By Francesco Longo
Q: Did you have time to prepare for the quarantine? If so, what did you do in preparation?
A: The short answer is no, we were not warned and couldn’t prepare. The situation evolved very rapidly, there were no warnings, and at times it felt like no one knew what was going to happen on the next day.
The first containment measure was issued on the 23rd of February, and it involved a small area of 11 towns in the Lombardy and Veneto region, as well as any individual who had been there in the previous 14 days. At that time, we were told that this would effectively prevent the spread, but the first signs of what was coming were already there. I remember trying to source a Cambridge mask, only to find out that they were out of stock. In fact, since then I’ve been unable to source a personal protection mask at all.
As contagion kept rising and spreading geographically, the containment measures grew across northern Italy, both in area coverage and in the intensity of restrictions, but it felt like the virus had a head start on us. Lombardy and a few more individual provinces were placed under lockdown on the 8th of March, but this information was leaked by the press the night before and thousands of people left immediately for other regions of Italy and other countries. As such soon after, the 10th of March, the whole country was officially involved in the containment measures, and the containment measures were also ramped up to the highest level.
Q: How long have you been in quarantine?
A: Formally, where I live in the Turin region, we’ve only been involved in the quarantine when the whole country was included, on the 10th of March. However, given that we lived a mere 150km from the contagion hotspot and that there were several confirmed cases at hospitals as close as 5km from our home, we effectively self-quarantined since late February to stay safe.
Q: Are you still able to get all of your meds during the quarantine? If so, how are you getting them?
A: We don’t know what’s going to happen in regard to this. I’ve already started to have some issues, as I’m running out of remote blood glucose sensors and there’s no estimated delivery date for replacements. As for the standard CF meds, from pancreatic enzymes to hypertonic saline and the like, I will need to restock in a month from now, as we are on a two-month restock cycle, and so far we’ve been told that drugs access will be guaranteed, but I feel that this guarantee is more geared towards the general public and that there may be supply issues for specialty medications.
Q: How are you sourcing your food and supplies?
A: Despite the news speaking of quarantine, it’s not exactly that. It’s more akin to an economic and social lockdown. People can still leave the house for these reasons: to buy food and essential necessities; to buy drugs; to commute to work; to provide assistance to relatives and for medical emergencies. Currently, only supermarkets, pharmacies, some convenience stores, and essential public services and manufacturing plants are operating, with few exceptions, but going out to walk the dog or to buy a replacement light bulb is allowed.
Q: What is happening when people with CF need care and what does the reallocation of CF health care providers look like? Are you able to get in touch with your doctors in the event of an emergency?
A: Since late February, all my regular appointments were postponed indefinitely. I attend both a CF clinic attached to one hospital, and a transplant center attached to another, as I’m on an active transplant waiting list, and both hospitals are now fully involved in Covid19 management. In Lombardy, the hardest-hit region, I’ve been told that the CF ward has been re-designated to house Covid19 patients since they’re desperate for beds and equipment.
This goes beyond CF, as oncology patients, immunosuppressed patients, and all other patients with chronic healthcare needs are now told to not go to the hospital unless absolutely necessary, stay at home, and wait until the situation is back to normal. Unfortunately, it seems that risk groups like us are not a priority amidst a healthcare crisis.
Q: What are your plans if you need care? Are virtual clinic visits an option? What has your CF center told you about seeking care and are they communicating with you regularly about your care needs and options going forward?
A: I am doing my very best to remain stable because I wouldn’t know what to do if I got sick. In the event of a medical emergency, we would have to visit the ER as usual, but all ERs are now involved with Covid19 patients and there’s a risk of contagion. They have not set up safe access for chronically ill patients. I used to be a very “high maintenance” patient, I’ve been waiting for a combined transplant for a long time now and I have several CF-related comorbidities such as advanced liver disease, multi-resistant bacterial colonies, diabetes... you can imagine. To manage all that I was having at least weekly checkups, sometimes twice a week, but now it’s been three weeks since the last one and it seems that it’ll be at least another three weeks until the situation starts to improve and hospitals can go back to a more normal schedule. In case of need, I’ve been told to call beforehand if possible, but I fear that I might have a critical situation since it’s happened before, and find an overflowing ER with overworked, tired staff.
Q: How are the isolation protocols for CFers different, if at all, compared to other people in isolation? Are you completely isolated from others or are friends/family visiting you in your home?
A: The government hasn’t issued any formal guidelines for CF patients or any other risk groups beyond the recommendation to stay at home. Our patient’s association and some individual clinics are recommending the standard levels of precautions for CF patients: washing hands regularly, avoiding contact with people who might have been exposed to the virus. On top of that, there’s a strong recommendation to stay at home and to avoid hospitals unless absolutely necessary. Then again now that everything is shut down we should be safe.
Before that, many patients were still going to work until the national lockdown, and unfortunately, some working in supermarkets or manufacturing still are. There hasn’t been any mandatory work leave for risk groups, it’s up to general practitioners to decide on a case by case basis if they certify the need for a preemptive work leave or not.
Q: What is the CF Italian community like? Are y’all pooling resources? Are you utilizing online talking and video chat? What does psycho-social support look like right now?
A: There are about 5000 CF patients in Italy. We are fragmented, as with everything else, in Italy, we have strong regional and provincial differences. With the Covid19 situation, while here in the north where most cases are and hospitals have been operating at capacity for days, we are completely shocked, in the center and south, on the other hand, it still looks like the situation is exaggerated by the government and it’s not that big of a deal. Either way, CF clinics have put non-urgent appointments on halt indefinitely all over the country.
There hasn’t been any specific initiative to face this situation together, patients are relying on their local clinic’s advice more than anything else. I have witnessed a lot of worry and stress, especially because many were caught off guard and were unable to source personal protection masks and disinfectant; parents were concerned with sending their CF children to school but fortunately, schools were closed nationwide early on. Adults patients, I feel, are left to fend for themselves as best as they can, whether it’s with their work situation or their particular health situation.
Q: What advice do you have for people with CF around the world who are wondering how to prepare for this scenario?
A: I would say to hope for the best but prepare for the worst. When it starts, there are hardly any signs of how bad it will get, and there’s no way to predict how quickly things will evolve. Here it all happened so quickly and unexpectedly, the situation went from normalcy to major crisis in ten days, it’s hard to explain how it felt. It was like we were watching an apocalyptic movie, but it was the news channel instead.
During a healthcare crisis like this, some things cannot be helped, for instance, we were not prepared to see our dedicated spaces in the hospitals disappear and our doctors having to tell us not to come for checkups, but it happened and now it must be endured.
I believe it is of the utmost importance to avoid catching this virus, as it seems to involve the lungs in a particularly nasty way, that can cause permanent damage. It also seems that having other health issues correlates with higher morbidity. Doctors have remarked that if “bilateral interstitial pneumonia” develops, patients can be expected to spend weeks on mechanical ventilation, which would be terrible for our lungs. Beyond that, if the situation evolves to a point where there aren’t enough ICU beds for everyone, doctors and experts have already said that they will be forced to prioritize younger, healthier people with a better outlook over the elderly and people with preexisting conditions. This is shocking to hear and to just think about it. It’s keeping me from sleeping at night. Because of all this, I feel that the only thing I can do is take preventive measures as seriously as possible. While I may not know how I’ll manage to go on for a month or two without regular check-ups, I do know for certain that I do not want to catch this virus, and I believe that I have a great degree of control over that.
Beyond the medical considerations, the socioeconomic situation is also looking dire. People are scared and are buying all sorts of supplies, there are many things which we use every day without much thinking, but that you would immediately notice if you ran out of them, such as distilled or sterile water, disinfectant, moist towelettes, toilet paper... this kind of necessities has become hard to find. Food doesn’t seem to be an issue thankfully, and hopefully, that remains so.
And again, the most obvious issue is with personal protection masks, you want to have some readily available, especially if you’ll need to leave the house for work or medical emergencies. Antibacterial soap and hand sanitizers are at a premium too.
Q: Are transplants and other surgeries still occurring? Are there any plans to handle these scenarios in the event the quarantine lasts longer than a few weeks?
A: By decree, all non-urgent surgeries have been suspended since they are redirecting the operating rooms staff and equipment to the intensive care units instead. In some hospitals, ICUs are working at full capacity and above, which is an unsustainable situation for a hospital. The worst affected hospitals have had to transfer non Covid19 patients to other facilities.
A news story came out today and it seems that they are in fact still performing several transplants one week into the crisis, in particular, 12 transplants were performed this past week of which one bilateral lung tx. I'm amazed, to be honest, there hadn't been any information on tx activity previously.
As grim as it is, I wanted to add that personally I’m not living much differently than before: because it was already the flu season and I was staying at home most of the time, I wasn’t very affected by the lockdown. Many other patients are having a harder time, but they understand the risks and the need for precautions.
The worst affected from this situation seem to be healthy people, as they both don’t understand the dire implications of a healthcare system operating over capacity for risk groups like us, and many young people who have said that they don’t care too much for this virus as they think they’ll survive it just fine. In that regard, patient 1 is a 38-year-old male who used to compete in multiple sports and work out regularly, as healthy as they come. If anything, someone like him should’ve barely been affected, and yet he spent nearly three weeks on mechanical ventilation. Doctors are also warning that as the disease progresses, younger people start to come in for admission in ICUs, as it seems that the elderly were affected earlier but now younger people are also starting to get more sick as time passes. Everyone must pull together and help contain the spread of this pathogen, no one is immune, and while not everyone may fear for himself, everyone knows someone else who may be in great danger if exposed. There’s only so much government can do without people’s cooperation. We need to fight misinformation and raise awareness. I appreciate the opportunity to share my experience with the CF community at large, and good luck to us all.
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.