multiple IVs through my central line, have a GJ tube, oxygen, catheter and more, but my brain is untouched. Anyway I felt like I connected perfectly with what you were saying in this post, the looks people give you when you first come home, and the way you feel when you’re on the ventilator and “silenced”