By Francesco Longo
A few weeks ago CF Roundtable interviewed Francesco Longo about his experiences living in lockdown in Italy in the early weeks of the COVID-19 pandemic. Below is an update on how life looks now. You can read the original interview in the Spring 2020 issue of our newsletter or on our blog.
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We are now six weeks into the lockdown here, and things are starting to look better, although looking forward, the collective and dominant sentiment is uncertainty. While national and regional governments argue about how we will move on from the lockdown, in what is likely to be a gradual, phased process, it’s clear that lasting and significant lifestyle changes will have to be implemented for the general population. On the other hand, for many CFers who were already well trained in community hygiene and contact precautions, it may well be just a return to “our normal”. If anything, implementing these precautions among the general population will protect us from both COVID-19 and all other community-spread diseases we have always worried about. Compliance, awareness, and education of the general population will be key. Regardless, the measures implemented will only work if a large majority of people follow them.
Previously, I wrote about the initial outbreak here in Italy and expressed my concern with accessing healthcare during a viral pandemic when hospital resources are stretched thin and renewing my hospital drug prescriptions, which are now due. Since then, I’ve had a telemedicine appointment with a training nurse to set up a new insulin pump and glucose monitoring system. We were both on time, but unfortunately, our communication was impaired by a very lackluster internet connection. We experienced several dropped connections, missing sound, and poor video quality. However, with patience, we were able to complete the setup and rehearse the training in a few hours. Admittedly, this was neither a significant medical necessity nor anything too complex, but my experience highlighted the problems with an idea that has recently been discussed often by many in the CF community—replacing most hospital appointments with remote video calls and telemedicine instrumentation. Based on my experience thus far, I’m afraid that the internet infrastructure in our country, as it exists currently, just isn’t up to speed. High-bandwidth fiber optics connections, while available in most large cities, are not available in small urban centers. Further, during this lockdown with everyone working remotely from home or consuming online media entertainment, we learned that the network infrastructure was not capable of meeting network demand under heavy usage.
Additionally, there have been talks about providing patients with home instruments (oxygen meters, glucose meters, etc.) to perform basic clinical monitoring autonomously. This is nothing new for us as many of us already have those instruments, including home spirometers. I also suspect most CFers have had previous experience with telemedicine, as it’s often a simple phone call to the CF care team. Still, I highly doubt that implementing telemedicine for the general population in the short term is feasible. It’s unfortunate because it means that at the end of the day, when necessary, we still have to visit a hospital, regardless of a viral outbreak and the associated risks involved.
Recently, I was granted expanded access to Trikafta (which is not yet approved for usage in the EU) due to my status on the active transplant list. My diagnosis of CF-related liver disease required blood analytics for Trikafta use which can’t be done remotely and therefore required a trip to the hospital. Because My CF doctor works at a hospital with a large number of COVID-19 patients, he arranged an appointment with my hepatologist, who works at a different hospital, designated “COVID-19 free” to get these tests done.
To maintain their status as a “COVID-19-free” hospital, several precautions and restrictions were placed. At the entrance, a group of heavily PPE-covered nurses takes your temperature, makes sure that you go in alone unless absolutely necessary, and takes note of where you’re heading. Walking into this now empty hospital felt rather odd but reassuring at the same time. Arriving at the ward where transplant patients are followed, I noticed some immediate differences. The first door was now locked and I had to be buzzed in. Once inside, where normally there are two open and annexed waiting rooms, there was now only one with a few patients already waiting, hiding behind their masks. Upon arrival, you’re registered and required to sign a release stating that you do not have flu-like symptoms, are not supposed to be in preemptive quarantine, and have not been in contact with people who were diagnosed with COVID-19. Patients were being called in one at a time, and a nurse would pop out periodically to wipe the door handle with Clorox. I was finally called back, had my blood drawn, and sent back out to await the doctor's response. Two hours later I was called back to learn that my AST/ALT numbers were good—I had the approval to start Trikafta, provided that I return in a week to see how my liver responded to the new drug.
As for my prescriptions, I’m still waiting for my team to renew them and they’re due in a few days. I know they have their hands full with the COVID-19 patients now and, to be fair, my doctor managed to get my expanded access to Trikafta, despite working many night shifts. I’m confident they’ll have my prescriptions renewed soon.
Going forward, we will need widespread adoption of community hygiene practices for everyone’s protection, as well as safe access to healthcare resources for those people who need it on a regular basis. Many people don’t fully grasp how insidious contact transmission can be and don’t know how to properly use masks and gloves. It’s not enough to mandate face covers if people don’t know how to wear them. By the time the lockdown ends, unless it’s extended again, chronic patients in Italy will have been deprived of non-urgent care for two months. Currently, there isn’t a clear plan for resuming non‑urgent care, despite the decline in numbers of COVID-19 patients in ICU for the past several days. Unfortunately, we are still operating with a short‑term crisis management attitude rather than accepting this as the new normal.
About the Author: Francesco is 27, living in Turin, Piedmont, mostly spending time at a PC whether it's playing video games, watching movies or series, or listening to podcasts and music. He's been on an active transplant list for two years and four months now.