When Telemedicine Just Won’t Do

Two weeks ago, my daughter took a pill that was prescribed to her by a neurologist, for headaches. After taking just one pill, she began to feel sick. A half hour passed and her hands began to shake.  An hour after that, her entire body went into full-blown, violent tremors, arms and legs flailing, with stuttered speech and unable to walk.

We rushed her to the emergency room where she was immediately whisked inside, in a wheelchair that could barely contain the force of her seizing.  And then…we waited.  We sat outside in the car while our baby, in full distress, was taken into a hospital that we couldn’t enter, because of COVID-19.

And in those moments, I thought about all of the others who felt that same anguish.  The millions of people across the globe who rushed their loved one to the hospital, only to be told “We’re sorry. You can’t go with them.” And my heart wept.

My daughter was treated with various medications and later released, with lighter tremors. The emergency room doctor had never seen such a reaction to the medication she took. Since being released, she has suffered residual effects from the trauma of the drug reaction.  She has physical issues that are painful for her to endure and painful for us to watch. Tremors, stuttering, eye dysfunction and an unsteady gait, to name a few. The doctor’s office that prescribed the medication was very unsympathetic to our requests for an in-person visit, to assess her injuries.  They even recommended that she not take any more of the medicine that caused the reaction, for just one day, but start taking it again the following day, as if we would EVER let our daughter take that medicine, again. After numerous attempts to obtain a visit, they offered a telemedicine visit with a physician’s assistant (PA).

Now I know there are tons of physician’s assistants who are capable, talented individuals that I would see in a heartbeat for an issue, but when my healthy, athletic child has been debilitated as a result of a medication prescribed by your office, I WANT TO SEE A DOCTOR!  And not only that, I WANT TO SEE A DOCTOR, IN PERSON!

We attended the telemedicine call, a week later, as that was all we were offered, and were astonished at the demeanor of the PA, who behaved as though our concerns were unimportant, and ended the call by telling us to have my daughter drink more water.  (And this was a full week after the reaction, so the medicine was already out of her system). We demanded that our daughter have an in-person visit, with a physician, immediately!

Following the telemedicine call, I filed an official complaint with the hospital system about the neglect of this physician’s office. And, it’s amazing what the words “official complaint,” will do.

Suddenly, the doctor’s office was contacting us to find out what our concerns were. Instantly, the doctor was available to see my daughter, in person.  All of a sudden, the pharmacy called to ensure that they’d given my daughter the right medication!  The words, “official complaint” had caused a movement!

Not only that, but during the in-person appointment, the doctor went to get a movement disorder specialist from another clinic, to help assess my daughter.  And it ended with a diagnosis, medication and a treatment plan including cognitive, behavioral and physical therapy, all of which are so much more than drinking water.

The points of this post are three-fold. The first is, despite COVID-19, that you should demand an in-person appointment with your doctor if a telemedicine visit won’t show the depth of your injury or illness.  You deserve it, you are entitled to it and you are paying for it! And though telemedicine is the way of the future for doctor’s visits, sometimes looking at someone through a monitor, just doesn’t equal taking their temperature, pulse or listening to their heartbeat.

The second point is that, even after COVID-19, if you want to see a doctor when you visit the doctor’s office, you should request to see a doctor.  And I know that may mean a longer wait. But, if it won’t adversely affect your condition to wait, then ask for a doctor, if that’s your preference.

And lastly, to all of those who have survived the horror of dropping off your loved one at the hospital, only to wait hours for word on their condition, God bless you! I know that some are enduring this trauma for weeks at a time, and I pray for peace, comfort and healing for you and your loved ones.

Without Hydroxychloroquine, What Do Us Lupus Sufferers Do?

I’ve been taking hydroxychloroquine for Lupus every day, for nearly 20 years.

Yes. That’s the medicine that is all over the news as a hopeful remedy for patients battling the Coronavirus. Many of whom are now receiving it.

It’s a strong medicine. It helps with my pain. And I hope it cures every single person who needs it. EVERY. SINGLE. ONE. I am also aware that Lupus is a strong, autoimmune disease in which your body’s immune system attacks your own tissues and organs.  And it can be deadly.

I’m praying that it is a cure for the Coronavirus. I’m praying that it will be a giant step in healing our world. And I’m not just saying “I pray it’s a cure,” I am actually PRAYING that it’s a cure.

I have enough hydroxychloroquine (also known as Plaquenil) to last for the time being, but like many lupus sufferers, I am painfully aware that the pharmacies are out of it. In fact, I took half my dose this week to conserve it, but was in pain, within days. So, I’m back to the full dose again, and trusting God.

When Dr. Fauci was answering questions on CNN this week, a viewer with Lupus who takes hydroxychloroquine, and was soon to run out, asked what he should do.

Dr. Fauci replied that this was an “unintentional consequence” of this epidemic and he made no promises or suggestions that there will be any available, any time soon.  And he’s right. There are thousands of unintentional, horrible consequences of this virus. No one intended to hurt us Lupus sufferers by taking away the medicine that allows us to have pain-free days and avoid hospital stays. It was unintentional, but it still exists and someone needs to do something about it!

If the Defense Production Act can be used to compel manufacturers to produce supplies, this should be one at the top of the list.  And the production amounts requested should consider both Coronavirus and the unintentional consequences of this outbreak.

I am the only Lupus patient I know that has never been hospitalized. And I know many who have died.

So, I’m asking for everyone to pray that hydroxychloroquine is a cure for COVID-19 and also pray for those who will be forced to go without it. Because our hospitals are already overwhelmed, and do not need a surge of Lupus sufferers, whose conditions have worsened. Stress is a major factor in Lupus flares. Imagine what that stress is doing to those who can’t access their medicine.

This virus does not discriminate. Lots of people are dying, many who are middle-aged.  This blog may be called lovingmiddleagedlife, but I am a lover of every age of life and I want us ALL to survive.  So please stay home and stay healthy.  Pray for a cure.  And please be intentional about it!

God bless our healthcare workers!

Click the link below to read about a Lupus patient who was “thanked for her sacrifice,” when her hydroxychloroquine refill was denied.

https://www.buzzfeednews.com/article/tanyachen/kaiser-permanente-lupus-chloroquine