Three members of the bleeding disorders community.

Living with Bleeding Disorders in the Time of COVID

Pandemic stories of strength, perseverance and resiliency from three members of the bleeding disorders community.
Author: Sari Harrar

The COVID-19 pandemic has affected the lives of all Americans in ways large and small. More than 600,000 Americans have died, and millions more are coping with long-term effects of the disease. And like everyone else in the US, people with bleeding disorders, family members and healthcare providers in the bleeding disorders community have had to make adjustments to every aspect of their lives. Three members of the bleeding disorders community who have been significantly impacted by the pandemic talk about their experiences over the past year.

Leticia Nevarez of Oxnard, California

Three of our five children—our eldest and middle daughters and our youngest son—have von Willebrand disease. Our oldest daughter also has delta storage pool deficiency. They all take care of it in different ways. My oldest has an IUD to prevent extremely heavy menstrual periods and uses clotting factor as needed. My middle daughter infuses with clotting factor on demand. Our son, who’s 13, is on prophylactic treatment and infuses three to four times a week. He’s a Little League baseball player, a catcher, and before the pandemic he was playing year-round, so he would infuse before every practice and every game to avoid injury. He has two target joints, and we want to prevent the microbleeds that lead to joint deterioration over time.

What’s funny is, before I had children, I was a medical assistant and a phlebotomist. So here come these kids who need infusions. A normal person might panic about the needles. But I know how to find a vein, and I’m not afraid of needles. My husband tells people God put me there and sent me for formal training for a reason. I was put on the proper path in my life.

Economic Impact

My husband works in construction, and I was working in behavioral health, doing child care and transportation, when COVID happened. No one was hiring people to work in their homes, and behavioral health went on Zoom, so we both lost our jobs. Unemployment helped us, but I was still behind on rent and bills. We received help from the hematology department of the local hospital and got grants from the county that helped us with medical expenses.

Out of the seven of us, only our oldest daughter was working steadily during a lot of the pandemic. She had a job at Target and then got a job at an Amazon hub nearby. The rest of us were home, with our youngest son and daughter taking middle school and high school classes online, and our middle daughter finishing up college online. It was busy and noisy, and I loved having everyone home. But it’s also a good thing that everyone has their own bedroom!

Being Extra Careful

I’m not the kind of mother who wraps her kids in bubble wrap, but during the pandemic I’ve been really strict. I didn’t want them to get injured or have a bleed and have to go to the hospital. I didn’t want them to be exposed to the virus. I was scared. There were so many “what ifs,” and nobody knew the answers early on. I told my kids no skateboards, no bikes, no jumping on that trampoline. The bubble wrap came out! Our daughter would take her clothes off as soon as she came home from work, change and wash them. Nobody hung out with their friends. I told my husband, “If you go visit your brothers, take your stuff with you because you can’t come back.” I just didn’t want to take any chances.

Now, we’re still very cautious, but we’re more relaxed. I’ve been vaccinated because I work in a hospital. And we’ve seen that wearing masks is very effective. We double-mask, with a surgical mask underneath and a fabric mask on top. My sister-in-law made fancy, pretty cloth masks for the kids, so they can be themselves! California has allowed outdoor dining, so we’ll all go out for dinner. We can see family and friends again. I can visit my mother, whom I didn’t see for six months during the worst of the pandemic. That was really hard. I got a new job working in social services case management at Ventura County Medical Center. I absolutely love it. I feel it’s God’s plan for me. And my son’s team is planning to start its spring season in a couple of weeks. That will be great for my son, whose whole world stopped last year when school and baseball shut down.

Support From the Community

The bleeding disorders community has been there for us throughout the pandemic. Doctor visits went online, but we could always call and ask questions. The office knows our voices. They’re like family. Our bleeding disorders group meets in weekly Zoom calls, and we’re even having an online women’s retreat with the Hemophilia Foundation of Southern California. It’s so supportive having a group of people around you all going through the same thing. But sometimes you need human interaction. I can’t wait until we can see each other again. I’m a hugger, and I miss giving really long hugs.

Social Worker Constance Thibodeaux, LCSW-BACS, of New Orleans

When COVID-19 lockdowns happened, the Louisiana Center for Bleeding & Clotting Disorders had to immediately stop seeing patients in person and enter the world of telemedicine very quickly. We set up telemedicine clinic visits for our kiddos with bleeding disorders who are normally seen at least every three to four months and for our adults who are seen at least annually. Emergencies and evaluating active bleeds by video or even by phone was a challenge. Pictures helped.

Our physical therapist and nurses, with guidance from our doctors, could educate our patients on how to treat a bleed. For individuals who did not have the ability to self-infuse, when possible our outreach nurse would go to the home to infuse them. There was significant reluctance in going to hospitals. Patients with mild factor deficiency who generally have not been taught to self-infuse would typically need to go to a hospital emergency room. We diverted these patients either to infusion centers or referred them for home health services for infusions.

Our doctors, nurses, physical therapist and social workers all joined in during a comprehensive visit via telemedicine, allowing everyone to hear what was going on in real time to reinforce the doctor’s recommendations. During Zoom clinic visits we saw families and people’s dogs and cats. Their kids showed us what they were doing at school. And, yes, some people tried to do telemedicine while driving. We had to ask a patient to pull over!

COVID Anxiety

People were very concerned about COVID. They understood early on that having a bleeding disorder did not put them at higher risk. They were more concerned about keeping their family safe, navigating online school for their children while working from home. Things were confusing and scary. There was so much conflicting information out there early on. So it was very important to get accurate information to our patients at the onset of the pandemic.

Our hemophilia treatment center (HTC) is affiliated with Tulane University, which helped to provide accurate facts about the pandemic. And we developed a resource sheet with information on where to get help with rental assistance, food banks, health insurance, stress management, resources for basic COVID-19 information and more. As the only life span HTC in the state, we provide information to a large community. We organized the information by parish (we have parishes instead of counties in Louisiana), and people were grateful.

Some of our patients did develop COVID. We had some losses, and it was heartbreaking. While we were not involved in their medical care for COVID, our physicians and nurses provided care plans for those patients with severe factor deficiency to treat before and after their vaccination.

Lessons Learned

The beautiful thing about our bleeding disorders community is their resiliency in times of crisis.

People with bleeding disorders are so used to always having to come up with a plan B, C and D in their lives because they’re chronic condition. So with COVID it was like, “OK, here we go again…let’s figure it out…” We have and will continue to learn lessons from this pandemic. One lesson we’ve learned is the importance of addressing mental health for achieving overall health and well-being.

Following Katrina all we wanted to do was get back to our beloved city, homes and culture. In the pandemic all we longed to do was get out of our homes and be with one another. Following the storm we realized the importance of getting and updating email addresses, cellphone numbers and the names of people who would know how to reach our patients and families in the event of an evacuation. That helped us tremendously in COVID. Some of our patients live up to five hours away. While most of our visits are again in person, telemedicine may continue post-pandemic for a few of our patients for follow-up appointments as needed.

Adjusting to a New Normal

In Louisiana, we are very social. We do everything together. So not getting together in person has been difficult, but you find ways to make it happen.

We’ve partnered with the Louisiana Hemophilia Foundation chapter and Hope for Hemophilia in providing online support groups and educational sessions. Along with social workers throughout the country, I offered online programming provided by VWD Connect, which is a national organization that provides support and education for patients and families in the von Willebrand disease community.

This community of patients and their families has had an advantage during the pandemic. In a time of crisis, you find a way to make things happen. And you share the knowledge and support with each other. Our HTCs, which by design offer patient-centered care, are part of that, too.

Brett Clement, CRNA of Los Angeles, California

I was working at New York-Presbyterian/Weill Cornell Medical Center in New York City when COVID became a crisis in March 2020. It was chaos—controlled chaos. The hospital reached capacity pretty quickly. Most regular surgeries were not happening, so operating rooms were turned into an intensive care unit. And the post-anesthesia care unit also became a new ICU setting. We added 40 to 50 new beds that way. In an ICU, it’s fairly normal to have lots of stuff going on, but I’ve never seen that number of patients in a setting like this. It went on for weeks and then for months.

As COVID cases grew, our role as nurse anesthetists changed. All the patients were extremely sick. They were intubated and ventilated. Our anesthesia machines work as a ventilator as well as to control anesthetic gases during surgery. The machines are also a hub to monitor vital signs. So the machines were used as ventilators for people with COVID. Few people know how to use the machines, so we were put in that role, adjusting settings.

Almost everyone who is intubated is also sedated. Usually you talk to the patients as you care for them, pretending they’re awake and letting them know what you’re doing. There wasn’t time to sit down and chat, but the patients on ventilators were getting some contact and respect because we spoke to them as we cared for them.

Getting Through It

My coping mechanism was talking with friends and colleagues. My girlfriend was also a nurse anesthetist. It was good that we could talk about it. But I think for the most part, you try to block it out. There’s so much going on, if you try to hang onto it, it can bring you down a rabbit hole that’s more unhealthy than not.

Exercise helped, too, usually cycling. This was March in New York, so it was pretty cold. I have a trainer I put my road bike on, and I pedal inside. It helped a lot. I’d cycle for an hour to two hours a couple of days a week. You try to bring your mind to another place. And music is very motivational. I played a lot of upbeat electronic music that’s kind of techno. It’s great for exercise.

Moving Back Home

I’m back in Southern California now, living in the Los Angeles area. This is where I grew up. I’m working at Kaiser Permanente Downey Medical Center. I arrived during the winter COVID surge.

It felt surreal being back in the pandemic. Nurse anesthetists had a lot of roles, such as being part of a rapid response team and doing rounds on the floors, looking for patients who needed to have their care escalated. Hospitals were inundated, but I think we all have a better grasp of COVID. Patients are put on noninvasive breathing support rather than being intubated right away. Or they’re positioned on their stomachs.

Living with Hemophilia

I was diagnosed with my bleeding disorder as a young child and put into the severe category. I have 0% clotting factor activity in my blood. My hemophilia is well-controlled with a monoclonal antibody. I take it once every two weeks as a shot under my skin subcutaneously, like getting an insulin shot.

There was a concern about medication shortages, but that didn’t happen. And with a novel virus, we didn’t know if it would affect us in the bleeding disorders community in any special way. So far, it doesn’t seem to. I received my COVID vaccine with no problems. I don’t know of any reason why a bleeding disorder is a reason not to be vaccinated. Protection from COVID is so important.