My transplant was postponed due to COVID-19: Advice from our kidney community

With a wealth of information on social distancing, risk factors and guidelines for health facilities, people have learned how to keep themselves safer and help prevent the spread of COVID-19. But for those who have had a kidney transplant postponed because of the pandemic, much is still uncertain. We reached out to our transplant community via social media for the best advice they have for others coping with a postponed transplant due to COVID-19.

1.    "Hang in there, stay ready and stay healthy." – Dawn

Keeping yourself healthy, as if you are still waiting for a call telling you it is time to go to the hospital for transplant surgery, is a great way to stay proactive and prepared for your transplant. Carrie, a member of our transplant community wrote, "Research your medication side effects, educate yourself on your transplant center's guidelines (they vary by state and facility), and remember, it's hard, I know, but remember to keep going, warriors." Sticking to a health routine while at home can help you feel at your best and keep your body in shape for when the time comes for transplant surgeries to resume.

2.    "Don't lose heart, carry on with dialysis and other treatment." – Dr. Azeem

Dialysis clinics are still open and operating, and it is extremely important to continue treatment as normal. Your immune system and chances of a successful and smooth transplant are stronger when you are healthy. Dialysis clinics are already taking extra steps for your safety. If there are changes in your clinic's hours or your schedule because of the coronavirus, someone from your clinic will contact you. If you are unsure about your dialysis schedule, any upcoming procedures you have scheduled or simply have questions for your care team, you can reach out to your clinic or social worker.

3.    "Sorry you have to wait a little longer, but this delay is to keep you safe for the best outcome." – Connie

Postponing your transplant was a very difficult decision for your transplant center to make, but it was done with your protection in mind. Having kidney disease and its most common underlying conditions puts patients at high risk for serious cases of COVID-19 and people who receive transplants must be immunosuppressed, meaning their bodies are less able to fight off any infection or disease, including COVID-19. Even with proper social distancing, hospitals and facilities are working to make sure they have plenty of supplies and guidelines in place to safely and successfully perform your transplant. They want the best for you!

4.    "I totally understand the disappointment and heartbreak when you're told you have to wait longer. When the day finally comes, you will be so excited! It's like Christmas and birthdays all wrapped into one!" – Michelle

A transplant is an amazing gift that is truly transformative for a kidney patient. The wait can be difficult to cope with, but it is important to remember your time is coming. Soon, you too will be celebrating your gift! Find small ways to honor organ donors, such as sharing transplant success stories on social media. Connecting with others to share how you are feeling, or to share how much you are looking forward to your transplant, can also help you build your support network and focus on the positives.

5.    "I think it would be easier on us if at least we had a date, something to look forward to." – Tammy

While the exact timing of your transplant may be uncertain at this point, focusing on the things you can look forward to can help to keep you motivated! Austin, a member of our transplant community, suggested, "Make a list of everything you want to accomplish post-transplant. Goals and dreams. Research how to take care of that new transplanted kidney and when the day comes, you'll be ready." Signing up for email or text alerts from your health team or transplant facility can also help you feel confident about being one of the first to know about surgery updates.

6.    "Have HOPE: Hold On Pain Ends" – Carrie

Although we have never experienced this type of health emergency in our lifetimes, we are all in this together and are here to help each other get though. Disruptions to transplants are only temporary. Try to be patient with yourself and focus on the now, knowing that support is available if you need it. Bridget writes, "Take it day by day and stay hopeful and positive and happy!"

7.     "Trust your doctors." – Michaux

No one knows how to direct your treatment plan better than your doctor and kidney care team. This is a very busy time for health professionals, but they are trained and have plans in place to keep your health at the highest priority. Before any decisions are made, specific questions about medications, changes in nutrition, symptoms or concerns about emergency treatment plans should be directed to your health care provider. Many providers have enabled telehealth support for easier access and increased safety for patients.

At AKF we understand this can be a challenging and stressful time for people with kidney disease. We care and are here to support you every step of the way. We have put together a number of resources for people with kidney disease, including our COVID-19 education page, a full list of resources for caregivers, and a FAQ on transplants and COVID-19.