What Having Ebola Is Really Like

In part 2 of this exclusive video interview, MedPage Today’s editor-in-chief Jeremy Faust, MD, talks with Craig Spencer, MD, MPH, of Brown University in Providence, Rhode Island, about the 10-year anniversary of his treatment for Ebola at Bellevue Hospital in New York City.

You can watch part 1 of this interview here.

The following is a transcript of their remarks:

Faust: Can you tell us just about how you felt in those first few days and how sick you got?

Spencer: How did I feel? You know, there’s not really a good metric. I’ve said to people, imagine that you had a stomach bug and the flu together, and then multiply that by 10, and maybe that starts to make you kind of feel what you feel like when you get to your worst.

Maybe one way to describe it is that your fever gets so high that you take medication to bring it down, and it comes from 105 down to 101, and when your fever gets down to 101, you feel like you’re on vacation because it feels so much better than 105.

I don’t think there’s really a good way to describe it, but it’s kind of the worst that you felt with all of the things you’ve ever felt multiplied by a factor of 10. That probably does a decent job.

It’s not like that the whole time. There are different waves of symptoms that people have. You may go from like intense fatigue to a really bad, bad sore throat, a headache, difficulty breathing, vomiting, diarrhea, muscle aches. It’s kind of a whole host of symptoms that maybe will crash in and then fade away and then progress in different steps throughout the first week to 10 days of your illness.

And if you can make it through that, the likelihood that you’re going to survive gets higher every day.

Faust: And I’m just curious how your days were, because sometimes you’re so sick that you just can lie in bed all day and time goes by and there’s no need for a book or a television or a conversation. You’re just there and you’re just alive and you’re existing. And there’s other times when you don’t feel great, but you’d say, “Hey, I’d like an iPad,” or something. What were your days like?

Spencer: Looking back, I don’t know how I spent them other than sending messages or speaking to close family. I didn’t speak to reporters, even though many tried to contact me. It’s not like I got to sleep in and hang out and eat potato chips and sit on the couch and watch TV, but I was able to focus on some things that needed to be done. So logistic things, thinking about my friends that were under quarantine, thinking about my own partner, thinking about my family, and also trying to get up and exercise, do things, move around, do yoga, to just kind of move my body.

They had got a Nordic track, like a stationary bike, that my physician demanded I get on for at least 15 minutes every day. And there were some days when I just had zero desire to do that, but she forced me to do so. I guess she didn’t want me to get any clots in my legs or whatever it may be.

So I think that that was really helpful. But I certainly didn’t catch up on the Lord of the Rings trilogy or anything like that. It was mostly, basically that — just trying to survive.

Faust: And this was the early years of — well, not that early — of iPhones and iPads and that kind of stuff 10 years ago in 2014. Did you take notes, records, even voice memos? Do you have a record of your feelings and thoughts at that time?

Spencer: I do. It was kind of also the beginning of the cloud, and so I was able to take some pictures and have some conversations and try to save them. That wasn’t my primary focus, but I do recall in the aftermath and then years later coming across some of those messages and photos.

Because when I left the treatment center, nothing could come with me. So that included my glasses, that included my phone, anything that I went in there with stayed in there and then ultimately got incinerated. And so [when] I left I didn’t have a phone, didn’t know how to upload my things to the cloud and whatnot. So only some of the things came across.

But, I don’t know, maybe it’s good that I don’t have too deep or profound a memoir of those days. I don’t know. I don’t know whether that’s a blessing or not.

Faust: And in terms of how sick you got, there’s feeling crappy and laid out and spending your days in bed and as you said, not catching up on the latest streaming show. But then there’s also what you and I would call being really sick, which is that your life is in danger, which is that your blood work or your vital signs or your imaging show objective evidence that you are a person whose life is in danger.

Can you just tell us a little bit of how sick you really got in terms of whatever marker it might be? Did you have bleeding, were you anemic, hyponatremia, low sodium, those kinds of things. How bad did things get for you?

Spencer: You know, it’s hard because I know how bad they got for other people. So it seems almost hard complaining about it.

So for most folks, the big thing is that your platelet numbers, the things that help your blood clot, can go really, really low. And mine got really low. So you need to think about a couple complications of that. One, you can just start bleeding, which people do. But also because if you want to do procedures like put in a central line or other things where you can continue to monitor vital signs and other really important things, then those things become a lot riskier to do. Because if your platelets are very low, you can cause bleeding, which can cause complications.

So very early on, my providers and myself, we chatted through and said, “OK, let’s put in a central line now before things get any worse.” And I’m glad that we did. They were able to draw blood from one spot. It was a lot more convenient, and we could do it in a way that wasn’t more dangerous, as it would’ve been a couple days later.

Liver enzymes go up and so it looks like you have a shock to your liver — because you do. Anemia, your blood levels will go down. You’ll have a whole host of aberrations in simple things like your electrolytes, your sodium, and your potassium. Mine were all over the place. I appreciated the fact that every day we’d chat about it and, “OK, things are getting a little bit worse today. OK, let’s hope they plateau out soon.”

But I remember Laura Evans, a doctor that was primarily taking care of me most days, one day came in, sat on my bed and said, “OK, your liver enzymes look like this, this looks like this, this looks like this.” And said, “You know, your VDRL (venereal disease research laboratory) is positive.” And I was listening and it took me a few seconds. I looked at her and I said, “I’m sorry, what?” And she just smiled. The VDRL is basically — she was trying to joke and tell me that I had syphilis in addition to all of these things.

So it took me a second to realize that she was joking and what it actually meant, but I kind of appreciated that it was her way of saying, “Yeah, I know that this sucks, but let me see if I can try to lighten the mood a little bit.” So it was funny.

Faust: The coin flip. You casually said, “Oh, it’s a coin flip if I live or die,” which is not a great set of odds for anything. You were obviously concerned about other people, and that’s who you are, Craig. But at some point you had to be thinking, “Oh my gosh, I might not make it.”

Were there times when you thought — I’m not gonna make it — or was it always like, “Well, it’s 50/50, but I’m here. I’m at Bellevue, I’m getting great care. It’s probably 80/20”? Or were there times where it’s like, “Oh, this is getting worse. I’m not going to make it.”

Spencer: I can honestly say, and I’ve thought about this a lot and been asked about this a couple times, there was no point in my illness where I thought, “All right, you’re not going to make it. This one lab test or this finding or whatever just portends a negative outcome for you, and what are you going to do about it?” I just don’t recall thinking about that.

Faust: Do you remember a moment when you thought, “OK, I’m going to make it, I’m going to be OK”? And if so, did that come before or after any experimental treatments that you received?

Spencer: I received a bunch of experimental treatments that did absolutely nothing for me, and probably only made me worse, if anything. I got convalescent plasma, which I’ve spoken about and written about. I don’t think that it helped me. I don’t know that it hurt me, although after I got that I needed oxygen for a day or two, so I don’t know.

Was there a day where I’m like, “Oh, I got this”? I think once things plateaued and my numbers weren’t getting any worse, that was certainly reassuring. I knew that even for how bad I felt and looked, I didn’t feel probably as bad or look as bad as most of the patients that I saw in Guinea. That was remarkably helpful.

And I think there was a point at which I was offered one of these medications you might remember from that time, ZMapp and ZMAb, these kinds of hard-to-get medications that were unproven but seemed to be the best option and the best chance of help. I remember I was offered one of these medications at a point after I’d already tipped over into the I’m-likely-to-survive phase, and ultimately denied taking that medication, knowing that if I didn’t take it, probably it would be helpful for somebody else somewhere earlier on in their course.

Faust: Let’s talk a little bit about the people who took care of you. I hear rumors that at some point you felt well enough to get some pretty good Korean food in there. Tell me about the nurses and what they were bringing you.

Spencer: What was really cool about the nursing staff and seeing them just a few days ago at this event at Bellevue is just how reflective of the U.S. it was in that it was just really hard working, amazing, and almost exclusively immigrants. It was just really, really, really cool to see people from all over the world, from East Africa, from Haiti, from Korea, that had moved to New York, had worked as incredible nurses in the [intensive care unit], and then had stepped up to take care of me and other patients.

In addition to being amazing nurses, many of them were amazing cooks. So one of the Haitian nurses brought me homemade Haitian black rice one day, which was amazing. June, the Korean nurse, brought me in some homemade bibimbap one day, which I absolutely love. It took me a while to get my appetite back, but if there was anything that was going to do it, it was absolutely the stuff that they were bringing in, for sure.

Faust: That’s great. Let’s talk a little bit about future outbreaks. People hear the call, they go, and they want to help. When they come back, how should we, in this year, deal with that? What kind of testing, what quarantining or isolation — what’s the way that people should come back from, say, a Marburg outbreak that’s looking to be successfully dealt with in Rwanda right now? If anyone was over there, how would you recommend we deal with that?

Spencer: I mean, we’ve learned a lot in the past decade, but a lot of what we knew a decade ago still applies, right?

So we have systems in place where people will be on lists, they’ll be followed by the city, the CDC, and the City of New York and the Department of Health will be aware and will be able to follow folks like this. It’s fit specifically for people that have worked in treatment scenarios, for example, not had high risk exposures like a needle stick, etc., but kind of the normal exposure. Then we know what works. We know that routine monitoring, taking your temperature twice a day, have that contact tracing, have that connection with local health authorities, and then reporting your symptoms as they develop and working through these algorithms, through this triage with this time-proven process for when you actually need to seek any type of higher care.

People say, “OK, well why don’t we just quarantine everybody that comes back just to be careful?” The problem is that one, it doesn’t help. Two, it might hurt. And it might hurt because it makes it a lot harder for people to be able to respond. If you know that you’re going to go somewhere for 6 weeks and then you’re going to come back for 3 weeks and have to sit in a hotel room or in a hospital bed or whatever it may be, out of an abundance of caution, that means that that many fewer people are going to be able to respond.

We need people to respond to these outbreaks. We need people. When I talk about this… in Guinea, Liberia, and Sierra Leone where I was working as a physician, they had almost as many physicians in those three countries combined as the one single hospital where I was treated for Ebola in New York City, right? So if we want to contain these things and keep ourselves safe, we need to respond to them at their source quickly. That’s often going to need people that are willing to donate their time and maybe put a little bit of their safety on the line.

But we know that we can manage their return in a way that is both safe and non-stigmatizing, but also supportive in a way that gets other providers to be able to respond.

Faust: In light of what you just said, why do you think Ebola has never spread outside of a few hotspots?

Spencer: Because it’s pretty hard to transmit, right? Everyone just thinks that it’s like COVID or that it’s this highly contagious virus. It’s not, it actually doesn’t do a good job of spreading. It tends to kill a lot of the people that it infects and maybe that helps spread as part of funerals, etc., in healthcare settings. But with pretty basic preventions, you can often slow down or completely stop the spread. And we’ve learned a lot about that.

That’s the important thing, right? In the United States, when we have universal precautions in hospitals, even if we’re not wearing personal protective equipment, you’re likely not going to have massive outbreaks. Maybe you’ll have some you’ll recognize and you’ll put in place other protocols.

But in a lot of other places around the world, even some of those basic things that we think of — running water to wash your hands, an adequate supply of gloves — may be in short supply. That makes it a lot harder for them, especially in healthcare facilities, to stop this spread.

Faust: And what’s your take on the new-ish vaccines?

Spencer: So we have vaccines for Ebola, which are absolutely fantastic and super helpful in outbreaks when we can use them as part of a ring vaccination strategy — to identify people who got sick, find their contacts, and then vaccinate them as quickly as possible with the hope of preventing them from developing Ebola, which has been very effective. Those vaccines are great. Thankfully, there’s a stockpile of them that sits with the World Health Organization and countries can request them pretty quickly once there’s an outbreak.

There are also treatments. There are a couple FDA-approved treatments for Ebola, these monoclonal antibodies, which people may know about from COVID. Basically, these are just ways to lower mortality and to provide some type of treatment for a disease that can have fatality of 40%, 50%, 60%, if not higher depending on the circumstances of care. These treatments are great.

The problem is that since they’ve been approved, there have been five Ebola outbreaks, and only a third of all patients that have been diagnosed with Ebola since then have actually received these treatments. That’s because even if they’re really good, they’re not always accessible, especially to the people in the places that they need them.

Faust: Craig, are you immune to Ebola? Do you know what your antibody status is? Do you know what the possibility is that you could have Ebola reactivate? Tell us about that.

Spencer: I don’t want to find out. But what we do know is that we understand there’s long-term protection. If you measure my Ebola titers now, they’ll be really high. We assume that that means that I can’t get infected again with that single strain of Ebola — of which there are multiple strains — so Ebola Zaire.

There’s also Ebola Sudan, which caused outbreaks 2 years ago. We don’t know what protection against one means against the others, but I don’t necessarily want to find out.

In terms of reactivation, we know that there was an outbreak a couple years ago in Guinea that was linked back to a survivor who had this recrudescence, this virus that had been dormant in their body that kind of came back alive and was transmitted to another person and caused an outbreak.

We’ve also had a couple cases where people have had meningitis from virus that was long thought to be gone that happened to just be hiding away somewhere in someone’s central nervous system, for example. What do we know about this as a larger scale phenomenon? We know that it’s extremely rare. There have only been really like a handful of known cases. We don’t know how prevalent it is.

Does it mean that, for me, I need to continue to be worried about the possibility that Ebola will someday kind of re-erupt? I don’t think so. It doesn’t seem to be the case. But I tend to be a little more thoughtful and careful in that I have a family member that needs an organ transplant and I’ve taken myself off the short-list for that because, even if there’s a one-in-a-million possibility, I don’t want to tempt that one-in-a-million possibility.

So this is still an area in which we’ve learned a lot over the past decade, but for which we still have a lot of questions that remain unanswered.