Learn to Focus On the Things You Can Do: Brian Kennedy, Director of Sales Analytics at Elsevier and Rare Disease Patient

Michael Carrese: Hi everybody. I'm Michael Carrese, welcoming you to Raise the Line with Osmosis from Elsevier, an ongoing exploration about how to improve health and healthcare. 

One way to look at today's guest is that if he were a zebra, he would have extra stripes because, unfortunately, he has more than one rare condition, which is a first for a guest in our Year of the Zebraseries.

As Brian Kennedy describes it, his health is a complex mystery. After struggling with various GI issues most of his life, Brian was diagnosed with exocrine pancreatic insufficiency or EPI several years ago. That's a rare disorder that prevents the pancreas from playing its proper role in aiding digestion. At the same time, he was told he had MALS, another rare condition that interferes with blood flow in the abdomen. Both of these conditions can cause chronic pain in addition to a host of other symptoms. 

Brian is actually a colleague of ours at Elsevier where he's director of Sales Analytics. He previously worked at Oracle in a similar field for eleven years. Outside of work, he's active in sports and is a practitioner of the Wim Hof method, which regular listeners will be familiar with due to our co-founder Shiv with Gaglani's intense interest in that method.

So Brian, I want to thank you for joining us today.

Brian Kennedy: Thanks Michael, yeah it's great to be here. Super grateful to be invited.

Michael: And you know, I would say that just upon reflection, it really is encouraging, probably, for a lot of people to hear that somebody, despite your medical challenges, is so active athletically. Did that start once you were really confronted with the worst of this, or were you always active?

Brian: I think I was always active person, especially cardio, loved cardio, so anything to do with racket sports is my passion. I grew up playing tennis and squash and table tennis and Badminton. But definitely after I got like really sick, I became more aware of how important exercise is, and when I was able to build myself back up, I was very grateful that I could play tennis and squash again. That was a huge milestone for me in my health journey because from going to not being able to leave my bed to when I first got on that tennis court, I remember just being so grateful that I was there and I was able to hit a tennis ball. It was a really big moment. 

Michael: Yeah, different level of appreciation. So let's back up a little bit and add to that basic description I gave about your health struggles. You did have a series of GI issues for much of your life. Talk about that and then what led to this EPI diagnosis.

Brian: Yeah, strap yourself in, I think, for this one. When I was younger, I was a bit of a fussy eater, and then as I got kind of to my late teens, I started to suffer with acid reflux. So I'd get a lot of reflux. I know a lot of people suffer with that. So that was kind of a problem for me in my early 20s and my 20s. I went for endoscopy to check that was everything OK, and everything was OK. I had some like gastritis in my stomach and basically I was prescribed Zantac to block the acid. Whenever I would get those episodes where I get this extreme burning, I would take the Zantac and I would be kind of OK. 

So mostly in my 20s and early 30s, I was mostly quite healthy, actually, but something was brewing. So in 2015, I started to have three severe episodes of not being able to swallow, and this is kind of where it all sort of started to go downhill for me. I had gone out for a couple of drinks after work and I came home and then I had a steak at home. And then literally, I couldn't swallow anything. I couldn't swallow water. Water was coming back up, so I had to go to accident and emergency and I was there for twelve hours without being able to swallow. I literally couldn't even get down the tablet that they were trying to give me. So they had to put an intravenous drip on me and feed in this antacid medication. And then eventually I was able to swallow, and then I went home and I was fine, really, but it was a bit of a shock. 

Michael: Yeah, I think that'd be a little bit scary to not be able to swallow.

Brian: It was very, very scary. I then started to see my doctor, a gastroenterologist, and it happened again. One time I was at work and I was eating lunch and then again the food would came right back up onto the plate. I had to go outside. I was embarrassed because my colleagues were all around me. I had to walk outside. And again, I couldn't swallow it. It was the worst feeling, you know? So eventually, anyway, they did tests, endoscopy, MRI, CT, all sorts of tests. The first GI couldn't find anything wrong and said, we don't know what's going on here. I was referred to another one and she found by doing a biopsy, that there were like lymphocytes in my esophagus. It's called lymphocytic esophagitis. It's kind of like an eosinophilic esophagitis where there's some cells in your esophagus that shouldn't be there. 

And that, she said, was causing me my issues. So she said to do food...it was very important, your diet and she got me to do food intolerance testing. I was intolerant to dairy and wheat. So I gave up dairy and I started to see improvements and I never had the swallowing issue. In 2016, I was on proton pump inhibitors by then, Lansoprazole, which is a better medication for dealing with acid reflux. 

But literally then in 2016, I started to get severe abdominal pain, upper abdominal pain and I just had almost like a complete physical breakdown. I was in so much pain I couldn't sleep and I just was like, what is going on here? They started to do again all sorts of tests on me, and they couldn't really find anything else wrong with me. I was even referred to psych, but I knew that it wasn't something mental, there was something physically going on. So anyway, I got better from that again. So something was going on all this time. These were little warning signs being fired at me, right? 

Then in 2016, I moved from Ireland where I was living to the Netherlands. And then in 2017, again got the pain back for a couple of weeks and I couldn't get to see a GI here because there was a waiting list and somehow again, I ended up getting better. So then I was like, okay. 

So then 2019 came, the pain came again. I was starting to feel very unwell at the start of 2020...like worse, low energy. I would eat things like a donut and feel very, very bad and bloated. And I didn't really notice that something was going on with fatty food and also with my stool, right? But eventually I was in such pain that they did a stool test. One of my general practitioners, she did a stool test and she found that the elastase -- which is a reading for function of the pancreas -- was below a hundred, which means that I had severe pancreatic insufficiency. This is the first time in all those years that the pancreas was mentioned.

Michael: Hmm. Well, and I'm just surprised there weren't stool tests before that given all the GI symptoms, you know? 

Brian: I know. It was a series of unfortunate moments. You can't go back, but when I look back, indeed there was never a stool test done. But the thing about the pancreas is you can't really spot the insufficiency sometimes until it's very late. Or usually you would get some sort of an acute pancreatitis attack where you were so severe that they know your pancreas is causing you a problem. But mine was really underlying all the time. Then the pain came in April 2019 and it has never gone away since then. So that was the start of my chronic health journey. My life changed in April 2019.

Michael:  I would say. Just to reflect on a couple of things here, we have been doing interviews for a couple of years with folks with rare conditions and this diagnostic odyssey, as it's termed...it's so hard to hear these stories. Some folks wait five, six, seven years or longer to get a diagnosis and, unfortunately, are confronted with this notion that it's “all in your head” because the medical establishment can't figure it out.

Brian: Yes.

Michael:   And so instead of, you know, trying another thing and another thing, it's like, well, it's on you. That's gotta be really discouraging. 

Brian: Yes. It was really, really hard. I remember that moment being in that psych evaluation and my mother was there at the time -- she unfortunately passed away since then -- but she was there with me. They wanted to bring me in to a facility and she was like, “No,” she said, “I know, Brian, and I know that there's something wrong here.” And I was just so tired from lack of sleep and pain that I needed someone there beside me as an advocate, you know?I was so grateful that she was there at that moment because it was completely wrong. There was something going on with my body. I had no kind of mental health or big issues, you know what I mean? So, I was grateful that I had the support there at that time. But like you said, sometimes people don't have that support.

Michael: Let alone their mother. Always listen to the mother! This should be like the first thing you learn in medical school, right?

Brian: Absolutely! 

Michael: So what was it like to finally have that diagnosis and what were the treatments that were tried?

Brian: You know, it was a huge relief to finally know what was going on because I knew that the esophagitis wasn't really my main issue. There had to be something else going on for there to be that extreme pain. In one way it was a relief because I knew what I had to deal with, but in another way it's a very difficult condition. It's a lifelong condition. There's no cure at this moment in time. So, you go through a period of grief, you know, which lasted one, two years for me. You start to realize your life has changed, it's not going to go back to the way you had it, but you just have to accept it. You reach a point of acceptance and then you sort of think, well, what are the things I can do? Focus on those things and not the things that I can't do anymore.

The treatment is basically every time I eat, I need to take enzymes... pancreatic enzyme replacement therapy. They help me digest the food because the exocrine part of my pancreas is not working, it's not firing off the enzymes to help to digest the food. A lot of people know the pancreas for blood sugar, for diabetes and all of that, but 90 % of what it does is actually the digestive function. So basically, I need to take those enzymes any time I eat, especially if I have fat in my food, because the lipase is the biggest issue. There's lipase, proteins, and amylase, those enzymes. But it's harder to digest the fats. So I have a pill thing on me all the time, and I need to take enzymes basically every time I eat. 

Michael: I’m not sure what that means, taking enzymes. Is it a powder or what is it?

Brian: It's like a kind of a tablet with enzyme from a pig, actually. The medication is called Creon and they take the enzymes from a pig, which is very like a human, and those enzymes then replace the enzymes that's not working. You have to do it when you eat so that when you're eating, you take the enzymes with your first bite. I normally take four pills maybe for dinner or five pills...maybe or six if it's going to be extra fatty. Three or four pills for lunch and so on, and one pill for a snack or something. Basically when you're eating the food, the enzymes fire off and help to digest the food.

Michael: Are there any side effects to taking enzymes that often?

Brian: No, not really. So that's the good thing about that. You can't take too many. Sometimes they say, if in doubt, take a bit more. There's not really major side effects. But they never work as well as a normal pancreas works, you know. So I often have issues going to the toilet with my stool. The stool can be bulky, fatty, floating, oily, that kind of thing, which is not very pleasant. So a lot of EPI patients have to deal with steatorrhea. Eventually you get used to it, but things are working well when your stool sinks, so there's kind of a little bit of a celebration on the stool.

Michael: Yeah, that's an interesting image...doing a little happy dance right there!

Brian: Sorry, but it's important to talk about this stool. I also have to take some drugs for the pain because you have upper abdominal pain. I take a nerve drug called amitriptyline and I take that at night and that helps to kind of dull the nerve pain that's been caused from whatever inflammation is going on in the pancreas. Some patients are on different pain medications. Some patients have to be on opioids or much stronger pain, but thankfully, I don't. We don't know is it going to get worse. It can progress, but I just try to manage my life in a very healthy way and I do my best with what I can do. 

Michael: Yeah. Well, I'm sorry to hear this. I mean...it really sounds like quite the challenge and odyssey when you consider the combination of the physical and the mental impacts and all the stress and all of the worry about your future. That's a big burden. How have you managed to continue to have a career and other things in your life with all that going on? 

Brian: Well, I mean in 2019 when I got really, really sick and we found out that pancreas was the issue, I was four months out of work. I couldn't even get out of bed actually. I was so weak because you have malnutrition and malabsorption because you're not absorbing the food properly, and then when you take the enzymes, it starts to get better and you start to get better, you know. So I kind of just tried to take each day as it came and build myself up. The first year or two was very hard. My employer was very understanding. I work in data analytics, so I can work from anywhere. I was working from home. 

Then COVID came along, of course, just really at the start of when I was having my problems, and then we all were working at home. So, funny enough, COVID helped me because it also meant the restaurants were closed and it's better when I control my own food. I just tried to get on as best I could and just focused on my health...my diet, exercise, you know, all the pillars. No alcohol, of course, because alcohol is lethal for the pancreas, so I had to give up alcohol. I have a very clean, healthy diet. No processed foods. So in a lot of ways I'm healthy, except I just have this one severe issue, if you know what I mean. So I'm trying to look on the positive, really.

Michael: Yeah. And what's the progression? You're saying pain can get worse, other things can happen. What is the long-term? Can you just do this the rest of your life or, at some point, can it flip to pancreatic cancer or something else?

Brian: Well, it's a good question. The thing about my EPI is that I don't know the cause. Chronic pancreatitis is one of the main causes for EPI, which is very serious inflammation in your pancreas. My CT scan and endoscopic ultrasound – which is kind of the gold standard for testing the pancreas -- did not show damage really in my pancreas, but it's not working. It's not functioning. So they were not sure whether I had chronic pancreatitis. Most chronic pancreatitis patients tend to have at least one or two or three acute pancreatitis episodes where they're doubled over in pain and they have to go to hospital and they have to get really strong pain medication. Now, I had those episodes I told you about, but I managed to get through them so I don't know whether that was a pancreas attack. 

So I don't really know, and they can't really tell me how it's going to progress because my EPI is kind of idiopathic. The cause is unknown.

Michael: Mm -hmm.

Brian: So I don't really fully know. I'm hoping that it's not my pancreas is completely damaged, you know, and I have chronic pancreatitis. But so far in the five years I've had this condition, I suppose I haven't deteriorated. I haven't gotten worse. I think that I've stabilized a bit. The pain maybe level is not quite as bad as it was like three years ago, where I would have nights of pain of around like eight or nine out of ten and I would just be in agony and I'd have a heating pad on my abdomen. So, touch wood, I hope that I'm able to manage this and it doesn't get worse, but I don't know.

Michael: Yeah, that's tough. You know, as we have talked to lots of rare disease patients, one theme that comes up all the time is trying to find some community, trying to find other people who are suffering from the same issues. Talk about that a little bit. What's that been like for you?

Brian: Honestly, that was huge for me. I would say it made the biggest difference actually on my quality of life was talking to fellow sufferers, even online. So first of all, I found people on Facebook groups for EPI. There's an amazing Facebook group for EPI, and also on Reddit and inspire.com and you start to post there and share. And of course, you know, they're not doctors and everyone is different. That's the thing. Every pancreatitis patient is quite different and everyone has different triggers in terms of food and all of that. So, you know, you have to educate yourself as well. 

But they have very good tips in terms of managing pain, in terms of keeping food diaries, and all these very practical tips that only a patient would have that you don't get from the doctors. And sometimes, you get like ten minutes, maybe fifteen minutes if you're lucky, once a year with your gastroenterologist because everybody is so busy, and you're trying to squeeze in all the questions that you have, and it's impossible, you know? So, I was super grateful for those groups of people and it helped me no end.

Also I found out about this book called Primal Pancreas: Pancreas Damage Survival Guide by A.  Toxopeus. He is Dutch actually. When I read this book, because it was recommended on the forums, his story was almost identical to my story. I almost cried. I was like, my God, finally I'm hearing from somebody who went through the same things as me, you know, all the years and years of issues and going to doctors and not having answers and being in pain and all of that.

Michael: And being told that it's in your head.

Brian: Do you know what? It's made me really more resilient, I would say, as a person as well. You know, you have to be your own advocate. To any other patient who's going through a chronic condition I would say that you have to be your own advocate. You have to fight. You have to ask questions and you have to educate yourself. But as you said, I'm very grateful for these communities of people. Super grateful.

Michael: One of those is an organization called Mission Cure. I know you're involved with that. Why don't you fill us in on what they're about.

Brian: Yeah, actually that was a turning point for me as well, I think I was lucky to meet the founders of Mission Cure. So Mission Cure is a charity in the United States and their mission is to cure pancreatitis. There are two incredible founders, two ladies who have personal stories with pancreatitis. Megan Gold is one, and her brother has chronic pancreatitis. Linda Martin is the other one, and her daughter had chronic pancreatitis. So they set up this charity and it's incredible what they're doing because they're really getting a lot of funding to bring people together -- scientists, doctors, patients -- to come up with solutions and treatments and trying things out to find treatments. 

I work for Elsevier, as we know, and luckily through my work I was able to meet these ladies. So, I'm very grateful for Elsevier and the mission that we have, which is to advance science and have improved medical outcomes. It really brought home to me the work that this company does. But anyway, we were doing a data time with Mission Cure where data scientists from Elsevier were working on trying to look at drugs that could be repurposed for helping with chronic pancreatitis. So they did this kind of data time and data scientists were analyzing all this data. 

I happened to be connected with them when they were in Amsterdam visiting the company and I met them for lunch and it was just another moment for me where they told me about their personal stories -- Megan, about her brother and Linda about her daughter -- and Linda actually put me in touch with her daughter so I could speak to her as well. That was the first time I spoke to someone who had something like this. So it just gave me hope. It just gave me hope that there's people out there, you know, working to find cure for what I'm going through and very strong, very determined, very savvy ladies. That lunch just gave me so much hope. 

Michael: That's wonderful.

Brian: And I'm still connected with them and they're doing amazing work.

Michael: We'll be sure to put a link to that in the show notes and also to the book. You know, one of the wonderful dimensions of all the interviews we've done on the Year of the Zebra is just meeting these people -- parents especially – that know nothing at the start about the condition that their child is finally diagnosed with and they create nonprofits and they’re raising millions of dollars and they've become more expert than most of the clinicians that they meet, and they are funding research. I mean, it's just astounding what people are able to do. And of course the internet and all the other ways we have communicating now make it much easier to get connected and spread the word. I mean, these are amazing people.

Brian: Yeah, totally agree with you. I'm just grateful that there's people out there -- and scientists and doctors who are doing research and trying to find cures for all these conditions -- because even though it's a rare condition, it still impacts thousands and thousands of people. If you make a difference in thousands and thousands of people's lives, it's incredible. So I'm hopeful for the future that somebody will come with a breakthrough on this. But for now, I do my best.

Michael: Yeah. AI is sort of accelerating this. 

Brian: Absolutely. 

Michael: There are other positive signs...the gene editing technology. There's really a lot going on that's providing sources of hope. 

As we wrap up here...as you know, we have an audience with Osmosis of medical students, nursing students and early career professionals. What overall message would you have for providers about dealing with rare disease patients?

Brian: I think it's being patient and continuing to ask questions and not giving up, you know? Because every person is different and some people are more complicated than others and I just happen to be one of the people that has something complex like two or three or four things combined, you know? So my message would be to please keep asking questions and just dig in as best you can. Do the research. 

In my particular case, what I found is that some gastroenterologists didn't know so much about the pancreas, which surprised me a lot. I know that the gastro area is very complicated, I totally understand that, but even so, it had to be a pancreas specialist that I would see in the end. Sometimes the gastroenterologist can pick up maybe more knowledge there to kind of maybe find this as an option earlier. Why did that never come up all those years before as a potential issue? 

So that would be another thing is more on the gastroenterology front...more research and education, hopefully around the pancreas. But I'm grateful to all the medical students out there. They're the future. And as you said, AI and data will help a lot to hopefully solve things faster.

Michael: Yeah. Well, that's a good, more positive sort of note to end on. Brian, I want to really thank you for being with us today and for sharing your story. I think it does provide inspiration for other folks who are going through these similar odysseys with rare diseases. And of course, we wish you all the best, and best of health.

Brian: Thank you so much, Michael.

Michael: I'm Michael Carrese. Thanks for checking out today's show. And remember to do your part to raise the line and strengthen the healthcare system. We're all in this together.