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Katy Grainger: [00:00:00] I was disoriented. Whatever happened, um, I probably missed a step, broke the bone in my foot and then fell on my other foot and sprained it, and I had abrasions on my knee. But instead of calling for help like one would do in that situation, I crawled back into bed and went to sleep. So I very easily could have died in my bed that night.
Nicole Kupchik: This is the sepsis spectrum. A podcast about antimicrobial resistance, sepsis, and how to expect the unexpected in your practice.
Okay? So it’s not the most fun thing to imagine, but let’s say you had sepsis and yay you survived. The ICUs behind you, the beeping stops. The tubes are out. The doctors say miracle, and you believe them. If you’re going home, you’ve made it, but then a few days pass and you’re completely [00:01:00] exhausted, but can’t sleep.
Your hands treble you forget words. You try to stand, but your body won’t listen. You feel off alone. No one told you it would feel like this. This isn’t a clean bill of health. Realistically, it’s a pause and without clear follow-ups, without real support, without a plan, the cracks will start to show. And if a drug resistant infection joins the party, everything you just survived.
Could come back with a vengeance and things will spiral out of control, and when they do so quickly and quietly, suddenly you’re not recovering anymore. You’re fighting to survive again. In my opinion, this just won’t do.
[00:02:00] Hi everyone, and welcome to the sepsis spectrum. My name is Nicole Kupchik, critical Care Nurse and clinical Nurse Specialist and your guide to Antimicrobial Mysteries. Today I am joined by Katy Grainger, who survived septic shock, but who also survived. Bilateral below the knee amputations and the loss of seven fingertips.
She also survived delirium and a lot of what came along with Post ICU syndrome. She’s gonna tell her story in the journey she experienced in recovery. And then we’ll be joined by Dr. Mark Mikkelsen. Dr. Mikkelsen is the Associate Chief Medical Officer of Critical Care at the University of Colorado. He has done extensive work in antimicrobial resistance and then also transitions of care and post discharge care for patients who have experienced sepsis.
So first, let’s kick it off with Katy [00:03:00] Grainger.
All right. I wanna welcome to the show Katy Grainger. So Katy and I met a few years ago through the sepsis alliance, and I was absolutely blown away by your story, Katy. Uh, you’ve survived septic shock, DIC delirium, just to name a few issues. Would you mind just kind of opening up and telling us your story?
Katy Grainger: You bet. So, um, I was living in Hawaii at the time. Um, I had come from Seattle and the only reason that that’s relevant is because I was, had been in a big city with amazing medical care and then I moved to the island of Hawaii, which is pretty small. It’s a smaller of the main Hawaiian islands. And um, we have a really great hospital there, but it is a small hospital and they don’t have everything that one might need.
And I happen to live an hour away from it. So there’s really nothing between me and that hospital except for a little emergency clinic. [00:04:00] So when I got sick, I had gotten off an airplane visiting my family for two weeks on the mainland. And um, I drove the hour to my house in remote Hanoi, I mean, kind of a remote area of Hanoi Valley.
And, um, I, um, had noticed that I had a small infection on my thumb and it was, um. Purple and oozing, which was unusual. I had never seen an infection that looked like this. I mean, it just, the coloring was wrong. The fact that it was kind of oozing and I kept, I kept blotting it on the airplane and it kept oozing.
It was just clear fluid, but it was just weird. And so I immediately suspected that it might be a staph infection. Um, we had had a big flood in our valley prior, and um, it was something that we were keeping an eye out for. I thought it might be a staph infection, so I ended up going to an emergency clinic on the way home.
And um, I was also concerned because in Hawaii everything grows really well, so we get some really gnarly infections and um, I. I went into that clinic, showed them, they took a swab and told me that it would take a few days for them to get results [00:05:00] saying what type of bacteria it was. And what they were really concerned about was, um, like a antibiotic resistant staph infection.
And, um, I will just say that that’s probably what it was. And, um. At the time we did not know that. So they gave me an antibiotic ointment that usually will kill that. And, um, they gave me antibiotics to start taking over the weekend if things got worse because I was in such a remote area. And so I went home and I proceeded by myself, um, to, um, sleep a lot of the weekend.
I, I wrote that off and said, oh, it’s probably just because I’m tired from traveling. Um, I had bought a thermometer to take my temperature. I had the false belief that. If I was getting sick, I would have a fever. And it turns out that you don’t always have a fever when you’re getting sick. And I didn’t know that.
So, um, I, um, proceeded to take my temperature all weekend, but I never really spiked a fever. And, um, on the second day, which was Saturday, I texted my husband that I had thrown up. And the reason I mentioned a text is because I don’t have memories of the weekend. [00:06:00] I just know myself well enough to know that I kept taking my temperature.
’cause that’s what I. Last, remember, is that I’m gonna just check for a fever and if I don’t get a fever, I don’t have to worry about anything. And I mean, honestly, I had, um, heard about sepsis. I knew what it was. I had an idea that your body could overreact to an infection. And I was aware of it, but even being aware of it, I didn’t know the signs and symptoms.
So as I was experiencing them, I wasn’t recognizing it.
Nicole Kupchik: Well, and it sounds like you were kind of out of it as well.
Katy Grainger: Well, that, that was the thing I was gonna say. Yeah. By Saturday night, I think I was. And, um, because I was texting people, they were, um, someone tried to reach out to me and I said, I’ll call you tomorrow.
I’m really tired. So I was responding to people, but I was getting more and more lethargic. And um, you know, I think that is that swelling in my brain. You would know better than I.
Nicole Kupchik: Well, I, well, there’s an encephalopathy that can come along with sepsis and there often patients are lethargic. They can even get like confused.
It’s, it’s actually really common. It’s a sign of organ dysfunction. Right. And so you had. [00:07:00] Organ dysfunction early. I, yeah, I had the beginnings
Katy Grainger: of it by by Saturday. So this is only, I mean, this is 24 hours after I had been to the clinic that I’m already experiencing these symptoms. Most likely. It’s pretty clear from my text that I just slept during the afternoon.
I rejected a phone call from my husband, which I know, I mean, usually I’ll talk to him in the night before we go to bed when we’re apart. And I just said, Hey, I’ll just talk to you tomorrow. And, um. Then that night I proceeded most likely to get up from my bed and go to the bathroom is what I’m guessing because, um.
Somehow I fell in the middle of the night and I broke my left foot and I sprained my right ankle. And I think what happened is that I was wa, I went up to my bathroom, which is two steps above my bedroom, and that probably because of low blood pressure, which we later found out I had very low blood pressure or whatever was going on with me.
I was disoriented. Whatever happened, um, I probably missed a step, broke the bone in my foot and then fell on my other foot and sprained it. And I had abrasions on my knee, but instead [00:08:00] of. Calling for help like one would do in that situation. I crawled back into bed and went to sleep, so I very easily could have died in my bed that night.
Nicole Kupchik: Yeah. So then fast forward you get very sick and you end up going to the hospital. A friend drove you to the hospital?
Katy Grainger: Yes. Fortunately I called for help,
Nicole Kupchik: thank God. Right. But fast forward to that. Now you’re at the hospital and things quickly deteriorated. So can you kind of share what happened there? So.
Katy Grainger: My friend actually called ahead to the hospital ’cause I was in her car and um, I had texted her saying a very garbled text saying I’ve never been so sick. And that is, that is a very clear, I look at this text and, and you can see that it’s missing half the letters. It’s like in all caps, like I was trying to put the other letter.
It’s very confusing. So you can see that I was not thinking right. Um, but she understood something was wrong and came and got me, got me to the hospital, and what I started crying in the car because my, I told her my hands and feet are on fire. And I just said, can you please hurry? I’m really sore, you know, my hands and feet.
They, they’re, they feel like they’re burning and, and, um, I. [00:09:00] So she called ahead of the hospital. So they met us with a gurney at the hospital, took me in immediately, took my vital signs, and um, I had a tiny temperature, nothing major, but, um, my heart rate was fast, my breathing rate was fast. And um, I was, um, my blood pressure was 50 over 30.
That’s low. Yeah, so
Nicole Kupchik: that’s very low. So,
Katy Grainger: um, I think you’re in
Nicole Kupchik: shock.
Katy Grainger: Yes, I was definitely in shock. And I think at that point they, um, I think at that point they, with what was happening with my hands, it was an indication of a secondary condition called DIC or disseminated intravascular coagulation, where I was bleeding out in my fingertips, my blood vessels were leaking, and then I was clotting also, and it’s very painful and it cuts off circulation.
I think they probably recognize that symptom and then. With my, combined with my blood pressure, they knew I was in shock because that is the definition, isn’t it? The low blood pressure. So they put me right in the ICU and um, or they considered me critical. I don’t know that [00:10:00] I actually went into a different room, but I was in critical condition and they immediately did a sepsis protocol, which was great for a small rural hospital.
Um, to have a protocol was really what saved my life, I think. Um, because they got me on antibiotics immediately and, um. With those antibiotics? I think that they presumed, because I had, I, I’m sure I told them I’d taken one or two antibiotics that day. I don’t even remember, but I’m sure I did at the time.
And, um, that I had been to the doctor. So I think that they, they were giving me antibiotics that would treat that and, um, they gave them to me immediately. And then also, um, resuscitated me with fluids and oxygen because I was having difficulty breathing.
Nicole Kupchik: You went through a lot. So just kind of can you just summarize like what happened in the next, the following week?
Katy Grainger: Sure. Um, so throughout the day, my organs continued to fail, so I mentioned continue because my vascular system is failing at this point. Clearly with what was happening in my fingertips, my lungs were failing with my oxygen levels. [00:11:00] And, um, my kidneys, um, failed during the day and they realized that they would have to get me, um, to a hospital where I could do dialysis.
And, um, they immediately began making plans to transfer me to a larger hospital, airlift me over to Oahu, and um, that’s where Honolulu is. And so that’s our major city here in Hawaii and they have a very, um, good level one trauma center there. And so they were arranging to, to get me over there, but one of the things I always like to point out is that there were no beds available and this was just an ordinary weekend.
So. We spent hours, um, you know, they were kind of trying to juggle on their end to see if there might be a patient that they, they were getting ready to move out and so I had to wait for someone to move out for myself to be able to move in. So there was, you know, some time loss there because hospitals are.
Not designed for the worst, you know, for every possible situation. They’re just designed for kind of what they expect will be their busiest. And, um, I hit up against that and I always, um, you know, [00:12:00] COVID came after this happened with me and through COVID. I couldn’t help but think the whole time that had this happened to me in COVID.
- I probably wouldn’t have survived. But, um, I was airlifted and I was put into a coma, airlifted over to Harborview, and I mean, excuse me, not Harborview, that’s in Seattle. Um, I did go there later, but I went to, um, the Queen’s medical center on Oahu. And my husband at this point had been fishing in Idaho and had spent the last 30 hours or however long since he had known trying to get over to, um, Honolulu, where he met me at the hospital.
And, um, he was told that I was. Not stable after the flight and that they had to get me stabilized. And, um, then they came out and told him that if he, we had family, which we do, we have two daughters that he should call them and ask them to come to be, be by my side. And then he said that he didn’t know if I would make it through the night.
That’s pretty heavy. I can’t imagine being on a flight
Nicole Kupchik: having that in my head, you know? Yeah,
Katy Grainger: I know. I think of my husband all the time. I was, I was kind of out of it. So I think. Thank God I missed a lot [00:13:00] of this. Um, just, and I didn’t, I never understood how sick I was. Um, but I, you know, it really hadn’t become clear until after I was already intubated.
And when I was intubated, they put me into a drug induced coma. So I was in that coma for a week. And, um, while my organs were trying to heal, I had more organs failing during that time. And, um, I definitely, for the first couple days I kind of took a dive and then I started recovering and things started looking more hopeful.
Um. And by, um, the following Saturday, they were able to, um, extubate me and take the tubes out and I was able to breathe on my own, although I had difficulty for a week, um, even trying to keep my oxygen levels up on my own. So it was really crucial that my family was there with me because they were with me 24 hours a day taking shifts and they would wake me up.
’cause when you, um, when you sleep, when you’re on medications or when you’re having difficulty breathing, you’re breathing. Slower. And so they would wake me up when my oxygen levels would get low on the monitors and they would make me breathe. And I really [00:14:00] credit them. I mean, obviously both of the hospitals saved my life, but also I think my family really kept me from being reintubated because that was a, a strong possibility with.
The way that my, um, oxygen levels were dropping. Um, the thing that I have not mentioned is the worst part of all, which is that during this whole time, um, my family watched my hands and feet turn purple from lack of oxygen. And, um, they were using monitors that they would test my blood flow and you could hear a heart rate, heart rate, heart rate, and then they’d get down to where, um, my skin was purple and it would get less or it would be gone altogether.
So I ended up losing seven of my fingertips in both of my lower legs. Because of the DIC
Nicole Kupchik: and that’s a lot to have to recover from just the sepsis alone and the infection was, would be a lot to recover from. But now. You end up with bilateral amputations mm-hmm. And losing seven of your fingertips, so you eventually get discharged.
So tell us like what, where did, where were you discharged to and what did that transition [00:15:00] look like?
Katy Grainger: Most of our family and a lot of our long-term friends are in the Seattle area as well as a very great medical center there, and so we just decided that. With the level of these amputations, um, that I was going to need.
I mean, your hands are so sensitive, you want a very specialized surgeon to do that. And then your legs are so significant. And, um, so we made the choice to go back to the Seattle area. So we were airlifted to Seattle. I went into Harborview Medical Center there where I had, um, both of my surgeries and then, um.
The kind of the, the plan during that time. And the big thing as you just mentioned, was overcoming how weak I was in this recovery. I had lost 20 pounds and, um, and I was, um, I, I actually continued losing even more weight than that, and I was considered severely malnourished. I had to, you know, get enough food back in my body this whole time I was on broad spectrum antibiotics because they never figured out what the pathogen was.
And, um, so I was vomiting and, and just nothing could stay in my body. [00:16:00] So I. I was very, very weak. And like you say, I was recovering from the sepsis before I could even address that secondary thing, which was these operations. But I did end up getting them at Harborview. I got stronger over about a month.
Um, I had the surgeries and then I was released. Um, I had an opportunity, I had an option, I mean, to go into either, um, a care facility at Harborview Medical Center where that I could have gone to inpatient care or I could have gone home with my family. Um, we had a house there that had been set up. Us and um, so I could go into house with my family and they would continue caring for me like they were.
And then we were actually in a position that many people aren’t, where we were able to get a private nurse. And so I had someone that could help me through that transition. But we did it in conjunction with the outpatient program at the hospital. And not every hospital has that, but that was one of the things that drew us to Harborview is that we knew that they had that program in place.
Nicole Kupchik: Yeah, the rehabilitation is, is really where. Life starts over again, right. I mean, truly a hundred
Katy Grainger: [00:17:00] percent. And um, you know, one of the things we didn’t talk about is post sepsis syndrome, and you might have been about to mention that, but I just wanna say that that’s one of the things too, is that after something this traumatic has happened, you have a lot of physical issues, you know, pain in, uh, for me, for instance, I have, um, neuropathy.
I have pain in my fingers and in my legs, and I have, um, obviously I wear prosthetic legs now, you know, and that’s a huge deal, is having to learn how to walk. Um, I had. Kidney damage I had, um, you know, had to strengthen my lungs again. And, um, then I was suffering, you know, just confusion, mental things. I, I had confusion.
I had some brain damage from what had gone on with me. And, um, then also trauma. I mentioned, you know, how, how troubling COVID was for me. I felt like COVID for me was such a big, it was A-P-T-S-D trigger. I figured out during that time I have PTSD from this. And as these people are having difficulty in ending up in the ICU and dying from COVID, which I’ve since learned.
Those people die from sepsis, that’s what happens. They have this huge inflammatory [00:18:00] response often as a result of that infection, which is the, the COVID. And so it was really similar to what was happening to me. And, um, anyway, so PTSD and then depression was huge. Um, I remember my best friend when I left the hospital, as we were getting everything lined up, she said, you know, I take a really great.
Antidepressant that helped me get through a divorce. And um, I just made me wanna talk to your doctors about that. And I talked to them and they agreed that that would be helpful. And it has been really helpful for me, um, especially in the beginning. ’cause that transition is so difficult to this new reality.
I was in, I left in a wheelchair. So what is life like now? Oh my gosh. Um, we, my husband and I say this all the time. If we could have seen how my life would be now, it would’ve made this part so much better for us, you know, this time of, of transition because, um, I, at the time I didn’t, I didn’t know I was, I was 52 years old.
I didn’t know if I’d be able to walk again, you know? Um. And I, I know that [00:19:00] prosthetics exist, but I just couldn’t imagine walking on two of them. And I’m just, you know, we had all of these doubts and we weren’t sure I’d ever be able to use my hands. We didn’t think I’d write, we didn’t, you know, we were just, we just thought our whole life would be, um, kind of in this wheelchair.
You sort of see yourself in this place, you know, in kind of, you, you see yourself in the worst place and it’s hard to imagine getting out of it. So anyways, looking back now, um, and I share a lot of this online because I want people to know. You are not gonna be stuck in that place forever. It feels like it, but you will slowly get better and, um, you’ll learn a lot of patience.
The recovery process is slow. It’s, um, a lot of work, but, um, it’s, it, it. It moves forward progressively. So it’s been six years for me now and um, even after a year I was able to get on a standup paddle board and um, I was able to go for small walks. Walking can be difficult, um, ’cause it puts a lot of pressure on my legs.
And same with the standup paddle board. And I will, sometimes I will stand up for a bit and then I’ll get down on my knees and. [00:20:00] And if my legs start getting sore. But I learned to adapt my activities. So I learned to ride a bike. I drove a car. I was shocked when the guy came to give me, um, sort of a test to see my reflexes.
And then he said, oh, they look great. Let’s go drive. And I was like, wait, what? And this was, I’m gonna say maybe. Six months after, and here I was, he took me out and we drove around. He said, yeah, you’re a good driver. I said, make sure you tell my husband that. ’cause I don’t know that he, I don’t know that he doesn’t agree with that.
Thought I was a good driver. Yeah. So anyways, my life, my life has returned to a really a new normal. And one of the things that I’m doing today that I, that I was, something that came up in the hospital is I just became a grandmother. And, um, honestly, this is. What I wanted to live for, and my children knew that when I was in the hospital and my family was looking at my hands and feet dying, I, my daughter said to my husband, you know, dad.
All mom wants is to be a part of our family and, and see us have children one day and to be able to hold her grand babies. [00:21:00] And that is like her big dream. And, and that’s still ahead of her. And so her life, you know, we’ll, we’ll fill in the details. And so I’ve just been able to, you know, realize that dream and I’m able to.
Lift him. I’m able to carry him gently and on carefully. I, I have to watch where I walk because I don’t have feeling in my feet. So I’m extremely careful, obviously, when I have him in my arms. But I can still do the things and I can change diapers and I can, you know, have that time with him. I, I’ve gotten up and down off the floor a couple times with him.
Um, I have to, you know, take him off the floor and then set him on the couch and then I get myself up and then I pick him up off the couch, you know, but I’m already learning to adapt that, and that is just. How you end up, um, getting back to a new normal in any type of recovery is you start figuring out how can I try and do the things that I need to do or want to do and that bring me joy are or are necessary?
Nicole Kupchik: Well, Katy, I just wanna thank you for joining us today and thank you for sharing your story. I’m sure it’s sometimes cathartic and sometimes difficult to, uh, to, to [00:22:00] relive, uh, what you went through. So just a gigantic thank you to you today for sharing.
Katy Grainger: Oh, and thank you for commentating on the whole thing.
It’s just been wonderful. I love speaking with you and you have so much knowledge, so I really appreciate this time together.
Nicole Kupchik: Well, right now we’re gonna go to break, and when we come back, we are gonna be joined by Dr. Mickelson, who is going to chat with us about transitions of care and what life looks like after the ICU.
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And now back to the show.[00:23:00]
Now we’re joined by Dr. Mikkelsen. Uh, Dr. Michaelson, welcome to the show.
Dr. Mark Mikkelsen: Thank you for having me.
Nicole Kupchik: Well, you heard Katy’s story and she went through a lot. She experienced septic shock, was in the ICU for a prolonged period of time. Recovered, then went to a rehabilitation center at Harborview in Seattle, Washington, and then finally made it home and that it was a lot on her and her family.
I just wanna chat with you. The whole idea of post sepsis syndrome and some of those transitions of care that patients experience when they’ve had sepsis or septic shock.
Dr. Mark Mikkelsen: Awesome. Um, thank you, uh, again for the opportunity to join you and, uh, thank you to to Katy for sharing her story. Takes a lot of courage.
Um, but amazing recovery. Uh, thanks to, um. To the team for inviting me to speak a little bit about [00:24:00] post sepsis syndrome. So when Katy tells her story, she talks about time spent in the ICU. She talks about, uh, all of a sudden awakening, um, in the ICU after being on a ventilator, uh, for a period of time. And then fast forward, all of a sudden discharge is approaching.
So I think when we talk about post sepsis syndrome, maybe the first, uh, of several messages is gonna be that. Regardless of whether a patient spent time in an ICU, they’re at risk for long-term consequences of sepsis. That’s a relatively new realization, new meaning within the last 15 or so years. And the reality is that from head to toe, patients who have experienced sepsis often have, uh.
Impairments. They have new challenges. They can be physical, they can be mental, and as discharge approaches, sharing that with patients and their families, that’s sort of where it starts. [00:25:00] Um, and then maybe as we sort of talk about, um, either Katy’s experience or the general experience for sepsis survivors, we can talk about sort of each step along the way in terms of their recovery, their rehabilitation, et cetera.
Nicole Kupchik: Yeah, I think, well, I think one of the challenges is like what resources are available. I, I feel like since the pandemic, we really, that brought to light that patients do need resources and they do need rehab programs, but like what is available to patients once they get discharged.
Dr. Mark Mikkelsen: Again, great question.
So if I think about, um, what different post-acute care services that they’re, um, that exist. So, um, some patients may come through and, and Katy was so fortunate to have a strong support network, a strong family, and to be able to get rehabilitation services. There’s a couple of different options. If someone is so physically impaired, they may need to go to something like a skilled [00:26:00] nursing facility.
And then when we talk about rehabilitation, there’s a couple of different options there. Uh, for those who are strong enough to get home, you can do home with home health services, which could include, uh, home physical therapy. That’s pretty awesome, if that’s an option. Yeah. There’s also outpatient physical therapy, but I think if we sort of go back to the time of, uh, the hospital discharge.
One, it starts with education to patients and family members about, Hey, in some ways, an important realization is that what you’ve just been through, the sepsis, the acute infection, uh, that part may be improving or actually over meaning that the antibiotic prescription may. Have been completed by the time of hospital discharge.
But I think the new concept that’s super important for patients and families to know as well as clinicians when they’re discharging patients is [00:27:00] that while the infection may be treated right now, the reality is the body has just gone through a lot and there’s a lot of opportunity to restore health, to rehabilitate new, uh, new impairments, new functional limitations, but that requires.
Assessing them. So as hospital discharge approaches, ideally there’s a head to toe assessment of what new impairments might you have experienced? And then that begs the question in partnership with, uh, care management, well what services might you need? And I think that prior to discharge, which is both an exciting time, but it’s also a stressful time with a lot of change coming as you leave the hospital pressing pause and saying.
What would accelerate your recovery is super important. And there may be, uh, inpatient options like acute rehabilitation, uh, but there also may be outpatient options or even going home with home [00:28:00] health services, um, as a couple of different options.
Nicole Kupchik: Yeah, it’s a lot. I can’t even imagine if you didn’t have the financial resources to be able to support all of the care that’s needed.
Dr. Mark Mikkelsen: For sure. I, I think that, uh, it requires a, a lot of support. It also requires a lot of forethought and planning in terms of, at the time of hospital discharge. I’m talking about from the hospital team perspective. Thinking about number one, um, where are you gonna go? Number two, an important point is helping the patient schedule timely follow up.
Uh, sort of a general recommendation would be. Uh, to have follow up within seven days of a hospital discharge. Um, a couple of different investigators have sort of looked at seven days. 14 days. The reality is the sooner that someone is connected with an outpatient provider, uh, the better. And the reason would be [00:29:00] a, a couple.
One is that it’s important. For everyone to know that the risk for rehospitalization within 30 days, it’s pretty high after sepsis. Begs the question, well, why are patients coming back to the hospital and in general, uh, it is most frequently a story of a new or recurrent infection. That’s super important to know.
So when patients are going home, if they’re going, uh, home with loved ones or if they’re going to a post-acute care location, keeping an eye out for signs or symptoms. It may suggest that either there’s a recurrence or a new infection. I think that’s a super important message that, um, we can’t impress, uh, enough because many people still don’t realize this.
Um, and that is important is the idea that somewhere around 20 to 25% of patients will be [00:30:00] rehospitalized within 30 days in about seven out of 10 of those times. It’s gonna be, uh, due to a new or recurrent infection. There are certainly other explanations that could explain why someone would need to come back to the hospital exacerbation of a chronic condition.
That’s one key example, but keeping an eye on oneself and and sharing with other people if you’re not feeling well in those early days, super important. It’s also the reason to tie it back. For why it’s super important to see someone see your primary care provider within seven days. So you see them, you talk through what were you discharged on medication wise, and you also, uh, make sure that that outpatient provider understands what you’ve just been through.
They would then be able to also take stock of what might be new in your life from a health perspective, and then stay in touch, meaning [00:31:00] that. Within that first week, it’s probably just, I’m trying to get back on track. Um, I’m. Clearly, almost all patients are gonna be physically wiped out. Um, and the degree of their impairment may will differ from one patient to another.
But let, let’s say 21 days later, all of a sudden it’s like, Hey, I have a new fever. Then the ability to get back into that clinic as soon as possible to be assessed, um, is super important.
Nicole Kupchik: Yeah, absolutely. Can you talk a little bit about, I heard there’s a new ICD 10 code for sepsis aftercare. Can you talk a little bit about that?
Dr. Mark Mikkelsen: Oh, for sure. Um, so, uh, thanks to many, but specifically, uh, Dr. Kathy Bowles, who had a bold idea that recognized that when we look at patients, for example. Or specifically who go home with home health. Um, she had asked home health agencies across the United States, how visible is a patient who has had sepsis?
How clear is it [00:32:00] to you as a patient who had left the hospital, gone to post-acute care, like home health? Um, and it was startling how frequently, uh. Home health or other post-acute care services, they just didn’t realize that a patient had had sepsis. And so to raise awareness of the idea that sepsis. In sepsis aftercare is both incredibly important.
Um, the idea was proposed to the ICD 10 committee to create a sepsis aftercare code similar to stroke aftercare codes that exist to sort of both raise awareness and also make it clear to both hospital providers as well as outpatient providers. Sepsis doesn’t end at the time of a hospital discharge.
That aftercare is required, and by making that visible, we have the opportunity to improve care and care coordination, [00:33:00] uh, for sepsis survivors.
Nicole Kupchik: Yeah, I think it was de definitely needed. In this patient population, so
Dr. Mark Mikkelsen: for sure.
Nicole Kupchik: Yeah, it’s exciting that, that there is a movement toward that. Now I wanna switch gears just a little bit and talk about antimicrobial resistance.
So let’s talk about the most, one of the most complicated patients we may have, one that does have antimicrobial resistance. So in the hospital we often use procalcitonin. It’s kind of a. To help us guide antibiotic stewardship, but what do you do in that patient who has antimicrobial resistance and gets discharged?
How do we monitor how long they stay on antibiotics or what does that look like?
Dr. Mark Mikkelsen: Um, that’s another great question. So I. If we think about it in the hospital environment, it depends what the infection was. And um, if the patient, for example, is cared for on the hospital floor in an ICU, the team in general is gonna say, okay, for this specific infection, what’s the guidelines or guidance for how long we should [00:34:00] treat?
In general, you would mentioned procalcitonin. I’ll acknowledge that What we’re learning is that we likely or often. Prolong the duration of antibiotics. There’s a sweet spot. The reality is we don’t want it too little. We don’t want it too late. But recent studies over about the past 10 years have highlighted that we can safely use something like procalcitonin in the inpatient environment.
And when we track it, either daily or other studies have said, repeat it in five days. When that number has decreased substantially, it suggests it is safe to discontinue antibiotics. So if I fast forward to a patient who is about to be discharged, most of the patients by that point will have completed their antibiotic course.
I think if there’s any question, then I would encourage folks. Have your infectious disease consultation team see it so that we make sure that we’re not too little, but we’re also importantly, [00:35:00] not too much. So you had brought up the concept of antimicrobial resistance. So there’s safely two different sides to that.
One would be making sure that we treat the infection. So if it’s. If it’s a resistant organism, then through cultures, the importance of obtaining cultures and knowing what organism it is that we’re treating. Super, super important and tailoring the antibiotics to make sure that it’s treating you. However, it’s also important to think about not extending or prolonging antibiotic administration, which downstream, if you continue, continue, continue.
When you no longer need antibiotics, you can increase the likelihood. In the future. That patient might be exposed to a a, an A resistant organism. So I think both are super important and I think the idea of, um, making sure that the antibiotic course is completed as prescribed, um, but just [00:36:00] being mindful about the right duration.
Um, at least for now, I would say it’s probably. Uh, an important message and then I’ll sort of tie it in, uh, to the idea of like when patients, uh, are rehospitalized for infection, um, the, the majority of the time it’s not a resistant organism. That’s important to know. It’s often, uh, a situation where a patient, maybe they had pneumonia the first time, you can’t have recurrence of that pneumonia, but about the other half of the time, it’s a situation where if you.
We’re hospitalized initially for something like pneumonia, you may develop subsequently a urinary tract infection, just to give people a sense of like what might they or their loved ones experience and what should they be looking for. And I would say that’s the reason why any new signer symptom that health is worse or different or concerning.
Be aware of [00:37:00] that and then seek, uh, medical attention if it’s subtle through your outpatient provider. Um, and then if it’s not so subtle, then seeking medical attention in a more timely fashion. And that sometimes requires going to urgent care or an emergency department. But if. Patients and families are empowered to be aware of looking out for those signs and symptoms.
That’s a good thing, meaning many patients are fearful of a recurrent infection and in some ways if they’re aware of the knowledge that they should be looking out for it, it is possible. Then they can actually identify it earlier so that it doesn’t become so severe again.
Nicole Kupchik: Yeah. What does the handoff look like from, let’s say, an inpatient provider to the provider who’s gonna follow up after discharge?
Like, what does that look like? Is it just a note in the patient’s chart? Or like, what’s been your experience?
Dr. Mark Mikkelsen: That’s, uh, another great question. So in general. Through the electronic health [00:38:00] record, we’re still sort of dependent on discharge paperwork, and so I think one key message is calling it what it is.
Often at the time of discharge, you won’t see the term sepsis on it. That has. Changed in a positive way from an awareness perspective over the past decade, so that if you look back in time, you may say the patient was clearly septic. Maybe they even had septic shock in an ICU, but by the time they were discharged, it said that they had a pneumonia.
Well, more specific ideal language in a current discharge summary would say this patient presented with sepsis. Their hospitalization included care for septic shock in an intensive care unit. The, the, um, the reason for their sepsis was whatever it is, most commonly it’s a pneumonia, but it could be a urinary tract infection, could be a gastrointestinal infection, could be a skin and soft tissue infection as sort of the [00:39:00] big four that often, um, explain.
Uh, sepsis and so being clear at the time of discharge summary, yes, the patient had sepsis, especially to sort of tie it back into the sepsis aftercare code. In some ways it requires, uh, recognition that this was sepsis and then tying it into say that sepsis aftercare may be needed for. Post sepsis syndrome, which maybe just briefly, I’ll summarize as, um, it acknowledges or takes into consideration both physical as well as, uh, mental health issues and cognitive issues that can occur.
And you had. You had mentioned, um, in Katy telling her story, both in terms of the confusion that occurred at the time of I’m starting to get sicker and sicker from this bacterial infection that began in my finger. Um, as well as as recovering from sepsis. It’s [00:40:00] super common for patients to have fuzzy thinking, to have some issues with memory, and I think that.
Sort of de-stigmatizing that and saying that’s pretty common for patients to feel that for days or weeks. And share that with both your family. Share that with your, uh, providers so that they’re aware of that. Because it impacts things like, Hey, are you taking your medications? And do you need any help in terms of AIDS for a period of time?
Now, while it may continue, um, I also think that Katy brought up a couple of, uh, super important points, which is that, you know, recovery is measured in days, weeks, months, and maybe even years, and life can change for the better. Over time, but, but it begins with, uh, both acknowledging, being honest about what you’re experiencing physically or mentally, and then working to recover and to rehabilitate those identified issues [00:41:00] that have occurred after someone has sepsis.
Nicole Kupchik: It is definitely complex. All right, so just to wrap up, if you could give some absolute key actionable takeaways for healthcare providers or students who might be listening in and things that they can consider implementing within their own clinical practice, what would you recommend in regard to transitions of care?
Dr. Mark Mikkelsen: Awesome. Okay. Um, so first I would start with, uh, does your hospital or health system have dedicated explicit education for patients who are surviving sepsis? Um, and if the answer is yes, that’s awesome. Continue to use it. Make sure that all patients who are hospitalized with sepsis and their family members get that information.
And if you don’t, then I would start there. Make sure that you have education that outlines that impairments or post sepsis syndrome is relatively common after sepsis, and that it [00:42:00] makes it clear to people that being physically weaker. Is super common after sepsis, having issues with thinking. Some other patients may have issues with depression or feeling of sadness afterwards.
They may have, if, especially if they were in an ICU, they may be at risk for post-traumatic stress. Reliving those experiences. So being clear about medical setbacks, rehospitalizations, that’s super important. So step one is gonna be education. Step two I would say is gonna be aligning the patient’s needs with the services that are available.
So that’s a connection. Through care management. Thinking about, hey, what post-acute care services would most effectively meet this patient’s needs? Again, not too little, not too much, but most patients do need something and, uh, teeing that up at the time of discharge. And then I would say the third most important thing is gonna be that timely follow up.
Ideally it’s within seven days so that they have a connection with their [00:43:00] provider. That provider then knows the patient was just hospitalized with sepsis. And then over time, I actually think patients needs, their impairments may require, um, uh, additional resources, maybe more rehabilitation, but it’s sort of one step at a time.
And I would start with those three things.
Nicole Kupchik: I think that’s some really good advice. Well, I wanna thank you for joining us today. I think you’ve given a really a lot of amazing advice to other healthcare providers and those who are training right now just to kind of figure out this very difficult, very challenging, uh, time in a patient’s life when they’re transitioning from a hospital to discharge.
So again, just thank you so much.
Dr. Mark Mikkelsen: Nicole, thank you for, um, both inviting me for inviting Katy and for raising awareness of what, um, so many people and their families are experiencing as they, um, experience sepsis. So thank you for the advocacy.[00:44:00]
Nicole Kupchik: I wanna say a huge thank you to both Katy and Dr. Mikkelsen. I think just reflecting on what both had to say, we realized how absolutely complex sepsis can be. But Katy and Endured is unimaginable, but yet she transitions from surviving to thriving. She, it took a lot of resources to get her to that point, and I really appreciated Dr.
Mikkelsen’s work in advocating with multiple providers to really work with CMS to get an ICD 10 code that can. Appropriates resources to patients who have been discharged. And I think what we can glean from a lot of what we heard today and in the podcast episode is that it’s complex and patients can easily fall through the [00:45:00] cracks.
So I just wanna say thank you again for joining me on today’s episode of the Sepsis Spectrum. If you like the show, we wanna hear about it. Please leave a review wherever you’re enjoying this podcast. It helps a ton. You can also reach me in our awesome team@infoatsepsis.org or visit sepsis podcast.org to share any stories of your own questions, concerns, episode ideas.
Our fun medical puns. To learn more about Sepsis Alliance, visit sepsis.org. The sepsis spectrum is brought to you by Sepsis Alliance. I’m your host, Nicole Kupchik. Our executive producers are Allison Strickland. Hannah sas, Claudia Orth and Alex Colvin. Our producers are Aaron Corny, Rob Goldman as Shahnti Brooke, and me Nicole Kupchik.
Our post-production producer is Tim Scott. Our editor and engineer is Jason Portizo. Our music is by O Omar. Bens v. To learn [00:46:00] about sepsis alliance’s podcast disclaimer and compliance policies, you can visit sepsis podcast.org/disclaimers. Sepsis spectrum is a human content and sepsis alliance production.
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