Telehealth and RA: Am I My Own Doctor Now?, Part 2

By now, I would imagine that the majority of people living with chronic illness have had at least one telehealth or virtual visit with a physician or other healthcare provider. I’ve personally had several.

My doctor was a no-show

In Part 1 of this series, I was relating the story of a virtual appointment with my rheumatologist. The process definitely didn’t go smoothly, even before the appointment took place.

In short: The office made an appointment for a virtual visit. I logged in on time. The doctor didn’t show. I called the office a couple of times while waiting. I have to log off because of another appointment. The office contacts me during that other appointment and I have to basically say - I can’t talk right now. Sorry.

You can catch up by reading Part 1.

Troubleshooting technical difficulties

After having to dismiss the office manager, she does call me back in about an hour to reschedule. At the time of the new appointment, which was fortunately during the same morning, I log back into the system. Finally, my doctor, Dr. G., comes online but she can’t hear me.

Although these months into the pandemic have forced many doctor's offices to go virtual, my rheumatologist’s headphones are not working and/or she can’t find the setting to turn on/up the volume. Eventually, she texts me a number to call and we use a different video conference system through the phone which worked very well, by the way. Finally, we can both see and hear each other.

How this virtual visit played out

She starts with, “How’s it going?” Our conversation touches on the activities I been doing lately, what the updated information is regarding COVID-19 and people with RA, and whether I need new prescriptions. I tell her I fell on my bike and hit my knee pretty badly, but that it seems to be getting better. She asks if I went to the ER or if anything was broken. I said "No" and "I really don’t think so."

I ended up assessing myself

During the appointment, Dr. G. didn’t have me show her much of my body except to extend and contract my hands, bend my elbows, and lift my arms. I used the phone camera to try to show her the bruises on my legs from the fall. I end up assessing myself: heart feels fine/normal, no coughing, breathing fine, no new infections, sleeping ok, eyes fine, etc. If I eat bread or sugar, my body hurts so I know I shouldn’t do that.

Then she agrees to send new orders for Rituxan to the infusion center and to send me an order for laboratory work. That’s it. My appointment is done. The next one should be in 3 months.

Are virtual visits an option for patients with more needs?

I firmly believe that we are in charge of our care. Each of us should be the center of our healthcare team. But when it seems like the only thing we need our doctors for is to write prescriptions and send orders, then maybe the balance is off.

I appreciate having access to telehealth

I really appreciate having access to telehealth. It has been fabulous for therapy sessions, and I believe that I’ll continue with that option for a while longer. I definitely don’t feel like going into buildings with other people any more than I absolutely have to right now or in the near future.

But I worry about the patients who have greater needs than I. My care is simple. My RA and MS are stable and I would fight anybody who wanted to change my current course of treatment. If it ain’t broke, don’t go tinkering about with it.

A hands-on approach is important to RA care

So far, I’ve heard both my rheumatologist and my neurologist tell me at the end of a virtual appointment that I’m really good at reporting what’s going on. They trust my evaluation. I tend to notice when things are different and I'm not afraid to speak up.

But like that “ouch” which my previous rheumatologist could elicit (described in Part 1) or the heart murmur that she heard and wanted to have checked out, what might the doctors be missing during a telehealth visit? I don’t know. And the fact that I don’t know is exactly why we need doctors. I can’t be expected to be my own doctor all of the time.

A combination of virtual and in-person visits

Perhaps a combination of virtual and in-person appointments would be effective for people living with RA. Altering the two, you could have the convenience of checking in from home without travel while benefiting from periodic hands-on and ears-open examinations. A drawback might be that you have to get really good at assessing yourself and sharing notes, but isn’t that something that is an important part of being an engaged patient anyways?

Each of us brings something to the examination table. While I am not my own doctor, I am my best advocate. Virtual visit or in-person visits, that part of care should never change.

What has been your experience with virtual telehealth visits? Please share your story in the comments.

Be well,
Lisa

Read my other articles on RheumatoidArthritis.net.

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