Patients Share their Hospital Experiences during COVID-19

Recently, we both had to visit our local medical facilities. For most people this might be concerning, however for transplant recipients like us it was terrifying. We wanted to share our experiences with our fellow kidney patients to help them understand what to expect if they find themselves in a similar situation.

Jim’s Hospitalization

I have polycystic kidney disease (PKD) and I’m a transplant patient who recently celebrated my four-year anniversary! I was recently hospitalized after a NM gastrointestinal bleeding scan, an endoscopy and a colonoscopy revealed that I had gastrointestinal hemorrhage. Apparently, the majority of the bleeding was caused by a diverticula that burst.

I was nervous about the experience. I had barely left my apartment since the pandemic to reduce the risk of contracting COVID-19. I was put on the a non-COVID-19 wing of the hospital. I had a nurse and an aide on every shift. I had a gastroenterologist, a nephrologist, and a hospitalist that visited me at least once a day. I have a port for blood draws and infusions and a nurse on the IV team checked my connection to my port and infusion bag at least twice a day. The nurses and the aides dropped by my room at least once an hour. A social worker stopped by twice during my stay. I appreciated the attention and care they provided.

What I appreciated even more were the various ways that the practitioners tried to protect me from contracting COVID while there. I came into the hospital by ambulance because I was extremely light-headed due to blood loss. Although social distancing was not possible under these conditions, PPE was always worn and I was masked.

I noticed every time I had contact or a conversation with anyone from the hospital, they stood a minimum of six feet away from me. Physicians and staff always wore PPE in my room, including masks, gowns, gloves, shoe coverings, etc. I wore a facemask anytime someone came by and never shook hands. I have been fighting kidney disease for over 40 years and average about two hospital stays a year. I have never seen this much deliberate care.

Near the end of my stay, I walked around the floor with a caregiver and nurse to help prepare me to go home. I was asked to wear PPE and the nurse and people in the hallways always maintained social distance. On discharge, both the nurse and I were in full PPE.

Mary’s Experience

It started with chills, shakes, total body aches, dry cough, and fever of 103.8 degrees. I called my transplant coordinator first and she referred me to my primary care doctor, out of concern that I might have contracted COVID-19. Primary care referred me to telehealth, where I spoke with a physician assistant who thought I should be seen in-person at urgent care. They all thought I might have COVID-19, a frightening prospect.

When I arrived at urgent care, staff were masked and gloved at the door. They asked medical questions about any symptoms and checked my temperature. The receptionist was glassed in with a small open area for her to talk and she was also in PPE. Being immunocompromised and a transplant recipient, I did not feel comfortable sitting in the busy waiting room, so I asked if I could wait in my car until I could be seen. She checked with a nurse and I was taken back to a clean clinic room. The nurse also told me I was the first person in the room that day and it had been thoroughly cleaned beforehand. When I was finally seen, the medical staff were in full PPE, including gowns, gloves, masks and face shields. I felt safe.

The doctor ordered a COVID-19 test, chest x-ray, and lab work. The doctor said the test would be back in 12 hours and they would call me in the morning. When I did not get a call from urgent care, I checked MyChart online and saw the test was negative. I was disappointed that I did not get a call for such an important result for me.

After my urgent care appointment, my transplant coordinator followed up due to sepsis concerns and to check my temperature. I felt a weight lift having my transplant team there when I needed them most. I am recovering quickly, getting daily exercise with my husband and dog, talking to my friends and family via Zoom to keep me connected to the world, and keeping socially distanced from people I don’t know.

Lessons Learned

We both greatly appreciated the help and professionalism from the medial teams we met. We also need to thank our families and friend who supported us during our illnesses and who have given us such warm welcomes home.

Remember that as kidney patients, we are at greater risk of contracting COVID-19, particularly if one is a transplant recipient and immunosuppressed. Make sure that your team (and you) are using PPE when you meet. Try to wait in a safe area, where there are fewer people. This could be your car, a private room at the facility, or even outside on a nice day. Keep social distance, especially around medical facilities. Also, if you want to receive results of any tests from them, such as for COVID, you may have to get a commitment that they can contact you directly. As the country begins to  go back out, we urge you to protect yourselves and your families as it’s possible we can expect a new peak this year and the CDC continues to recommend that we self-isolate to stay safe. 

As part of NKF’s Kidney Advocacy Committee, we have had a chance to help advise the organization on the continually evolving needs of kidney patients during this pandemic. This has helped shape the advice that they are giving to our public leadership, including in their latest letter to federal policymakers and state governors, and educational briefings to educate around the concerns of the kidney community as economies reopen.

We hope this gives those of you that need medical care the confidence to contact your local emergency room or health care team. They will take all necessary steps to keep you safe. And, of course, don’t forget to review the great materials that NKF continues to provide us, available on their COVID-19 support page.

About the Authors

Jim Myers is a kidney transplant recipient and NKF Kidney Advocacy Committee member, and Mary Baliker is a transplant recipient and Kidney Advocacy Committee Regional Captain.