EPISODE 2 - TRANSCRIPT
Disclaimer:
The following podcast episode contains a discussion of personal experiences of medical diagnoses and procedures. None of the people featured are medical professionals, and you should seek your own medical advice from your own doctor if you suspect that you have sleep apnea.
Emma Cooksey:
Hi, everyone. It's Emma Cooksey here, and this is Episode Two. I just wanted to say a really big thank you to everybody who listened to the first episode and also reached out to me by email or DM on Instagram just to say that you really enjoyed hearing my story and that you could relate to it. I really feel like we're already building a little community, so that was really awesome.
I'm still looking for people to interview about their own journey with sleep apnea in upcoming episodes so if you're interested in that, just reach out and get in touch on Instagram, it's @sleepapneastories, or by email is sleepapneastories@gmail.com.
Okay, so on to today's episode, we're going to be talking to Karen Wolk. I was lucky enough to get in touch with Karen and hear her story. I think you're going to be really blown away by just what a big impact sleep apnea was having on her life and what a big turnaround she had when she found the right treatment. So, here's my conversation with Karen Wolk.
Emma Cooksey:
Hi, Karen. Thanks so much for joining me today. I just wanted to start by asking you just where your journey with sleep apnea began.
Karen Wolk:
My journey with sleep apnea actually started way before I knew that I had sleep apnea. My symptoms really started to manifest to a point where it was hard to ignore in late 2011, and that landed me in the psychiatrist's office.
Emma Cooksey:
I think that's so common. That's kind of what happened with me so I'm really interested to hear your take on it. So at that point, was it depression or you were having memory issues? What was the main driving factor of that?
Karen Wolk:
As I recall, my most predominant symptom towards late 2011 was panic attacks and anxiety that kind of came along with them, and then a lot of memory loss, and then the depression that kind of came with knowing things were happening, knowing the memory loss was happening. Word finding was the first thing I noticed. I remember I used to be a trainer for an electronics company. I used to be a sales representative/trainer. I was training a team of electronic store employees about a camera lens and about a camera, and I couldn't remember the words “lens cap”.
Emma Cooksey:
Oh my goodness.
Karen Wolk:
It was the weirdest thing to look at a lens cap and not know the words lens cap. I had been doing this particular training at many stores before that. I remember that moment when I couldn't find the words, and then I remember that I knew I knew the words and I hadn't written anything down because why would I ever need to do that? So it became pretty obvious to everyone around me that something was wrong.
Emma Cooksey:
Did that happen gradually, like did you start to think, "What did I come here for?" Or was it more of a sudden thing where you suddenly were at work and couldn't remember these basic words?
Karen Wolk:
I think it was very gradual. It also came up in my being prepared for the store visit. Not knowing what materials I needed to bring with me, not even knowing. We would pay attention to what week it was and be really conscious of our sales numbers. I had trouble retaining information. I also remember when things got really bad, I had trouble with reading email and understanding it.
Emma Cooksey:
Wow.
Karen Wolk:
And as it progressed, between late 2011 and 2015, that's when the symptoms kind of shifted and the treatment started to shift. My psychiatrist originally put me on medication for ADHD. It was Strattera. What was great about Strattera was it was non-habit forming, non-stimulant (to a point) ADD medication. What was not great about it, was it increased my heart rate.
Emma Cooksey:
Oh dear. Which if you're having panic attacks and feeling anxious, is exacerbating your problem, really.
Karen Wolk:
Right.
Emma Cooksey:
So that was the very first treatment you tried though?
Karen:
Yeah. We did that for a few years and then there came a point where, because I genetically have low blood pressure, when you have a high pulse and low blood pressure, that doesn't work really well.
Emma Cooksey:
No.
Karen Wolk:
So I was having problems with dysautonomia and I would have what they call a vasovagal syncope, so I would just randomly pass out.
Emma Cooksey:
Were you able to hold down your job?
Karen Wolk:
Yeah.
Emma Cooksey:
Wow.
Karen Wolk:
Until around 2015, 2016. That's when everything started to get really bad. Then I went out on a work disability leave. By then I was going through my sleep apnea journey where I actually got diagnosed and I was doing the treatments. So I did switch from going to psychiatrists who sent me to the neurologist who sent me to the endocrinologist and the rheumatologist, and we kind of tried to rule out all of these things. I remember at one point I was seeing this rheumatologist and she said, "You might have fibromyalgia," but at the same time, I was going to a sleep doctor and getting a sleep test when they did the sleep study, they said, "You have sleep apnea," I came back to the rheumatologist. She said, "Well then you don't have fibromyalgia." And I'm like, "Oh, well yay.”
Emma Cooksey:
It always surprises me in retrospect when I hear people's stories that even though the medical professionals you went to see we're not experts in sleep disorders, it's surprising to me that people are coming to see any medical professional and they're saying, you know, "I'm having anxious feelings." Like I would tell everybody I have headaches in the mornings and I'm sleepy all the time, and it's really surprising in retrospect that nobody suggested having a sleep study. Did you feel the same way?
Karen Wolk:
I had a pretty proactive psychiatrist. He was almost acting as a primary care physician. He sent me around to all these specialists. I started seeing him in late 2011. I was physically seeing him in his office for years every week so he got to know everything about my level of functioning. I mean, he has notes and notes and notes of how I was doing, but he was the first to kind of guide me towards finding out something about sleep. Since all of this has happened to me, he continues to be my doctor. He now asks all his patients first about their sleep.
Emma Cooksey:
That's terrific.
Karen Wolk:
So yes, I believe that it's pretty common, number one, for women to kind of be sidelined.
Emma Cooksey:
Yes.
Karen Wolk:
Not on purpose, but because their symptoms are so significant and they seem to come out of nowhere. Medicine is practiced and there's nothing that's clearly defined. Because everyone has their area of expertise, like some people it's the brain and some people it's the, let's say endocrine system or, everyone has their area. I find that it's hard to find a doctor who's an expert in all areas.
Emma Cooksey:
Like a generalist, yeah.
Karen Wolk:
I never could find a general practitioner that really understood what was going on, so I just really relied on my psychiatrist. He was the first one to really understand because my symptoms manifested psychiatrically first, and then he kind of drove me in a different direction and said, "Your symptoms seem organic," like something is neurologically different and the memory loss just became more and more significant. Then eventually I got diagnosed with a mild cognitive impairment. He guided me to the neurologist and then the neurologist ran a series of tests to try and see what was going on because I was having so many, a myriad of symptoms and they didn't necessarily all look like they're related to something unless you finally found out about sleep.
Emma Cooksey:
When you say a mild cognitive impairment, you said about forgetting what a lens cap was called. What other kinds of things? Was it mainly a memory issue where you just couldn't remember names for things?
Karen Wolk:
It started as recalling words or word-finding is what we defined it as. Then it started to become remembering people, remembering names of, just names of objects in general, even how to use some objects that maybe. I remember specifically, I had this Pampered Chef can opener. That can opener is really unusual. The mechanics of it and the spatial orientation and hand-eye coordination, all of those things that I took for granted, it was very simple to use that can opener. That's why I bought it, right?
Emma Cooksey:
Right.
Karen Wolk:
I couldn't even remember how to use it. Then I would start to forget people. Like if I saw you in one location, let's say at your work, and then I saw it at the grocery store. I had somebody say, "Long time no see," and it took me the whole day to figure out why they said that because I didn't even know who they were, but I had seen them earlier in the day at their work and then I saw him at the grocery store.
Emma Cooksey:
That's kind of distressing. Was that quite upsetting for you when that happened?
Karen Wolk:
It made me scared. I documented a lot of it. I have tons and tons of notes. What that led me to do is store almost everything I ever needed to know on my phones. First, it started with reminders and calendar items, and then it started to be everything. I started to document, if you look at my Instagram account, you can see that I was almost housebound for quite a while because I wasn't able to function in the world, I took a lot of pictures and posted them. I pretty much lived on Instagram. The memory loss turned into everything, at my worst I didn't recognize my boyfriend at night.
Emma Cooksey:
Oh my goodness.
Karen Wolk:
I remember he kissed me goodnight, I looked at him and I was like, "I know I should know who you are, but I don't."
Emma Cooksey:
Oh that's so difficult ... I'm so glad that this story has a happy ending.
Karen:
Yeah, yeah. So it was really weird. It got progressively worse. And I did try the treatments and all.
Emma Cooksey:
You did eventually get diagnosed with sleep apnea. Did they give you a CPAP or what was the first thing?
Karen Wolk:
Yes, that was the first step. I started with a CPAP and I did that therapy for about a year, and then I was switched over to BIPAP. So all in all it was two years of CPAP and then BIPAP, and that came with cognitive behavior therapy for insomnia. I had nightmares from the mask, and so I did that cognitive behavior therapy. I would go in for sessions and I also learned sleep hygiene.
Emma Cooksey:
So when you're saying that you needed to go for help, you just found the mask really uncomfortable and did you have a claustrophobic thing going on? What was the issue?
Karen Wolk:
Yeah, so I have claustrophobia and I would wake up and pull the mask off and then not really remember. And then wake up covered in sweat three, four in the morning. I'd be up for a couple hours. I have nightmares about just putting the mask on. You know, I put it on and then I feel like I'm suffocating. I found out I had like aerophagia and I was swallowing air. I wasn't really doing a good job of breathing.
Emma Cooksey:
Of just breathing.
Karen:
Then I had esophagitis from the pressure.
Emma Cooksey:
Goodness, gracious. Then there also, I noticed in your bio, you did have nasal surgery at one point. Was that after the CPAP? Or when was that?
Karen:
When I started CPAP, I was sent to an ENT surgeon to kind of look into my nasal turbinates and see because the sleep doctor had said that, "I think there's an issue there, I'd like you to go see this doctor." I did. And they did a nasal turbinate reduction, and that whole point of that would be so that I could tolerate the mask.
Emma Cooksey:
Okay. But in the end, that did not have the desired effect?
Karen:
It actually was nice because, for the first time in a long time, I was able to breathe at all through my nose, but it didn't resolve the problem that I wasn't tolerating the CPAP. While I was looking compliant on paper and my AHI numbers were reduced, I didn't ... my Epworth Sleepiness Scale, which people take those tests when you go in for your visit, you do a survey, and then I find out my sleepiness scale has me like a very high number, and I took a pill to stay awake. So I was so tired that I had to take a stimulant for a year just to stay awake so I could function.
Emma Cooksey:
At that point, you're not able to work at that point?
Karen:
I wasn't able to work for about a year, and then I got hired to work for the company I work for now, and I was working part-time, so I was able to work enough. The pill was giving me enough time to work just enough. Then I needed to get off of my one COBRA and on to their policy. I needed to be able to work 30 hours. That was my goal. So this pill, I kept increasing the dosage because it stopped being effective. I was able to get to my 30 hours a week by working six hours a day. That was the maximum.
Emma Cooksey:
You're basically taking a pill to keep you awake at that point?
Karen:
Yeah. That was the time where I was waiting to get approved for my implant.
Emma Cooksey:
Right, so now let's get onto the implant. I'm hoping maybe you could just tell us a little bit about how you found out about the implant and just a bit about your journey, about how you thought you might be a candidate for it.
Karen:
The same surgeon who did my nasal turbinate reduction happens to also be a surgeon that does the Inspire implant. I went to see him because I found out about it and because he had a brochure about it. I asked about it and in order to become a candidate, you have to go through a few steps. He thought I might be a good candidate so it would be good to try. The other alternatives didn't sound very appealing to me. There were some other surgeries but their rates of success depended on a lot of things, and it would depend on my anatomy.
Karen:
The reason I decided to move forward with the Inspire was that it was something to hope for, because I had pretty much lost hope. By the time I looked at Inspire, I was severely depressed and I had suicidal ideation. I was told by a couple of my doctors that without successful treatment, they didn't see that I was going to improve. In fact, I might decline, most likely.
Emma Cooksey:
So in terms of your cognition and that kind of thing ...
Karen:
Cognition, yeah.
Emma Cooksey:
They were saying that it was going to get worse?
Karen:
It's going to get worse and potentially turn into a form of dementia. That wasn't really something I was willing to accept as my future, and at this time, I'm still noticing all of the memory changes. I haven't gotten to the point where I don't know it's happening.
Emma Cooksey:
So the Inspire thing is kind of, it almost looks like a pacemaker, right?
Karen:
Correct. Yeah. It's a small device about the size of a pacemaker.
Emma Cooksey:
Do they do a little surgery to put it inside your chest?
Karen:
Correct. There are three incisions, one on the neck, under the chin, and everything's on the right-hand side. A pacemaker, generally they put on the left-hand side. Then the battery, which is the same form as a pacemaker, that's on my right chest, and then I have a sensing lead that they had to have put in too, so there's a wire that runs a lead between my rib cage. Between my ribs. Basically the functionality as I understand it, I inhale or “inspire” and the sensing lead notices that and instead of the way that I normally sleep where my tongue blocks my airway, now my tongue moves out of my airway, gently with the stimulation, so air on every inhale. So it's kind of like a really cool system that allows my body to do what it naturally should be doing without disrupting my sleep.
Emma Cooksey:
And there's no mask, like from the outside, you can't see anything? So there's a remote control that you're using to send the device a signal, but it needs to be on because you're going to sleep? Is that kind of what’s happening?
Karen:
Right. It looks like a mouse that has a button for a plus and a minus button inside. There's a ring that goes white when it's off, and there's a green button in the middle that is play and pause, and then there's a gray button at the bottom and then on the back, this is where the magic happens. At the office, they turned it on. So you get your surgery, get the device implants, they put the device in and then you come back to the office to have it activated about a month later. They let you heal up first and then they turn it on. So the turning on in the office, they have a programmer. What they do is set the minimum and maximum level of stimulation. They try to find a therapeutic level and you're going to go home and you work your way up the remotes. You start at like level one, which everybody's level is personalized.
Emma Cooksey:
Is different. Okay.
Karen:
Or unique, unique for them. The amount of voltage that's connected to the level that I'm at is all specific to me. So you want to make it so the patient is comfortable. So you start at this level one and then I go home and work my way up the remote, and there are 10 levels here. Then you would return after you've worked your way up the remote, so every week or so, you'd turn it up one notch with the plus button. Then basically turn it on.
Emma Cooksey:
So the remote is talking to the implant that you have in your chest?
Karen:
Yes. Yes. I'm going to try it again so you can hear it.
Emma Cooksey:
Oh yeah.
Karen:
So it starts with the white light. When I push the button, it's going to turn green and my tongue will move out of my airway for about four seconds, and then 30 minutes later, the therapy starts when I go to bed at night. And it could be if I'm going to take a nap too. It doesn't have to be at night.
Emma Cooksey:
So here's what I kind of wonder about it. Does it feel like you don't have control of your tongue or is it more of a light movement? What does it feel like?
Karen:
It's an involuntary muscle movement. It's a motor nerve, not a sensory nerve, so it's not painful. When they first activated the device, it moved my tongue out of my airway for four seconds. It actually was, it felt funny. I actually was laughing.
Emma Cooksey:
But it's not painful or anything like that?
Karen:
Not painful, just different. And at night when it's running, you can pause the therapy and let's say, have a drink of water.
Emma Cooksey:
Go to the bathroom.
Karen:
Go to the bathroom. I'm to the point now, I don't even pause it when I use the bathroom. I just let it run. Now, if I have a conversation and it's running, I'm likely to sound kind of funny.
Emma Cooksey:
Okay. Because your tongue is still moving.
Karen:
Yeah, your tongue is still moving. Every time you inhale, your tongue is stiffening, opening the airway a little bit, and because your tongue is moving out of the way and allowing you to breathe. So rather than having an apnea event, now you're missing them because you're having an open airway.
Emma Cooksey:
Right. Great.
Karen:
Since I've been implanted, most insurance companies are covering it now.
Emma Cooksey:
Oh that's great.
Karen:
Including Medicare and the VA and most insurance companies. Not everyone, but they have this amazing team. I had this lovely lady named Terry, namedrop! She helped me through the entire time that I waited for approval. We had to do some interesting things, had to go through appeals from denials. Then we had to do an independent medical review and eventually I won, but if I didn't have Terry, I don't know if I would have won.
Emma Cooksey:
Well, especially with the symptoms you were dealing with at the time, it's exactly when you don't want to be fighting with insurance companies.
Karen:
Yeah. She helped me to kind of get my ducks in a row. She was ready for all of the issues that might come up because they were working with other patients. Because of what I went through and other patients went through, now the approval process can be really rapid for a patient versus back then.
Emma Cooksey:
That's great.
Karen:
The only really good way to find out if someone's a good candidate for Inspire would be to see one of the Inspire providers.
Emma Cooksey:
One of the doctors.
Karen:
Yes, one of the doctors. Either one of the sleep doctors that are familiar with the therapy or, and they have them on their website, you can find that really easy by zip code, is to go in for a consult. For me, just knowing this therapy existed gave me hope. It bought me a lot of time, that I probably would have just been done.
Emma Cooksey:
I'm so glad you found it.
Emma Cooksey:
How long has it been now since you got your Inspire implant?
Karen:
I was implanted in July of 2018, so it's actually been two years and one week.
Emma Cooksey:
Okay. And how has your life changed,
Karen?
Karen:
My life has changed in many ways. I work full time. When I sleep, I sleep at least eight hours. I don't gasp for air. I don't snore really loud. I don't wake myself up. I don't yawn all day long and try and find time to take a nap. I'm able to hold conversations, have meaningful relationships that wouldn't have been possible before.
Emma Cooksey:
How about your cognition? Has that gone back to normal or where are you with that?
Karen:
My cognitive function, I would say that about three to four months into getting the implant, there was a significant improvement. I have not gone to get retested, but from what I can tell and from what my other doctors have told me, I wouldn't be able to perform at the level I am if I was still impaired. I can tell my symptoms are almost gone.
Karen:
If I have a bad night of sleep, just like anyone else, some of the stuff comes back. If I don't use my device, which very rarely happens, but if I forget to turn it on, I go back exactly the way I was. So the only difference between me and you on a night, let's say you don't use CPAP and I don't use my implant, don't turn it on, we're going to be basically the same. All I have to do is grab a fresh set of batteries every once in a while and I can go anywhere I want. They do change the battery. The battery life of the implant is like around 11 years, so I do have to go for that.
Emma Cooksey:
Okay. That's the battery actually inside your chest where they put it in?
Karen:
Right.
Emma Cooksey:
Got it.
Karen:
I do have to have that replaced around 11 years and any 11 years past that, that I'm still here.
Emma Cooksey:
Yeah, you're like, depending on how many 11 years ... I don't know, might be quite a lot.
Karen:
Yeah. I figured ... I did remember someone saying, "Why would you want to get that? You're so young," and I'm like, "That's my point."
Emma Cooksey:
Right.
Karen:
I want to be around.
Emma Cooksey:
Right, exactly.
Karen:
So yes, it was a kind of ... like you said, it hasn't been around for a long time. A lot of people didn't know what it was until kind of recently, but it was FDA-approved in 2014. It's just that it takes a while. I know that when I had my implant put in, there were 3,000 patients, and I know there's way more than that now. A lot of patients.
Emma Cooksey:
So yeah, I suppose the more that the insurance companies cover it and go through the process, the easier it's going to get for everybody else coming after you.
Karen:
Right.
Emma Cooksey:
You're like a pioneer.
Karen:
Yeah, I'm like a pioneer. That's me.
Emma Cooksey:
The last thing I wanted to ask you about was, and I feel like I've drawn out some silver linings from having sleep apnea and just all of the kind of struggles I've gone through. I was just wondering what you think the silver linings to this journey had been for you?
Karen:
Well, so many silver linings. I love this idea of thinking about this. I would say that number one, I now have an understanding of what it's like to struggle to be able to do things that used to be easy. I think when I look at somebody who is suffering from cognitive impairment, I now can understand what that feels like and it gives me a unique understanding of how it feels on the inside rather than what it feels like to watch.
Karen:
Then also I can tell ... I guess it's kind of interesting to know who you could count on. Some people are like, you know, there's the friends that are there when everything is great, but you know you have a really good friend when they're there when things aren't great.
Emma Cooksey:
Yes. Like they're not a fair-weather friend.
Karen:
Not a fair-weather friend. They're my rainy weather friends!
Emma Cooksey:
Yeah, exactly. I have a bunch of those too and it's a wonderful thing.
Karen:
Yeah. And then I've met so many patients on their journey, and whether it was somebody that I met who after talking to me, went and got a sleep study and is now, I have several friends. I would say at least a dozen friends who have talked to me, found out that they had sleep apnea, have been treated both with CPAP successfully and actually, a couple of my old friends have Inspire now.
Emma Cooksey:
Oh, that's terrific.
Karen:
In their journey, one specifically, their journey was unsuccessful and for years they had been suffering and not getting a therapeutic benefit from CPAP and they had given up and they weren't doing anything.
Emma Cooksey:
When CPAP works for somebody like I have mine on nine hours a night and I'm at least getting oxygen to my brain and it's reduced how much I stopped breathing and everything. But for so many people, they don't even get any of the benefits because they just can't get used to it and they don't like it. So they kind of just give up, which is just having untreated sleep apnea can be so dangerous.
Karen:
So dangerous. I think that the other silver lining. I mean, I can think of a billion, but I think I've taken away the stigma a little bit, specifically for women, but I've had several male friends that are very successful with CPAP. I asked one of them recently, "What would you have done different," and they said, "I would have listened to you earlier if I had known how good I was going to feel." But everyone's afraid, and that's one message that I think that the physician community needs to know. Even doctors treating sleep apnea. The reason why their people person gets to your office is probably because they're terrified. The last thing they want to hear is that they're non-compliant. The thing I would love for doctors, to change the language and talk about adherence because adherence isn't a helpful term.
Emma Cooksey:
Right, exactly. Yeah.
Karen:
I found that doctors who just change their language a little bit and use the word adherence and not that insurance-based model of compliance, that that patient is likely to be more receptive.
Emma Cooksey:
It just changes the whole tone of the interaction at that point. The sleep doctors that I've seen, it's not that they did a terrible job, but I was kind of sent home with a CPAP and then, really C-PAP is a difficult thing to get used to using. I feel like there needs to be a lot more support rather than just saying, "Look, these are the results. Here you go, off you go."
Karen:
I think the organizations like the American Sleep Apnea Association have so many great programs.
Emma Cooksey:
They normally have a conference, don't they?
Karen:
Yeah, and I did their conference. That was a really, really amazing experience and the first time I'd actually in-person gotten together with other people with sleep apnea. So they no longer were just people in a Facebook group.
Emma Cooksey:
Right. But real people.
Karen:
Real people. So I think silver lining would be, I know what it's like to recover and I know that there are therapies that work for different people. I absolutely believe that CPAP is the first line for a lot of people and people should give it a shot and not be so afraid to at least try it, because it could solve this problem. Silver lining, I'm able, when somebody says there's something wrong and they were curious, they didn't know anything, they even know what sleep apnea was, I'm able to give them enough information for them to not be afraid to go get checked.
Emma Cooksey:
Yeah. Well, that's terrific and that's exactly why I wanted to do this podcast, is to help tell your story and hopefully, even if people are having a really tough time with using a CPAP, they can not give up hope and to know that there are alternative treatments out there.
Karen:
Yes. Yes, I definitely appreciate you giving me some time to talk about what works for me, but I, by no means, know everything. I just know this worked for me. It has worked for other people I know. There's something out there I think for almost everyone. Just like any other type of condition, not every therapy works for everyone.
Emma Cooksey:
Right. Definitely. Well, Karen, thank you so much for spending time talking with me. I really appreciate it.
Karen:
Thank you for having me.
Emma Cooksey:
So a big thank you to Karen for sharing her story so openly and honestly. I think she's going to help a lot of people who are having a really tough time with sleep apnea to keep trying different treatments until they find something that works for them. If you're enjoying the podcast, I'd love for you to subscribe, rate, and review it. But more importantly than that, I would love for you just to reach out to anyone you know with sleep apnea and share it with them. I think the more that we can build a community of people coping with sleep apnea, the more supported we'll all feel.