Noopur Raje, MD, Shares Her Personal Story With COVID-19 and Its Impact in Oncology

Hello, I'm Noopur Raje. I am the director of the Multiple Myeloma Program at Massachusetts General Hospital in Boston. I'm a professor of medicine at Harvard Medical School.

I'm here today with Julia and talking to you in this pandemic about COVID-19. We're talking to you from a very personal perspective of how COVID-19 has impacted me, my family, specifically my husband, and wanted to share some of this with all of you to underscore the fact that this can be a very virulent disease. 

It needs to be taken very seriously. Until we can get a few things in place, some important insights on what we can do to prevent the continuing surge of this disease. I did share a very personal story on Twitter. Part of the reason to do that was there's so little in terms of knowledge base. 

We are all learning about this together. The more we share, the more we're going to learn, and the better we're going to be able to take care of each other. End of the day, we're going to be able to overcome this together, we're going to come out of this way stronger, but unless we know what to look for and what to anticipate, it's going to be incredibly hard for us to tackle this disease. 

As I pointed out earlier, it's now close to five weeks back when my husband spiked a fever. He had a fever. He knew from the get-go that this was different. He had a very high fever. He had myalgia. His body ached. Within a couple of days, he reached out to infectious disease experts at Mass General and got himself tested in a couple of days. 

He turned out to be COVID-19-positive. The first week, essentially, he was home. As soon as he spiked the fever, I self-quarantined with him. Early March this is, which is where COVID-19 had started becoming a more known entity. We started seeing it on the West Coast, and it was coming across all of the US as well.

Given that I do oncology, I sat a quarantine with him. In a way, I think that was a good thing. One is I prevented exposure to other people. More importantly, what I found was that, even in the first week, my husband did require a fair amount of care. He was fine, but he did have fevers of 102, 103, was very weak, lost about 14 pounds.

This whole notion of self-quarantining and taking care of yourself was something which we all were hearing about at the time. It seemed reasonable at the time, but as I was going through this whole process with my husband, I realized how incredibly difficult it can be from a patient standpoint also.

They do need help. They do need care. They need food, fluids, things like that, and they need somebody to monitor them. They're so sick oftentimes, that it becomes extremely hard for them to figure out whether or not they're going in the right direction or not. This was what prompted me to share this.

Given my background, given my expertise, I have taken care of critically ill patients. I know how it is to take care of them. Yet, I found it so challenging to follow my husband and know exactly when to ask for help, which is a reason for sharing, a reason to provide a resource to folks who otherwise don't have this experience and knowledge base.

Like I've said in my Twitter thread, the first week was fine. Despite him having lost weight, despite the high fevers, I said, "We're going to get over this." I was looking at his vitals, and they were sort of stable. I think it was day 10 when I made up my mind. He had started coughing the night before, and the cough was a very chesty cough. 

His breathing was still OK. He was feeling short of breath, but his respiratory rates were fine. I did call my colleagues at MGH and say, "Hey, I think this has gone on too long now." The chesty cough was what concerned me, worried me. I said, "He needs some form of imaging and some blood work so I know which way things are going.

I started out the day by telling them I would drive him to the hospital. They were ready, waiting. They called me saying, "Noopur, when are you're bringing Jag in?" I said, "He doesn't seem OK right now." It was on their prompting that I ended up calling 911.

Starting out at 8:00 in the morning, when I thought I could drive him, to 12 o'clock noontime, things had really gotten worse. Because I called 911, as opposed to a bed, which we were trying to arrange for him, we took him to the emergency room.

When he went to the emergency room, my sense was he would be in the hospital for a couple of days, home after that, after we'd look at a little bit of blood work, look at a little bit of imaging. That was not the case. When I saw his chest x-ray and his CAT scan, he had a white-out of both lungs. He was still breathing OK on his own. 

He's relatively young, very healthy otherwise. I do think that played into that. Given his imaging findings, they didn't find it comfortable moving him to a COVID floor. He ended up being in the medical intensive care unit. They took permission from him, consented him for intubation, etc., so intubation would have been a possibility should he have tired with the breathing.

He ended up staying in the hospital for about nine days after that, one day, close to 24 hours in the ICU, and then on the COVID floor. Now we are week three into his COVID infection, and he's still spiking fevers into week three.

There's a lot of stuff unknown about this disease. The point of sharing all of this was, one, at the end of week one, with self-quarantine, etc., if you're not getting better, ask for help. When in doubt, one needs to go out and ask for help. Your healthcare providers are here.

This whole notion of hospitals are too busy, too full, to not be able to take care of patients, we are doing everything we can. We turned our hospital around to able to take care of COVID-19 patients, so don't hesitate to reach out to your primary care providers or your healthcare providers.

There's so much unknown about this, and the disease can evolve extremely rapidly to the point where we're seeing a very high mortality even today with this. Through all of this, I had not been tested. I was tested the day I went to the hospital with him, and that was the day when he got hospitalized. That was day 10. My COVID test came back positive as well.

The other reason to share this was here I was, COVID-positive, but completely asymptomatic. Obviously, I've been exposed, but my immune system was able to deal with the virus. I'm still five weeks into this, completely asymptomatic, don't feel a thing.

The other piece which I wanted to focus on is if you're already taking care of somebody with COVID-19 at home with symptoms that you can manage, it is very likely that you're COVID-positive as well, but it's not necessary that you're going to have all of the symptoms. You may have no symptoms at all or very mild symptoms.

If you do, don't be anxious about taking care of your loved one or whoever you're quarantining with. I do think you should take a few precautions, though. Whenever I took care of my husband, it's always with a mask and with gloves. I took the usual precautions of using hand sanitizer. Do those things.

Part of this is this is a disease which is extremely isolating, extremely alienating. Don't be afraid. Two things. One is if you're already taking care of somebody, you're fine. You should be OK, but take the necessary precautions.

The other really important lesson here is you could be completely asymptomatic and COVID positive, and you could be the vector or you could be the carrier spreading this disease around. Even if you don't care about yourself, it's so, so, so important for you to care about who's around you and take the necessary precautions in terms of social distancing, stay at home, and cover up.

Mask up if you have to. That's the safest thing to do. I do think all of these things are going to be incredibly important until we can do testing in a more standardized way, until we can have testing in a more uniform manner, until we know how people have different responses in terms of their immune status, etc.

Those studies are happening as we speak, but we don't have the data. Until we have the data, we have to continue to socially distance. We have to continue to self-isolate. We have to continue to mask up. We really, really, really have to take this very seriously. Focus and listen to your medical experts. They're the ones who are going to give you the right guidance as we learn along the way.

It's developing very rapidly. Even at our hospital, we changed things on a day-to-day basis based on how much we learn. Also, do not under-appreciate the virulence of this because it can impact anybody. We have a lot of young people wherein this COVID-19 has affected folks.

The question is, "Is it a good idea to get this infection early on? Is this virus going to mutate? Is it going to mutate to becoming even more virulent? What is the response of specifically people like myself who's COVID-positive or my husband, who's had a serious infection?"

A lot of what we're hearing about is speculation. "We don't know," is the honest answer. Will it mutate? We have no idea. Should we be studying it? Absolutely. Should we be looking at people's immune status? For sure, and we're already doing those studies.

For example, I have donated blood looking at my immune cells. I don't know what the data is, but we are going to be having testing, which is currently in the process of being rolled out, antibody testing, serology testing, looking at antibody status to see whether you've been exposed already, to see whether or not you can mount an immune response.

In the future, what we're going to have to do is identify markers of who is it that will have serious illness. It's not the vast majority. The vast majority of people are going to have asymptomatic or mild symptoms. The vast majority of patients are going to get better.

There's a subset of patients who are going to have serious disease. That subset of patients, there's a lot of things that we can begin to think about identifying. One is, "Is it to do with the viral burden? Should we be looking at the viral load? Is there any easy way of looking at a viral load when we're using swabs?"

It's not a blood test that we're using right now. We're using nasal swabs, and it's a PCR-based test. Studying viral load may not be the easiest, but that would be step one.

Step two would be, "What is the immune status of a person?" Are there certain markers in the blood of people wherein we can identify, "You're at a higher risk of critical illness." Should these patients then be monitored more closely in a hospital environment as we begin to learn more about this disease?

I have never seen a bunch of people come together to do investigative work -- both looking at biomarkers, as well as looking at clinical studies -- open so, so quickly for patients with COVID-19, given the enormity of this problem. I am very, very hopeful that we're going to get answers to all of these questions.

It's going to take us a couple of months. Until we get those, we have to do the basics. The basics include isolation, contact tracing, and stay home and make sure you don't pass this along by simple measures such as masking up.

The question about reopening the world as we know it or going back to society as it were before is a real question. I think all of us are struggling with this. I do think it's not going to be the same as it was before all of this started. 

I do not think we can open up society the way it was until and unless we understand the prevalence of this, the incidence of this, until and unless we contact traced and gotten a sense of immunity. End of the day, I do think we need a good vaccination strategy and a good treatment strategy. Those are still at least several, several months away, if not a year away. 

Immunity, I think we'll be able to understand sooner. The first step to opening up society would be more uniform testing. We have to know who's positive, who's not positive, and how many are asymptomatic carriers. Those asymptomatic carriers, how safe are they to get out in the workplace?

I do think all of us want to get back to some kind of a normalcy, but the normalcy will have to be staged. It's going to have to happen in steps. It's not going to be, "X, Y, and Z date we're all going to open up and go back to life the way it was."

This is going to take us a year or a couple of years. I think all of what we're learning about this disease along the way is going to help us figure out how best to open up society slowly. It's going to be a slow process, though, but I'm very hopeful that we're going to get there.

We all feel we're one of the fortunates who have done well with this. My husband's recovering nicely. He's doing better and better every day. He still has a little bit of a cough and some shortness of breath. We are five and a half weeks into this, but I'm hopeful that he's going to have a full recovery. That is the hope.

We're really fortunate, and I cannot be more grateful for the outcome. I know that a lot of folks have not had this sort of an outcome, which again underscores the importance of this and the importance of sharing as to when to call for help, etc.

The other piece which I have been absolutely struck by is what does a post-COVID era look like? What does COVID-19 era look like for the healthcare system? We have, as oncology centers, trained up. We're doing ICU-level care. We've transformed our inpatient units, essentially oncology units, into COVID floors now with ventilatory support as well.

We all, as healthcare providers, have to train up very quickly. I cannot be more proud to be a part of my institution where we've been able to change things around so rapidly. The other thing which has happened which is so, so amazing and hopeful is we've come up with really innovative ways of interacting.

We are doing the Zoom call right now and interviewing, and I'm doing it from my home. We've been doing meetings with Zoom. We are probably more connected than we were before all of this happened. The one thing we're looking at is innovative ways of taking care of all oncology patients.

Healthcare doesn't stop in the COVID-19 era. Patients still fall sick. Patients still have cancer. I think we've come up with really good ways and tools of caring for patients by keeping their safety as a central piece out here. For example, with my clinic now, I'm doing a lot of virtual visits. I'm doing a lot of Zoom visits. We're getting labs done locally, reviewing them.

Care of patients continues to go on. The bottom line has to be it has to be a safe way of providing care to otherwise vulnerable patient populations.

Oncology care is obviously going to be transformed in the COVID era. There are certain things where the focus is going to be on home monitoring, home care, and we are actively working on transitioning some of these things to the home.

I think it's in the best interest of the patient if certain things like immunoglobulin therapy, etc., can be given at home. I do think we're going to re-look at what is safe and unsafe. End of the day, we're going to continue care, and we're going to provide the best care for our patients.

One other piece that I will mention, because we're seeing this more in our hospital now, we have a lot of cancer patients who are COVID-19 positive as well. What we have done, at least at our institution, is created an ambulatory environment for COVID-19-positive patients and COVID-19-negative patients.

It does require more resources, but we're already thinking about that because we do not want to give cross-exposure to patients, specifically oncology patients. These are things which have happened extremely rapidly. For folks to be able to come together to make this possible has been absolutely incredible.

End of the day, I'd like to leave folks with a message of tremendous hope, the way your healthcare providers have come together. Not just healthcare providers, all the support staff, all the essential staff in terms of bringing our materials and transfer folks that the hospital, the catering.

All of these folks have come together for essential services and have provided the services. We keep changing depending on what the need for the day is, so rapidly changing and interacting closely together.

With of this, I'm really hopeful. I do think we're going to be very thoughtful about the care we give and continue to give care to our patients in an innovative way going forward.