Let’s Talk About Why Managing PH Feels Like Herding Cats
It turns out that National Cat Herders Day is an occasion people celebrate. Observed on Dec. 15, it’s a day to recognize people who achieve the impossible as part of their jobs or positions, and do work that requires incredible feats of willpower and organization, and a seemingly endless amount of patience.
I’m not much of a cat person. Nevertheless, my chronic disease care involves herding a lot of cats. And it exhausts me.
The cats I herd often resemble lions and tigers and bears. And they make a lot of demands on my efforts to manage pulmonary hypertension (PH). Oh, my!
Living with a chronic illness or rare disease isn’t easy, but my doctors did a good job preparing me for the toll the various physical symptoms would take on my body when I was diagnosed in 2016. What they didn’t prepare me for were all the cats I’d have to herd to stay on top of this disease going forward.
There’s appointments with multiple specialists. Numerous prescriptions with different doses and schedules. Devices I have to keep track of and keep charged. The to-do list can seem never-ending. And I haven’t even mentioned making time for rest, exercise, my job, or time with my partner, my friends, and my family. Life with PH includes good days and bad days, physical and emotional side effects, and symptoms that flare up at a moment’s notice.
In my experience, the to-do list is at the root of what makes things so taxing and time-consuming, because they drain my already depleted energy resources. Every day, every month, and every quarter, something related to this disease needs herding. I’ve tried my best over the past five years to manage my PH, to go with the flow and accept the adjustments I’ve been forced to make to prioritize my health.
A research article published this fall in the journal Health Services Research examined how the administrative burdens, such as scheduling appointments, billing and insurance issues, and prior authorization requirements for prescriptions, that patients face can make it harder to access needed or timely care.
The study found that, “… disability status had the strongest association with administrative tasks … and burden,” when the researchers adjusted for demographics. As a disabled and chronically ill person, I have multiple needs of the healthcare system, and those inevitably translate into more administrative tasks.
Patient advocate Kayle Hill, who was interviewed about the study for an op-ed published at Teen Vogue, said having to herd these administrative cats was like having “another full-time job.” Another patient interviewed for the piece called it an “almost constant” burden.
I couldn’t agree more.
Consider my medications. I take four different prescriptions to manage my PH, in addition to my prescribed oxygen therapy. There have been times when I’ve encountered problems with a prior authorization requirement for my Revatio (sildenafil) prescription. If there’s a hold on the refill, and I don’t have enough medication on hand, I must ration the pills until the authorization requirement is lifted and the pharmacist can process my order.
At times, I’ve spent anywhere from 30 minutes to over two hours on the phone getting transferred from the pharmacy to my insurance company and back again, all in an attempt to access medication that I must take three times a day. This burden takes away time from my job, saps my energy, and truly tests my patience.
And the phone calls to order the medical supplies I need can sometimes rival the number of conference calls I make at my day job.
I see multiple specialists to treat my PH. They all require separate appointments and each one has their own scheduling protocol and billing system. I try to book as many tests and appointments as possible for the same day when I get my quarterly checkup. That way I only drive out to the hospital once, pending the need for any follow-ups or referrals.
Even when I try to slow down and put my health first, the burdens that come with managing my PH never rest for long.
Does anyone else think doing all the administrative tasks required to manage a chronic illness is like herding cats? Please share in the comments below.
Follow Mike on Twitter: @mnaple.
Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.