Navigating the not-so-normal new normal

Diagnosed with common variable immune deficiency (CVID) 35 years ago, Dr. Jennifer Pate understands the importance of being a health advocate for herself. She keeps track of her medical records, is prepared for emergencies, and ensures she receives the best care possible. Since the pandemic began, however, accomplishing those goals has become more complicated. Dr. Pate has adapted.

As a presenter at the August 27 IDF forum entitled “Navigating the Not-So-Normal New Normal,” she shared steps members of the PI community can take to stay healthy during these unprecedented times. 

“What I’m going to walk through is a lot of information about things to keep in mind now and going forward, since we will not be on the other side of COVID-19 any time soon,” said Dr. Pate.

Dr. Pate, chief psychiatrist at Baylor St. Luke’s Medical Center in Texas, cares for clients who are chronically or terminally ill. Due to the pandemic, she now sees them exclusively through telehealth. Almost every day, her clients tell her they are feeling sadness, depression, boredom, fatigue, confusion, anxiety, and guilt.

“If you’re experiencing any or all of these emotions during the pandemic, you’re not alone and you’re not crazy,” said Dr. Pate.

As you power through those feelings, it’s important to continue to maintain an organized approach to addressing your health and communicating with your health team.

Before you can communicate with your team, however, you have to make sure you have one assembled. According to Dr. Pate, there are several things to consider:

• Make sure you see the correct specialist for the health problem you’re having
• Ask others who they like and why
• Try to stay within the same health system because it could make communication within the health care team smoother. 
• Don’t be afraid to “test drive” your doctor. Ask questions like: Do you like the doctor? Does the doctor listen to me? Is the doctor competent? Is the office staff approachable and responsive?

Dr. Pate also addressed the issue of telehealth. Should persons with PI see the doctor in-person or through telehealth? The best way to determine that is by examining the community spread of COVID-19 in your area. Are there a lot of cases? What are the hospitals looking like? How much risk is there?

“I would say for the vast majority of zebras, the answer is telemedicine,” explained Dr. Pate.

Also, healthcare providers may not be offering telehealth, but if that is your preference, said Dr. Pate, you should demand they comply. When the telehealth visit does take place, be prepared. Have more than one device ready for a Zoom meeting, for example, and make sure you test the camera and microphone. Join your online appointment 10 minutes in advance to allow for troubleshooting.

Do your homework when it comes to keeping track of your care, instructed Dr. Pate. Always remember to maintain a list of: all the medications you take, names and number of pharmacies you use, contact information for all physicians, and confirmed medical diagnosis. Also, keep a brief summary of recent doctor visits.

“These are tools to make your doctor visit go better,” said Dr. Pate.

Another suggestion is to keep pictures of the cards that come with devices (such as PICC lines, portacaths, and replaced joints) in your wallet so that if you are admitted to a hospital, staff know the exact kind of medical equipment that you use. In addition, if you have heart trouble, carry a laminated copy of your baseline electrocardiogram (EKG) in your wallet for comparison should there be an emergency.

Dr. Pate also touched on the topic of how to navigate labs and pharmacies now that COVID-19 poses such a threat to health.

If it’s necessary to continue getting bloodwork, see if a home health nurse can take the labs. If not, look for a free-standing lab not connected to a hospital or other medical facility, and arrive as early as possible or on the weekends. Also, make sure that lab orders don’t duplicate each other.

When visiting the pharmacy, sign up for text alerts to make sure the prescription is ready because there may be supply chain issues. Use the drive-thru only and put your name and birthdate on a notecard so the pharmacist can read it through the window in case masks interfere with a conversation. If you must produce a driver’s license, try reading the information to the staff person and assume that’s acceptable. If not, wipe down the license after it’s been handled. Above all, wear a mask and gloves when visiting the pharmacy.

“What we are seeing is more transmission through aerosolized particles. What that means is we have people who are coughing, sneezing, laughing, yelling, talking loud without a mask, and they’re emitting viral particles into the airspace,” said Dr. Pate.

“So even though you probably don’t have to wear gloves in the pharmacy drive thru, I say why not? And you’ll always have to wear your mask, because the one thing that we have seen every single day is that a mask is a lifesaver.”

As her final recommendation, Dr. Pate described what every person with PI should have in their “go packet” in case they are admitted to the hospital unexpectedly. The main items include: driver’s license, insurance card, your doctor’s contact information, and a medication list with dosing times. Keep these items in an envelope by the door and in the car.

Dr. Pate ended her presentation by participating in a Q&A with viewers that covered queries including:

• How can I encourage my medical providers to communicate with each other?
• How do you go about sharing lab results with different providers?
• How do I explain to doctors what kind of PI I have?
• How would I go about getting copies of what’s in my chart?
• During COVID, how can I make sure the medical team is following proper precautions?
• If I notice a mistake on a medical record, how do I talk to the doctor about fixing it?

“I really feel like it’s part of my personal mission to help zebras,” said Dr. Pate. “Having been able to survive 35 years with this is really pretty amazing and I’m happy to share my experiences and happy to help.”

Click here to listen to Dr. Pate’s full presentation, “Navigating the Not-So-Normal New Normal.”