Victoria Mugo’s journey back to normalcy after sepsis and quadruple limb loss began with a Lego car.
It was her 38th birthday, but her first since becoming an amputee in the spring of 2019. Mugo’s son, also celebrating his birthday (his 4th), came into her bedroom with a Lego kit he’d received as one of his presents. “Mommy, will you help me build this?” he asked.
“I was having very bad neuropathy pain that day,” says Mugo, an immigrant from Kenya who now lives in the Denver suburbs. “I just wanted a moment to myself. So when he asked me to build that car, I thought: ‘How can I?’ My limbs were still very sensitive. But we just sat on the floor, and we did it. It was so painful, trying to snap those things in. Every time I did one, I thought: ‘Okay, just one more.’ And we built the whole thing.”
It’s an apt metaphor for how Mugo reconstructed her life: snapping one piece into place, then another, then another. Today, four years after losing both hands and both feet (and nearly her life), she’s back to parenting, running her business, and training for long-distance races (including her first marathon). Mugo also serves as a mentor, friend, and information resource for new amputees, particularly those who, like her, lost their limbs because of sepsis. She even co-founded a sepsis support group, one of the few in-person groups in the country, to build a sense of community among survivors.
Since September is Sepsis Awareness Month, it’s a perfect time to share Mugo’s story and shine a light on this poorly understood illness, which afflicts nearly 2 million Americans every year—twice the number of people who suffer heart attacks. An estimated 20,000 people a year require amputation because of sepsis. Like most people who experience a septic attack, Mugo didn’t realize the severity of her illness and therefore didn’t take action until she was on death’s doorstep. One objective of Sepsis Awareness Month is to remind everyone of the warning signs, which spell out the acronym TIME: Temperature, Infection, Mental decline, Extremely ill.
The following conversation has been edited for clarity and length. Learn more about Mugo on Instagram at @toriemugo; get more information about sepsis and Sepsis Awareness Month via the Sepsis Alliance. And read more about how sepsis contributes to limb loss in Amplitude‘s September 2021 edition.
What were the circumstances of your getting sick? And at what point did you become aware of how serious your illness was?
It actually happened very quickly. January 2019, around the sixth of January, I started not feeling well. I thought I had the flu, because flu season is always high around that time, so I assumed it was a flu. And I didn’t go to the hospital, because everybody that was going to hospital with the flu was being sent home—it’s a viral infection, so you pretty much have to wait it out.
The evening of the seventh, towards the eighth, every time I walked up the stairs, my chest felt very, very heavy. I was coughing a lot. I had a fever. So now I started getting worried, because I couldn’t breathe very well. The whole of that night I coughed so much, I couldn’t even sleep on the bed. I had to try to sleep sitting up. The next morning, on the ninth, I was coughing into a cup, and it was coming up black. So I said, “Whoa, this doesn’t look good. I need to go see a doctor.”
I went to the ER, and they checked my oxygen level, my heart rate, everything they do when you get into the ER. They told me my oxygen was at 50 percent, and I didn’t even know what that meant—I was actually happy that it was at 50 percent and not zero. So then they explained it to me: “You shouldn’t even be talking right now.” They took me for X-rays, and the infection was so bad the entire lung showed up white on the image. There was no sign of me taking in any oxygen.
Initially, when they were doing the regular bloodwork, they were just wearing scrubs. But when they came back with the X-ray results, they had on all this PPE (personal protective equipment). They told me I was very, very ill with pneumonia. I was kind of relieved to hear that, because I thought they would treat pneumonia with antibiotics, and I would be able to go home. Then they told me they couldn’t send me home. I was septic. My situation was so bad that they put me in a medically induced coma that same day and they put me on ECMO (extracorporeal membrane oxygenation), because my lungs were not taking in any oxygen. By midnight, my kidneys started to fail. Things were shutting down, and I was pretty much on life support.
They kept me in a coma for four weeks—a whole month in a coma, on ECMO and on a kidney machine. The ECMO circulation wasn’t going throughout my body; it was just supplying my vital organs, but my hands and my legs were compromised. So that’s how I ended up losing my limbs.
My gosh, four weeks is a long time. You must have had a very narrow window to survive.
A 2 percent chance is what the doctors were talking about. They asked my aunt to get in touch with my parents, so they could travel here from Kenya because they didn’t think I’d make it. Around the fourth week, they saw a little bubble in my lung X ray, the first sign that I was taking any oxygen at all. It took that long of a period before they saw any hope for my lung function. So then they decided to bring me up and see if I was still cognitive. At that point they weren’t sure about my brain function, because I had been out for a minute.
When you regained consciousness, how long did it take for you to understand what had happened?
I wasn’t able to talk because I had a tracheotemy. They didn’t take it out up until end of February. So I wasn’t able to talk for pretty much two months—almost the whole of January I was in a coma, and the whole of February I was on a trache. It was especially a challenge for my son, because I couldn’t talk to him. He hated seeing me that way. He was three years old, and we had never been separated at all. So it was very hard for him.
They had not done the amputations yet, I take it?
No, they couldn’t take me to surgery until they had taken the trache off. So my amputations didn’t happen until March. The minute I could finally talk again, I told my parents: “I am going to run again.” And my mom was like, “How about we just walk first?” But I said, “I will run. I don’t know how I’m going to do it. But I see myself up again, doing things again, being a mom again.”
What part did running play in your life before you got sick? Were you a competitive athlete, or more of a recreational runner?
I started running in high school. I used to do a lot of cross country because I like the longer races, not the short ones. I was captain of the basketball team in high school, too. And then when I came to the United States, I used to bike a lot, run any race that I could get into. I was all over the place with being an avid athlete.
So you had that as your goal. How did your rehab experience go and your transition back to resuming your life?
Well, rehab was a challenge because when I was in hospital, my insurance would not cover rehab. They said we can cover your hospital bills, but nothing after that.
Give me a break. Insurance is always part of every story, and it’s never a good part.
I was discharged in April, and because my rehab wasn’t covered, my family too care of me. They modified my living area, they got me a movable bed, they had the bathroom readjusted to suit my needs and everything to that effect. My mom stayed here the whole year, so I had someone with me all the time.
Unfortunately, I was still on dialysis at first, and the doctors were not very optimistic that they would ever resume functioning. And I just looked at them, because I’m a woman of faith, and I said: “Well, you don’t know my God. If you knew my God, you wouldn’t say anything like that.”
They were finally able to fit me for prosthetics in July. And my first reaction when I stood up on the prosthetics was like, “Okay, maybe I’m not gonna run again.” Because it hurt so bad! How can it be so painful? But I saw the smile on my dad’s face, and that was my joy. They have this railing where you walk back and forth, and I told myself I’m just gonna do one lap back and forth, just for my dad. I did the first lap, and my brain was reeling from pain, but I didn’t care.
Where did you and your family and friends get the information about what home modifications you would need, and how to make those modifications?
We had a really good case manager at Aurora Medical, where I was hospitalized. When they release you as an amputee, they make sure you’re going into a home that can support you, and the people who are going to support you know how to do it. So the last two weeks before they discharged me was like an education for my family: This is how her bathroom has to work; this is the wheelchair she will need; this is a shower chair. So we all got a little schooling before I got discharged.
Did you attend any amputee support groups before you started your own sepsis support group?
One of my very good friends is a nurse practitioner, and she told me about RSVP Clinic, which is part of Craig Hospital. They offer rehabilitation support every Sunday for new amputees who don’t have any kind of insurance. I got so much help from that hospital. They showed me how to use my prosthetics, how to take care of my limbs, things like that. If I needed new sleeves or other supplies, they cater to that.
But RSVP was just one day a month. What about the other days? I have another friend who built a railing in my family’s garage, so I could practice walking every day and teach myself how to walk. By the end of July I was already walking. I asked my mom to buy me some resistance bands so I could build my muscles back up. Every day, I used to do a little PT with my mom. And one day my dad heard me screaming in the garage, and he came running out and said, “What’s wrong, are you okay?” And I was screaming with joy, because I was walking without the railings.
I started the sepsis survivor group after the senior sepsis coordinator at Aurora Medical, Carolyn Golas, saw me while I was on my way to dialysis. She championed the idea of starting a support group for sepsis survivors in the Denver area. And she introduced me to Sepsis Alliance and told me about the Sepsis Walk [Denver Sepsis Challenge], which is a 5K they do every September. I did the Sepsis Walk, and then two weeks later my friends asked me to walk the last 5K of something called the Ragnar Race, which is a 100-mile relay that you do over 24 hours. So that’s how I began to get into myself again.
Did you find it helpful in your own recovery to work with other amputees as a support-group leader?
Well, we try to make it fun in our support group. We usually do dinners together. We have it at my house one time and then somebody else’s house the next time. If there are events going on, we do those together. One of my friends had a book launch and I was a speaker there, and the support group came out for that. We just try to enjoy each other, not just sitting and talking.
Did everyone who attends the sepsis support group lose a limb?
They have a range of different challenges. Some lost fingers or toes, or fingers and toes, or maybe they lost other parts. But some of the people didn’t lose anything, but they’re facing other health issues. Because unfortunately, sepsis doesn’t leave you. It stays with you one way or the other. And then there is the mental trauma of it. That is also a challenge. Some people have that, some don’t.
Earlier this year I had a woman from Boston reach out to me on TikTok, where I share a lot of my experiences. Her mother had come from Congo to visit her, and her mother got COVID and then she became septic. Her hands and legs were becoming necrotic, and the doctors said they were going to need to amputate, and she didn’t want to do that. So the daughter, her name is Jenny, we began talking every day. She had the medical power of attorney, and I told her: “You’re going to have to make some tough decisions.” And after about two weeks, I was able to explain to the whole family what needs to be done. Because otherwise they were going to lose her mom.
After the amputations the mother was very depressed, so they bought me a ticket to fly out to Boston so she could see me in person. When I walked into the hospital room and she saw me, some weight just fell off of her and she thought: I think I’ll be okay. So they are my family now. I talk to them every day, and the mom is doing very well. But I also remember, when I saw her in the hospital, for me it was reversed. I thought: This is how I looked four years ago. It was actually reminding me of what a big challenge it was for me.
When you’re advising this family in Boston, what reflections from your own experience do you think are most helpful to them?
Don’t make too big of a goal. Make small goals. Focus on one little goal today, and then tomorrow build up on that. And if tomorrow is a shit day, it’s a shit day. So what. Don’t try to deny your feelings, just try again the following day and maybe that will be a good day. You have to be patient with yourself, because becoming an amputee at an older age is not easy. I had my hands and legs for 39 years, and now I have to learn to do everything again? Every day will be a challenge.
If you have faith like me, that’s a big help. For me, it has been a cornerstone of my recovery. I cannot downplay that. When people ask me, “How do you do it?” I tell them my father in heaven takes care of a lot of things for me. I don’t have to do everything on my own. So for anybody who is going through this or has a family member going through it: It’s not going to be easy, but just make small goals every day and build off of them.