My Experience As One of the Only CF Patients Battling Covid-19
Updated: Mar 20
By: Daniel James-Lacey Mcinerny
Jessika Biele and Ella Balasa video chatted with Daniel to discuss his recent diagnosis and experience with Covid-19. In London, where Daniel lives, there is a slower response to the panic and people are going about as if nothing is happening. Some of Daniel’s neighbors are choosing to self quarantine, but he mentions that it is tough to stop a 24-hour city. In London, security guards are protecting the soap aisle in grocery stores as well as hand sanitizer stations stuck to the walls of hospitals.
Please remember that if you have been exposed to Covid-19 recently or you are experiencing symptoms such as fever, cough, and/or shortness of breath you should contact your CF care team/doctor immediately.
Q: First, give us some background about you and your cystic fibrosis? Age, medications, lung function, manifestations, daily care, etc. Just some things so people know what it’s like for you daily.
My name is Daniel and I’m 21 years old, living in central London with DDF508 cystic fibrosis, CF-related diabetes, and Stevens-Johnson Syndrome ("SJS"). I was diagnosed with cystic fibrosis when I was four years old. Up until I was about 15 years old I was really only in and out of the hospital about once a year. Once I turned 15, I required more hospitalizations and even a port—PICC lines just weren’t cutting it. About two years ago, my health rapidly declined. I went from a baseline lung function of about 60% to a new baseline of 40% due to a colonization of Nontuberculous Mycobacteria ("NTM"). About six months ago, I had another decline in health that resulted in my new baseline lung function of about 25-30%. When I’m having an exacerbation or not feeling well, my lung function has dropped down to as low as 17%. I am on two liters of oxygen nearly constantly. I live independently and enjoy hanging out with friends and family and attending university, despite these restrictions. I’m currently unable to be listed for transplant due to my NTM colonization, but was able to receive Symkevi in January. I haven’t seen any significant changes on Symkevi, but I can more easily shift mucus around in my lungs. My team is working on an appeal to get Trikafta on compassionate grounds. We are hopeful Trikafta will be able to help a little bit more.
Q: What led up to getting tested for Covid-19?
Well, I wasn’t feeling great for about a week. My body felt heavy and I didn’t feel flu like, but I felt chesty, like I do when I know I’m going to need IV antibiotics. My team is pretty amazing—when I feel like I have an infection, they are prompt in handling it. I called on Thursday, March 5th and by Monday, March 9th I was in a hospital bed with my port accessed and IV antibiotics infusing. On the morning of Tuesday, March 10th, I woke up with a fever, sore throat, and a headache all at once, which is pretty bizarre for me. We were warned on the ward that if we had flu-like symptoms we would absolutely be quarantined. My swab on Wednesday, March 11th came back for Rhinovirus. I was still confined to my room, but also told I could go home on IVs despite that diagnosis. However, Wednesday night, they also swabbed me for Covid-19. I woke up on Thursday, March 12th feeling really miserable and exhibiting flu-like symptoms. On Friday, March 13th the nurse warden came to my room completely gowned up—when the nurse warden comes to your room it's either very serious or you are in trouble. I thought for sure it was a joke because I really didn’t feel that bad and I also have a really fun relationship with my care team.
She came in to tell me I tested positive for Covid-19. I was absolutely terrified. I’ve spent time online, like everyone else, and all I had been reading was that I was part of the population most susceptible and likely to die from Covid-19. Was I waiting to die? Should I be feeling worse than I am? The team moved me down to the ICU, mostly for observation. They really did not know how long I'd had the virus and therefore not sure what to expect. We had no way of knowing whether or not I had picked up the virus in the hospital or before I arrived at the hospital. On Saturday, it was confirmed yet again that I was definitely positive for Covid-19 but since there was no protocol, I just continued the IV antibiotic treatment I was already doing while we waited in limbo. The team had no other choice than to wait and see how it would affect me. I didn't get any special medication, just my routine antibiotics for a standard CF exacerbation (Amikaycin). The next few days I improved a great deal—I had less flu-like symptoms, my throat got better, and my blood sugars became more manageable. We retested again on Monday, March 16th and I was still positive for Covid-19. In the adjacent ICU room I could hear an elderly man being placed on a ventilator due to Covid-19 and my heart broke. I had survivor's guilt and requested to be moved from the ICU as I felt I did not need the resources there. On March 17th, I was taken home by ambulance (safest way to avoid contaminating other people), for self isolation and told to continue my IV antibiotics while monitoring any change in my symptoms. Now, I feel pretty good and I am happy to keep people updated on my condition.
Q: We can’t even imagine how difficult the whole experience was, especially considering the lack of information and speculation on the internet. How did you feel and handle it, mentally?
It was really hectic asking questions, waiting for information, and then not being able to get answers.
There are no answers. The only thing I had was time, which was dangerous when there is nothing to do but wait.
I saw so many people posting about Covid-19; the deaths and those at high-risk. Each day the media highlights the number of cases confirmed overnight. I didn’t handle it really well at all. I kept asking myself “what did I do wrong?” and “how did I put myself at risk?”. The first case in London was diagnosed right around the corner from me and they were in the hospital at the same time I was admitted for an exacerbation. I really didn’t leave my house for a few weeks after that, except to get groceries and run errands. I did see my sister and my nephew, but that was part of the anxiety and source of confusion; we didn’t know where I had been exposed to Covid-19. If it wasn’t for the support of my friends, my family, and my team, I would probably be in a really bad place mentally. My friends and family have been in constant contact, keeping me in good spirits and sane. No one really eats in the ICU (except tube feeds) so my sister got someone to send food to me from outside the hospital.
Q: What would be your message to the CF community? What do you want people to know?
It took me a long time to think about what my message would be because I feel like I was lucky. To me, it was like the flu but I realize that it won’t be like that for everyone. I don’t want to spread false hope, but I do want to spread some hope. My advice is to take your time, breathe, take as much time as you can to really deal with it if you are diagnosed with Covid-19. Don’t think the worst. I know it is definitely in my nature to think the very worst outcome for a diagnosis, but it has never worked that way. We, as a CF community, are doing everything we can to stay healthy. I had this misconception that the virus itself kills, but it is the complications from the virus that can cause the serious problems. When I was being released, my nurse and I rationalized Covid-19 in that way: that my body has been through so much (sepsis twice and pneumonia) and this was probably the least dangerous thing I have had to deal with. I suggest having faith that our immune system does work. Be positive and have people that you can rely on. I really hope there will be more cases where people are going home and recovering, but it is serious, so just be safe.
About the Author: Daniel is 21 years old. He has goals that he's rushing to achieve. He has aspirations of being a support worker for young people in the future and still managing to stay immature and laugh while he can. Two of his favorite subjects in the world: Disney & Psychology. You can follow him on Instagram @lunglivedaniel.
A note about the interviewers: In Florida, where Jessika lives, most restaurants are doing take out only, the beaches are being monitored for groups over 10, and people are staying six feet apart. Grocery stores are open, but certain foods and toilet paper are scarce and she notices people being cautious. In Virginia, where Ella lives, schools and universities are conducting tele-learning indefinitely. Bars and restaurants are also serving take out only and very few cars pass by on her street.