“Sleep has become a process.” Checking in with idiopathic pulmonary fibrosis patient and PatientsLikeMe member Lori

Posted November 11th, 2013 by

Some of you probably remember seeing her on the PatientsLikeMe blog before. Lori is living with idiopathic pulmonary fibrosis, and when we first chatted with her last July, she shared her experiences with blogging, the difficulty in finding the right diagnosis and how connecting with others has positively impacted her life. For our “Are You Sleeping?” initiative, the PatientsLikeMe community is taking a closer look at how sleep impacts our health, but also how our health affects sleep. Check out what Lori has to say about it in our follow-up interview with her.

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Don’t forget to check out Lori’s blog too, called Reality Gasps. She balances stories of her daily struggles with dashes of humor that can make anyone laugh.

How have you been doing since the last time we talked? It looks like you said on your blog that you broke an ankle?!  

I did break my ankle and had to have surgery to put in a plate and 8 screws! I had refilled the bubbler on my concentrator and didn’t realize I hadn’t screwed it back on just right. As a result, I wasn’t getting enough oxygen and when I stood up, my sats dropped quickly.  I collapsed and must have twisted my ankle, dislocating it and breaking the tibia in the process.  Surgery was quite an adventure. Because of my IPF, I can’t go under sedation, so I had a spinal and was awake for the whole thing.  I have three weeks left in the cast, and then I’ll move to a boot. I’m basically chair-bound right now, so I am eager to get mobile again!

We’ve been talking a lot about sleep on PatientsLikeMe lately. What are your sleeping problems like? Have you been officially diagnosed with insomnia?

I don’t have an official diagnosis of insomnia, but it is definitely a side-effect of my medication. I am on prednisone, which can cause insomnia at higher doses. I was just getting over an infection when I broke my ankle, so I was on a higher than usual dose of prednisone.

In addition to periodically having troubling getting to sleep, I also have periods where I wake up several times during the night because my O2 sats drop. Everyone breathes more shallowly when they sleep, and if I am having a flare or an episode, this can be a particular problem for me at night. Since changes in weather can affect my breathing, I’ve been having more trouble during the past few weeks.

When I do wake up at night, I check my sats immediately. If they’re low, I do some deep breathing to bring them up and can usually drift back off to sleep. Though, I have unintentionally started my day at 4:30 or 5:00 in the morning more than a few times!

How do you think lack of sleep impacts life with IPF? Or is it the other way around for you, that IPF affects how well you sleep. Maybe both?

I think sleep and IPF are definitely intertwined for me. To make it easier to breathe, I sleep with my head elevated. I was never a “back” sleeper, so I’ve had to get used to a whole new position. It still doesn’t quite feel “natural” to me, and it becomes one more thing to obsess about on those nights when I just can’t fall asleep. And as I’ve mentioned, medication and O2 levels affect my sleep as well.

When I can’t sleep, I get sluggish, both mentally and physically. Mental fog is especially dangerous because I need to be aware of how my body feels at all times. If I am moving and my oxygen supply cuts out or is reduced, I collapse within seconds. That’s how I broke my ankle. More directly, I notice that I cough more and my chest generally feels tighter if I am fatigued. Plus, when I am tired, it’s hard to get up the energy to keep moving. And one thing I’ve learned is that remaining active is a key factor in fighting IPF.

You mentioned that you take Ambien sometimes, but that it might not work if you’re on other medications too. Can you tell us about that? 

I take a low dose of Ambien, which usually is just enough to let me drift off to sleep. But, when I am on higher doses of prednisone, Ambien often won’t cut it. My doctor gave me a dosage range of 5-10 mg so I could adjust for those situations. But I’ve found that when I take 10 mg, I wake up feeling really groggy and that feeling lasts for several hours. I also worry about taking too much sleeping medication because I don’t want to subdue my nighttime breathing too much. I’ve started using relaxation techniques in addition to the Ambien, and this seems to be helping.

I still long for those days, though, when my bedroom was quiet (no huff-chuffing machines) and I could flip onto my belly and just snuggle down for a lovely snooze! Like everything else with my disease, sleep has become a process.


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