I Survived the ICU

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.

 Photo credit: Ken Allen

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

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: David Govoni


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.
Judith said…
Eileen said…
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
Unknown said…
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
Colleen said…
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!!!!
Renee H said…
Be well! ❤️ 🙏XXXOOO
Unknown said…
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!
AlisonH said…
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.
Anonymous said…
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
Unknown said…
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.
NVSunshineGirl said…
Always enjoy your writing. Goodness gracious lady. Glad you are on the way to being healthy again. Bless you😊
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?
Rick Phillips said…
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.

Abigail said…
Glad you are recovering!! I bet Lucy is happy to have you home too
Pip said…
Glad you are getting better!
Unknown said…
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
Unknown said…
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 !
MelissaH said…
We are very happy to have you back!
LynnM said…
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.
Anonymous said…
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.
Linda Perkins said…
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! :-)
Elizabeth said…
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!
Anonymous said…
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!
Vivi said…
Hi Lene, your blog came up while I was searching for tracheostomy online.

My mum is currently in an induced coma and has been diagnosed with Acute Respiratory Disorder following a pneumonia infection. She lives in Cyprus.

She has historically been very uncomfortable with anything dealing with doctors or hospitals and a light-smoker.

During her care and because of the stress to her lung, it developed a puncture and she went into cardiac arrest. Thankfully they were able to revive her quickly.

The docs are saying that they may need to do a tracheostomy (she's been in the hospital for a week now) but are monitoring her oxygenation levels.

Your description of your experience has been very insightful as we want to do everything we can as a family to ensure she has the strength to come out of this while also minimizing any potential PTSD. I am so glad that you have come out of this experience and able to share this with the world.

I am her son, we are an Indian family and we are clueless on how much pain she must be in. We are sending her daily prayers and sending her all our strength.

If you could share anything else that would be particularly useful for us / her, we would deeply appreciate it.

Continue being your strong self.

Warm Wishes for the holidays ahead,

Lene Andersen said…
Hi Varun,

So sorry to hear about your mom — I can only imagine how difficult it is for your family, and for her. Do I understand correctly that she is in an induced coma and you are not they are with her? My best advice is to take it one day at a time and keep sending as much love as you can. Although I did develop PTSD after this incident, I wouldn’t have changed anything. Let the doctors do what they have to do to save your mom and worry about the rest afterwards. Counseling has helped me to get better emotionally, but I couldn’t do that without the miracle of being alive. One thing that I do recommend is for either the staff at the hospital or those of your family/friends who are there with her to keep a diary of what’s happening, both in terms of medical interventions, and just the day-to-day. If she does come out of this with PTSD — possible, but not certain — having a record of what happened to counteract the distorted memories can be really useful in combating the development of PTSD
Vivi said…
Lene. Just wanted to let you know that my mom is back at home after a month in the ICU. We are very happy that she is back home and I wanted to thank you for offering the advice above. It helped us cope as we sailed through some rough seas and better prepared for the journey ahead. We did maintain a record of her time in the ICU.

Thank you and our family sends you love and warmth,


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