Inspiring Stories of Recovery
COVID-19 has touched every community, including ours, and we are still learning about the impact of COVID-19 on people with congenital heart disease.
Conquering CHD spoke with three members of the CHD community who contracted and conquered COVID-19 – a youth patient as shared by her mother, an adult patient/medical student, and a pediatric cardiologist. While their experiences with COVID-19 were difficult, their stories of recovery ultimately leave us with hope for the human spirit.
Conquering CHD: What is your connection to congenital heart disease?
Agata, Leah’s mom: Leah was born prematurely at 32 weeks and 5 days; we found out about her heart disease at my 20-week scan. She has DOVR (Double Outlet Right Ventricle) and chronic lung disease. She had a couple of surgeries last year to keep her alive – a PA (Pulmonary Artery) band and a procedure to create a VSD (Ventricular Septal Defect) to help blood flow between ventricles. She has yet to have her main surgery to repair her heart.
Rocky: I am an adult with CHD and a medical student who has worn various hats in the medical sector – working as an EMT in the field, Medical Scribe, and Medical Assistant in various patient care settings from ophthalmology clinics to level 1 trauma centers. I have also worked with the CDC’s Division of Global Migration and Quarantine during the Ebola crisis.
Dr. Darren Klugman: I have board certifications in pediatrics/pediatric cardiology/pediatric critical care medicine. I’ve been a cardiac intensive care physician as a faculty person for 10 years, the medical director of the cardiac intensive care unit for the last 4 years, and I run the quality program as well. I spend my days specifically taking care of children and adults with critical heart disease in the cardiac intensive care unit.
Conquering CHD: What prompted your COVID-19 test? Has the rest of your family been tested?
Agata: Leah was tested for coronavirus at the hospital. We waited for the results for 3 days, and by that time Leah was recovering well and was discharged from hospital a couple of days later. The rest of the family hasn’t been tested but I am 99% sure we all had it.
Rocky: I had developed symptoms that started from a sore throat. My academic institution had already sent reminders to seek help should this happen, keeping in mind the COVID-19 situation. My parents had come to get me, which prompted me to seek care, since I was out of state from my home.
Dr. Klugman: I was actually on-call in the ICU and started feeling a little bit funny – it’s hard to describe. The next morning I had a little bit of aches and occasional chills, and I never ever get sick. I thought this is sort of strange. I left the hospital at the end of my shift and I called my wife. She said “You’ve got COVID” and she’s not a physician. I said, “You’re crazy, I don’t have COVID.” She said, “We’ve been together 25 years and you never have taken a sick day from work. You don’t get sick. And now there’s a novel virus that is a global pandemic and you’re not feeling well.” I stopped at a minute clinic and got a flu test, thinking if it was positive for the flu, it would be unlikely to be novel coronavirus. The flu test was negative.
I got home that day and began isolating myself from my family in the basement. The next morning I had the high fevers and felt even worse so I went back to the minute clinic to get a repeat flu test. The repeat test was negative again. I continued isolating myself at home and the following day my fevers were sort of subsiding, but I felt like I should let my hospital administration know what was going on given that I had been on-call in a cardiac intensive care unit.
The first thing Sunday morning – day three or four being sick – I drove to the hospital and actually got the first rapid test that was performed at the hospital. It was positive.
Conquering CHD: What symptoms were you experiencing and how long did they last?
Agata: Leah developed a mild cough which lasted for 3 days. After 3 days, the cough became stronger, and Leah became very tired and lethargic. We called the nurse to check her saturation, and they were lower than usual (her normal saturation is around 80% but on that day the reading showed 65%). Leah had a slight temperature of 37C. The nurse combined all the symptoms and decided to call for an ambulance straight away.
Rocky: In hindsight, my symptoms were mild compared to what one may have heard and seen. I am fortunate for this. My symptoms included coughing, body aches, and bouts of fever, which went as high as 103F at one point. But the one thing that kept me out of the hospital was that I had no shortness of breath to the point my saturations were dipping. I feel having a spirometer to help my breathing and keep my air moving in my lungs helped.
Conquering CHD: What was Leah’s stay like at the hospital?
Agata: It was quite traumatic. Leah was extremely scared of all the nurses and doctors in the because of their PPE, it felt like we were surrounded by aliens. It took her a couple of days to get used to seeing people in full PPE. All the staff at Pilgrim Hospital were very friendly and tried their best to make Leah feel comfortable.
Conquering CHD: What was it like to be quarantined?
Rocky: I actually was instructed to self-isolate and keep my contact limited from my family, which I did. Given my congenital heart history, I’ve continued to adhere to this. To be honest, being a medical student, I am quite used to sitting in a room studying all day, so it wasn’t a drastic change from my normal routine. It was more so a mental thing and still is because over the years I’ve had my run of health issues, so the thought of “here we go again” was a bit worrisome. I am still making up work and had to clear out my summer plans for this reason. A lot of my life has been affected, but it’s worth it, because, in the end, I still have a heartbeat. That’s all that matters in the end.
Conquering CHD: How has the COVID-19 diagnosis impacted your home/family/work life?
Agata: We were shocked when we found out that Leah had coronavirus. Obviously, we were worried about our 2 other daughters (Emily – 5, Natalie – 4), but there was nothing else we could do. Because of Leah’s conditions, we were isolated for a couple of weeks already, and despite this, she still caught it.
Rocky: Eventually, my entire course load did shift to online work, so having to adjust to that and commencing make-up work has been challenging. Along with having CHD and a history of being ill, fighting those terrors has been facing battles on different fronts. Thankfully, I have a strong support system at home, and my own doctors have been helping with accommodations to ensure the transition to making up my work is smooth. It’s new territory no matter what aspect of life you go to, and the important thing to remember is, in the end, we will come out stronger, no matter how bleak the situation may look. I think the most important thing is communication because being CHD heart warriors we are often seen as “tough,” which we are, but to mitigate that toughness, there needs to be a path going forward if you are affected by COVID-19. This is a very unique situation, and you should not be tackling this alone.
Dr. Klugman: I was in the basement for 3 weeks because I had a very prominent cough and due to the lack of testing I wasn’t able to get retested for nearly three weeks. Since I couldn’t get a repeat test, while the CDC and all the health guidelines suggested I didn’t have to be quarantined any longer, just to make sure that I didn’t potentially expose my wife and kids I actually stayed. I slept and used the basement bathroom for 3 weeks, got retested, and the test was negative. Ironically the cough went away the day I got tested and I have not had a cough since. It is definitely impactful, the quarantine and isolation, there is no question, but I actually think it is the least impactful part of this entire pandemic on work, family and home life.
Conquering CHD: What helped you/your family get through the illness?
Agata: As I mentioned above, it all happened without us knowing that she had coronavirus; by the time we got the results she was already recovering well. She spent the first couple of days on high flow oxygen and then was put on normal oxygen for a couple of days. After that, she was well enough to go home. The only disadvantage was that no one could visit us at the hospital, it was very challenging to explain to Emily and Natalie that they could not see Leah for a few days.
Rocky: My heart was stopped twice in my life, I have had multiple catherizations, numerous medical leaves, but being able to write this for parents of CHD patients and CHD patients themselves is a testament to the idea that we have come a long way in CHD care. Despite more work to be done, the hard work we do for our self fulfillment everyday in getting up and showing up to this idea of “life” is all the more reason for me to personally believe that no matter how big the mountain, it can and will be conquered. I suppose that’s why we adhere to the idea of “conquering CHD.” No matter what path we take on this CHD journey, our end goal is indeed the same, but the path to get there will often be different, some may have to deal with things like COVID-19. For me, COVID-19 is just another checkmark on a list of different things I’ve gone through.
More specifically, laying down in bed, I would listen to motivational YouTube podcasts before closing my eyes. It helped fire my soul up more and more. It’s been a secret weapon over the years and hasn’t let me down. There are healthcare professionals who walk into hospitals which are effectively incubation tanks, and knowing that I am training to be a part of that group of people, after conquering all that I have, is what keeps me going.
Dr. Klugman: I have been very fortunate that I don’t get sick, likely from being a pediatrician and spending so much time in the hospital and probably being exposed to most of what’s out there. For me, it felt like what others have described as typical flu-like illness, with the exception of this lingering cough. I feel very fortunate, but for me getting through it was less about me and more about everybody else. If the guidelines were not so clear and so strict about isolation and quarantine, I likely would not have been in the basement for much, or any, of my illness. But this pandemic, this virus, and all of what we’re asked to do is not about a single person. It’s about all of us giving of ourselves for the greater good. So for me getting through it was relatively easy, when you frame it that way.
Conquering CHD: What would you say to those worried or anxious either about getting COVID-19 or being stuck at home?
Agata: My only advice is to ask for help when you feel that something is wrong. If you see your child is tired more than usual or has a continuous cough, call the nurse or see a doctor. I think most of the children are strong enough, and they won’t show any symptoms but a vulnerable one (like Leah) will need treatment quickly to fight the virus.
Rocky: Being worried about it is fine, but don’t lose sleep to the point that it affects your health. Trust the judgment of your healthcare professional. They have seen the worst of the worst and can offer insight. The practice of self-isolation at home works two-fold, for yourself and for others. The virus we are talking about sees us as humans as the host it needs to survive. Ironically, to achieve our goal of defeating this, we need to see the value in each other as humans, in being there for one another, by adhering to the healthcare recommendations for our area. But most importantly, trust your body. That is your home, in tough times we trust our home to be there for us, as it was through our many open-heart surgeries.
Dr. Klugman: We should all be very mindful and respectful of this virus. It is highly contagious, and it has a very wide range of presentations and physical burdens, that we don’t understand completely now and likely we won’t understand for quite some time – until we’re able to get more data and carefully and thoughtfully study the data that we accumulate from patients and the public health sector.
What I would say about people who are worried or anxious is that the best way to protect yourself is to follow CDC and local health authority guidelines. The irony of all of this, I’ve thought, is that what we are really asking people to do is what many of us would think is common sense but all of us have a hard time abiding by – wash your hands, don’t pick your nose or touch your face unnecessarily, and if you’re not feeling well, stay away from people.
Conquering CHD: As far as daily duties in a critical care unit, have you had to change the way you communicate?
Dr.Klugman: It’s been a fascinating experience for all of us because we have fundamentally changed the way we deliver care. And it’s not unique to my institution. We have implemented policies where if you’re not on clinical duty that day, everyone’s working from home. We have limited the size of our rounding teams to the attending physician, the fellows who are on clinical service, and the ancillary staff, such as the nutritionists. Pharmacists, who are usually part of our rounding teams, are virtually rounding with us, on iPads and remote monitoring robots that allow us to bring in consultants remotely – mainly to minimize the number of folks in the unit, and to try to minimize the exposure of healthcare providers to patients and families that may have been inadvertently exposed themselves. We have also limited the number of bedside visitors that patients can have, which is a tremendous burden on patients and their families, and that’s really a means to try to minimize the spread and limit the potential exposure of our patients. We’ve done a lot of work with messaging to patients and families in our unit and in our heart program about COVID and about the way it’s impacting our care and why we are taking the steps that we are. The families and patients have been outstanding partners in this whole thing, they have been incredibly understanding and really willing partners in everything we have asked of them – in an environment that is inherently stressful, anxiety-provoking, lonely, and isolating without a pandemic. I can’t imagine the stress and anxiety of our families and patients, and through all of this, they’ve been tremendous. We’ve spent a lot of time talking with them and the hospital’s implemented many policies that we’ve asked patients and families to abide by, and they’ve been outstanding.
So the conversations continue. We probably do spend a little more time talking about COVID and spend as much time as we usually do talking about the patient’s immediate heart disease and their time in their clinical recovery in the ICU, but the tenor of the conversations has changed, the topics have changed, and their delivery has been changed as well, as we try to manage this.
The general recommendation that I make to everybody is exactly as you stated, follow the CDC and local health department guidelines stringently and don’t waiver on what they are asking us to do. And for patients and families with congenital heart disease, it’s no different, in fact, it’s even more important.
The anxiety and stress that people are feeling about this is completely understandable. What I would tell them is that if there are any questions at all that folks have about the virus, about their child’s specific illness, how it might impact them given their congenital heart disease and other comorbidities, is contact your child’s cardiologist, your child’s pediatrician. And that’s what we’re here for, there’s not anything more important during this time than us being available as a resource and an ear for people to express frustrations, express concerns, express their anxieties and be there to reassure folks.
Conquering CHD: Have you seen anything positive come out of all this?
Agata: People coming together, everyone helping each other. Our community is a lot stronger than it was before COVID.
Rocky: The way we have come together. When folks found out I was ill, the outpouring of support from my friends and of course the CHD community was quite something. It’s what is currently helping me overcome the after-effects of it. I think if history is any sort of teacher, like us individually, we will come out much stronger than we went in. We always do, that’s what I’ve learned over the course of my CHD journey.
Dr. Klugman: Oh there’s no question about it. I have been participating in a trending hashtag on twitter called Silver Linings, where every day I put out a tweet to the medical community of a silver linings experience that I’ve had during the day – whether it be watching one of my children cook dinner, having an opportunity to go on a bike ride with my children, watching acts of kindness that are going on in the community. Just a tremendous opportunity for us to all to stop and look around and realize that within tragedies and challenges come opportunities to really pause and reflect on who we are as a society, who we are as people, what really is important to us.
The interesting thing about this pandemic and what we are being asked to do is something that I touched on at the beginning of this conversation. For all of us, we are all being asked to change our lives in ways that we never would have imagined. I have 3 children at home, all of whom are in different Zoom classrooms, and they’re in various parts of the house trying to learn, while my wife and I are trying to maintain our jobs and continue to have some element of productivity in our lives. That’s really hard. That’s not normal for children. That’s not normal for parents. We’re fortunate, we have our jobs, we have computers for our children, and guess what, we’ve never spent this much time together as a family. We eat dinner together every night. There is a tremendous number of opportunities for us to look at this and say when this is done and life gets back to normal, whatever that’s going to look like, let’s not forget those things that we started doing individually and as communities during this time. Let’s continue that.
One of the things that we have spoken to our children a lot about – because I do think this has been really difficult on kids in ways that we do not completely understand – is what to do when they get frustrated. While not minimizing the tragedy and the burden on our society, I think we have to focus on the positive, in order for us to manage this and help each other get through it.
If you or your child have CHD and have experienced symptoms of COVID-19, please consider participating in our COVID-19 and CHD survey.