Signs of Recovery

May 29 was my scheduled six-month CT scan at the University of Florida’s Shands Hospital, under whose care I have been since flying home from Amsterdam last year. The five-hour drive seemed less daunting as my strength and confidence returned, and the appointment appeared poised to be the maiden voyage for the new car we bought at noon on Friday, March 13.

Friday the 13th. While we were at the Earl Stewart car dealership, the public schools closed. By the end of the weekend, Florida and the rest of the United States were in the Coronavirus pandemic lockdown. Suddenly, getting in a car to go anywhere — much less five hours away — was fraught with danger. We waited at home for things to get better.

Things are not better. Five months later, America’s shameful government leadership has failed to stop the Coronavirus. The number of cases in Florida alone is far greater than other countries’. We still are home most of the time, but, when we do go out, we wear masks, wash our hands, and keep our distance from people.

Recovery is a long, slow, and uncertain process in the best of times. A wise doctor in Amsterdam counseled me to keep my expectations low, treasure the small accomplishments, and stay in it for the long game. It did take me a full year to feel like myself again.

Those who survive COVID have it much, much worse, as the medical community is discovering in the survivors they’ve described as the long-haulers. But one thing that I have in common with these brave souls is hair-loss. Alyssa Milano’s recent Tweet documenting her own hair loss went viral.

In her recent article in USA Today, reporter Adrianna Rodriguez has written about hair loss as another consequence of the coronavirus. The Harvard Medical School says that “telogen effluvium,” the medical term for this condition, can be triggered by major physical trauma, a shock to the system.

There’s a growing phase, a resting phase and a shedding phase. When you see a lot of shedding, that’s when people perceive hair loss.

Jennifer Ashton, MD

Cleveland Clinic’s Dr. Shilpi Khetarpal says that hair loss comes after the illness.

This is why we’re seeing these patients now, several weeks after COVID-19 symptoms resolve. Telogen effluvium isn’t a symptom of COVID-19 as much as it is a consequence of the infection.”

Dr. Shilpi Khetarpal, Cleveland Clinic.

So, losing my hair was part of getting better. It became very thin about three months after my illness. Though it sure didn’t feel like a positive thing at the time, it was the beginning of recovery. Although it’s not very stylish (stay-at-home-mullett!) and gray/brown/blond (stay-at-home-color!), it feels thicker and curlier than it was before. Silver lining category.

The long game seems endless, and then you put a pan away without thinking and realize you’re getting better.

This morning, I took another step in the right direction by finally getting my six-month (now an eight-month) CT scan. My diagnosis in Amsterdam was Segmental Arterial Mediolysis, a disease in which the walls of the abdominal arteries are weak. It’s a relatively rare diagnosis about which not enough is known, including whether it can resolve itself. In addition to keeping blood pressure in control, you want to keep an eye out for aneurysms. Now that I am able to move as I want, it was time to be sure my body and my head are in synch.

With a nod to the pandemic, Shands sent the order down to an imaging facility a mile from my house. I suited up — mask, gloves — and followed the distancing protocol to guard staff and patients alike. I was in and out quickly. Fingers crossed.

Meantime, I’m taking Kumba’s lead and not worrying about what I can’t control. Wishing you and yours continued health and courage!

Care For Each Others’ Bodies, Minds, and Spirits

I’ve been where coronavirus patients now are. The ICU of the Amsterdam hospital in which I lay for six weeks last year — much of that time on a ventilator — is today filled with very sick people fighting for their lives. For those that survive, the challenges will not be over. Many will suffer from long-term physical, cognitive, and emotional problems resulting from being sedated. It’s called post-intensive care syndrome, or post-ICU delirium.

In Erika Edwards’ recent article for NBC News, she quotes Dr. Amy Bellinghausen at the University of California, San Diego, as estimating that up to two-thirds of ventilated patients may be affected by post-ICU syndrome. Symptoms include physical weakness and post-traumatic stress.

I suffered from physical weakness, dropping from 130 to 95 pounds and losing the ability to move during my six weeks in the ICU. Lying still is a wicked thing: your body needs time to recover, but in being quiet it begins to fade away. It took me six more weeks in the hospital to be able to walk gingerly out of there and onto a plane headed for home, where I’ve slowly regained all of my strength and most of my weight.

I also had cognitive and emotional challenges stemming from being sedated. I had very real dreams in which evil nurses were torturing me and telling me horrible things about other patients. I was certain that the hospital clocks were being changed to confuse me. I was frustrated that my family didn’t understand what was really going on.

I was lucky, though. These thoughts and the nightmares faded away in my final weeks in the ICU, and did not return as I continued to recover. They’re just stories now.

Erika Edwards cites doctors’ observations that the best way for patients to avoid post-ICU stress in the first place is to have their family at their side. That’s what made the difference for me. My husband, with whom I was traveling when I suffered the ruptured arterial aneurysm, our daughter, who flew in from Florida, and my sister, who flew in from Colorado, managed to be with me as much as 12 hours a day. The ICU nurses had to chase them out, telling them to take care of themselves, too. But those same nurses cut my family a lot of slack in bending the narrow visiting hours to let them be with me. They held my hands, they stroked my face, they talked with me, they laughed with me. I didn’t see when they cried. I just knew they were there.

The poor souls who are struggling to live as the coronavirus clamps down on them are bereft of family. This virus is robbing them of a crucial life line.

ICU patients need to have humans around to orient them, to calibrate them, to touch them, to look in their eyes and make them understand what’s happening. But that’s exactly what the COVID patients won’t get because they’re all being isolated.

Dr. E. Wesley Ely, Professor of Medicine and Critical Care, Vanderbilt University

These patients are not alone, though. My Dutch doctors and nurses were compassionate, caring, and steadfast. I am imagining them and their medical colleagues in the world’s ICUs today, doing everything they can to care for their coronavirus patients. The Cleveland Clinic is one such place. A patient who survived COVID-19 thanked his caregivers by asking one of them to write a note on the glass wall they’d used to communicate with him. Here’s some of what he said:

Today I leave this ICU a changed person … not only because of your medical healing and God’s direction and kindness, but also with the fact of knowing that there are such wonderful people dedicated to the care and concern of others.” Here’s a Twitter posting with more.

Mr. Brown, COVID-19 survivor, upon discharge from the Cleveland Clinic

I join the millions of people all over the world in clapping for these brave medical soldiers, first responders, grocery deliverers, post office employees, package mailing staff and all others who are our front line in this pandemic war. God speed.