Blog post

Why I decided to participate in COVID-19 vaccine research studies as a kidney transplant recipient

AKF Ambassador Lori Noyes has recently participated in two COVID-19 vaccine research studies to help scientists better understand the vaccine's effectiveness for transplant recipients. She wrote about her commitment to helping the immunocompromised community and her experiences getting a third shot of the vaccine.
lori noyes

I was diagnosed with type 1 diabetes when I was just six years old. At that time, my parents were told I would only live to be about 30, but here I am approaching my 60th birthday!

My diabetes eventually led to kidney disease and kidney failure. I was fortunate enough to receive a kidney and pancreas transplant in 1996, and a second kidney transplant in 2015. I have been on immunosuppressant medicines to prevent rejection of my transplanted pancreas and kidneys for 25 years.

I am also a registered nurse and used to work as a kidney and pancreas transplant coordinator, until a few years ago when I became legally blind due to my diabetes. I have always been interested in medical research. Although I am semi-retired now, I am knowledgeable in the field of kidney disease and organ transplantation and like to stay informed about new studies.

When the COVID-19 pandemic started last year, no one had to tell me twice to hunker down at home and take every possible precaution against the virus. Because of the immunosuppressant medicines I take, I am especially vulnerable to severe illness from COVID-19 because of my body's limited ability to fight off infections. While at home, I had a lot of extra time to read, and I learned everything I could about the about the efforts of scientists across the world to study and treat COVID-19. As a nurse and a science geek, I pored over the developing vaccine research whenever I could. I was amazed by what humans could accomplish together in the effort to save lives, and I wanted to help in whatever way I could.

After the first vaccines became available, it still was not clear how effective they would be for immunocompromised people like me because no one in these populations was included in original clinical trials. It was suspected that immunocompromised people wouldn't respond to the COVID-19 vaccine the same way people who are not immunocompromised do. But transplant centers recommended that their patients get vaccinated under carefully monitored conditions in order to study its effectiveness, even if the vaccine only provided weak protection against the virus, or only worked for some immunocompromised people.

I was anxious to get the vaccine as soon as possible and contribute to this important research, so I called my transplant center. They told me about a research study at Johns Hopkins University that was seeking participants. Interested in finding out more, I did some independent research and then decided to contact the university to see if I was eligible to participate.

I learned that they were conducting a nationwide study specifically for organ transplant recipients who were on immunosuppression therapy, like myself. Participants who had already decided to get vaccinated would volunteer to be monitored so researchers could measure the vaccine's efficacy by tracking patients' antibodies against COVID-19 before and after both doses of the vaccine. Participants would need to give regular blood samples and fill out surveys about any side effects they were experiencing. In December of 2020, I applied to participate and soon found out that I was accepted.

I received a first dose of the Moderna vaccine and was glad to have no side effects other than a sore arm. Johns Hopkins was very communicative throughout the process and made it easy to remember when I needed to give a blood sample by giving me a calendar and sending me notifications. When my first set antibody tests came back, I was devastated, but not surprised, to find out I had absolutely zero antibodies after getting my first dose. Most of the trail participants did not respond to the vaccine at all. I kept completing my surveys and getting blood tests, and attended Zoom sessions offered by Johns Hopkins, during which I learned more about the study's developing results. After a second dose, I did develop minimal antibodies against the virus, but my immune system still could not mount a robust response if I contracted COVID-19.

I was vigilant about staying informed and kept attending meetings with researchers at Johns Hopkins. I soon learned that the university was seeking volunteers for more observational studies and investigating whether immunocompromised people would respond positively to a third vaccine dose. Some of the participants in the research study decided to get a third dose of the vaccine on their own accord and let Johns Hopkins researchers know of their decision. Johns Hopkins agreed to take further blood samples from these individuals to monitor their health.

It was around this time when my dear friend Patti passed away from COVID-19. She was a heart transplant recipient who had just gotten her second dose of the vaccine two weeks earlier. I am still heartbroken about her passing, but I firmly decided to keep doing whatever I could to help people with kidney disease and transplant recipients.

I volunteered to participate in an additional research study for Johns Hopkins, this one designed to monitor the T-cells and B-memory cells of organ transplant recipients before and after receiving a third dose of the Moderna vaccine. I got my third dose recently, after getting my doctors' approval, and have not experienced any side effects other than a sore arm. This time my antibodies increased significantly. While the researchers do not yet know what this means in terms of immunity and organ transplant recipients in general, I feel hopeful.

Currently, doctors do not recommend that immunocompromised people get a third vaccine dose unless they are participating in a carefully monitored clinical trial. Even after getting three doses, I will remain vigilant about taking precautions against the coronavirus, like social distancing and wearing a mask, because I know I will never have full immunity.

The studies I have participated in have helped the medical community better understand the effectiveness of COVID-19 vaccine and are now known all over the world. I believe this research will ultimately help everyone with suppressed immune systems, and that has given me a renewed sense of purpose for the first time in years since going blind. I am doing this for you and in memory of Patti.


Lori Noyes

Lori Noyes is an AKF Ambassador and kidney transplant recipient from Southern California.