Computer generated transcript

Warning!
The following transcript was generated automatically from the content and has not been checked or corrected manually.

First of all, thank you so much for inviting me today, I am so impressed with your organization, and I hope you don't mind that I'm going to use you as a model for other people to start programs like this. This is just beautiful. I just love what you're doing. I've done some traveling globally and um I find the same issues when I've traveled. When I talk about, I have prosthetic legs, so people notice you know and and they'll kind of approach me and talk to me about what happened and it's the same in the United States as it is everywhere, people don't know enough about sepsis and I even um come upon medical students who say that when they hear about it in college, they or in you know you know when they're going to medical school, it's just a quick little mention in part of what they study. It's not a big part of their programming, so um that's alarming to me um and I'm sure it is to a lot of people, so it's just it is, it's even more of a crisis globally than it is in the United States, where I live so just a quick introduction. You you mentioned that I had sepsis 4.5 years ago and I did not recognize the symptoms, So I have made it my mission to share with as many people as I can so that they understand the signs and symptoms so that they can get the hospital earlier than I did I went and I was actually in septic shock. By the time I got there, my hands and feet were in pain and my um I was already suffering some really serious complications by the time that I even realized I was sick enough to call for help so that's something that we need to change, and I share my story. Um Through talks like this, I share my story with government. I share my story trying to change policy um and I share my story on social media, that's been my new platform doing a lot on social media even though I'm in my mid fifties, there's still a lot of people out there who are scrolling through. I've looked at my audience recently and they tend to be on the older side, um but it's great because I'm getting information out there and I know these people are going to talk with their kids and their grandkids and they're gonna say oh my gosh I heard about this lady and we need to be aware of sepsis and we need to know the signs and symptoms. So um it's working I'm seeing I'm seeing an impact from what I'm doing and I have to start with sepsis Alliance, I'm on the board of directors there, and they came to me the first year after um I had sepsis and um invited me onto the board because they were, they like the way that I shared my story with them just in conversation and they just said you know, we feel like your story is really meaningful and so many people experience what you do and you speak about it well and so we'd love to have you join the board and give us your thoughts and your insight, so I'm the first amputee on the board, which is really nice because I wear two hats. I'm a sepsis survivor, and that's really important, but I'm also an amputee and that's a really important thing and there's a lot of public policy that needs to change with both of them. There's a lot of things to recognize in the hospital and there's a lot of life changes, so I just wanted to show a picture. This is my family before and after sepsis and you can see here. I had daughters. This was my daughter's when they were in college, and this is our house in hawaii, where I got sick and then on the other side is the daughter who's next to me in the long dress with all of the hawaiian lays. We live in hawaii. She's wearing hawaiian lays because it was her her college graduation, and it was two years after I had sepsis and you can see there, I'm wearing prosthetic legs. Um It looks like I'm hiding my hands and I feel bad about that. I'm gonna quit hiding my hands, know, I'm doing the same thing in the other picture, but I'm proud of my hands, my hands were saved, and it was a miracle and I'm so grateful for all that I do have, so I don't I want to stop. I want to change that I don't want to hide my hands uh just kind of some prior stuff, so it was september 2018, when I got sick, my children were away at college. My older daughter was um had just graduated in may and I got sick in september right after summer. Um When my other daughter had gone back for her junior year of university, and um we were living in hajnal a, which is in hawaii. It's also in one of the smaller hawaiian islands, which is relevant because we don't have great medical care. It would be like being in a distant um kind of more referral community. Um If it was you know in a, in a on a continent instead of on an island, um I was super, focused on my health and I was trying to figure out what I could do with my life. I had been a stay at home, mom and I was looking for a purpose, which is ironic because this whole thing has led me to this in credible purpose that I just mentioned this is a picture that always touches me it's not a great photo, but I share it because it's the last photo that me and my kids had on our phones of all of us together before I got sick and you could tell it chokes me up, We were at Disneyland, the happiest place on earth, and we were just having fun being kids. I mean here, they are 21 20 or 22 20 and we were still you know here at the this little place that five year olds loved to go and we had a blast. It was amazing, I had just visited my older daughter and seen her new job where she had her first career. It was really exciting. She had studied real estate in college, and she was working for a commercial real estate company down in san diego in southern california and disneyland is right between them, just it's like an hour and a half from where each of them lived, so we met them. My younger daughter joined us from her college in Los angeles, and we um spent this amazing time together, so we had all had this time together, and then I went up and met and stayed um to see my younger daughter in los angeles, and um they noted that I did complain a couple of times that I was feeling kind of tired that I was just kind of, I just didn't have quite the energy. I always had, I spent some time with my daughter in college and then I hopped on a plane and flew away from some of the best hospitals in the world in los angeles and I flew to this little tiny hawaiian island, and um my husband was on a fishing trip at the time, so I was there alone and I was going to be alone for 1 to 2 weeks, depending on how long he decided to stay and I was kind of looking forward to that time, but I got off the plane and I noticed this but and again not a great picture, but I just want you to see at this point, it's just kind of pink, you can't see it's a little bit purplish so it's a little bit darker color, and it had a little bit of fluid coming out of it like just clear fluid, so it was it was it caught my attention. I just looked at that that's a little bit weird. I'm going home to be alone. Um I'm I always know this When I drive home, I drive an hour from the airport, but it's also an hour from the hospital, so I always know that it's this When we're when I'm home I'm a long ways away from medical help, so I tend to be more cautious. We had also had a huge flood in our area just before that. Um six months before our whole valley flooded and when our valley floods two rivers come together. If this was a flood that's never happened before. We had had so much rain in 72 hours that it was the most rain that had ever happened in the United States in one spot and We are Valley, is Sir, surrounded by mountains, the mountains, the water hit the mountains, and it came down off the mountains, and so we just had this. It was almost like a tsunami, but it came from the mountains. It was crazy, so my home had 1 ft of water in the, on the lower level and in hawaii, A lot of the houses are built with the, with the main floor upstairs, so my kitchen and bedrooms are mostly upstairs, and we have two bedrooms downstairs, so those two rooms flooded, and um you know when a river comes together, like that when any type of natural disaster septic tanks, our whole valley is is uses septic tanks instead of um plumbing. You know sewage systems with a county, so every single one of us has a tank in our yard that holds waste and then distributes it as clean water eventually, but when a flood happens it floods those tanks that have not been cleaned yet, so you can imagine that it's really really dirty water, so I had been being very safe and and trying to do everything to not be outside and not not come into contact with anything that was outside, but we were you know this like I said it's been six months prior, It's hard to not come into contact with that contamination when you've had something like that, so. Um This is just a reminder to that anytime there's a natural disaster, sepsis is going to happen. So I was six months later, which is a little bit odd, but I still think it may have been related. I went home that night, I went to bed early. I was kind of excited to be by myself. Oh wait, I missed one step and this is really common. Um I went to an emergency clinic on the way home and I went in and showed them the bump. They said yes, it looks kind of weird, so we're going to give you an antibiotic ointment and in case it's mersa, which is a staph resistant bacteria. Um we're going to give you one that will kill even that and so they gave me that and they took my vital signs. My heart rate was fine. My breathing rate was fine. My temperature was fine and my BP was fine. I did not have any symptoms of sepsis at this point in time other than this bump, so this was friday night. They did though give me antibiotics because I'm an hour from a hospital. They knew I lived there and they knew that I might need help over the weekend and so they said if it gets worse, start taking those. So as I mentioned, I went to bed and the last thing that i can really remember from the weekend because my memories fade. At this point is um I got up in the morning and I took a shower and I thought to my I was really tired the night before and I felt like I might be getting a little bit sick, but then I also can sometimes be a little bit of a hypochondriac, so I was, I thought maybe because of the suggestion that I had an infection, I thought maybe I'm just tired from my trip and and I when I travel I eat, I eat out at restaurants. I hadn't been eating well, so I thought maybe it's just the food. I've been eating its other reasons that I'm feeling like this, so, I'll just get a good night's sleep. I woke up in the morning, I felt fine. I hopped in the shower, took a shower, and then I started getting tired again. I thought you know what I don't have to do anything today, my husband's gone, my kids are gone. I'm gonna hop into bed. I'm gonna text some of my friends and I'm going to you know, watch a movie on my computer so that's the kind of the last thing that I remember doing is. I was sort of hanging out in bed, just relaxing after a long trip before wait before I get there. I need to finish with saturday sorry about that. Um on saturday, I texted my husband, he was in IDaho and idaho, there are some very remote rivers, so basically he was camping and he was fly fishing and um so he was out of touch this whole time. I was able to text him and he returned my text either early in the morning or in the afternoon. Um When he got back, so I had told him that I had this bump and then I was a little bit worried, in fact that that picture I showed you was the picture I sent to him and I said you know I'm sure it's nothing but I just want you to know since I'm home alone. I you know this thing is happening and I'm just going to make sure it's getting better and I'll let you know when it's better and then during the day. Um I don't remember this from this point forward, I don't really remember, but I texted him during the day and I said I just threw up I vomited, but but I think it was because I took one of the antibiotics on an empty stomach and that's what made me sick, so I was making excuses for symptoms that could have indicated that something bigger was wrong, I was ignoring them, so that was one of the first symptoms that I ignored and um I so I had sent him that text and then um that evening he texted me back and said hey do you have time to talk and I said you know what I'm really tired, so I'll just talk to you in the morning and um one of the things I also was doing because this is sort of what I understood what happened. I thought that if I was getting sick from this bump, I would have a fever, my fever would be elevated and so I kept taking my temperature all day. I remember that from the night before and I know I kept doing it and I never had a fever and in fact when I got to the hospital, I didn't have a fever but with sepsis, you don't need to have a fever. There are a few things that when you're so sick, your your temperature is actually a little bit low, and I wouldn't I didn't even know that was a thing so if my temperature had been a little bit low, I would have thought I hadn't left the thermometer in my mouth long enough, So the next morning, I woke up in the morning and um texted a friend and said I need help can you please come get me. I have never been so sick and um she she ended up having she. I was fortunate she had her phone by her bed she got my message it was like 6 30 it was still dark outside and it would, and that's really unusual. I wouldn't normally call someone at that time. I think that I probably felt sick earlier, but I waited until it was a time that would sort of be okay to call somebody because I felt weird, asking someone to take me to the hospital and I also didn't call an ambulance because I didn't want to start all my neighbors, So I was making these silly excuses for not doing something um so my friend rushed down to my house, and I I mentioned this thing because this is interesting. I hear a lot of people say this how, when they're when something is really when they're in an emergency situation. A lot of people you've heard it before, probably where they say it was almost like a voice, something woke me up or a voice said I had to do something and I feel like that's what happened for me. Um A voice woke me up and and the message I heard was I just sat up at in bed and just thought I have to tell them how to get into my house because my doors are locked and as I mentioned my bedrooms upstairs and so I grabbed my phone and I must have seen I'm just putting this together from what I know happened. I I must have seen that I texted my friend and so I texted her and said there's a code to get into the house and this is the code and then I fell back asleep. I I remember it happening, but I, but I even after that, I still slept, so she got let herself into my house, bound me in my bed. She had difficulty waking me up. I was lying almost naked on my bed, which was just weird, I mean to see me there. She she said when she saw me I looked dead and it scared her half to death and so she tried to wake me up. I kind of woke up, but I was really limp and I was had trouble sitting up and so she got me up. She put a t shirt on me. She grabbed a blanket and she helped me stand. And then when we stood, I said I can't stand there's something wrong with my feet and it turns out that in the middle of the night and possibly just before I called her, I must have woken up and either gone to the bathroom or thrown up again, and I have two steps up into my bathroom and so I ended up. I think what happened is either I stood up very quickly. I do know my BP was very low because I'm going to the hospital, so um I stood up and either I passed out and misstepped on the steps, and I broke my left foot and I sprained my right ankle that was that was clarified when I got to the hospital, but it either happened because it was dark or because I passed out. We're not sure I did fall also because I had a big scrape and bruise on my knee and so something had happened to me. I don't even remember that happening and I didn't get help when that happened, so that's just really scary, so I was already suffering mental decline, which is another very serious indication of sepsis. In fact, when mental decline happens, I always tell everybody. If you have any mental decline, get to the hospital you could be having a stroke. You could have something else going on, so that is an emergency situation, so fortunately my friend was coming and she got me she carried me into the car. She drove to the hospital. She called the hospital on the way because I started crying in the backseat saying my hands and feet are on fire how soon are we going to be there, I'm in so much pain and I was crying and she was terrified at this point. She realized this is not the flu. I have no idea what's happening, but my friend is incredibly sick, so the hospital met me with a gurney. They knew that something was wrong. I think that when she indicated that my hands and feet were on fire, they have all they may have already been thinking this might be sepsis, so they rushed out. They met her at the car, they got me onto the gurney and they took me inside my BP. I know that this is different globally. I don't know how you do all these numbers, but it was 50/30 and I don't know if it's the same everywhere, but that's ridiculously low. I should barely have been conscious at that point. Um I was not, I had very low urinary output. My oxygen levels were very low and at that point, my vital signs were starting to show indications. I was breathing heavily. My heart was beating quickly, but I still didn't have a fever, so I spent the day in the hospital and um I went you can see here. I have a cannula in my nose. Eventually how to mask pressurizing oxygen and um the hospital began except this protocol in the United States. If any hospital accepts money from our government funding, they have to have a protocol where if they have a patient come in and they have certain indications of sepsis, they have to draw blood test it, then they give a huge amount of fluids, so eventually I had 35 lbs of fluid in my body. I mean like my I normally wait 100 and 15 lbs, I weighed 100 and 45 like two days later, so they fill your body with fluid trying to get your your um BP up, and they also give you broad spectrum antibiotics until they can identify the pathogen. So with me, they never did identify the pathogen and I stayed on broad spectrum all the time, but if this little community hospital had not done that I would likely have died in the time that they were trying to get clarification of what was making me sick, I probably would have died and I've had many doctors tell me that so it's very important to treat people immediately once you suspect it because you can always take away antibiotics, and I and I we are big advocates at at sepsis Alliance about antimicrobial resistance. I know it's a huge problem worldwide, so I'm not at all advocating that everybody get antibiotics, I'm just saying when someone is as sick as I am for them to get antibiotics right away. If you take them away eight hours later, when you realize it might be something different, no harm done, but if you don't do that you may cause a death or a person may die. Um so we were trying to I'm on a small island, I'm at the biggest hospital when someone is as sick as I am they get transferred to the to honolulu, which is the capital of hawaii. I'm sure most people around the world have heard of honolulu, It has like a million people. There's more people in honolulu than there are in all of the other islands, So there's a very nice hospital there, and even on this every weekend, you know many months or a year over a year before Covid, there were no beds available because hospitals are designed at least in the United States to sort of, have enough for a normal high level of patient's, but when things go over that they run out of beds and so they did not have a bed for me fortunately the next morning, a bed was available, so on monday morning, I was um um I had um let's see monday morning. I was still very sick at this point. My family had been reached. My children were reached on sunday. They got a hold of other family members including my sister in law, who's a doctor. This is what this slide s. I. L. Is sister in law, and she's a medical doctor um in california, so um she immediately started consulting with my children and with the people who were with me and just making sure that they were asking the right questions and I always talk about the importance of any time someone is this sick. They should always have someone who knows them by their side because um it's important for them to advocate and say she's not acting normally. She doesn't normally complain about these things. It just helps a doctor get a clear picture, so I always encourage whatever possible that there'd be someone else there and um so I had many people with me including this doctor, my husband called me on the phone. I don't remember this, but he called me and he told me while I'm on the phone with you look at your doctor and tell him more in monensin, this doctor is your medical, it has permission to speak for you. If you are unable to speak for yourself, and at this point he knew that they were going to intubate me, they were going to put a tube down my throat and and with mechanical ventilation in order to stabilize me so that I could fly over to honolulu, and so we made sure that that was done that I clarify that with the doctor and in the United States, I think that there need to just be to people who hear a patient say that and then it could be legal for them to put it in my chart that she has permission, so we made sure that that happened before I was intubated because at that point, I didn't have anyone with me that was legally able to speak on my behalf, so they we my family made sure that we did that even with them not being there so um and they understood that both my daughters and my husband were also available and my sister in law, so all that was done before I was intubated. I actually signed the paperwork for the intubation, and this makes me sad sometimes because I realized that was potentially the last time I was going to be alive and speaking and um I had no idea that I just signed the paperwork because they told me I'd be stable if I did this and I just believed them and then it was true, I mean I did the right thing, but it's just it just kind of hurts my heart. Sometimes When I think about at this moment, I was signing a piece of paper saying I'm part of the the understanding is, I may not survive this you know, so um I signed it, and I was very successfully airlifted, but they had trouble with my BP through the whole flight, so when I got to the hospital, I was still not totally stable at that point, my husband had arrived amazingly cause he'd had since the day before that, he or no since yeah since sunday morning, so he for 24 hours have been driving out of IDaho um the opposite direction to salt lake city utah, where my brother lives, his where his brother lived who he was fishing with and my sister in law had arranged for him to fly out the next morning very early and then he flew um to Honolulu and met me there he got there about an hour before I did which was amazing, so he was able to meet me at that hospital, so I arrived at the hospital, I was extremely swollen. He didn't recognize me um This is a photo of me. Um Hopefully, I look better than that to all of you, to you would say you wouldn't recognize me but you can't see the amount of fluids. My neck and my face were one they just went into my chest. I just had so much fluid, so um the doctor told him I wasn't stable and he should sit outside and wait so when he came back a half hour later, he said listen your wife is very very sick and we're going to do everything that we can for her um. And um he asked him at that point, he said does she have a will, does she have a medical directive um can you get a hold of those documents so that we know what her wishes are and um also if she has family that should be here, you should call them and tell them to fly to be by her side, so he called both of my daughters immediately and said okay. They had wanted to come the day before and and everyone had been saying why don't you wait until we know more and um I actually did have several very good friends with me, so I was they knew I was in good hands, so at this point, when their father called, they were terrified because they knew. The implication was that I might not survive, so I spent five days in the ICU and um during that time, my husband and my children were there as well as one of my best friends and they stayed with me that whole time. Um They set up a facebook page so that they could share information with family and friends. This made it much easier because my husband and everyone were getting text messages from everybody, so they started with family and the closest friends and then that page over the week spread out to where eventually there were 700 people who were following my my journey, and I didn't even you know I was out the whole time but they were, they were praying for me. I was told at one point I had multiple um church is throughout the country, praying, so it was really amazing having this network of people who were on my side, praying and doing everything that they could to support my family and let them know that they were there for us. During that time, my hands and feet began turning purple and you can see my hands here. I did have a condition called d. I. C. Disseminated intravascular coagulation again because of translations. I'll just tell you what, I understand which is that the capillaries in my fingertips, my fingers and feet were bursting and bleeding internally. The platelets in my body were going out to stop the bleeding and so if I had not been in a hospital when that happened, I would have died because of my, I would have died from the bleeding, but I was in the hospital so they gave me transfusions of platelets. They kept putting more platelets in my body to keep going out to try and stop the bleeding that was happening and my hands and feet were turning more and more purple. All week, my lungs, kidneys, and liver were failing. Um They were terribly concerned, I was on full time kidney dialysis um I had as you know, I was had mechanical breathing and um my nose was turning purple and my cheeks were turning purple and my family was extremely afraid that I could have potential brain damage from this. They just didn't know what else might be happening. Um When I um they were able to see also that my fingertips turned black, so it became clear that they wouldn't be saved and they knew this and that the soles of my feet were also turning black, so it was not looking good for my hands and feet, and um by the time that I started to become more stable, the prayer switched from savings my life to praying for my hands and feet and I think that the people who were praying. I have prayed for someone in the same place, and I know that I didn't know what was happening because I didn't understand sepsis with when it happened from when I heard about somebody else, so they didn't know what was happening. They just knew that something had happened that was that made my hands and feet have problems um and at this point, my my husband begged the doctors and said please tell me what we can expect and they said you need to be prepared that she's not going to have her hands and feet if she survives and and they were terribly worried that we wouldn't be able to save any of them, so this is just a photo of kind of what things were looking like. I don't show this to everybody because you're in the medical profession here. It is this is what was happening. Um When I came back to life these hands that you see here. Um They extubated me. Um They took the tube out of my throat and let me breathe on my own. This was um the following saturday almost a week later um I saw these fingertips and I was, I could look at them immediately and I just didn't know what had happened, but I could tell that they were dead and I knew I was going to lose my fingertips and I was very confused. I had huge amounts of um drugs in my body, I've been asleep for a week. I was just in a horrible place and I had extreme icu delirium and I always like to talk about this because I feel like my family was not nearly prepared enough for what this was for me and then because they weren't prepared, they weren't able to explain to me very well what was happening. They kind of tried, but I was so not thinking clearly basically, I mean I probably still had swelling in my brain. I had all these chemicals going through my body. I've been sleeping for a week hearing things and so what it did is it created a lot of confusion and paranoia um When my husband would try, I tell my husband some who I would have nightmares and then I thought they were real and and I would try and explain to him that at one time, I told him someone took all the money out of our bank account and he said no honey you've just you've been sleeping you're nothing happened I promise and I didn't understand what he was saying and um it would have probably been more helpful if we had better understood that this was completely normal and can happen and in the videos I've shared on social media, a lot of people have said that happened to my dad or that happened to my mom and we didn't know what it was no one told us so that's something that's really important. I think that people understand is that somewhere in the process, I know that the doctors it's their job to doctors and nurses in the ICU it's their job to save my lives, but it's there there needs to be someone along the way that really communicates that this could last a while for me. It was eight days and by the end of that time he really thought I had brain damage, so it was very scary for me and for my family, um One of the things that they did really well is my after a week of this, they realized that all of the people who were staying with me were exhausted and they made sure that there was someone with me 24 hours a day, so either my husband or one of my daughters or my best friend was sleeping in my room at every single night and that way, if something was going on, they they knew at the moment what it was and they could they could say what they would want done or what I would want done and they could speak for me medically and they could also um actually later in the process. It came in handy because there were some treatments I was receiving that the nurses had to do and they didn't know exactly what to do so, whoever was with me would then explain what needed to be done and it's crazy to think that family members could make that big a difference, but they really can because there's I mean it's complicated taking care of patient and there's so many things that can happen and and like I say some of these things are new to nurses what they were doing for my hands was completely new to them and so to have someone there really made a difference. Um So the treatments I was receiving was nitroglycerin cream on my hands and feet um I think four times a day, three or four times a day and so um and like I said it was rotating staff and so there's always a different person doing that and they didn't know how much to put and where they should they just put it on the black part or should they put it on the, this hand here is it doesn't look quite as bad as they looked in the beginning. It was more purple and so the, and the answer was they put it all over my hand because they were trying to draw blood and get oxygen to that area. And then as soon as I was well enough, I went into hyperbaric chambers and those are the pressurized chambers that they used for divers, and but it's um uh they put pressurized oxygen in on my body. I go into the entire chamber, they lock it and then I even they put so much pressure that I even have to clear my nose like you do when you dive underwater and I'm just explaining it because I know it might have a different name where you are, they may not even be available, so because I'm on the ocean, We were really fortunate that this hospital had that not all hospitals globally will have this equipment available, but it it hyper oxygenated my blood and it helped my body heal better, and they were praying that it might help save my hands and feet um So we did this throughout a week and um unfortunately no let me start off with the first thing fortunately my hands were saved and if you look at those photos, I don't know if this is the correct can, but if you look at those photos, my the part that's missing is exactly the part that's black in the pictures, so everything that wasn't already but black got saved and this is that thumb so that thumb doesn't even have uh this thumb doesn't even have an injury where you see that black spot and that's where the initial sore was. I do have quite a scar there, but I can fully use it. I can fully use both my thumbs and my fingers and I function really well. Um Unfortunately, we were not able to save my feet, they just did not respond in the same way that my hands did, I apologize, got to click on that okay, um so I kind of have gone through this the dialysis. I'll just mention um this is my hands after they've really been mostly saved. The dialysis um was full time initially in the ICU and then near the end of my time in the ICU, it was just um like once a day or once, however, often it's done and so they just did it occasionally and then I did that for the first week and eventually um and I was worried I might be on dialysis for the rest of my life, so was my family, but eventually my kidneys got strong enough to work on their own and the dialysis was taken away because of the antibiotics. I was very sick and I was unable to eat. I didn't have an appetite, and I was losing a lot of weight. So at first, I weighed 100 and uh it was 100 and 45 lbs. I had 35 lbs of fluid, so I weighed like 100 and 45 lbs or something and and eventually um probably around this time, I weighed under 100 lbs, which is very small for me, and then, um eventually even later I would the lowest I got was about 90 lbs and that it would be anorexic or extremely malnourished for someone my size. I mentioned that we couldn't save the feet um and it was we were aware. I mean honestly, I think everyone, but me knew that I think that because my feet were black on the bottom and they kept getting more and more black throughout the week. My family and my doctors could see that and they knew what that was going to mean for me, but they did something very compassionate. They did not tell me this and and because the fact was they might be able to, so they didn't say we don't think we'll be able to save your feet, but we'll try instead. They said we're doing everything we can to save your feet, and I just held onto that hope it was very important for me. I was already dealing with so much with my hands and I could see how bad my feet were. I just couldn't, I wasn't ready, I couldn't admit that yet and so they let me come to terms with that. They made sure that there were that there was always someone with me 24 hours and so they started bringing my friends and family from the mainland where my family was from, they started bring them from washington state one at a time to help out in my bedroom and so I had and I looked at that and I thought I just had people visiting me, but what they really were is they were people helping take care of me and they had and they were taking here my family because at this point, my husband wasn't eating enough. He wasn't exercising my kids were tired. You know so they were there to for me and they were there for him and they were making sure that they were getting him food and making sure he was exercising and doing the things that he needed to keep his energy up, especially so that he you know that he could handle what was going on and then they were doing the same for me. They were trying to feed me. You know they would hand feed me and try and just get me to take bites of things and take sips of things and and that was really helpful you know a nurse can't be there all day to do this so to have someone there doing that for somebody can really make a difference. And in the beginning, I even forgot to mention this. In the very beginning, I had to clear my lungs and I wasn't my oxygen levels kept dropping, especially when I would sleep, so they would wake me up and make me do breathing exercises and then they brought the you know they have the little plastic things that you blow in or you suck in to try and strengthen your lungs. I wouldn't, I do did not want to do that. I was so tired and so weak and so sick. They would make me do it even they just say just do one or just do two and I was supposed to. They you know where the nurse brought it in and said you need to do 30 of these at a time. You know or whatever that whatever the rule was. I couldn't and I wouldn't have if I had been alone, but they would make me over the eight hours that they were there. They'd make sure I did it 30 times, but they they just make it kind of fun for me, just they just do one you know so that really was helpful. Um Eventually, I did admit it, and it was a really sad day for me that I don't need to go into too much, but I eventually told my husband, I know we can't save my feet and I know that I'm going to lose them and I know I need surgery, I couldn't say the word amputation, but I said, I know we need to have surgery, I don't want to do this um hyperbaric chamber anymore and he um he agreed and then at this point, I was transferred to a hospital in seattle. We made that decision and he let me make that decision that it was probably the best place for me to go seattle is in washington state on the mainland, and the hospital's see a lot more more like motorcycle accidents and things like that they do a lot more amputations than they do in hawaii, and there are a lot more people who could help me with prosthetics and help me with my healing process, so we flew to washington state and that's where I had my amputations. Um I'm gonna go ahead and skip this a little bit. Um I just want to say that you know, I friends and family got me through my recovery and um this picture is kind of funny cause, I'm actually missing a tooth because right before this happened, I had lost a tooth um and they were in the process of doing a bone graph so that I could have an implant put in, But here I am right after I had my hands amputated, you can see my color is not great. I'm gaining a little weight back. I still have my hair. I would eventually lose my hair from all of this, which is one of the symptoms of post sepsis syndrome that I'll talk about in a second but um I was able to um come back to full health and basically now I can do most of the things that I was able to do before. Um I want to talk just quickly. I'm kind of, I don't want to take too much more time, but I want to talk quickly about some of the symptoms of post sepsis syndrome because when someone gets as sick as I did um and this this also applies to people who are having um post Covid syndrome or people who had had long Covid or anyone who was intubated with Covid. They're going to have these same types of symptoms and these symptoms could last their whole life. So again, oftentimes, they leave the hospital, not understanding that what they've just been through could leave them with things that are going to continue in their lives and so oftentimes, these people leave the hospital thinking okay, I'm all better now once I gained my weight back and get strong enough, I'm just going to be fine and then when they have symptoms, they don't go to their doctor because they didn't understand that this is really part of that process and I think doctors and hospitals and the general public don't understand that this is part of the process, so it sepsis aligns. We actually have a letter online that they can print out and give to their doctor or they can print out and give to their employer explaining that even for someone who doesn't have amputations, they still might have extreme neuropathy, Their fingers and feet may not work well. They may have have any of these symptoms here, so the psychological symptoms like hallucinations or panic attacks, flashbacks. Certainly post traumatic stress syndrome is very common for someone who's gone through. This depression is very common. I'm still on an antidepressant and I see a psychologist regularly and I have done treatments for ptsd, post traumatic stress and um and it's really helped me a lot, but a lot of people don't understand that the reason they feel so bad afterwards there is because of what's happened to them and they don't get the help they need so other things, low self esteem, mood swings, memory loss, things like that and then on the physical side. Of course, amputations are obvious and those are visible to people, so someone like me gets more sympathy and empathy and people expect that I'm going to have a hard time, but they don't expect someone who looks healthy to have a hard time, but a lot of my symptoms aren't even because of my amputations like I say, I you know maybe, I'm depressed because of that, but also I'm depressed because of what I went through um but shortness of breath or difficulty doing things they could do before. Um A lot of times. They'll have swelling in their limbs, poor appetite, reduced organ function. You know rashes I can't sleep well. I still don't sleep well and um I think it's because of my invitation, I mean I go to bed every night. I have to take off my legs and that's the reminder you see me now. I look like I'm perfectly fine. I'm wearing two prosthetic legs and um every night I take them off and then I take off the sleeve that holds them on and I put it by my bed and I feel sorry for myself every single night, I try not to, but I can't help it, and I crawl into bed sad and then I lie there and I think about how my life has changed. When I've gone through a perfectly wonderful day not thinking about it. This is a moment of silence and I so I need help falling asleep. I've taken sleeping pills. I sometimes listen to a podcast or music something that will distract me so that I don't start worrying about what's going on with me and I mentioned I did lose my hair, so I just you know again my family. This was this was just two months after this happened to me, so this was our thanksgiving, which is in november, so two months after I got sick, I was already this healthy. You know, I didn't cook anything, but I was able to go to a table in a wheelchair. I had just had my fingers amputated in this picture. um in our house and um my children were taking care of me and it was it was you know my life. I could see that my life could be normal again and I'm just going to just quickly take you. This is me getting my first legs and um now I'm able to do you know so much more I can ride a bike. I can drive a car. I've traveled around the world. Um I started modeling which is funny, but I'm modeling as a disability model because I want to share awareness about um different body types you know and and this was a weird thing that happened just out of the blue. I took this picture from my website, and he just casually took this picture of me which looks a little. I don't normally hang out looking like that, but um yeah you know it looks a little bit more model like, and um he submitted it for a campaign that they had that he heard about at a modeling agency and said, I know this woman who's an amputee and if you're looking for an amputee, she might be a good fit and I got hired to do an ad for a, an electric bike company and I just saw a picture last week, I'm on the front of their building, my picture riding their bike and it's really cool. I mean so in credible things have happened for me and I want to inspire other amputees to do this. I want to inspire people with differences to do this type of thing so um I'm not gonna go too much. I've kind of already covered me so. Um Just a few you know facts for those who don't know one in five deaths worldwide is associated with sepsis. It's the leading fatal complication from Covid 19. There's you know estimates vary, but we'll say 50 million cases globally, 11 million deaths. Um They say that 1% of sepsis survivors are going to have amputations. So if you bring that number down, that's as many as 500,000 people who will have amputations worldwide and that's in the United States that 1% my guess is it's higher in other places especially the developing world. Um It's the biggest cost in us hospitals. I'm sure it's the biggest cost globally and so there's real necessity to do everything we can to change the outcomes of sepsis um and I'm just gonna end on the slide and leave it there and then open up to questions because I've taken enough of your time. Thank you so much for your presentation. I'll just bring it back to my thank you.