Kim Downey: Telehealth vs. in-person and what worked for me
My name is Kim, and I am from Kenmore, NY, a suburb of Buffalo (yes, that Buffalo of the snowy and cold winters and chicken wings).
During this crazy pandemic, we all had to make adjustments to working with our doctors. When I found out our visits would be via the telephone for a while I was secretly happy, since I wouldn’t need to leave my house. I have been on disability for a while and have become used to just staying home, so this seemed ideal to me. After several telephone visits with my pulmonary hypertension (PH) doctor, I felt like I was missing something. Did I ask everything I wanted to, or did I forget to ask him to clarify something? I was also trying to take notes while listening to him, and I often missed what he said. It’s just a different feeling than being face to face. Don’t get me wrong, my doctor was always still very helpful and informative, I just felt like an in-person visit would benefit me.
During those cold winter months though, it was actually really nice to be able to stay indoors, not clean off my car, and not have to bundle up. Until my doctor was ready to see patients back in the office we utilized an online patient portal. That was a great way to ask a quick question or see the results of various tests. The good thing about the patient portal is that you can clearly see everything written out so you can refer to that conversation later if need be.
I thought telehealth was a great way to visit during the pandemic so that we could all stay safe, but I was looking forward to getting back to in-office visits.
Now that we are back to appointments in person, I feel great about my visits. I can really understand my doctor on another level in person. His body language, his overall upbeat attitude, reviewing the test results together, or comparing older and newer results. I always leave his office feeling like I learned something, and that I am fully aware of where I stand with my disease and next steps. I have no concerns about safety. We all wear our masks and wash our hands so it feels like a safe place and a place I trust.
It is my hope that we can continue to have visits in person. Even though I have to drive more than an hour to get to my specialist, it is well worth it to me. I truly believe one on one, in person time is important to those of us with rare diseases. It’s difficult enough having an illness that requires medications, tests, and doctor visits. Being able to see my doctor face to face is important to me. We create relationships with our care teams and it helps me to see and talk with them. Sometimes the need for some social contact is just necessary for my overall health, physical and mental.
I am grateful that we are back to in-office visits and I will not complain about the long car ride or take it for granted in the future.
I am also very grateful for Team PHenomenal Hope. They are there for us when we need them and they make our lives easier by creating a cushion, the Unmet Needs Patient Impact Fund, to help us all out. In today’s world of anger and division, I want to be the person who is grateful for what I have and for what others do for me.