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Now that we know what happens to patients after sedation and immobility, do we know what it is really like? Do we understand what happens to patient dignity, autonomy, and identity when they lose control of their bodies? Eileen Rubin shares with us what it was like as a 33-year-old trial attorney to wake up and not be able to lift a finger.

Episode Transcription

Kali Dayton 0:00
Hello, before we get started with our episode, I wanted to thank everyone for all of your support. I’ve had a lot of questions come in that I will be addressing in future episodes. We’ve also had a number of requests made to have more open communication. And I think that is a great idea. So join our new Facebook group titled walking home from the ICU discussion group. It’ll be for critical care providers, and we are so excited to have an open forum to further discuss these topics.

For episode today, I wanted to bring it back to our why. In the last few episodes, we heard from Dr. Harris and nurse McKenzie, what happens to patients like COVID-19, or any other mechanically ventilated patient that is deeply sedated and immobilized for weeks. They spoke of patients that were not waking up long after distillation was stopped. And the most physical capacity they saw among dozens to hundreds of patients was the slight lift of an arm.

Perhaps this is shocking to many of us in the medical community. Yet, maybe this is unfortunate normal for some of us. And we already know very well what that looks like. Yet. Let’s bring it back to our why. And make sure we have a more sincere look at what this is really like for a survivor. This episode, we’re honored to have Eileen ruin president of the ARDS foundation with us to share her perspective of her ARDS journey and recovery. Eileen, thanks for joining us. Can you tell us a summary of your hospitalization?

Eileen Rubin 2:11
Sure, my name is Eileen Rubin and I was hospitalized in 1995. In the summer, I was sick for about two weeks, and went to three doctors during that time. But they kept sending me home until finally one doctor took a blood test and discovered that my white count was three and a half times higher than normal. And the next morning sent me to the emergency room immediately.

When I got to the emergency room, I was I presented in septic shock and and a few other things were going on. And I was admitted directly into the ICU from the ICU. The next day I had kidney failure. So I got in on a Friday, Saturday, I had kidney failure. But then my kidneys started functioning. And then Sunday morning, I went into respiratory arrest. The last words I said to my mom, before I was intubated were: “I can’t breathe, I think I’m dying.” When the doctor finally came into my room, and saw how terrible I was, he got my parents and family out of the room. And for two hours, they didn’t know what was going on. And I ended up when when they came back in the room. I was on a ventilator and hooked up to other machines, and they had no idea what was going on. A couple days later, I was diagnosed with acute respiratory distress syndrome, which many people call ARDS or ARDS.

I spent the next approximately four weeks in a medically induced coma, during which time my lungs blew out and I ended up with chest tubes. I had indications that my spleen had died away by 90%. They almost removed my spleen I had fluid overload. I had the need for four units of blood and many other things that went wrong during that time. And eventually, after four weeks, they were able to take me out of the medically induced coma but I was still on the ventilator still 100% with the high level peep. I ended up spending a total of eight weeks on the ventilator in the hospital and nine weeks total in the hospital. So it was four weeks in the medically induced coma, eight weeks on the ventilator and nine weeks in the hospital.

Kali Dayton 5:00
How old were you at the time?

Eileen Rubin 5:02
I was 33 years old. And I was not otherwise I had no other medical conditions that would have precipitated this or caused this. So I was otherwise healthy.

Kali Dayton 5:14
That is so sobering because I’m 30 years old. And I just can imagine, really the thing about working in the ICU, you just see that it could be anyone at any time.

Eileen Rubin 5:25
Exactly. So sudden, I just had this lower back pain. And I had, it was excruciating, lower back pain, but I kept going to the doctor, and the lower back pain kept going on, and eventually moved into my lungs. And even though I complained about pain in my lungs, and having difficulty breathing, the doctors kept saying, there’s nothing wrong with you, you’re fine. And finally, when they took some tests, they took a chest X ray and blood test, they finally discovered that there was something very wrong with me.

Kali Dayton 5:57
And everything happened so fast. And four weeks later, you wake up after having been in a medically induced coma. And it sounds like your experience of the coma was different than what we’ve heard from a lot of people can tell us a little bit about what your mental status was like, during that time?

Eileen Rubin 6:14
So during my medically induced coma, I was very, very sedated. I had initially when they put me in a medically induced coma, I was still continued to be very agitated, and I would pulling out different lines and things like that. And they wanted me to be able to relax to let the machines do their job, to let the medications work. And for me not to pull anything out. So they sedated me heavily with both fentanyl and morphine and, and other medications. So I was really completely out for about four weeks.

But I know I was aware of my surroundings. I was aware of family members being present. I was aware of the doctors and nurses coming and going because I knew after I came out of my medically induced coma, I had this sort of recall. And I knew every time the doctors came in, and they said, Hi, I’m Dr. so and so and this is my specialty. I already knew that information. So it was information I already had. I already knew their specialty. But most most importantly, I already knew which doctors I liked in which doctors I did it. And the only reason I would know that is if I had this impression of them. What but when I was in the medically induced coma to the time I came out of the coma.

Kali Dayton 7:44
Yeah, that’s, that’s amazing. And how you didn’t have any hallucinations. You just were aware of what was going on. And yet, you weren’t completely informed, right? You didn’t totally know what was going on consciously. But subconsciously….

Eileen Rubin 8:01
I knew what was going on. And they had been talking about me, and things like that. And it’s never like when I came out of my medically induced coma. I never thought for one moment, “Am I paralyzed?” Even though I couldn’t move even a finger. I have never thought for a second that….. I mean, I knew that I had been sick. And I knew that I was so weak, because I had been in bed for so long. And I had been sick and not moved.

But so there was so there was this intake of information, this constant processing of information coming in, when family members were there when doctors and nurses were there, whoever was in my room, and they were talking about me. I knew what was coming in. I knew exactly. I didn’t really understand what ARDS was. But I knew that I was there because I was sick. So I never thought oh, “Was I in an accident?” Or, “How did this happen? In this way that I can’t move?” I somehow knew innately that this was because I had been bedridden for four weeks.

Kali Dayton 9:14
And how do you feel like that understanding helped you cope with what you were going through?

Eileen Rubin 9:19
Well, understanding that, at that time, it…. understanding always makes things easier. But at that time, it wasn’t and nothing was easy at that time because I was so so so critically ill I was on 100% Oxygen, my PEEP level was high. And I still had so much going on that was wrong with me. I was still so critically ill that that it wasn’t really a comfort to me.

But overall in general during my hospitalization, as things happen later, having knowledge about certain things ahead of time, did become comfort, and the unknown was always terrifying. So whenever I was faced with something that even if it was explained to me, it couldn’t be explained to me properly, that I would be able to comprehend it. If I wasn’t able to comprehend it, then it would put me into an anxiety attack, a panic attack, just a level of anxiousness that was above and beyond what I’ve ever experienced before in my life.

Kali Dayton 10:26
In my own way, I can relate to that, because I am the kind that tell them how it is, tell me it straight. I’d rather cope with reality than the unknown. So it seems like an advantage of being aware is that you didn’t have delirium during the coma. But then what happened to your mental status later on in your hospitalization?

Eileen Rubin 10:46
Well, the one thing that was key is when I came out of my medically induced coma. So even though I understood certain things, I didn’t have the ability to communicate. So I was already, you know, at a level where I wasn’t able to be able to understand things that a speaking patient what I couldn’t talk, because I had a trach.

I was on the ventilator. I couldn’t write because I was so seriously decondition I couldn’t move at all. In fact, I couldn’t walk. I couldn’t communicate at all. So I couldn’t write, I couldn’t do anything. So there was no way for me to communicate. But inside my mind was still thinking and asking questions, and saying things, but I had no response, I would try to mock things. So people could lip read. But that works in with various success or lack of success. Because a lot of people can’t lip read so well.

And sometimes when you’re sick, it’s harder to sort of enunciate the words you’re trying to pronounce. So anyway, at that point, I was in the ICU, and late at night, they decided that they were going to move me. And all they kept telling me was their explanation of moving me they were gonna move me it was late at night, it was like 10pm, there were three members of my family were left in the hospital. And they just kept saying to me, “This is a good thing. This means you’re getting better. This is a good thing. This means you’re getting better.”

And I kept thinking in my head, “How can I be getting better? I know, I’m still as sick as I was, you know, an hour ago, yesterday, the day before? What does this mean?” You know, “Why would they be doing this to me? Why would they be doing this late at night? Is there some reason that they’re skirting me off to another room late at night?”

I didn’t understand that this was because there was a single room available on the vent floor and they wanted me to have a single room. So this was not explained to me. But they were suddenly moving me late at night, under darkness is what it’s like, to me without a good explanation. And then I was in a place the ICU was a place of comfort to me at that point.

It was already a place where I was familiar with the nursing staff, I was familiar with the other staff, I was familiar with the doctors there. And now suddenly, I’m getting moved to a different floor. I don’t know who these nurses are going to be I don’t know who’s what’s going on. And my family was with me for the transfer to the 11th floor. So I went from the seventh floor to the 11th floor and I get transferred. And I’m there and there’s no nurse. And then it’s like shift change time. And there’s another new nurse, and then they’re telling my family, you have to leave, visiting hours are over. And I suddenly freaked out. I got totally panicked. I couldn’t believe that my only source of stability, and the only thing that was keeping me calm, which was my family, they were now making my family me leave. And suddenly I went into a frenzy. I went into a panic.

Kali Dayton 14:16
And you weren’t able to tell them your concerns. You weren’t able to have your own voice. make requests, express your concerns because you couldn’t communicate.

Eileen Rubin 14:25
Right. At that point, there was no way for me to communicate there was no one who was able to understand me, my family had to leave and they left and at the same time. I didn’t realize this until later. But at the same time when I had woken up from my when I had come out of my medically induced coma. They had taken me off of my sedating medications. So they had taken me out of all those medications, the non morphine and I was literally on a nothing to sedate.

Kali Dayton 15:00
So off of the narcotics- cold turkey after high, high doses of narcotics for a month. And suddenly you were just off?

Eileen Rubin 15:08
Right. And they had me on really high doses of medication. They had mentioned to me that normally we give this amount of medication to like a 400 pound man. And at that time, I was about 82 pounds. And they cut me off of the medications, cold turkey, and they moved me to another room….. and suddenly this threw me into a hospital psychosis, delirium, a narcotic withdrawal.

Kali Dayton 15:35
What was that like for you?

Eileen Rubin 15:37
It was horrifying. I just know, I was like, my hands were shaking in front of me. And my mouth was just hanging open. And everybody thought that I had suffered brain damage. They and I just remember being awake endlessly, and feeling just horrible. And people are coming and going. And I just remember, during that time, is when I had these sort of, I call them, you know, sort of, they weren’t really nightmares, but they were sort of, like delusional thoughts at that time. And I was mixing reality with fantasy. And I wasn’t putting things together.

Well, my brain wasn’t operating at the level it had been operating it. So now I couldn’t communicate. And I was having delirium. I was suffering delirium. So finally, they called for a neurology consult. And after I was examined by the neurologist, I did do something at that time, I was angry that they were caught. So I do remember this. This is like my most lucid thoughts at that time. And I was angry at that time, because I had no control over my care. And I had been in the hospital for so long.

And here I am, this 33 year old woman who’s used to doing everything for herself, and capable of doing everything. And suddenly, I was dependent on everybody and everything, I had no control. And I decided I was going to take control of my medical care. And I decided not to cooperate with the neurologist. So at that time, the neurologist had come in. And he was trying to ask me questions and get answers from me and going through the process of examining me.

And he asked at one point, to my nurse, “Does she cooperate with you?” and my nurse said “Sometimes”, and so and I remember, like sort of chuckling inside of my head. And finally, he raised my arm, my right arm over my head, and he let it drop. And I protected my face. So my arm dropped to the right side of me. And then he did the same thing with my left arm. And I did the same thing. And then he, I remember him turning to my family and saying, I know what’s wrong with her. But we have to do a lot of tests, we have to do a spinal tap, we have to do this and that and rule out all these other things. And so we have to do four tests today.

And after rule everything out, then I think it’s just a matter of, you know, she’s going through the narcotic withdrawal, she had the transfer of the room, and I we reintroduce her morphine. And I think that things will be fine. Not fine, but better. And so that’s what they did. They went through all these tests throughout the whole day. And then finally, at 11 o’clock that night, they reintroduced the morphine. And I remember going through my body warming my body, like, like, such comfort, and such a change. And the next day, all my doctors, whether they were still on my case or not, came into my room one at a time. And they they all came in, and they said, they announced their names, Dr. so and so and I, you know, this is my specialty. And then they said, Everybody said the same thing. She’s back, she’s back, she’s back.

Kali Dayton 19:12
And that’s, that is so much what delirium is like, it’s like, the lights go off, and then the lights kind of come back on. But what a terrible mix of factors for you. It’s like you were spared the delirium during actual sedation. And that’s, that’s a good example to show that delirium can be induced by so many different factors in the environment, removal of your family, withdraw, and so miserable, especially since you were pretty aware of what was going on and unable to control any of those factors.

Eileen Rubin 19:45
Right. That’s the worst part is because I was aware of things, but I had no ability control, no ability to change any of the factors to change anything, to do anything, even to voice a concern. or, or an opinion, I couldn’t voice anything because I still was unable to move and unable to talk.

Kali Dayton 20:08
And like you said, you were 33 year old, very accomplished, independent woman. So when you came out of the coma, you were so deconditioned. And I don’t think we appreciate, at least for the ICU side, what happens to the rest of the body when it doesn’t move for four weeks, and you were strong, healthy, 33 year old, granted, you had a lot of infectious processes and things going on. But what happened to your overall strength and capacity of your body? After this four weeks when you woke up?

Eileen Rubin 20:43
The first thing to remember the first I remember that I when I came out of the medically induced coma, I just knew I couldn’t move. And and it was just kind of like a fact, I couldn’t move. But I remember realizing it, especially it was like really enunciated when one of the doctors came in, one of the pulmonologist came in.

And for some reason, no one from my family was there at that time, and he announced, “You’re watching too much TV, I’m gonna turn on the music channel.” And he takes the controls, and he changes the channel to the music channel, which is like elevator music. And it was driving me crazy. And so in my head, I’m like, “Oh, my God, oh, my God, how do I change this? How do I change this, I need to change the channel. What am I going to do?”

And I kept, I kept looking at my hand. And I was willing my finger like my right finger to move, and willing my arm to move so that I could reach the call button and call the nurse. And I was doing this until I literally got so exhausted, I kind of passed out. And when I came to my family was in the room, and the TV channel was back on the music channel was off. And I felt relief. I felt like the the level of anxiety that I had suffered just from him changing the channel, which seems like such a little thing.

But when you’re a critically ill patient, that’s all you have. Yeah, you have like one thing, you have the TV, and someone’s gonna go and change that on you not not even asked me and wait to see if I blinked or nodded. If that was okay, but just assert, I’m watching too much TV. So boom, I’m gonna change this to music. And you’re gonna like it because I know what’s better. And it was, it was just the most frustrating thing for me at that time.

Kali Dayton 22:50
So it was like your autonomy was removed with your strength. Right. And that would be really frustrating for a 33 year old attorney. And then you’ve mentioned that you were 82 pounds.

Eileen Rubin 23:03
My lowest weight during my hospitalization was 82 pounds. Um, and I went into the hospital at about 104 pounds.

Kali Dayton 23:13
And so that was you didn’t have any fat to lose, that was all muscle that you lost. So what was moving or mobility, like starting from there?

Eileen Rubin 23:23
So it was really difficult. They did not assign physical and occupational therapy to me until they thought that I might survive. Because initially, when I was in the hospital, at two weeks, they had a family meeting. And at the family meeting, they had stated that we’ve done everything that we could, she is not going to ever be able to breathe on her own, she’ll never get off the ventilator, she will not have any kind of quality of life, you need to start thinking about pulling the plug.

And my family was like, “Absolutely not. Keep doing keep doing whatever it is that you can do to try and save her.” So after the four weeks in the ICU, that’s when they brought on occupational and physical therapy. And initially, that’s when I started to to have some movement just by force. So it wasn’t even me moving any limb or anything. It was being moved by force. So initially, when I was I wasn’t sitting up. I was raising the top part of the bed. And then when I had to sit up I had that had to be done by somebody literally pulling me to the point of setting up and when..

Kali Dayton 24:54
Could you hold your own head up?

Eileen Rubin 24:56
Not initially. So I wasn’t able To do that I couldn’t, even laying in the bed, if I slid down, like further into the bed, and I needed to be up higher, I had to have at least two nurses Pull me up, well, they had to pull me up higher in the bed. And when I was initially moved from the bed to the chair, it would take four to six nurses to move me even at somewhere in, you know, 80 something pounds to move me from the bed to the chair. And even in the chair, I was only sitting up because the chair was upright. My head wasn’t up on its own. I wasn’t sitting forward on my own, I wasn’t able to manage that.

Kali Dayton 25:52
So you were an 82 pound newborn, essentially.

Eileen Rubin 25:56
Right.

Kali Dayton 25:58
And what was that like for you psychologically?

Eileen Rubin 26:01
It’s very… it’s a new low point, in terms of understanding that you’re, you’re totally dependent on everybody around you. So you know it from the fact that there’s diversity in your room. And the fact that people are moving you around and changing you and doing things to you, and you’re kind of like, a wet noodle, you know, you can just be like you’re being flipped and flopped. And, and you’re not, you’re not doing anything on your own. You can’t even you know, raise your arms.

So you’re literally just laying there, and people are doing things for you. They’re, so you’re completely dependent on everyone around you. But eventually, as you work through with the therapists, you start to get to the point where you’re slowly able to set up so setting up was the first thing that I accomplished. And it like I said, initially, someone had to literally pull me up. But in the sitting up position, just sitting up, something happened with my blood pressure, or a change in the way my body reacted. And I completely, it threw me into a panic attack.

So I’d be sitting up, and now I’m sitting up, but I’m shaking, and I’m sweating, and I’m crying. And I need like it takes me a half hour to an hour to calm down. Because something happened, that just changed everything. And so then they still had to get me from the bed to the chair. After all that. And still somebody is like literally carrying you from the bed to the chair until you work on it more and more and you do more things. And you get more you do more exercises. And you’re able to finally take the two steps that it is to get from the bed to the chair.

Kali Dayton 28:23
That sounds so frustrating and so tedious. And so at what point were you able to start walking?

Eileen Rubin 28:34
so I don’t think I was able to start walking until I was it was in my seventh week of my hospitalization. And so I was finally at the point where I could sit myself up, I could with assistance step to actually put weight on my foot and step from the bed to the chair and the chair back to the bed with assistance. And then finally, in that seventh week, the physical therapist, you know, first they got me standing up and then moving like two steps.

And then the first time I walked, I walked from the chair to the end of the room, and then took a break, and then walked back from the end of the room to the chair. And that was my therapy for that day. And the following day, the physical therapist announced to me, she said, “You know, today we’re gonna walk outside, and I have a chair set up outside. So we’ll walk and we’ll be I’ll be holding on to you and the respiratory therapists will be there. She’ll be bagging you. And we’ll be walking together as they had a belt on me.”

And so that was the first time I actually walked out of my room. I walked from the chair out of my room and into the hallway I walked past one other room And then right by the nurse’s station was the chair. And I remember seeing the chair like, oh my god, I’m going to be able to sit down. And what a relief that is. And as I sat down, all the nurses that were at the nurse’s station, they got up and they all gave me a standing ovation, because they’ve seen like, their newborn baby walk for the first time.

Kali Dayton 30:25
Yeah, and that’s, that’s pretty literal. I mean, that’s probably even, at least as equally or even more exciting to see someone that had been through so much as you had to be able to walk again.

Eileen Rubin 30:39
Right? I mean, it was so heartwarming to see that, and to know that they were all like cheering for me and rooting for me. And it was just amazing. And then I realized, “Oh, my God, you know, like, this is my team, and they’re really helping me.”

You know, even for all the frustration that I went through, even the times, you know, I wasn’t able to communicate, or I think there was a time, I had a doctor come in, and he was giving me an update on how I was doing. And I went and started writing down on my pad of paper, a question because I had a follow up question. And all of a sudden, I look up, and he’s walking his back is to me, he’s walking out the door.

And I like flipped out. And of course, I couldn’t talk. I couldn’t say anything. I took the pad of paper, and I went and threw it at him. But my throat was so weak that they kind of plopped and went to the floor. And the doctor just kept going. And so I always tell people never turn your back on event patient. Because we can’t communicate. We can’t say, “Hey, I have a question. Wait a minute.”

Kali Dayton 31:52
Yeah, I would never have that perspective. If it wasn’t for someone telling me what it’s like on the other side? And what difference would it have made to you during that whole experience to have had a more efficient mode of communication?

Eileen Rubin 32:08
Oh, well, yeah, that would have made a total difference to me, especially, especially in those early days, I think I was pretty fortunate. Because I think, as far as being a vent patient, and being as sick as I was, that I was pretty high functioning as a vent patient.

And a lot of vent patients never even communicate at all in any manner whatsoever with anyone while they’re on the ventilator. But during that time, when I was just getting off the ventilator, the level of frustration was so high. And the fact that I couldn’t communicate, I didn’t have any means to point out, you know, yes, no, you know, pain, discomfort, nurse, anything, I couldn’t even like nod at something.

So I couldn’t even nobody could like, say to me, you know, from having some kind of communication board or anything, nobody can say to me, you know, is this what you mean and point at something so that I could sort of nod or blink, that’s what I meant. It was just me having to think in my head and get more and more frustrated, at the thought of not being able to communicate.

And it’s it’s, it’s like you feel this total loss of dignity, and, and you feel kind of disrespected. Things are happening to you, you’re not in control of anything. And when you feel this loss of dignity, and you feel this disrespect, you’re not motivated as a patient to get better. You’re not going to Fight your hardest, you feel like you’ve lost this battle. And what’s Why is it worth fighting so hard to get better when nothing is in your control, and you can’t see the mountain for the trees, you know, you can’t see, you know, the hill is too high to climb.

And you can’t figure out how to get the other side to be triumphant. And this is such a frustrating process. Because once you have success, and you’re able to do things, you know, success begets more success. And you feel triumph, and you feel more of an ability to try harder and succeed more and be more triumphant. But when you don’t have that success when you feel like you’re failing. When you feel like nothing. Nothing’s going your way that you have. You’re not in control of anything you tend to give up.

Kali Dayton 34:47
That is so powerful, and I know that no one wants their patients to feel that way. But I think when we’re so used to working with patients that are comatose, and we can’t hear their voice We forget that they deserve to have a voice. And you get such powerful insight into what that would actually mean for the overall outcomes and success of patients to actually feel like a human and actually have reason to work towards becoming one again.

Eileen Rubin 35:15
Right? So it’s even, it’s even helpful in the sense that even if your patient is in a medically induced coma, and they seem like they can’t hear you, and they don’t know what’s going on, if you still talk to them, and you talk to them as if they can hear you and if they understood as if they understand everything, because we’re still taking things in. So if people would have talked to me the whole time, and I was lucky, because I was taking things in. So I realized to a certain extent, what was going on with me, but not fully.

But if people would say to me, when some when a doctor was gonna come up to me and examined me and said, “This is my name. I’m Dr. Jones. And I’m a pulmonologist. And I’m here, I’m just here to listen to your lungs. And is it okay? If I touch you with my stethoscope?”

And of course, I’m not going to respond, but then pause for a moment, and then listen to my lungs. And then it’s like, I know, and I’m not going to be tense and anxious. When that happens, I’m not going to tense up, I’m not going to be fighting him, I’ll be more cooperative, because I know what’s the next thing that’s going to happen? All he’s going to do is listen to my lungs. That’s it, I don’t have to worry about being jabbed with something or poked or prodded.

I know it’s just this. And even if it’s something more detailed, or something that’s more invasive, at least I know what it is, and I have an idea of what’s gonna happen. So I can prepare myself. And even if I’m in a medically induced coma, I’m still taking things in. So you still need to talk to that patient, and be able to convey what it is that you’re doing, why you’re doing it, how you’re going to do it, and who you are.

Kali Dayton 37:08
Yeah, and you’re such a good example of even in medically induced coma so that people can still process things. Normally, I mean, you, you weren’t delirious until you went into the withdrawal and have the change in environment. And I think that’s such a advantage for your long term outcomes, because a lot of ARDS patients you know, better than I do, don’t return back to work throughout their lives. But your span of delirium was so much shorter than most, especially for the course of illness. You did get back to life. How long did that take, though, to be able to be, I guess, function again or back to your career or to really feel like you were alive again?

Eileen Rubin 37:47
So, I was in the hospital for a total of nine weeks, I got off the ventilator. After eight weeks, I spent the last week getting my chest, last three chest tubes removed, getting off of IVs. And having my feeding tube removed and those kind of things and, and doing rehab, you know, doing the PT and the OT, but I went directly home from the hospital to do outpatient physical therapy.

I couldn’t drive a car, I was completely dependent at home, I basically spent my time going to physical therapy and going to doctor appointments for follow up. And then eventually, kind of going out to lunch or, or whatever. But I still couldn’t drive I was still really kind of a captive at home. And it’s really depressing, and it’s hard to do. And you’re just all you’re doing every day is to do just a little bit more.

I mean, when you first get home, when I first got home, I needed someone to stand outside the bathroom to make sure I didn’t fall. For a whole week, I had to have a step stool in the shower, I couldn’t even shower on my own. I couldn’t wash my hair by myself because I couldn’t raise my arms, even up to my shoulders. I needed help getting dressed, I had to have all my meals prepared and brought to me.

I could feed myself but I had to have everything brought to me. I had to have water ice water with me all the time because my throat hurts so much. Now, when I would try to sleep, I would fall asleep and I would fall asleep early. But then I would be asleep for maybe an hour or two and then I would wake up and I’d have what I like to call day mirrors.

Because what it was is I be awake. I wasn’t having nightmares. I was fully awake, but I would just relive the whole hospitalization over and over again. And that would knock me from falling back asleep. So this is what I was dealing with. But eventually after about four months, at some point, I was able to drive again, that gave me a level of freedom and independence.

And then after I could drive, I knew I wouldn’t be able to work, I was a trial attorney, I knew I wouldn’t be able to go back into court again, yet. So I knew physically and mentally, that I wouldn’t be able to handle it. So I would my mom’s employer, let me work at her business, doing some like filing and like computer work and things like that, which was really, really important for me, because it got me back into a routine of getting up in the morning, getting dressed and ready for work, having responsibilities a place to go, even though it was a part time thing, and it was shorter hours in a day. And hat gave me responsibility. And it gave me an objective. And it brought in a little bit of money, because at that point, during that whole time, from the time I got sick, till I went back to work, I was making no money. So it brought in a little bit of money. And it got me prepared for just going back to work part time as a trial attorney.

Kali Dayton 41:17
And that is amazing that you were able to go back and how long after discharge, were we able to go back to being a trial attorney?

Eileen Rubin 41:24
I went back after eight months. And I know that a lot of people who have acute respiratory distress syndrome, about a third of them do not go back to work at all, though of the ones who worked before about a third don’t go back to work. And about a third of those go back to a job that is lesser or for a lesser amount of time per week. So I was going back to work. I had been working full time. So I was working part time then. And I was still focused on trying to get better because I was by no means physically 100%.

Kali Dayton 42:06
How long did it take to feel 100%? Or have you yet felt that way?

Eileen Rubin 42:11
I’d say that I probably never got back to 100%. But I feel like your life changes. When you have something that’s you know, when you’re so critically ill in the ICU, or you have something like ARDS, your your life changes, but in a lot of ways, it can be a better outcome in different perspective. So even though physically, I can’t maybe do everything that I was doing, before I was sick, I have a better balance of life. So for my life was really focused, like more than 80% on work. And then maybe 20% on family. And afterwards, I had kids, and I had family, I had charity, I had things I did for fun. And then I had work. So I had a much better balance of life after suffering from ARDS.

Kali Dayton 43:11
So interesting. I’ve heard that from other people, too, that the like life is always different afterward. But sometimes it can have even more value than before. You mentioned your charity. What do you do the ARDS Foundation? And how can people in the ICU community get involved?

Eileen Rubin 43:27
So I co founded the ARDS Foundation in December of 2000. And I have been the President’s and since its inception. And initially when we started the foundation, our goals were really just to write a plain English brochure that explained in a very simple manner, what acute respiratory distress syndrome was.

So just explain what it was, what happens to people when they get it, and how people can help. And it was very basic brochure. And that was really the whole goal of the foundation will at that point. And then we put up a website by like March of 2001. And once we put up the website, which we initially started, it only had like five pages on it. Very little, very little limited information. And all of a sudden, our contact forms were coming back. And immediately we were getting contacts from all over the United States and all over the world.

And we realized how desperate people were for information about ARDS. So from that point, it’s grown exponentially. We offer support, information education, we do a lot with awareness about ARDS because many people have never heard of it before. We facilitate medical research, we engage in medical research, we fortify the patient engagement experience and advocacy. And we have things on our website that promote awareness from actual survivors of ARDS and people who lost their battle with ARDS. We also have an arch registry of Survivor registry. And we have a US COVID registry.

Kali Dayton 45:29
That is so neat. And so much has changed during the last 20 some odd years. And I think a lot of it is because of your organization, others light that had brought so much awareness and kind of held the medical community accountable for patient outcomes and the short and long term.

Eileen Rubin 45:45
Yeah, we I mean, I do a ton of work with, with the medical professionals, I’m on a lot of committees where I offer the patient perspective. And I present a lot in front of medical professionals at conferences, and within these committees, where things are published. So we get the patient perspective out there, which is so important because you always…. you know, doctors, and nurses, they’re doing their jobs, and they’re really dedicated, and they’re doing their best because their job is to make sure that we survive. But a lot of times, it’s bringing forth this perspective, the patient perspective, and reminding doctors and nurses of the reason why they’re doing it. So it’s really, you know, in its most basic term, yes, it’s to get them surviving and out of the door. But on the other hand, you want people to survive, and live a life worth living.

Kali Dayton 46:44
That is so powerful, especially coming from someone that has survived so much and been through so much. And that is the objective of this podcast is to bring us to a higher level and Empire focus of facilitating thrival. And our ICU patients, not just survival, but we won’t do so until we know the wide we understand what you’ve been through how long your course was, all the repercussions of sedation and immobility. And that will hopefully move us to avoid it when possible.

Eileen Rubin 47:19
Right. I mean, I think that the big message here is kind of twofold is that if you have a good level of communication with your patients, and your patients families, and and they do with their with the medical professionals, whoever enters the ICU room is part of the patient’s medical team. If there’s good communication that flows back and forth, from this group of people to one another, then it will be more accommodating, and a less frustrating, less anxious, more cooperative environment for everybody involved on that team.

And the other thing is to recognize the importance of early mobility, so that patients are are up and moving as soon as possible. So at the point when it’s feasibly safest to do it, to get them up and moving, and make sure that they don’t get to a point where they’re, they’re so decondition. And their delirium is so bad that this causes prolonged PTSD, Post ARDS.

Kali Dayton 48:35
So powerful and amen to everything you’ve said. Eileen, thank you so much for sharing this with us. And I will put a link to the ARDS Foundation website on the medium link that is provided in the podcast.

ARDS FOUNDATION: www.ARDSglobal.org

Transcribed by https://otter.ai

 

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