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Kali Dayton 0:35
One of the main motifs throughout this podcast is patient autonomy and giving patients the opportunity to fight for their own life. This episode is incredibly special as I had the honor of discussing patient perspective, with a current ICU patient fighting for her life on ECMO.

Denise, thank you so much for being willing to share your journey on the podcast. And just for listeners, just to give context, Denise does have a tracheostomy. She requests that support be turned up on her ventilator to help her talk a little bit more fluently, but we might be taking some breaks and we’re all just excited to hear about Denise’s journey. Do you mind introducing yourself to Denise No, no,

Denise Bazalda 1:18
Thank you so much for having me. My name is Denise Balzalda. I’m a 34 mother of one and a dog mom to a Golden Retriever. And pretty much before my hospitalization I was a stay at home mom enjoying life. I mean, for lack of a better word. Everything was perfect.

Kali Dayton 1:41
Yeah, your your family was your life.

Denise Bazalda 1:44
Yes, definitely so.

Kali Dayton 1:46
I love that. And how long ago did you start your journey in the ICU?

Denise Bazalda 1:52
It started in August of 2021. I came into the hospital because I was having complications COVID I came in with my oxygen being about I think it was like in the low 80s. So I was put on air vo right away. And that’s just a higher form of, you know, of oxygen and air vo right away. And I was probably in the IMU unit for a couple of days. And where I needed more respiratory support, where I was then transferred to the ICU.

And I was in the ICU, maybe about a month. Because I was I was intubated the day after my birthday. So September 17. And so from then on, you’re just trying to, you know, get me to the point where I wasn’t gonna have to be intubated. But you know, I was ended up intubated. And I was intubated and sedated for close to three months. And and a lot about what we talked about a little bit before was the delirium. And that’s where my delirium came in. It’s during the time that I was intubated and sedated. And where I just had visions or dreams of what I thought was going on in the hospital versus what was actually going on.

Kali Dayton 3:24
What was the nature of them? Were they pretty normal? Okay? Were they scary?

Denise Bazalda 3:29
No, they were definitely scary. I, one of the ones that I vaguely remember is I thought that they were…. the hospital was transporting organs. Just things that you know, normally. I mean, like it was this was a black market type situation.

Kali Dayton 3:51
That’s such a common scenario that people live during delirium. I wonder why?

Denise Bazalda 3:55
I know! Yeah. And so I was finally extubated about maybe the end of November. And they were really worried about what how my memory was going to be. Because during the time, when I was being intubated, I coded twice, both of them combined for a total of nine minutes, I believe?

So they were worried about the loss of oxygen to my brain and how my memory was going to be. So when I was finally able to wake up, then I recognized my husband right away. So they’re like, Okay, great, you know, she understands and she knows what’s going on. And I couldn’t speak I wasn’t I was on a ventilator, wasn’t able to have a speaking valve. So I was just wanting to see my daughter asking, like, what is going on? Why do I have at this point? I wasn’t on ECMO. I was still just on vent.

Kali Dayton 4:53
How did you communicate? Could you write?

Denise Bazalda 4:57
No, my family was so good at reading My lips.

Kali Dayton 5:00
Oh, wow.

Denise Bazalda 5:02
I’m very blessed with my support team, they were just, they could just, you know, read my lips. So the other thing about that was, because I was sedated for so long, I wasn’t even able to lift my finger. So even if I wanted a write, I couldn’t. I couldn’t lift in any of my extremities.

So we were concerned about how much of my physical strength was, was I work? Am I going to regain any strength at all? Or, you know, what is my life going to look like? So physical therapy came into play right away. And that was such a huge, I cannot stress that enough. Just how much physical therapy came in, and just help, you know, doing exercises on the bed? Because I wasn’t even able to sit up my, I couldn’t tolerate sitting up at all.

Kali Dayton 5:56
And what was that like to be intolerant of sitting up?

Denise Bazalda 6:02
When you go to being a homemaker who is up and down all day, and you are the provider, you’re so used to taking care of everybody. When you’re the one on the opposite end? It’s mentally it’s such a challenge, because I don’t want anybody doing anything for me, I want to do it all myself. But the fact that you’re not capable. I mean, it’s just it makes you feel less of a human. Yeah, because you’re relying on somebody to literally do everything for you.

Kali Dayton 6:50
And that makes me feel panic, just thinking about that. Because very active autonomous, I have 4 little kids, I can’t imagine. It hurts me to imagine being confined to bed and being that dependent.

Denise Bazalda 7:03
Yeah, that’s it anything out of this whole journey, that’s still something that I, I struggle with, just because I’m a very independent person, it’s that I still need help, you know, doing certain things. Luckily, over time with the amount of physical therapy that I received. I mean, obviously, you’ve seen my tic tocks. I’m up and moving, I do have a drop foot. And we have an AFO that we use on my right leg. And that helps a lot. But I, we did not think that I was going to make it this far.

Kali Dayton 7:41
How long did it take to get back on your feet.

Denise Bazalda 7:45
Oh, that was a while, let’s say. I don’t think that I actually started like walking without…. well, with the walker. Last year, it was probably last year, like November of last year. And then just recently this year, I’ve said “Okay, I refuse to use a walker. We are going to, we are going to make it out of here without without a walker.” So I’m happy to say that I’m the first ECMO patient on this unit that has walked without a walker.

Kali Dayton 8:29
Oh, that’s amazing. And what do those goals mean to you?

Denise Bazalda 8:32
Everything, because I, I like to challenge myself. And obviously, I’m fighting for my life. And just to know that I can set a goal. And then just envision myself saying, I envision myself walking out of this place, I envision myself doing that. And getting to those goals. It makes me feel confident that I am going to walk out of here, and that I’m going to be able to be d cannulated. And then I’m going to be able to go home to my daughter and my husband, and I’m gonna, I may not be able to do everything that I did before. But if I want to get damn close to it.

Kali Dayton 9:15
Denise, means you’ve been on such a long road I can’t imagine. Just the resilience this must take, the psychological burden of all of this. There’s such a spectrum of approaches when it comes to ECMO right now throughout the IC community. Some teams deeply today every ECMO patient and other teams hardly ever say their ECMO patients and have them up walking. It sounds like you’re in one of those teams. What would you have echo teens that don’t have experience having patients awake and mobile? What would you have them understand about this process of care for you?

Denise Bazalda 9:54
I understand that having a patient on ECMO. It’s skit scary, there’s a lot to it depending on where you’re cannulated, you may be able to be more and more bio for me on cannulated on my neck, I know several people or other kids are cannulated in their groins.

But I feel patient should be aware of what’s going on, let them fight the will, that an individual has to meet surpasses what medication can do. And for me, for instance, I’m grateful that I can see my daughter. So my daughter visits me once a week. And anytime I feel, you know, this is just beginning to be too much for me, I see that little girl and I know why I’m fighting.

I see my family, I just see the interact, that I’m able to interact with people that I can look out the window, and I want to go out the window, you know, just knowing that this is just my temporary home. And this is a temporary situation gives me so much energy to want to fight. And then I told myself, “I have to get up, I have to get up. And I have to know. Because that’s our only option. You have to get up and you have to move.” And I mean, this is my current situation. But give me a chance to fight for myself. Let me hear what my odds are so I can show you how I can beat them.

Kali Dayton 11:27
Wow.

Denise Bazalda 11:28
And I think if if they want to give patients the opportunity to fight for themselves, I love medicine, medicine has done great and wonderful things. But the drive that a person has for themselves, you’d be surprised what they can do once you tell them this is your obstacle, this is your probability and watch them fight.

Kali Dayton 11:56
Oh, that is so powerful. Obviously in the data, we can see the physical benefits of mobility and certain medications, we can really measure things easily. We can look at within the lab values function of the kidneys, function of the liver, things like that. But it’s really hard to gauge the function of the soul. Right, really underestimate how much more out and the will to live plays into a patient’s survival. And you’re saying that it’s key, it’s probably the main reason you are still alive.

Denise Bazalda 12:32
Yeah, definitely. Definitely.

Kali Dayton 12:35
You’ve experienced now both you’ve been sedated, stuck in delirium and awake now? And a very aware of everything going on. A lot of concerns people have is how do we keep them comfortable? What about anxiety? Someone just asked me last night in a presentation. What about if they’re hungry or thirsty? What would you say to those concerns?

Denise Bazalda 13:01
Obviously, I’ve been on this unit for a while I’ve been on ECMO since June of 2022. And I have seen several different types of ECMO patients, some that they’re just able to be on two feedings, I’ve been very blessed enough to where I can actually eat, drink water, everything I have a speaking valve. And, you know, that’s I’m very grateful for that. I count my blessings. I do struggle with anxiety.

However, Methodist has a great team of psychotherapists that will come and help, you know, give you tools on, on how to overcome things. And, you know, just the, for instance today, we had a musical therapist in here today. And I’m very big in my faith. And we just sing praise and worship songs. And that helps bring down you know, your anxiety, the fact that you’re awake, and you can see your loved ones.

Just seeing your loved ones you know, helps a lot with your anxiety. And when you’re on ECMO and you’re in the ICU, you get really close to the staff. And, you know, they start to know your patterns and they start to see when you’re starting to look a little bit uncomfortable or if a situation is too much. So trusting your team that they will come in and be like, “Hey, it’s okay. You know, just take a minute, and it’s totally fine to have your days.”

Like I tell myself, I can have my days but I can only have one day and let me have my day to feel bad for myself or whatever the situation is. But tomorrow we’re not going to do this. Tomorrow we’re going to get up we’re gonna do all the things and we’re gonna fight.

Kali Dayton 14:52
Wow, Denise, you are powerful and I can only imagine the really special bond you have with those clinicians In a previous episode, I think two episodes ago or so talking about the echo team that implemented mobility right in the thick of the worst of COVID and decreased mortality by 30%. One of my questions was, “Was it more work to care for patients that were awake?”

And see, she did say that, yes, there’s work involved with it. But that the team found so much joy and fulfillment and making these connections with patients that they were not able to have before. If you’ve been listening to this podcast, you’re likely convinced that sedation and mobility practices in the ICU need to change.

And so that’s been one of my favorite parts of critical care medicine has been being able to be supportive to patients during these life or death situations, especially if they’re there for longer. I feel like I get so much out of it. So I don’t think you as a patient may recognize how much joy and fulfillment you bring to the careers of clinicians, and what ways have they helped you be so resilient?

Denise Bazalda 17:06
I’m not sure if it’s, if it’s this way, another ECMO units. But in this ECMO unit, it’s a one nurse to one to patient ratio. And I can honestly say that the nurses and doctors on this team, they’re more like family now. They know all of my family, they they go above and beyond, I am forever indebted to them for everything that they’ve done for us. It took me a while to finally say, okay, I can trust you that anxiety of I don’t know, you, you know, I’m just such a private person.

But everybody here wants the same thing. You know, they want, they want to see us all get better. They want us all to go home and, and live our lives. Everybody knows my story that I have a little girl. She’s three and a half years old, and she misses her mama. And you know, and also, she comes to the unit and everybody sees her. So I think I’m seeing the connection that I have with my daughter, and then I have with my family. I think it’s, it gives them more.

I’m not gonna say have a soft heart, because I think to be in the medical field, you already have a soft heart. But you know, it just, it makes that connection with us that much stronger because they see what I’m fighting for. And they help me fight for that. If I do get anxious, or if I do get down on myself, they come in and say hey, Denise, you know why you’re fighting? This little girl doesn’t deserve this. And that’s all I need to hear.

Kali Dayton 18:51
Wow. That’s pretty personal, I mean, to be able to kind of pull you up by the bootstraps, right?

Denise Bazalda 18:58
And you know, and we give them full permission to you speak to me the way he would speak to your sister.

Kali Dayton 19:06
And for some clinicians that might be listening to this, this could be just a huge contrast, if you can imagine, throughout the pandemic, and even still, it’s become standardized to have patients completely mobilized comatose, with very little response. What I’m hearing from many podcast listeners is that they pine to have this kind of connection. But there are lots of barriers, and many are starting to try to revolutionize their units try to bring this change. Do you have any recommendations for teams or just those few visionaries that are trying to get everyone else on board?

Denise Bazalda 19:44
I would say it’s easier to ask for forgiveness and permission. So go ahead and do it. If you feel that your patient is strong enough. Just try it. Show them that it’s you know, show them that it’s not as bad I know with me, I love music. So we started playing music in the hallway. And no one ever really did that. So it just got the staff excited, because, you know, we’re walking around, and they’re listening to music, and it got patients like, who’s out playing music outside. So now it’s like a normal in this unit, like, you know, whose playlist is better than the neck.

Kali Dayton 20:26
Like you’re a trend-setter! So you get to know the other ECMO patients?

Denise Bazalda 20:31
I laugh. My joke is, “Don’t make eye contact with me, because I’m gonna think you want to be my friend.” So if my doors open, and a patient is walking, I smile, you know, and I’ll probably have a family member go and say, “This is my phone number if you’re bored,”

You know, because, you know, there’s HIPAA laws, so I know nurses can’t get involved. Yeah, family member go in and say, “You know, my, they’ll say my sister saw you walking and, you know, we know, it gets, you know, lonesome in here. So feel free to text.” And I’ve met several great friends, another patient who was also on ECMO. Or I think she was on ECMO for 367 days, we’re both waiting for lungs, and she got her lungs, and she went home and third unit hosted an ECMO Olympics, for the both of us.

We were able to kick around a soccer ball. We played darts just, you know, games to, you know, get us out of the room and, and just show we can actually do where were people in an unfortunate circumstance. But, I mean, we want to fight we want to be treated just like everybody else. And really, I also think that humor is also a good part of, you know, medicine and, and gets everybody’s morale up. So if we can laugh during the day or laugh about our situation, then, I mean, let’s do it.

Kali Dayton 22:20
It’s medicinal!

Denise Bazalda 22:22
Yes.

Kali Dayton 22:23
And I think, as a culture, we’ve lost a lot of those skills, and appreciation for those things because of sedation, essentially, it takes away those opportunities. And it’s caused a lot of the burnout and moral injury, or at least contributed to it. So I am sure many podcast listeners are kind of salivating at the prospect of working in a unit that has this kind of culture, humanity creativity. During the Olympics, I mean, that’s just they’re thinking outside the box, they’re trying to customize a personalized care for and with you. Tell us what, what you’re waiting for, and what the future hopefully has in store for you.

Denise Bazalda 23:02
So I am in need of a double lung transplant. Because I’ve been on ECMO so long, I started having some pulmonary hypertension issues as well. So we’re praying that that will resolve once I get my new lungs, my issue is I am five feet tall. And I have very high antibodies. So that makes it very difficult for me to find a donor more, so I’m competing more with the youth, because that’s about the size of the donor that I need. And many adults sign up to be organ donors, which is great.

But as a parent, I understand when your child passes away, the last thing you want to think about is what am I going to do with their organs. So this has really taught me that we need to look to see what’s available out there and help people of all ages because, I mean, they’re just things that I never really thought about, you know, and like, oh my god, like, infants should be donors or everybody, you know, should be a donor. And that’s what’s really, I mean, especially as a mom, yeah, as a mom myself, I think about this and, and I say to myself, “what would I….” if you would have asked me before my situation, if something would have happened to my child? I’d be like, “How dare you even asked me that!”

And now this has really put things into perspective for me, and you realize how many lives you can save. And what is better than even if your child is not here, Earth side, but there are organs will help somebody else be happy with their loved ones. So it’s really the gift of life. And so I’m waiting for my gift of life.

Kali Dayton 25:11
And this is inspiring that you have just hung in and you’ve worked hard, you’re really walking like your life depends on it. With a walker on ECMO, you’ve rehabilitated from profound icy acquired weakness while on ECMO. And that’s probably one of the main reasons you’re still here today is along with your will to live is that you’ve been with a team that looks at the big picture. They want you to survive, they want you to thrive, transplant,

Denise Bazalda 25:39
and if anything, I’d like to take a moment to thank my whole medical team, because they have been a godsend, they really fight for me, they take a No BS approach. And we’re just very we have that report where it’s just telling me like it is don’t sugarcoat things, you know, what are we looking at. And I really respect the fact that we can all work as a team together. I’m very much a part of my care plan. And I’m only able to do that because I’m awake. Yes. And so many things.

When you’re in an ICU and an ECMO, so many things change on a constant basis. But I understand when all the doctors come in, and, and they explain all these medical terms and what my sweep is what everything is, you know, I’m just so empowered that I understand what’s going on, I know what to ask, I can say, I can use some lasix right now. Or, you know, maybe I’m too dry. Let’s not, you know, let’s not do anything, but I’m able I’m able to advocate for myself, and and wake these people up so they can advocate for themselves.

Kali Dayton 27:00
Thank you. Yes, I love teaching patients about the ventilator they can kind of watch on their own, they can ask, “When am I getting extubated? What do I need to do?”

Denise Bazalda 27:08
Let them understand! If you let them understand what’s going on and explain things to them. Tell them, you know, you need albumin because, you know, your chattering and, you know, the RPMs of the ECMO, you know, all that to explain it to them. That way they know that for me, I noticed that and I’m just like, you know, you feel a chatter coming on. And I’ll say, “Hey, guys, I think I’m chattering, chatting a little bit too much. Let’s talk you know, maybe it’s time for some albumin,” or you know, or whatever it is. But I know how my body is, I know my body. And if you give me the opportunity, I will probably let you know what I feel is wrong with me before the blood test comes back.

Kali Dayton 27:58
So a good example of that podcast listener told me that he had a patient that was intubated and wrote that he had chest pain. So they did a chest xray, and they got a pneumothorax. And as the moment that they’re looking at the chest xray on the screen, he codes. And they already know what’s going on. So as they’re coding, and they were able to put a test tube in and they evacuated pneumothorax, and they got him back. If he hadn’t been able to communicate, they would have had no idea.

And they would have been the whole code trying to figure it out and probably wouldn’t have been successful. So it’s amazing what patients can and will tell you, it’s part of I don’t know how you assess what’s going on with, with someone’s body without them telling you what they’re experiencing. Right. And one of the concerns is about people trying to remove their lines or their tubes. was interesting as a team that I just worked with, even before I went on site to work with them, just them during the webinars, they change started to change their sedation practices use a lot less sedation, if any at all.

Even before mobilizing they had probably such a decrease in delirium that their restraint use has decreased already by 40%. And which tells me that patients are not as delirious and their unplanned activations don’t seem to be increasing and not even really changing, probably. So what helps you cope with these lines and tubes? I mean, is there any risk of you pulling them out?

Denise Bazalda 29:30
Not at all. It’s keeping me alive. But I want to do that. No, not and not only that, but if I pull my PICC line out, I’m gonna need another one. And it’s, you know, I don’t want to mess with anything. You know, it’s everything. It’s, it’s to my benefit. So I don’t want to mess with anything of anything. If my bandage starts coming undone, I’m like, oh, we need to fix this. You know, you just become so aware of have what you need. This is how you get your medication. This is what helps you survive. I don’t want to mess. No, I don’t want to mess with anything.

Kali Dayton 30:10
Absolutely. And what was it like to have delirium and then have all these devices strapped onto you?

Denise Bazalda 30:16
When I initially came out of sedation, I was constrained because they didn’t know how I was going to react. And it’s a funny story. When my husband visited me, when I was in the ICU and still restrained, it was the first time that they had taken everything off of me. And he walked in the room, he said, I was asleep. And he saw that there was nothing holding me down. So he ran back out to the nurse’s station, and said, she took everything off, put it back on and put it back on. It’s a scary if they assured her No, they’ve been watching me, I’ve been doing pretty good. I’ve earned my trust. And you were also so weak, right? I was so weak that I couldn’t even look my hands of quality.

Kali Dayton 31:04
So what you wouldn’t be able to get to anything, which I think is oftentimes the case unless patients are clear delirium right away, and we don’t start sedation. But oftentimes, when they take it up, sometimes we so deeply sedate patients that we don’t use restraints because they can’t lift a finger under sedation. And then once it takes sedation off, they can’t lift a finger.

And I just, I get I feel panicked for you in that scenario. And Denise, this just reminded me of just validating experiences that I’ve had with teams, feeling about how much they care about their patients. How much they deeply want them to survive and thrive. And it’s such an intimate experience to have patients there for a couple of weeks, a couple of months, and you’re going to be on a year. I mean, this is…

Denise Bazalda 31:58
No, I am at a year and a half now.

Kali Dayton 32:02
A year and a half in the ICU

Denise Bazalda 32:05
A year and a half in the ICU.

Kali Dayton 32:07
Well congratulations on your hard work. Congratulations to your team for such wonderful practices that have kept you so alive and really thriving at this point. And we’re all going about our ears to the ground for some lungs for you. That’s everyone’s greatest wish for you. Thank you for your Tiktok account. I know this is extremely personal and vulnerable. You mentioned that your private person but you are making such an impact from that room on the rest of the world and you sharing your experiences right now hopefully will help mold ECMO care to come in the future. Thank you.

Denise Bazalda 32:46
I’m very happy to be a part of this. Thank you for taking the time to getting to know me to help share my story

Kali Dayton 32:53
The best of luck and prayers to your family as well give them my congratulations because I know that they’ve been a key part of this as well.

Transcribed by https://otter.ai

 

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