Over the past 2 years the COVID-19 pandemic has in many ways had a profound impact on our lives, and this is especially true for patients living with pre-existing lung diseases such as pulmonary fibrosis. In this episode of Spotlight on Pulmonary Fibrosis, we hear from Dr. Veronika Müller, a pulmonologist from Hungary, and Olga Drapalova, a patient with myositis from Czech Republic, who talk about the COVID-19 pandemic, vaccinations and how it has affected those living with Pulmonary Fibrosis. They also discuss the lessons learnt from the pandemic, and how these experiences can be used in the future.
MOD (0:00): Welcome to this episode of “Spotlight on Pulmonary Fibrosis”, in this episode we are going to be talking about learnings from the COVID pandemic. And here with us today are Olga Drapalova, a patient with myositis from the Czech Republic, and Dr Veronika Müller, a pulmonologist from Hungary. Thank you both for joining us today.
Dr V. M. (0:20): Thank you and Hi.
O.D. (0:22): Thank you.
MOD (0:23): Hi. Ok, well were going to start with you Olga, as a patient and patient organisation representative, could you please tell us your story? When and how you were diagnosed and why you chose to become a patient advocate?
O.D. (00:37): Yes, Thank you very much for this question. It is my pleasure to share my story. First of all, I would like to say that I am a patient. Eight years ago, I was diagnosed with polymyositis, (?) antibody positive anti-synthetase syndrome and interstitial lung disease. At the time, I was an inspector of the secondary cycle of the European schools. I travelled a lot. I was responsible for the European baccalaureate in Geography and the Czech language, that means it was a very hard job. At the same time, I struggled with a rare disease that is potentially very dangerous.
After retiring I was dealing with a new challenge and my rheumatologist asked me, if I was willing to work for a patient organisation. I didn’t hesitate at all and answered him in agreement. Unaware of what it would all mean. I founded the patient group myositis, which operates under the umbrella of the
Leagueagainst the rheumatisms of the Czech Republic. As a patient advocate I contribute to patient awareness of rare diseases and current treatment. I help them to be active in communication with doctors, and thus I contribute to the development of appropriate treatment and above all to the improvement of the voice. This work for patient organisation is quite time consuming, but in this activity I have found a new meaning in my life, and it helps me to cope with my illness, myositis.
I have established international cooperation with (the) patient association, I have participated in (an) international project organised by IMAX, international myositis assessment and clinic studies, and I have prepared an information leaflet for patients, an information brochure, We live with myositis and we are currently launching the exercise with myositis project. Moreover, I am a member of the international team that is preparing the patient program for the fourth global conference of myositis, which will take place in Prague in June 2022. Concerning the second question, the topic of the current pandemic is extremely important to me, because I am aware how dangerous COVID 19 infection is to be for patients with lung disease.
MOD (03:50) : Yes, you are wonderful, you are doing a lot of wonderful work, it sounds like a lot of work but extremely important. Turning to Dr Müller, could you please tell us about your role as a pulmonologist, how did it all start and why did you decide to focus on pulmonology in particular?
Dr V.M. (04:09) : Thank you so much, this is a great pleasure to take part in this discussion and I am a pulmonary physician since 1999, and previously I was working as a researcher here in Hungary and in Germany, and the clinician in a central clinical laboratory for five years and I joined the pulmonary department, actually accidentally, as my boss at the pathophysiology transferred to the department of pulmonology and at that time the actual boss or head of the department did offer me a position, so I specialised in respiratory medicine and later in clinical oncology. I have a continuous interest in systemic autoimmune diseases since my laboratory specialization and it continued over the years in respiratory care and oncology. Systemic auto immune diseases, or also known as connected tissue diseases, are often associated with different lung manifestations including different lung infections, airway diseases and also interstitial lung diseases. This work with connected tissue disease patients was a great opportunity to start more closely in the field of interstitial lung diseases, so we first introduced the multidisciplinary discussions at our university for interstitial lung diseases in 2015, and now our department at the Semmelweis University is (a) reference centre for ILD’s and I am leading now a big clinical team for this discipline, subdiscipline in pulmonary medicine, including different forms of lung fibrosis.
MOD (05:47): Obviously you are an expert in pulmonary fibrosis. What is it like to work closely with the patients who have this disease?
Dr V.M. (05:53): Actually we have now a big experience with this kind of patients and we are also very much interested in contributing to patient organisations and continuing our development, mainly focusing on the needs of the patients with these diseases.
MOD (06:13): We’ve been living with the COVID pandemic for almost two years now as we all know. Today we are going to discuss this special journey from the perspective of patients with pulmonary fibrosis. How it has affected their daily lives and what we’ve learnt so far and how we can use these learnings to overcome challenges. My question now to Olga: What have been the biggest challenges for you as a pulmonary fibrosis patient during the COVID 19 pandemic?
O.D. (06:40): Thank you very much for this question. As you know the years 2020 and 2021 are characterised by the COVID 19 pandemic, which has claimed million deaths worldwide. High mortality is associated with acute severe respiratory failure, therefore patients with pulmonary fibrosis face many problems, many challenges, one of the main challenges is the fear of a COVID 19 infection, there is a high risk of severe course of this illness, or side effects, and in addition it can lead to death. It’s important that patients avoid the virus and try to not infect it. I can mention other challenges: Isolation, patients don’t associate with relatives and friends. It often leads to loss of social contacts, which can lead to mental problems, preventive measures include wearing masks or respirators that cause respiratory problems or challenges in patients with pulmonary fibrosis, and maybe the main challenge during this pandemic is access to doctors during the pandemic, its really a major issue.
MOD (08:31): Right and on that note my question to Dr Müller, how has your job as a pulmonologist changed during the COVID 19 pandemic, and how has it changed how you interact and monitor pulmonary fibrosis patients?
Dr. V. M. (08:53): COVID pandemic profoundly changed the work of pulmonologists in March 2020 in Hungary, my department started care with COVID patients, as we were the first who cared for these patients in our University, and since then we are one of the biggest providers for COVID patients. But life did not stop for patients with other diseases, so we introduced several changes to maintain pulmonary care for patients with other lung diseases, including lung cancer, asthma or interstitial lung disease, just to name some. It was a big help that the legal background changed in our country, so tele medicine became a possibility, to provide patient centered care. It was of utmost important for me and my team to continue that care with ILD patients including pulmonary fibrosis. We did provide patients with written information to be saved during the pandemic, before the vaccination. This included measures on how to protect themselves, information how to exercise, we included possibilities on how to communicate with the medical team and how to get access to regular fibrosis medications.
MOD (10:06): We all had to change our lives a lot over the past two years. And of course, it’s also the case for patients with pulmonary fibrosis, their families and physicians. And as Olga said, there are lots of other issues that are then connected to it, such as psychological issues. Olga, I believe that you have some questions for Dr Müller?
O.D. (10:26): Yes of course, why are pulmonary fibrosis patients considered to be at a higher risk for developing severe COVID 19?
Dr V.M. (10:35): Pulmonary fibrosis is often associated with deficient lung regeneration. It means we have to prevent injuries to the lung. Viral infections, including the SARS Cov 2, inducing severe lung damage to a big proportion of our patients, so if infected, lung fibrosis patients are at very high risk for developing more severe lung damage. Unfortunately, their lungs cannot repair themselves as well as healthy lungs, so permanent functional decline might persist. It means that patients cannot do as much following COVID then they could before the infection. All personal protective measures should be used, meaning social distancing, when airborne infections are common, wearing masks, covering the nose and mouth, and regularly washing of hands, and also disinfecting them.
O.D. (11:34): Next question. Are there any statistics of the number of pulmonary fibrosis patients, who have contracted COVID 19 in Europe. If so, what are the outcomes?
Dr V.M. (11:49): This is a tough question and it is very difficult to answer. There are some studies addressing the outcome of pulmonary fibrosis patients and COVID 19. It is obvious that lung fibrosis is a risk factor for less favourable outcomes. Most important risk factors are the same as for subjects without lung diseases, including HIV and Comorbidities. What are comorbidities? They are cardiovascular diseases, like hyper tension, it is diabetes, and a very important comorbidity is obesity. We see it in our daily lives that obesity is really a big challenge for patients with COVID 19, and since vaccination is available, the outcome in our centre for ILD patients is much better, most patients have less severe symptoms, and we did not lose any ILD patient with severe COVID who did get the vaccination. Our centre is always emphasizing, in Hungary now the third vaccination is already available, that they are getting their third vaccine as it is available and it gives the best protection to date. Actually data, I think, may vary according to different countries, so I cannot say how many patients suffered from COVID 19, who have lung fibrosis, but I think we have now measures on how to prevent the infection.
O.D. (13:24) And the next one, what precautions can pulmonary fibrosis patients take to protect themselves from contracting COVID 19?
Dr V.M. (13:34) The most important measures are prevention from airborne infections in general, this includes social distancing, meaning not going to crowded places, for example, choosing shopping times, or public transport, excluding the rush hours. It is extremely important to wear face mask, preferably surgical or FFP 2, in closed places covering the nose and the mouth. I see it a lot of times that patients or even other healthy people are not really wearing the face masks properly, so it is not covering the nose and mouth simultaneously. Additionally, washing hands and disinfecting hands regularly is a very important measure. It is also very important to keep a healthy lifestyle, including not smoking, which means also avoiding passive smoke exposure, we also recommend taking vitamins, which might be insufficiently present in our diet. For example, I am personally recommending vitamin D and C intake and zinc for our patients in the wintertime. Additionally, a well-balanced diet is also very important, with fresh vegetables and a sufficient intake of proteins. Regular exercise including daily breathing exercises are very important, this is also excellent to preserve lung health.
MOD (15:08): Speaking of protection, during the COVID 19 pandemic, many hospitals have had to focus on treating patients affected with COVID 19, and the risk for infections made some patients hesitant, indeed, to attend their appointments with their physicians. What is the real impact of this situation is the question here. Olga, how did your interaction with your physician change during the pandemic? Did you communicate through tele-medicine, for instance?
O.D. (15:36): Thank you very much for the question. It is a very interesting question, but my interaction with my rheumatologist and pulmonologist didn’t change during the pandemic. I visited physicians in three-month intervals, I always had an appointment, which was always at a certain time, to avoid contact with other patients. I don’t know if tele- medicine is suitable for patients with pulmonary fibrosis. Physicians need a blood test of muscle strengths and check of lungs, listening with stethoscope and spirometry, and gas testing oxygen content in the blood and so on.. Of course, I am aware that there are pros and cons of this health care. Advantages, for example, are convenient cost saving, its efficient, it eliminates or reduces trouble and promotes preventive health. I would like to underline preventive health. And disadvantages: technological barriers, insurance coverage issues, regulatory obstacles. I think that according to my opinion, it is not applicable in all situations, and there are personal barriers. I know that it is most cost effective, but may be clinically risky. It is only a partial solution to the complex of challenges of delivering health care. I know that it reduces the chances of infections during the pandemic, improves documentation and data collection, the documentation increases the legal protection for both parties. But as I mentioned during my speech, it only promotes preventive health. This is my opinion on tele medicine.
MOD (17:40): That is the case from your side. Let’s ask Dr Müller now, what are the biggest challenges for patients, when it comes to accessing standard health during this pandemic?
Dr V.M. (17:51): I have to agree with Olga, this was really a hard time, and I think it has challenged both patient and provider sides. COVID19 has really impacted key components of the diagnosis and management of fibrotic ILD’s and talking about ILD’s especially. For patients with this disease it is very important that there were sometimes restricted times with access to diagnostic procedures, and we have new uncertainties in the use of common ILD pharmaco-therapies, because we could not monitor so closely our patients, we have also limited availability to monitor the disease severity and the presence of medication adverse events. So this is definitely a hard time, however, we had to provide our patient care, so, actually, what we could say, that there were some possibilities also during the pandemic, like introducing tele-medicine in the multi-disciplinary discussions, so this was something we could really continue and introduce, and we would really like to maintain it, this is more like an internal medical issue, but it is also very important that the patients who are already in the diagnostic care, that they are getting the diagnosis and the treatment. An additional important issue is that we have a lot of patients on anti-fibrotic therapies, which have some kind of side effects, or known side effects, which should be managed, and there was an overlap between these adverse events of the medications and the symptoms of COVID 19, including diarrhoea or fatigue, or loss of appetite, and this was a big issue that sometimes there was a delay in the early identification of the infection, so this was a big challenge for us as a medical team. In addition, maybe it is also an important issue and it might change from country to country, this was a big possibility for us, via tele-medicine, we could prescribe the medications so patients did not need to come to the hospital or even to the nearest office, we could make it via some newly introduced form, so we could put the recipes into the cloud, so the patient just goes to the pharmacy with their specific numbers and they could get the medication, so this was a big opportunity for us to provide our patients with regular medications.
MOD (20:41): Big challenges but also lessons learned, some good ones for the future as well. Olga, you have a couple more questions for Dr Müller ?
O.D. (20:49): Yes. Some patients are still afraid to visit the doctor. What advice can you give them?
Dr V.M. (20:55): Actually, I have only advice from my department, we really asked our patients to stick to their strict appointment, meaning not arriving too early to the appointment, and really, we try to stick to the time limit so that they did not spend too much time in the healthcare facility. We also try to keep visits as short as possible and also offer tele-medicine to patients without new symptoms, so who were stable and did not need any medical care, who are always advised to come to regular visits, but nothing new, they were already running without new symptoms and they knew about their disease, we just advised them to take the offer of our tele-medicine service. In Hungary in all medical facilities, healthcare professionals need to wear masks and in pulmonary departments, we are centres for higher infection risks, also patients are requested to wear masks covering their nose and mouth to prevent infection during their visits. Additionally, at entry all patients need to disinfect their hands and it is also available at multiple locations at our facility. I think that when you are sure the medical staff is doing everything they can to prevent infections then you can be safe and come and visit your doctor and get your regular check-up.
MOD (22:38): Despite the many challenges that the COVID 19 pandemic has caused, there is positive news on the other hand, scientists around the world have joined forces and worked together to develop solutions that will enable us to exit the pandemic eventually, namely the COVID 19 vaccines. Dr Müller, why is it important, in particular for patients with pulmonary fibrosis, to get vaccinated against COVID 19, and are the recommendations the same for patients with different causes of pulmonary fibrosis, for example rheumatic disease with ILD , auto immune diseases with ILD and IPF, for instance?
Dr V.M. (23:17): The vaccination program started in early 2021 in our country, I am quite sure that in the region most countries started vaccination programs during this time period. We had several possibilities for vaccination in our country, it was of high interest to give guidance to patients when to get the vaccine and which one to choose. Nearly one hundred percent of our lung fibrosis patients are vaccinated and we continue to motivate all patients, and very importantly, their families, to get the vaccine. Working since nearly two years with COVID, me and all my pulmonary physicians know that COVID disease is a disaster, especially for patients with lung diseases, so we have to take all measures to prevent the SARS COV 2 infection, and being vaccinated can prevent the most cases, in most cases the development of severe disease. I can confirm that patients who are now taking their third vaccine in Hungary are having much lower risk for developing a serious disease, and we did not observe any adverse effects from the vaccinations, so in my opinion it is safe and recommended.
MOD (24:35): Very very good news, but why is it important to continue to take precaution’s even though you are vaccinated?
Dr V.M. (24:45): Even if you are vaccinated, it doesn’t mean that you cannot get the SARS COV 2 infection, it is only preventing you from having a severe disease. It is really mandatory to also take precautions when you are having a lung disease.
MOD (25:06): The pandemic is still ongoing of course and it is important to keep on enjoying life with family and friends and do things that make you happy, as Olga was saying earlier on, it has been a big challenge there. Is it possible to do that in a safe way is the question? Olga, you have a couple of last questions for Dr Müller.
O.D. (25:25): For patients who wish to visit friends and family or simply go on holiday, what should they think about in terms of travel arrangements and protective measures?
Dr V.M. (25:40) I think visiting friends and family is very, very important for everyone, especially for patients who have a chronic disease, this is really a very important factor for joy and happiness, so first you should always follow the local regulations from your country, this is important, and they may change over some weeks, if going abroad, you should always look up the regulations from the country you are vising, and also checking travel conditions, including what maybe flight companies, railway companies require. Meeting friends and family is always important, and if all precautions are done against getting infected, the visits are definitely recommended. Optimal meeting includes family and friends who are also vaccinated and not visiting with respiratory symptoms, so from the patient and from the family or friends’ side.
O.D. (26:40): Moving forward, what should pulmonary fibrosis patients have in mind when the society is returning to normal, but COVID 19 is still around?
Dr V.M. (26:54): I am since many years a pulmonary physician, and I know that airborne infections are always returning, especially during winter times. I think that airborne viral infections may be just going back to influenza, are always present. We have now decades of influenza vaccination behind us and pulmonary physicians always recommend it to patients at high risk. I am sure that SARS COV 2 and COVID will not disappear, but we have now possibilities for prevention. I think we have learned in the society that personal protection includes social distancing, avoiding crowded places, wearing masks, and washing and disinfecting hands always helps, additionally, a healthy lifestyle, including a well-balanced diet, regular physical exercise, breathing exercises are also essential. As a medical doctor I also advise to take the prescribed medications regularly and contact your treating physician when worsening of the disease or adverse events are noted.
MOD (28:03): On that note we will leave it there and I would like to say a big thanks to Olga Drapalova and to Dr Veronica Mueller for joining us today. Thank you so much!
Dr V.M. (28:12): Thank you so much, it was just a great talk
O.D. (28:16): Thank you very much, it was very interesting interview. Thank you and goodbye!
MOD (28:22): It was very interesting, thank you so much.