{"id":22015,"date":"2019-02-13T13:58:54","date_gmt":"2019-02-13T18:58:54","guid":{"rendered":"https:\/\/www.med.unc.edu\/medicine\/?post_type=episode&#038;p=22015"},"modified":"2023-08-04T13:58:26","modified_gmt":"2023-08-04T17:58:26","slug":"lung-transplant-patient","status":"publish","type":"episode","link":"https:\/\/www.med.unc.edu\/medicine\/news\/chairs-corner\/podcast\/lung-transplant-patient\/","title":{"rendered":"Lung Transplant Patient Story &#8211; with Andy Nelson"},"content":{"rendered":"<div class=\"row  oscitas-bootstrap-container\"><div class=\"col-lg-7 col-md-7 col-xs-12 col-sm-7 oscitas-bootstrap-container\">\n<p class=\"lead\">Andy Nelson is a person who has idiopathic pulmonary fibrosis and received a double lung transplant. He shares his story here as part of our series, &#8220;Understanding Organ Transplant.&#8221; Andy talks about the progression of his illness, his journey to getting new lungs, and his recovery since the transplant.<\/p>\n<h4><b>\u201c<\/b>I progressed very rapidly. I\u2019ve gone through some serious events in that process. Yes, it is painful, but there is hope in every moment. Life has meaning and is purposeful even in those moments.\u201d<\/h4>\n<h4><i><\/i>&#8211; Andy Nelson<\/h4>\n<\/div>\n<div class=\"col-lg-5 col-md-5 col-xs-12 col-sm-5 oscitas-bootstrap-container\">\n<div class=\"image-section\">\n<figure class=\"thumbnail wp-caption alignright\"><img loading=\"lazy\" decoding=\"async\" class=\"size-medium\" src=\"https:\/\/www.med.unc.edu\/medicine\/wp-content\/uploads\/sites\/945\/2018\/12\/lung-transplant-patient-image2.png\" alt=\"image2\" width=\"300\" height=\"200\" \/><figcaption class=\"caption wp-caption-text\">Andy Nelson, heading to the gym post-transplant<\/figcaption><\/figure>\n<\/div>\n<\/div><\/div>\n<!--[if lt IE 9]><script>document.createElement('audio');<\/script><![endif]-->\n\t<div class=\"wp-playlist wp-audio-playlist wp-playlist-light\">\n\t\t\t<div class=\"wp-playlist-current-item\"><\/div>\n\t\t<audio controls=\"controls\" preload=\"none\" width=\"1118\"\n\t\t\t><\/audio>\n\t<div class=\"wp-playlist-next\"><\/div>\n\t<div class=\"wp-playlist-prev\"><\/div>\n\t<noscript>\n\t<ol>\n\t\t<li><a class=\"thumbnail img-thumbnail\" href='https:\/\/www.med.unc.edu\/medicine\/wp-content\/uploads\/sites\/945\/2019\/03\/lung-transplant-patient-story.mp3'>Full-Length Track<\/a><\/li><li><a class=\"thumbnail img-thumbnail\" href='https:\/\/www.med.unc.edu\/medicine\/wp-content\/uploads\/sites\/945\/2019\/01\/lung-transplant-early.mp3'>Early Signs of Illness<\/a><\/li><li><a class=\"thumbnail img-thumbnail\" href='https:\/\/www.med.unc.edu\/medicine\/wp-content\/uploads\/sites\/945\/2019\/01\/lung-transplant-reaction.mp3'>Reacting to the Diagnosis<\/a><\/li><li><a class=\"thumbnail img-thumbnail\" href='https:\/\/www.med.unc.edu\/medicine\/wp-content\/uploads\/sites\/945\/2019\/01\/lung-transplant-uncertainty.mp3'>Getting Through Uncertain Times<\/a><\/li><li><a class=\"thumbnail img-thumbnail\" href='https:\/\/www.med.unc.edu\/medicine\/wp-content\/uploads\/sites\/945\/2019\/01\/lung-transplant-finances.mp3'>Finances & Transplant<\/a><\/li><li><a class=\"thumbnail img-thumbnail\" href='https:\/\/www.med.unc.edu\/medicine\/wp-content\/uploads\/sites\/945\/2019\/01\/lung-transplant-hope.mp3'>Hope with New Lungs<\/a><\/li><li><a class=\"thumbnail img-thumbnail\" href='https:\/\/www.med.unc.edu\/medicine\/wp-content\/uploads\/sites\/945\/2019\/01\/lung-transplant-recovery.mp3'>Recovering from Lung Transplant & Maintaining Health<\/a><\/li><li><a class=\"thumbnail img-thumbnail\" href='https:\/\/www.med.unc.edu\/medicine\/wp-content\/uploads\/sites\/945\/2019\/01\/lung-transplant-caregiver.mp3'>Support for the Patient and the Caregiver<\/a><\/li><li><a class=\"thumbnail img-thumbnail\" href='https:\/\/www.med.unc.edu\/medicine\/wp-content\/uploads\/sites\/945\/2019\/01\/lung-transplant-kindness.mp3'>Importance of Kindness and Compassion in Health Care<\/a><\/li>\t<\/ol>\n\t<\/noscript>\n\t<script type=\"application\/json\" class=\"wp-playlist-script\">{\"type\":\"audio\",\"tracklist\":true,\"tracknumbers\":true,\"images\":true,\"artists\":true,\"tracks\":[{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/uploads\\\/sites\\\/945\\\/2019\\\/03\\\/lung-transplant-patient-story.mp3\",\"type\":\"audio\\\/mpeg\",\"title\":\"Full-Length Track\",\"caption\":\"\",\"description\":\"\\\"Lung Transplant Patient Story\\\" from Transplant Series by UNC Department of Medicine: Dr. Ron Falk. Released: 2017.\",\"meta\":{\"artist\":\"UNC Department of Medicine: Dr. Ron Falk\",\"album\":\"Transplant Series\",\"year\":\"2017\",\"length_formatted\":\"39:22\"},\"image\":{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/plugins\\\/media-library-assistant\\\/images\\\/crystal\\\/audio.png\",\"width\":48,\"height\":64},\"thumb\":{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/plugins\\\/media-library-assistant\\\/images\\\/crystal\\\/audio.png\",\"width\":48,\"height\":64}},{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/uploads\\\/sites\\\/945\\\/2019\\\/01\\\/lung-transplant-early.mp3\",\"type\":\"audio\\\/mpeg\",\"title\":\"Early Signs of Illness\",\"caption\":\"\",\"description\":\"\\\"lung-transplant-early\\\". Released: 2019.\",\"meta\":{\"year\":\"2019\",\"length_formatted\":\"6:38\"},\"image\":{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/plugins\\\/media-library-assistant\\\/images\\\/crystal\\\/audio.png\",\"width\":48,\"height\":64},\"thumb\":{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/plugins\\\/media-library-assistant\\\/images\\\/crystal\\\/audio.png\",\"width\":48,\"height\":64}},{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/uploads\\\/sites\\\/945\\\/2019\\\/01\\\/lung-transplant-reaction.mp3\",\"type\":\"audio\\\/mpeg\",\"title\":\"Reacting to the Diagnosis\",\"caption\":\"\",\"description\":\"\\\"lung-transplant-reaction\\\". Released: 2019.\",\"meta\":{\"year\":\"2019\",\"length_formatted\":\"4:32\"},\"image\":{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/plugins\\\/media-library-assistant\\\/images\\\/crystal\\\/audio.png\",\"width\":48,\"height\":64},\"thumb\":{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/plugins\\\/media-library-assistant\\\/images\\\/crystal\\\/audio.png\",\"width\":48,\"height\":64}},{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/uploads\\\/sites\\\/945\\\/2019\\\/01\\\/lung-transplant-uncertainty.mp3\",\"type\":\"audio\\\/mpeg\",\"title\":\"Getting Through Uncertain Times\",\"caption\":\"\",\"description\":\"\\\"lung-transplant-uncertainty\\\". Released: 2019.\",\"meta\":{\"year\":\"2019\",\"length_formatted\":\"3:58\"},\"image\":{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/plugins\\\/media-library-assistant\\\/images\\\/crystal\\\/audio.png\",\"width\":48,\"height\":64},\"thumb\":{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/plugins\\\/media-library-assistant\\\/images\\\/crystal\\\/audio.png\",\"width\":48,\"height\":64}},{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/uploads\\\/sites\\\/945\\\/2019\\\/01\\\/lung-transplant-finances.mp3\",\"type\":\"audio\\\/mpeg\",\"title\":\"Finances & Transplant\",\"caption\":\"\",\"description\":\"\\\"lung-transplant-finances\\\". Released: 2019.\",\"meta\":{\"year\":\"2019\",\"length_formatted\":\"5:46\"},\"image\":{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/plugins\\\/media-library-assistant\\\/images\\\/crystal\\\/audio.png\",\"width\":48,\"height\":64},\"thumb\":{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/plugins\\\/media-library-assistant\\\/images\\\/crystal\\\/audio.png\",\"width\":48,\"height\":64}},{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/uploads\\\/sites\\\/945\\\/2019\\\/01\\\/lung-transplant-hope.mp3\",\"type\":\"audio\\\/mpeg\",\"title\":\"Hope with New Lungs\",\"caption\":\"\",\"description\":\"\\\"lung-transplant-hope\\\". Released: 2019.\",\"meta\":{\"year\":\"2019\",\"length_formatted\":\"3:07\"},\"image\":{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/plugins\\\/media-library-assistant\\\/images\\\/crystal\\\/audio.png\",\"width\":48,\"height\":64},\"thumb\":{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/plugins\\\/media-library-assistant\\\/images\\\/crystal\\\/audio.png\",\"width\":48,\"height\":64}},{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/uploads\\\/sites\\\/945\\\/2019\\\/01\\\/lung-transplant-recovery.mp3\",\"type\":\"audio\\\/mpeg\",\"title\":\"Recovering from Lung Transplant & Maintaining Health\",\"caption\":\"\",\"description\":\"\\\"lung-transplant-recovery\\\". Released: 2019.\",\"meta\":{\"year\":\"2019\",\"length_formatted\":\"5:00\"},\"image\":{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/plugins\\\/media-library-assistant\\\/images\\\/crystal\\\/audio.png\",\"width\":48,\"height\":64},\"thumb\":{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/plugins\\\/media-library-assistant\\\/images\\\/crystal\\\/audio.png\",\"width\":48,\"height\":64}},{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/uploads\\\/sites\\\/945\\\/2019\\\/01\\\/lung-transplant-caregiver.mp3\",\"type\":\"audio\\\/mpeg\",\"title\":\"Support for the Patient and the Caregiver\",\"caption\":\"\",\"description\":\"\\\"lung-transplant-caregiver\\\". Released: 2019.\",\"meta\":{\"year\":\"2019\",\"length_formatted\":\"5:04\"},\"image\":{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/plugins\\\/media-library-assistant\\\/images\\\/crystal\\\/audio.png\",\"width\":48,\"height\":64},\"thumb\":{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/plugins\\\/media-library-assistant\\\/images\\\/crystal\\\/audio.png\",\"width\":48,\"height\":64}},{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/uploads\\\/sites\\\/945\\\/2019\\\/01\\\/lung-transplant-kindness.mp3\",\"type\":\"audio\\\/mpeg\",\"title\":\"Importance of Kindness and Compassion in Health Care\",\"caption\":\"\",\"description\":\"\\\"lung-transplant-kindness\\\". Released: 2019.\",\"meta\":{\"year\":\"2019\",\"length_formatted\":\"3:53\"},\"image\":{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/plugins\\\/media-library-assistant\\\/images\\\/crystal\\\/audio.png\",\"width\":48,\"height\":64},\"thumb\":{\"src\":\"https:\\\/\\\/www.med.unc.edu\\\/medicine\\\/wp-content\\\/plugins\\\/media-library-assistant\\\/images\\\/crystal\\\/audio.png\",\"width\":48,\"height\":64}}]}<\/script>\n<\/div>\n\t\n<p><b>Ron Falk:<\/b> Hello, and welcome to the Chair\u2019s Corner from the Department of Medicine at the University of North Carolina. This is our series for patients focused on organ transplant. Today we will get to hear from a person who has had a lung transplant, Andy Nelson.<\/p>\n<p>Andy\u2019s story is relatively recent with respect to his transplantation. He received a lung transplant a little over a year ago, in 2016. He is also a UNC employee, so some of us have known him as a colleague for some time, and some have helped in his care as a patient. Today I will get to ask Andy about getting sick, what it was like waiting for new lungs, and what his recovery has been like\u2014and I can tell you I\u2019ve seen Andy in the gym, so I know that to a certain extent his recovery is going well. Welcome, Andy.<\/p>\n<p><b>Nelson:<\/b> Thank you, Dr. Falk. It\u2019s good to be here.<\/p>\n<h3><span class=\"blue\">Early Signs of Illness<\/span><\/h3>\n<p><b>Falk: <\/b>Let\u2019s start by<b> <\/b>telling us who you are and what was your life like before you even thought about a lung transplant.<\/p>\n<p><b>Nelson:<\/b> After graduating from college at Clemson University in finance and accounting, also picked up a CPA license in North and South Carolina\u2014I started my career in health care. I worked in health systems, corporate accounting, corporate finance. I also worked in strategic planning business development for a number of health systems. Prior coming to UNC in 2007 I was working at the University of Kentucky Health Care.<\/p>\n<p>My wife and I have been married for 23 years, we have 4 daughters, Throughout my 20-year career, I\u2019ve never had a sick day. I\u2019ve been healthy and fit my entire adult life. I\u2019ve been committed to that, exercising and eating healthy. Never smoked. Our family was very active and healthy. In terms of health encounters, I really had no encounters other than my professional life. I looked at health care through the lens of data and new patients, but it was foreign for me to even think about being sick. If you move all the way up to 2013, I had no sign or symptom of anything and had not been to a doctor in many years, and didn\u2019t have a primary care physician at the time.<\/p>\n<p><b>Falk:<\/b> And then \u201cboom.\u201d<\/p>\n<p><b>Nelson:<\/b> Yes, well, the boom was more subtle. For me, my first remembrance of an issue was a subtle cough that didn\u2019t seem to go away, it was dry. The onset was sort of an incessant cough, I can\u2019t even remember the specific date of when it got bad enough for me to notice, but my wife and daughters noticed it. I said, <i>\u201cIt\u2019s probably just allergies.\u201d<\/i> This is in mid-late 2013. My wife and daughters said, <i>\u201cYou need to go see a doctor,\u201d<\/i> and I said, <i>\u201cI\u2019m fine.\u201d<\/i> It wasn\u2019t affecting my workouts, it wasn\u2019t affecting my work at the time\u2014I could take some cough suppressants and get through the day or get through a meeting or presentations, so in December of 2013 that\u2019s when I started waking up my wife coughing, and that\u2019s when she said, <i>\u201cEnough\u2019s enough, you need to see somebody.\u201d<\/i> There started the hunt for a primary care physician. I went to see one of our primary care physicians at UNC. I didn\u2019t know what I was getting into. He asked me, <i>\u201cWhen\u2019s the last time you have seen a physician?\u201d<\/i> and I said, <i>\u201cWell\u2026it\u2019s been quite a while.\u201d<\/i><\/p>\n<p>He gave me the surprise of the full Monty, the full physical exam, as he assessed me he said it was probably just allergies, so we started with allergy medication. I tried allergy medication for about a month and said, <i>\u201cThis isn\u2019t helping at all.\u201d<\/i> I\u2019m still having to take cough medicine, I\u2019m coughing now throughout the day, no shortness of breath and not affecting me in any other way. He said, <i>\u201cYou might have adult-onset asthma.\u201d<\/i> We actually tried some inhalers at that point. That didn\u2019t help relieve anything either. He began to get suspect. This is really where I value the role of the primary care physician and doing his due diligence. He did an in-office spirometry breathing test to see how my lung function was, and by this point I could tell I might have lost a little bit in the gym, but I attributed it to my geriatric phase of life, moving into an older phase.<\/p>\n<p><b>Falk:<\/b> How old are you?<\/p>\n<p><b>Nelson:<\/b> I\u2019m 47 years old.<\/p>\n<p><b>Falk:<\/b> So, geriatric\u2014at the age of 44 or 45, that doesn\u2019t make a lot of sense.<\/p>\n<p><b>Nelson:<\/b> I thought I was aging in dog years at that point, plus having new kids at home, lack of sleep and so forth. He does the spirometry test and says, <i>\u201cAndy, it looks like you\u2019ve lost some lung function,\u201d<\/i> maybe down to 90 percent, 80 percent, <i>\u201cI\u2019m going to send you in for a chest x-ray.\u201d <\/i>Right after the chest x-ray, within an hour he calls, and says, <i>\u201cAndy you\u2019ve got some scarring it looks like around your alveolar tissue, or tissue in the lungs. It looks like you probably have an interstitial lung disease.\u201d<\/i> He went on to explain that this is a broad spectrum of lung diseases\u2014over 200.<\/p>\n<p><b>Falk:<\/b> How quickly did you, in your health care role, quickly start Googling that?<\/p>\n<p><b>Nelson:<\/b> Yes, that is a part of my professional life is triaging clinical cohorts and understanding them. So, you as a physician, if you give me a diagnosis or a procedure it\u2019s up to understand the nuances and mechanisms, so I started reading a lot about interstitial lung disease. I knew it was a broad spectrum. Since my only symptom was a dry cough, it\u2019s not that I was in denial, I thought, \u201c<i>Well I could have this the rest of my life and be okay.\u201d <\/i>At this point is when I go to see a specialist. Dr. Lobo put me through a lot of tests, in-chamber pulmonary function tests. Ultimately, I went to get a high-resolution CT scan. That was enough to confirm a diagnosis. I distinctly remember him mentioning the words <i>idiopathic pulmonary fibrosis<\/i>. I\u2019m not a Latin scholar, but I know enough to know that idiopathic didn\u2019t sound good to me. I could piece together the other parts.<b> <\/b><\/p>\n<h3><span class=\"blue\">Reacting to the Diagnosis<\/span><\/h3>\n<p><b>Falk:<\/b> \u201cIdiopathic\u201d is used a lot. Idiopathic means we don\u2019t know the cause. The medical community does not recognize in an individual person what the underlying cause or mechanism of disease is. In your case, pulmonary=lung, fibrosis=scarring. Scarring of the lung for uncertain cause. What happens when you as a patient are given that word, <i>\u201cidiopathic?\u201d<\/i> What emotions run through you?<\/p>\n<p><b>Nelson:<\/b> For so long I had been outside the snow globe of patient care, I had not been a patient. I remember when he mentioned that, unlike the diagnosis of an interstitial lung disease, this was a more serious conversation where he said, <i>\u201cAndy, this disease is progressive, it\u2019s terminal, and there\u2019s no cause and no cure.\u201d<\/i> I asked him what kind of timelines are we talking about? The average post-diagnosis survival rate for a person diagnosed with idiopathic pulmonary fibrosis is three to five years. Dr. Lobo qualified that by saying that the majority of people are diagnosed older than me and often caught later in the diagnosis. Since I didn\u2019t have comorbid conditions, or other health issues, that I could have this disease for a long time and even though there isn\u2019t a treatment, potentially there could be one. I had some mixed emotions, probably some denial that was baked into that. I was trying to be as practical as I could, but the only symptom I had at the time was a dry cough.<\/p>\n<p><b>Falk:<\/b> You could have all the CT scans in the world, but at the end of the day, if you\u2019re feeling okay and can go about your activities of daily living, except for a cough and maybe being a little short of breath in the gym, it\u2019s hard to come to grips with those words,<i> \u201cI\u2019m in trouble,\u201d<\/i> when I feel so well.<\/p>\n<p><b>Nelson:<\/b> That\u2019s right. One of the emotional obstacles or issues that arose as I drove home to talk to my wife and my daughters, who at the time were 15, 12, 4, and 2. Here\u2019s my wife, and I\u2019m having to prequalify my statement by saying that, <i>\u201cI\u2019m going to tell you about a diagnosis but I may not fit the standard category. I may have this for a long time.\u201d <\/i>I knew my wife would do the same thing\u2014she would Google it immediately. I tried to be measured in my words to her. I remember telling her, and there was the visceral shock. I could tell where her mind was going, <i>\u201cWhat can be done? And what do you mean there\u2019s no cause for this? But you only have a cough.\u201d<\/i> My daughters, the older two old enough to understand that the runway may not be long for their dad. We went through a long process.<\/p>\n<p>We have a strong family. When people talk about healing, you can\u2019t understate the network of support the patient may or may not have at home. I was very fortunate. When we were going through the trauma of the diagnosis, it drew us closer as a family.<\/p>\n<h3><span class=\"blue\">Getting Through Uncertain Times<\/span><\/h3>\n<p><b>Falk:<\/b> What advice would you give to somebody who\u2019s listening who is perhaps feeling worse than what you were, maybe is short of breath, doesn\u2019t know if things are going to get better, but you know that they probably won\u2019t? What do you tell them with respect with how to get through those emotions of all the uncertainty that you just described?<\/p>\n<p><b>Nelson:<\/b> We all have components, a spiritual, an emotional, a physical component. When I think about how we and I coped during this season, perspective was critical. Bathing in this reality, I was aware of my mortality, certainly. We all are to some degree. We all could say, tomorrow may be our last. But to be viscerally aware of that. To have meaning and purpose and hope in every moment. I didn\u2019t see pain and suffering as meaningless; I see them as meaningful in my experience. I would tell people, <i>\u201cI\u2019m on 8 liters of oxygen a day, 24 hours a day,\u201d<\/i> I was either going to suffocate or go into cardiac arrest. There were many days that I laid on the floor and could not catch my breath once the disease progressed.<\/p>\n<p>For people listening, I progressed very rapidly. I\u2019ve gone through some serious events in that process. Yes, it is painful, but there is hope in every moment. The hope is that life has meaning and purposeful even in those moments.<\/p>\n<p>People going through this disease, you\u2019re not alone. It\u2019s good to get sounding boards out there, people who have walked it to some degree. Everybody\u2019s story is very different and I\u2019ve found all of us are very different and different stages of life and processing things differently. Ubiquitously, there\u2019s a transcending component that says life has meaning and purpose. That gives us the ability to look and appreciate this next breath. Not to focus on the, <i>\u201cWhy me?\u201d<\/i> but <i>\u201cWhat can I do with right now?\u201d<\/i> The disease helped me to deeply appreciate the moment. I had heard many people talking about being present and mindful\u2014what does that mean? Nothing educates us quite so well as a shock. For me, the shock of the disease and being in the moment as a patient, you really get a sense of appreciating that.<\/p>\n<p>You can easily spiral into self-pity if you\u2019re not careful<i>\u2014\u201cWhy is this happening to me?\u201d<\/i> Especially when there\u2019s no cause. My expectations were not high. I\u2019m a human, and I realize that I live in this mortal frame and yet my hope was very high. Whether I got one more breath, or one more year, or one more decade, I was going to prayerfully hope for the best and seek to invest those moments well. Adversity teaches us a lot. Most people I know in life would say that. This was a teacher for me and will be a teacher for those in life who can maintain that perspective.<\/p>\n<h3><span class=\"blue\">Finances &amp; Transplant<\/span><\/h3>\n<p><b>Falk:<\/b> You have this long and remarkable expertise in understanding finances. There are two financial components of what you\u2019ve been through. One, is, <i>\u201cOh my goodness, I\u2019m the financial breadwinner for a family of six.\u201d<\/i> And also, <i>\u201cI\u2019m thinking I might have a lung transplant, how am I going to pay for it?\u201d <\/i>Let\u2019s do the first one of these. How did you deal with the whole process of trying to work, then as your shortness of breath worsens, not being able to work\u2014what recommendations would you give for how to wind their way through their understanding of some financial security for your family? Whether you were planning for it or not, in a relatively short amount of time, you couldn\u2019t do the employment that you had?<\/p>\n<p><b>Nelson:<\/b> I can remember toward the end of 2015, being unable to walk across campuses and go to meetings. That\u2019s when I went and talked with folks at work about potential opportunities to bridge with some project work so I could continue some employment. If I was still, I could work. Unfortunately, if you\u2019re in a profession where you have to work with your hands or have to move around a lot, that will be impossible.<\/p>\n<p><b>Falk:<\/b> One has to be able to say to oneself, <i>no matter how hard I push, this is not a mind issue, this is a body issue. As part of my employment, if physical activity is required, it\u2019s not possible.<\/i><\/p>\n<p><b>Nelson:<\/b> It\u2019s not. You will be in a right place to file for disability at that point. You will need to look at your options. If you had disability insurance in the past, you\u2019ll want to talk to your insurance about that.<\/p>\n<p><b>Falk:<\/b> If you don\u2019t have that insurance, this is when social security disability actually has a very right role.<\/p>\n<p><b>Nelson:<\/b> Yes, this is the right role for disability benefits and the stewardship of health care would say that. To enlighten people into IPF on a daily basis, if I stood up, with eight liters of oxygen, or more, if I would just stand up and walk slowly across the room, I would desaturate. Meaning, I wasn\u2019t getting oxygen to my body and my heart rate would spike up to 140 or 150 and I would have to lie down, I couldn\u2019t catch my breath. I took showers sitting down, I couldn\u2019t breathe. It got so bad that I had cardiac issues.<\/p>\n<p>From February 2016 to June, in that stint I deteriorated very rapidly. It was a long journey to be sick enough to be on the transplant list and not too sick to not be on there. With that context though, I was very fortunate that I could work right up to transplant, for me, the work that I do, I was still able to do the mental work. As long as I had a laptop and could sit still on the oxygen, I could work. That provided some sustenance.<\/p>\n<p>When you\u2019re talking about the economics of a transplant, even with insurance, all of the costs that went into my pre-care just with IPF, it\u2019s a lot out of pocket expense. You\u2019ll want to work with your insurance case manager if they have one. Once I got sick enough to be put on the transplant list, I was fortunate at UNC. Most transplant centers have a financial coordinator. They were able to unpack a lot of information and resources. Of course, you can get them from associations, such as UNOS, the United Network for Organ Sharing. The information is there. But in terms of managing the finances, it\u2019s really contextualized by the insurance. If you have Medicare, you have to work with the social security office to know what coverage you do or do not have. If you have traditional Medicare, if you have one of the other plans, you\u2019ll have to work with those companies to find out what the coverage is. They get very specific.<\/p>\n<p>It almost is a full-time job to manage this. If my wife were here, she\u2019s an accountant, she would say the same thing. It takes a lot of hours and effort just to manage the financial piece, even from an insurance side. There are options for fundraising you could have and there are some foundations that can help provide financial assistance too, but you\u2019ll want to put all that time and effort into understanding what those options are.<\/p>\n<p><b>Falk:<\/b> A financial counselor comes with a transplant program, which is of help.<\/p>\n<h3><span class=\"blue\">Hope with New Lungs<\/span><\/h3>\n<p><b>Falk:<\/b> You had this period of really difficult several weeks of feeling okay, then not feeling okay, then finally getting the call that there were some lungs for you. What was that like, and what was that immediate post-transplant period like?<\/p>\n<p><b>Nelson:<\/b> I found out I was going to be put on the transplant list in late June of 2016. What we had heard, even in the support groups we had, was that you could have a number of dry runs. If you got a call for a lung transplant, it might not be a match. You may have to go home and wait. I remember getting the phone call on Saturday, July 2, 2016, with my family, probably around 5 or 6:00 at night. They said, <i>\u201cWe have some lungs.\u201d<\/i> This was only eight days on the wait list, so I was not expecting a phone call that soon. I thought it would be several months. I knew that if this was indeed a match, and I do go into surgery, it\u2019s a major surgery. I can remember the mixed emotions as my wife and I left to come to UNC. In one sense, we\u2019re joyful and thankful for this, because it could mean extended life for me. On the other side, you don\u2019t know if you\u2019re going to come out of that major surgery. I remember coming in, getting worked up in the OR. You know they\u2019re going to go in and open up your chest, there\u2019s the prayerful hope that I\u2019ll come out of this. I\u2019m very fortunate and blessed and thankful that I did. There are some wonderful surgeons here at UNC providing that care. It takes an orchestra to take care of a patient in transplant.<\/p>\n<p>When I woke up, in my first memorable moments after my transplant, I can say that that first breath was remarkable. I did not realize how sick I was until I took a breath with those new lungs. It was very different to be able to inhale that much. I had been so restricted for so long and did not realize it.<\/p>\n<h3><span class=\"blue\">Recovering from Lung Transplant &amp; Maintaining Health<\/span><\/h3>\n<p><b>Falk:<\/b> After transplantation, tell us a little bit about the recovery. Walk us through that period of time.<\/p>\n<p><b>Nelson:<\/b> After transplant, I remember being coached well, that once you\u2019re out of surgery you need to start moving as much as you can. Even with all the tubes, I looked like a cell tower full of IV fluids. On day 2 postop, I was walking. It\u2019s 150 yards end to end. I measured my steps and would walk the unit, then the hallway, then I got up to a mile at a time. Then by the time I left, twelve days after having surgery, I was walking four miles a day in the hospital with a walker. After I left the hospital, I remember going home and feeling like I could rest, but I knew the best thing I could do at the time was to try to move. I would put on my mask and get on the treadmill and just walk. For the first three months, I was doing extremely well.<\/p>\n<p>In October of 2016, I had a low-grade fever. It turns out I had a pulmonary embolism, a blood clot in the lungs. I had acute rejection of my lung transplant and a possible fungal infection. The orchestra played again\u2014I had all the clinicians in and out of my room. I was in the hospital for a week. Then I was back in the hospital in February for another infection. An infection is one of the leading causes of death after a surgery.<\/p>\n<p>After February and since February, I\u2019ve been on a wonderful trajectory. I remember distinctly, Dr. Falk, about six months ago being at the UNC Wellness Center and you and I were talking. You asked me when I had received my transplant, and I had heard about a magic window of time when people start feeling better or feeling some semblance of normalcy. You looked at me, and the prophetic Falk, you just said one word\u2014<i>\u201cOctober.\u201d <\/i>Here we are in October. As of last month, my lung capacity, is at 100 percent. My pulmonary function tests have been improving every month that I\u2019m going in. I go in for lab tests consistently to dial in the medications. That\u2019s another piece that most people will need to understand is that you\u2019re a walking pharmacy and you\u2019ll want to make sure you\u2019re compliant with your meds. The side effects are probably the thing you\u2019ll wrestle with the most.<\/p>\n<p><b>Falk:<\/b> How do you keep yourself healthy now? You look and you are remarkably healthy now.<\/p>\n<p><b>Nelson:<\/b> There are several factors to that. One is a bit clich\u00e9, but diet and exercise is fundamental. You want to be as healthy as you can with your diet and exercise as much as you can, cardiorespiratory exercise. The other side of this, especially with a lung transplant, lungs are the only organ that aren\u2019t encapsulated. We breathe in, and you\u2019re exposed a lot. My white blood cell count is immunosuppressed. Hygiene, a real sensitivity to keeping your hands clean, my wife and my daughters- that environment is clean. Not being overly exposed\u2014you\u2019re not wanting to be a hypochondriac and in fear of being outside. Just being sensitive, not going into large crowds and making sure that if anyone is sick to try to stay away.<\/p>\n<h3><span class=\"blue\">Support for the Patient and the Caregiver<\/span><\/h3>\n<p><b>Falk:<\/b> You talked very eloquently about what it was like to tell your wife that you had this potentially terminal disease called idiopathic pulmonary fibrosis. She\u2019s lived through your whole period of time where you really had a struggle to take another breath, and now the transplant era. This whole experience just underlines the critical need of a caregiver, an advocate who is there with you. What advice would you give to the patient about the value and importance of making sure that your spouse is able to communicate?<\/p>\n<p><b>Nelson:<\/b> This is critically important for patients who are going through this, and you mentioned too, the most important concept for a partner, somebody who is supporting you through this. The role of caregiver and advocate was evolving for my wife. She had never been in a role like this, so it added tremendous stress as you can imagine, emotionally and physically, and also as a mom of four, and having to manage that as well.<\/p>\n<p>As a patient, it\u2019s hard to give the encouragement that the partner needs as a caregiver. The caregiver needs support. Whether this comes from other family or friends, faith or church, you can\u2019t understate the value of the emotional support needed. It\u2019s easy to get emotionally spent. This is a chronic condition, and then you have a transplant, and it\u2019s chronic after. It\u2019s the sustainability and finding ways to and allowing yourself to be cared for in this process. It\u2019s easy to get isolated in this. We were very fortunate and blessed to have the family and friends we had. I could spend hours talking about all of the ways that our family and friends really rallied around us during this time. It\u2019s a tremendous part of the care and healing and quality of life for the patient and family.<\/p>\n<p><b>Falk:<\/b> When we\u2019ve had conversations with couples or pairs, and interviewed them, there are a lot of lessons that one learns. There are a cascade of emotions, of fear, that one is going to lose the patient. There\u2019s anger, quite frankly. \u201c<i>Why is this happening to me? Why is this happening to us?\u201d<\/i> There\u2019s guilt by even having that emotion. There\u2019s exactly what you described of the need for caregiver care. Caregivers become exhausted, especially if they\u2019re having to be wage earner, caregiver for the patient, and parent if you have children. The caregiver feels the need for care, and then guilty that they\u2019re taking away care from the patient. Then there\u2019s depression in trying to get through all of this. Having these conversations about all of these kinds of emotions\u2014fear, guilt, anger, exhaustion, depression, are really important conversations to have as one goes through these phases.<\/p>\n<p><b>Nelson:<\/b> You bring up something\u2014part of the orchestra of transplant care here for me was the psychiatric piece and working through this. Preparing us even before the transplant and after, for some of the things that we would face on that front. It\u2019s good to have those sounding boards there, the third-party objective boards, through that process.<\/p>\n<h3><span class=\"blue\">Importance of Kindness and Compassion in Health Care<\/span><\/h3>\n<p><b>Falk:<\/b> What advice would you give to all of the physicians who took care of you who would make your experience better? You\u2019ve been very complimentary. I\u2019ve been a patient here too, and there are some things I\u2019d really like physicians to do differently. Give me an example of the biggest thing you\u2019d like them to hear.<\/p>\n<p><b>Nelson:<\/b> I\u2019ve thought a lot about this. You can\u2019t distance yourself from the professional life you live too.. As we talk about quality health care and patient experience, provider satisfaction, all of the aims we have in health care. I thought coming in to this experience as a patient that I would be quite rational. I was very wrong.<\/p>\n<p><b>Falk:<\/b> I don\u2019t think anyone who is a patient and really ill is rational. You can\u2019t cope that way.<\/p>\n<p><b>Nelson:<\/b> I thought, I\u2019m not in the clinical sciences, but I have a deep appreciation for it, and I thought I would be data-driven and fact-based as a patient. Well, I wasn\u2019t at all. I inferred quality of a physician, of a nurse primarily through two things. They\u2019re stated often. I\u2019m choosing this word very carefully. One is <i>kindness<\/i>, sincere kindness. If you as a physician, if kindness is present, then for me, you\u2019re a great physician. It communicated a lot to me and my wife when we were there. The other one\u2014we say <i>\u201ccompassion.\u201d<\/i> If physicians can allow themselves to pause and walk down the hypothetical, and just compassionately feel what the patient is going through, and extend kindness. Competence was implicit to me, but I would watch nurses and doctors come into the room, and they might bring the stress of the day in the room with them. They wore it. I could tell and it was not a good experience for me when I went through that. I walked away and thought a lot about that. Kindness and compassion are a tremendous part of healing. When a patient is in an inpatient setting, having all of the uncertainty, and maybe lack of communications sometimes as a patient, not knowing what\u2019s going to happen. Hearing that they\u2019re coming in fifteen minutes but then it\u2019s two hours.<\/p>\n<p><b>Falk:<\/b> For those of you listening you should know that Andy turned red when we started that conversation. It\u2019s really a visceral response when caregivers somehow forget that the reason we went into healthcare was to deliver kind, compassionate, high quality care. Everybody talks about quality improvement. The quality that needs to be improved first are the qualities you described, kindness and compassion, that\u2019s exactly right.<\/p>\n<p><b>Falk:<\/b> Thank you, Andy, for sharing your story with us.<\/p>\n<p><b>Nelson:<\/b> Thank you.<\/p>\n<p><b>Falk:<\/b> Thanks so much to our listeners for tuning in. In our next episode, we\u2019ll discuss heart transplant with Dr. Patty Chang. If you enjoy this series, you can <a href=\"https:\/\/itunes.apple.com\/us\/podcast\/unc-department-of-medicine-chairs-corner\/id1076686662?mt=2\" target=\"_blank\" rel=\"noopener noreferrer\">subscribe to the Chair\u2019s Corner on iTunes<\/a> or <a href=\"https:\/\/www.facebook.com\/UNCDeptMedicine\" target=\"_blank\" rel=\"noopener noreferrer\">like the UNC Department of Medicine on FaceBook<\/a>.<\/p>\n<p>&nbsp;<\/p>\n<div class=\"alert alert-blue width:100% \">\n<p><strong>Visit these sites for more information:<br \/>\n<\/strong><\/p>\n<ul>\n<li><a class=\"external-link\" title=\"\" href=\"http:\/\/www.lung.org\/lung-health-and-diseases\/lung-disease-lookup\/pulmonary-fibrosis\" target=\"_blank\" rel=\"noopener noreferrer\">American Lung Association &#8211; Information on Pulmonary Fibrosis<\/a><\/li>\n<li><a class=\"external-link\" title=\"\" href=\"https:\/\/www.insightsinipf.com\/about-ipf\/introduction\/every-breath-counts\/\" target=\"_blank\" rel=\"noopener noreferrer\">&#8220;Every Breath Counts&#8221; &#8211; Informative video about IPF<\/a><\/li>\n<li><a class=\"external-link\" title=\"\" href=\"http:\/\/wncn.com\/2016\/09\/18\/at-fundraiser-unc-worker-recounts-how-organ-donation-saved-his-life\" target=\"_blank\" rel=\"noopener noreferrer\">Jason Ray Foundation Fundraiser &#8211; Interview with Andy Nelson<\/a><\/li>\n<li><a class=\"external-link\" title=\"\" href=\"http:\/\/www.pulmonaryfibrosis.org\" target=\"_blank\" rel=\"noopener noreferrer\">Pulmonary Fibrosis Foundation<\/a><\/li>\n<li><a class=\"external-link\" title=\"\" href=\"https:\/\/www.uncmedicalcenter.org\/uncmc\/care-treatment\/transplant-care\" target=\"_blank\" rel=\"noopener noreferrer\">UNC Medical Center Transplant Care<\/a><\/li>\n<li><a class=\"external-link\" title=\"\" href=\"https:\/\/www.unos.org\/\" target=\"_blank\" rel=\"noopener noreferrer\">United Network for Organ Sharing (UNOS)<\/a><\/li>\n<\/ul>\n<\/div>\n<p>&nbsp;<\/p>\n<p>\/\/ var audio; var playlist; var tracks; var current; init(); function init(){ current = 0; audio = $(&#8216;audio&#8217;); playlist = $(&#8216;#playlist&#8217;); tracks = playlist.find(&#8216;li a&#8217;); len = tracks.length &#8211; 1; audio[0].volume = .90; playlist.find(&#8216;a&#8217;).click(function(e){ e.preventDefault(); link = $(this); current = link.parent().index(); run(link, audio[0]); }); audio[0].addEventListener(&#8216;ended&#8217;,function(e){ current++; if(current == len){ current = 0; link = playlist.find(&#8216;a&#8217;)[0]; }else{ link = playlist.find(&#8216;a&#8217;)[current]; } \/* run($(link),audio[0]); stops from going to next track *\/ }); } function run(link, player){ player.src = link.attr(&#8216;href&#8217;); par = link.parent(); par.addClass(&#8216;active&#8217;).siblings().removeClass(&#8216;active&#8217;); audio[0].load(); audio[0].play(); }<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Ron Falk: Hello, and welcome to the Chair\u2019s Corner from the Department of Medicine at the University of North Carolina. This is our series for patients focused on organ transplant. Today we will get to hear from a person who has had a lung transplant, Andy Nelson. Andy\u2019s story is relatively recent with respect to &hellip; <a href=\"https:\/\/www.med.unc.edu\/medicine\/news\/chairs-corner\/podcast\/lung-transplant-patient\/\" aria-label=\"Read more about Lung Transplant Patient Story &#8211; with Andy Nelson\">Read more<\/a><\/p>\n","protected":false},"featured_media":4201,"menu_order":0,"template":"","meta":{"_acf_changed":false,"layout":"","cellInformation":"","apiCallInformation":"","_links_to":"","_links_to_target":""},"podcast-category":[664,639,638],"class_list":["post-22015","episode","type-episode","status-publish","has-post-thumbnail","hentry","podcast-category-podcast-patient-stories","podcast-category-podcast","podcast-category-podcast-understanding-organ-transplant","odd"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.8 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Lung Transplant Patient Story - with Andy Nelson | Department of Medicine<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.med.unc.edu\/medicine\/news\/chairs-corner\/podcast\/lung-transplant-patient\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Lung Transplant Patient Story - with Andy Nelson | Department of Medicine\" \/>\n<meta property=\"og:description\" content=\"Ron Falk: Hello, and welcome to the Chair\u2019s Corner from the Department of Medicine at the University of North Carolina. This is our series for patients focused on organ transplant. Today we will get to hear from a person who has had a lung transplant, Andy Nelson. 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