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Kali talks with Ann Bannon, who was intubated four times and awake on the endotracheal tube and ventilator for months. She gives us valuable insight into how to help the new flood of ventilated patients.

Episode Transcription

Kali Dayton

Ann, thank you so much for joining us. Appreciate you coming on our show and helping us with this. Can you tell us a little about you and your ICU journey?

Ann

Sure. Well, I ended up spending 76 nights in the hospital 34 of those were in ICU, I have a condition called it’s a chronic illness called Myasthenia Gravis. And what that means is that I can, why I ended up with severe muscle weakness. And part of “MG”, which is the short name for Myasthenia Gravis is you can have a, a what’s called a crisis where you go into respiratory failure. And in the fall of 2017, I ended up going into respiratory failure. And that’s how I landed in intensive care on a ventilator.

Kali Dayton

Wow, and what was that like for you?

Ann

Well, so I kind of knew, like, my neurologist had warned me that ending up on a ventilator was a possibility with within MG. And so when I was starting to get some severe weakness, luckily, I ended up I was in emergency when I went into respiratory failure. So I knew to expect that I will be going on a ventilator.

And I’ve always just kind of thought of being on a ventilator as, as some equipment that helps you breathe. I never really thought of it as “life support” until after I’d gotten out of the hospital. And, and a friend of the family, you know, sort of gave their feeling on how, you know how they would react if they ever had to go on a ventilator.

But for me, I just, you know, I knew that it was part of this chronic illness and that if I went into respiratory failure, because I was, you know, my muscles got so weak that I couldn’t breathe on my own. That, you know, I guess I knew it was a possibility. And, you know, when I woke up in ICU, you know, I was restrained. I did have some medication to sedate me. But I certainly, you know, I was, you know, I did wake up. And it didn’t take very long for my nurse to, to take the restraints off, because I think he knew that I was at very low risk of pulling out the tube.

Kali Dayton

Is that because of your weakness, or because you were so awake and appropriate?

Ann

I think, you know, so I could move my arms, because I remember like waking up and of course, I was kind of looking around at first and trying to, you know, piece together what had happened. And I remember vividly being down in emerge and, and, you know, telling my husband that I needed help, but I kind of couldn’t breathe anymore, you know, a whole team coming in.

And, you know, I was, you know, knocked out put to put the tube in, and then basically woke up, you know, a few hours later. So it took but it took me like a few minutes just to kind of piece things together for that I was able I was able to even though I was restrained,  I could still move my hands around, like, you know, I you know, I realized, “oh, geez, like my underwear gone, like what’s happened here?”

You know, just kind of figuring it out. And then it was like, “Oh, wait, yeah, that’s right.  I went into respiratory failure…. and kind of just from there, it was like, “Oh, okay.” You know, but um, you know, it’s different to be on a ventilator. I can’t talk. Personally, I drooled a lot. What I’ve mentioned to a few people is that I really felt like a St. Bernard dog with all the drool. But I always thought of it as something to help me breathe if I needed that. And it’s, you know, I had my phone the whole time. I actually managed to send a text message to my boss at the time saying, “I’m in ICU.” I was you know, I was fairly with it. Even though I may have been well, I was you know, I did have some medication to kind of take the edge off.

Kali Dayton

Were you panicked? Did you try to pull your tube out?

Ann

No, no, I never. No, no, I never ever tried to pull the tube out and again, it was because I knew I was aware enough that I knew that I needed that, to help me breathe.

Kali Dayton

Yeah. And I see that a lot with my patients, I personally feel like it is safer to have people with clear minds and be awake and understand their situation. To protect the tube, I think we go to this other extreme, where we feel that people have to be completely knocked out not move a muscle in order to keep the tube in. But I see people react the same way you do, where at first they’re like, “Where am I? What is going on?” And then once they remember what they were told, you know, half an hour a few hours ago, then they’re pretty okay.

Was it too uncomfortable? Did it make you panic?

Ann

Um, well, so But So initially, you know, I was on the fentanyl, you know, a very low amount of fentanyl. And so I was just very, you know, I felt very aware. And it was like I was feeling, you know, very cozy like I was wrapped up in a big blanket with a nice cup of hot chocolate.

Kali Dayton

Uh huh.

Ann

And so I didn’t feel any discomfort at that point from the tube. Now, and my journey for the hospital was a little bit different. Because I started in ICU, I went to a step down unit, I ended up on a neurology Ward because MG is a neurological disease. And then I ended up having trouble clearing  my secretions, so my cough wasn’t strong enough. I landed back up in ICU a second time and that, and that’s part of the 34 Nights. So I think it was something like 13 Nights, at first, a couple of other spots, and then back to ICU for another 21 days

Kali Dayton

on the ventilator, again?

Ann

On and off the ventilator. I was actually ventilated four times, we kind of overdid it one night with the cough assist because we’re really just trying to get get my lungs cleared.  And actually, so the fourth, this is probably fairly unusual. But and by the fourth, like by that fourth time, I wasn’t on any fentanyl anymore, I was managing the discomfort with Tylenol.

In the fourth time, I was actually awake when we put the tube in. So we just did. And I was at I was like, “okay, like, we got to, you know, I gotta go back on the vent again,” basically. And so we just did local freezing for the fourth time. So I was wide awake. And we just, you know, that little spray freezing that you guys use. So we did that. And I got I went on the ventilator the fourth time and I was wide awake for it.

Kali Dayton

And you were okay with that?

Ann

Yeah, yeah, I was absolutely fine with it. It was just a matter of staying calm, like trying to, you know, staying calm, like I knew, like, I knew I needed to do that. And then after that, like me, I made the decision to get to be trach’d. And, you know, we had really held off on me doing that procedure, or just because more of the scar tissue.

And I have to say like the respiratory therapists that had been, you know, helping me out on this journey. They were really terrific about providing some information about y what it was gonna be like to be trach’d and that kind of thing. So anyway, I decided that I want to do the trach because at that point, for going on and off the vent, like it just felt like a step back. And I just wanted to be able to move forward and build my strength up. Because again, for me, this was a muscle weakness issue.

And so anyway, I did the trach. And I wanted to mention that, you know, being trach’d is actually a little bit more comfortable than being on the tube because you don’t have all that gear up around your face. Everything’s down around your neck.

Kali Dayton

Yeah, every time you woke up, and you were intubated, or while you were being intubated. What was that? Like? Was it just, “okay here I am again…”, and you knew you had a clear mind? The whole hospitalization?

Ann

Yeah, yeah, I would say I had a clear mind the whole hospitalization. For example, and I had my phone with me the whole time. Even even right from the first day that I was hospitalized. So I have a teenage daughter, I didn’t want her to see me on the ventilator because I just thought that would be a bit too traumatic. But I managed to text her anywhere from one to three times a day.

So I like I even had a sense of the time of day. You know, so would send her a message just to say, “good morning,” I had a sense of when she was, you know, coming home, off the bus at the end of the day. And I and I managed, you know, most days to send her a quick text, just, “good night”. And you know, that was like, with very bad vision.

Because, again, with with myasthenia gravis you can end up with really bad double vision. And my eyelids were dropped. So I had ptosis of both my eyes were pretty droopy, but I still managed to hold that phone up to one eye and get some texting out, so that I could keep in contact with my daughter. And again, it was more, you know, because she was younger, and I didn’t want her at that point to seem out of them. But I wanted to keep in contact with her so that she knew I was okay. And that I wanted to know, you know, how her day was going?

Kali Dayton

And what did that mean, to her And to you to have that contact?

Ann

Whoa, well, you know, well, for her, um, I’m sure it was probably pretty important. You know, to know that, that she was actually hearing from me, I mean, it was still a bit overwhelming with the fact that I was, you know, all of a sudden in the hospital, and she was just starting high school. So she had moved to a brand new high school, or a brand new school starting high school. So that was a bit of a wild bit of a, you know, wild ride, I guess, for her.

But for me to be able to send her a message and to text? oh, that it really meant the world to me. And actually, there was one day I had a nurse at my feet. And I had another person and I was doing plasma plasmapheresis I’m pretty sure that’s the right name.

So we were doing plasmapheresis and I was in the middle of, you know, sending sending my daughter a text. And the nurse was asking me a question that wasn’t kind of answering quick enough, because for me, I was just so you know, desperate and anxious and wanting to make sure that I was in contact with my daughter that was like my number one priority. That we had, you know, let’s just say that me perhaps a nurse wasn’t wasn’t very happy that I was, you know, focused on texting.

And, you know, kind of referred to me as being a teenager. But at that point, I was just so desperate to stay in contact with her. I mean, it was, you know, I was just kind of trapped in my own body. And I was, you know, I was on a feeding tube, I was on a ventilator. I was pretty much on every piece of equipment that you could hook somebody up to I was, you know, in the middle of doing plasmapheresis, but I was still able to message with her. And for me, that was just so important.

Kali Dayton

Wow. And you spent so long in the hospital. And if you had been sedated, most of that time, you would have been so confused, and you wouldn’t have been able to even interact with people at the bedside. So knowing that you could have had such a different experience and course, in your hospitalization. What does it mean to you to know that you’re cared for by a team that started doing light sedation and then took it off? And you had a clear brain? What does that retrospectively mean to you?

Ann

Oh, I think it’s just absolutely amazing. So for the at the the, the spot where I was at there is very much a culture of, of early mobility in the ICU. And, you know, I didn’t realize actually until I listened to… I think it’s the second podcast because I listened, I managed to listen to the first three of your podcasts. And I can’t remember the physicians name. I think his first name is Terry Clemmer.

He was describing, you know, how, how, sedated that some people are one when they’re on a ventilator. And I was really surprised by that, because that really was not my experience. So I didn’t experience any delirium. I left the hospital. So I would have I would have arrived. On September 14, I was discharged on November 29. And I actually made it back to work on a gradual return to work the next summer and I had a few folks that had worked in that were working in the hospital that didn’t think I’d make it back to work for a couple of years.

But, you know, about six months later, I was, you know, I went started back to work and it was on a gradual return to work and it was hard, but I made it back to work full time. And I really credit you know, and I still have to, you know, manage myself because it’s a chronic illness. But I’m amazed that that I made it back to work full time and I really, I really credit the lighter sedation, the the commitment to mobility, for me being able to, you know, continue with, you know, an active life and you know, being able to, you know, make contributions.

Kali Dayton

I love hearing that and and that is so powerful from someone that really needed ventilation for so long, but you had your brain preserved. And so in this time of talk about ventilators, we’re going to have a flood of people on ventilators and the COVID-19 is a different process and infection. Correct? What would you tell our medical I especially ICU community, about being on the ventilator? And what would you advise us to do and not do?

Ann

Well, so if, and I mean, every, you know, every person is different, and I think it’s really important for there to be, you know, patient centered care. But, you know, starting out,  in terms of medications, maybe start lower and then work up if you need to, as opposed to really knocking somebody out, and then and then maybe lowering. So I think, the less medication the better.

And, you know, my understanding is that a lot of people are going to be in ICU by themselves., If they can have if the person can have some way, if the person can have a cell phone and a charger so that they can communicate with their loved ones. I mean, that really means a lot. The other really great thing that I found helpful in terms of, you know, me being awake, is, you know, I listened to a lot of music. And, and I also did practice, a meditation I use, there’s an app called calm, that, that I spent a lot of time listening to that.

And, and, you know, just trying to, you know, stay calm and be with it. And, and, you know, just do what I needed to do to recover well enough to be able to go finish my recovery at home.

Kali Dayton

Oh, I love it.

Ann

Yeah, and the and the other thing I want to mention, too, so you know, and again, this comes down to you know, everybody’s different, but, you know, I have my vision, I have, you know, 10 fingers, 10 toes, and you know, and I have my hearing. So, you know, those are things I don’t want to assume not like not everybody has that. But one of the things I would suggest to and this is like a small thing, that if someone is awake, and they are well enough to be on their phone, or iPad or something to communicate with loved ones, you know, and if they have to have a SATs monitor, so that little thing that you people normally put on their finger. And that can go on a big toe to free up people’s two hands. That’s really helpful.

Kali Dayton

Oh, I love it. No, totally true.

Ann

That’s, one of those small things. But I just remember like, it sort of coming up in conversation, I was like, you know, I would write notes or, you know, I’m trying to get the monitor down on my on my big toe myself, just because I really wanted to keep my hands free so that I could, you know, message with with people.

Kali Dayton

The SAT probe is really essential for safety and monitoring. But we need to see that being able to text and have your hands free, having something free while you’re stuck in a bed is just as important to the patient. So thank you for that perspective. Your insight is so powerful, and I hope that we can provide the same kind of care that you received to these COVID patients so they can have similar not even better outcomes.

 

Transcribed by https://otter.ai

 

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