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After sharing the news last month that he’s been diagnosed with a brain tumor, AMA President-elect Bobby Mukkamala, MD, joins us to share an update on how he’s doing, his treatment and lessons learned from navigating medicine as a patient. AMA Chief Experience Officer Todd Unger hosts.
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- Read the initial announcement about Dr. Mukkamala’s diagnosis.
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- Reforming Medicare payment
- Fighting scope creep
- Fixing prior authorization
- Reducing physician burnout
- Making technology work for physicians
Speaker
- Bobby Mukkamala, MD, president-elect, American Medical Association
Transcript
Dr. Mukkamala: It's just amazing how an 8-centimeter medial temporal lobe tumor makes me smarter about life.
Unger: Hello and welcome to the AMA Update video and podcast. As some of you might know, last month, AMA President-elect Dr. Bobby Mukkamala shared the difficult news that he's been diagnosed with a brain tumor. Today, Dr. Mukkamala is joining us from Flint, Michigan to share how he's doing and to talk about his journey ahead.
I'm Todd Unger, AMA's chief experience officer in Chicago. Dr. Mukkamala, I know this is an incredibly challenging and busy time for you right now and your family. So we really appreciate you being here today.
Dr. Mukkamala: Thanks, Todd. Always great to be with you, and enjoy these conversations that stretch my mind, tumor notwithstanding.
Unger: Well, I think we're off to a good start then. Your sense of humor definitely not affected. So that's one thing—
Dr. Mukkamala: It sucked before, and it still sucks. I'm just kidding.
Unger: I know that if this were me and I got this news that I would be, like, completely in shock after receiving it. But you, I guess, characteristically like you, made it immediate decision to be public about what was happening in your journey. Why don't we just start by talking about why?
Dr. Mukkamala: Yeah, part of it was just the practical aspect, trying to think about, 'OK, well, who am I going to tell, who knows, who doesn't know?' Just keeping track of all that is just not what I wanted to spend any time doing, whether that's me or Nita, or our family. It's creating more drama where drama itself takes time. And it takes emotion away. And that's just not where I wanted to spend my time.
And so that's why. It was like I'm an open book in pretty much all cases. And this was going to be yet another example of why I continue to be that way. But then, also, there's the transparency aspect because so many of us experience these things in isolation.
And I've just become a big fan in this phase of my life of sharing these events in an effort to, one, learn from other people, comfort those that are going through something like that, and also prepare others for what they may go through, hopefully never, but something that may be coming up for them.
I guess my first realization of the value of sharing these things is when my kids went to college. We have twin boys. And I dropped them off at college and just in tears on the way home. And no one ever told me about that. And yet when I started to share that story with my colleagues, everybody was like, 'Oh yeah, we were bawling our eyes out.' My own parents said that. I had no clue that this was what other people were experiencing in that moment.
And so then that's when I decided, you know, I don't—we should learn from each other. We shouldn't have to experience these things in isolation. And then this came up. And the same thought process continued. And I just wanted to share so that other people that had these same experiences that didn't have the comfort of being able to talk about that had an opportunity. And so that's where that transparency—really, I found value in that.
Unger: Well, I just remember back—really, it's just about a month ago when we were at AMA's Interim Meeting down in Orlando that this really became an issue because you experienced an episode of expressive aphasia. And I remember talking to you about it. And I think in that was the follow-up afterwards. I'm curious in retrospect, do you see that there were signs before this that something might have been wrong?
Dr. Mukkamala: Yeah, hindsight is always 20/20 as they say. And at the moment, I mean, I recall having similar moments in the past year. I'm 53 now, so I'm on the other side of that 50 mark.
And after witnessing other people say in the middle of conversation, oh, I lost my train of thought or forgot what I was going to say, come back to me, I thought that's what I was experiencing, so kind of senior moment. Not that 53 is senior, but it's a step in that direction.
I thought, OK, well, this is what's starting or call it a brain fart or whatever you want. This particular time, it was in a room of people that know me well, the Minority Affairs Section, a home within the home of the AMA for me. And they immediately realized that this isn't the Bobby Mukkamala that we're used to. The fact that I was speaking for a good 90 seconds, two minutes, and I knew that I wasn't making any sense.
And I was just trying to shift and try to get back on track. But they knew right away that something's not right with this guy. We know this guy too well, and this isn't him. And I went to the next room, and I gave another presentation that went flawlessly.
But by that time, my phone was blowing up saying, where are you? Don't go anywhere. We're coming to you. Next thing I know, Nita shows up with the chair of our board. And they're like, we need to go to an urgent care. We think you've had a stroke.
And so I went to an urgent care and wanted to make sure there was a physician available to review everything that came up there. And it was pretty clear I wasn't having a stroke. All the vital signs checked out fine, maybe a TIA. MRI was something that they wanted me to do, but I finished the meeting.
Everything went fine. Several more presentations done in Orlando. Came home. The night I got home, got an MRI scan, showed this big 8 centimeters tumor. And it was off to the races.
Unger: And I do remember talking to your wife, Dr. Kulkarni, about it, and I think when we were down there, we were hoping it was something more in the lifestyle arena that could be addressed. But obviously, a week later when you had your follow-up, you found a very different story and yourself in a very different role in that of being a patient.
Dr. Mukkamala: What's interesting about that—immediately, my text messages and all the emails are all about eating right, less salt, different calories, exercising, getting my treadmill going and all sorts of things. In a way, there was this relief when it was a brain tumor because, oh my gosh, I can eat what I want at the moment because it's not my salt intake that's causing this. It's this tumor in my head. But it was just sort of an interesting chain of events there.
Unger: Completely. And the sudden transition from thinking of it, I don't know, I guess, less serious to the seriousness of it you're finding it right now and being in a very different role, which is being in the role of a patient. And I'm curious—I know you're recording your thoughts on what it's like to be on that journey. What are the things that are standing out to you?
Dr. Mukkamala: Yeah, it's such an eye-opening experience for me. I mean, just the observations that I've made, starting with just the love and the care from people that I know I care about me, but it's just never expressed. And now, on a daily basis, text messages, WhatsApp messages, emails from people that I know care. I know they want what's best for me. But the expression of that is something that is just so wonderful.
Another observation is the multiplicity of faiths of those well-wishers. I grew up sort of confused Indian kid in that I went to Catholic school my whole life. And then I would go to Hindu temple on the weekends, and so sort of had a foot in both worlds of faiths.
But the multiple faiths of these well-wishers and the differences that at the level of the individual are non-existent, whether that's me going to Catholic mass last Sunday, the temple the day after that, going to a mosque this coming Friday, that the differences between those individuals that have concern for me at that level are non-existent. But at the international level, that somehow that love turns to hate when we're talking about millions instead of one is just mind boggling to me.
And then some other realizations, just the sadness of others. I mean, as you and I talk about this, I'm smiling. I have a plan. I'm enjoying this conversation. But I know that Nita's thinking about this. I know my kids are thinking about this.
My dad cried. The first time I ever saw my dad cry was when I got elected as president-elect of the American Medical Association. The second time he cried was on that WhatsApp call when he saw that I had a brain tumor. He's a radiologist. And he knew right away that this wasn't right. And so just the sadness of others is just something that really takes a toll.
And then just other observations about the mind-body connection. And so I was on some steroids for what they thought might be brain edema from this. And that caused some GI stuff and some hiccups.
And I was pacing the family room because I didn't want to keep Nita up with these hiccups because they went on for like three nights straight. I was sleeping for an hour or two. And then that last night, I had hiccups, and I was miserable. And I had stuff I had to do the next day. And so I cried for five minutes.
Hiccups totally stopped. I have no idea biologically why that would happen. But it made me think this is a mind issue, not a diaphragmatic spasm hiccup issue. And so that mind-body connection was something that I appreciated.
And then some other observations about just my kids and the pressure for them to live up to a parent's reputation, I being president-elect of the American Medical Association. If I should pass, what my kids would inherit as far as expectations on them is just something that I don't want them to have to think about. I want them to live their best lives, not under any sort of pressure like that.
And then finally, just some observations about what patients go through in general. I have a high deductible medical plan. I just renewed it on the health care exchange for next year. And so the first $15,000 or $18,000 of this is something that we're going to have to foot that bill. And being December, January, as treatment continues, that renews again. So $36,000 that we luckily, by the grace of God, have the ability to manage is not something that the majority of people in this country could even fathom managing.
And so that requirement to take the focus off healing of their body and instead try to figure out how they're going to heal their wallet is just amazing to me that they have to go through that and just things related to health equity, the equity of access, the fact that within 48 hours, I had the opinions of some of the top neurosurgeons in the country. And other patients are still going to be waiting for their MRI scan because of things like prior authorization. So, these are the things that have been on my mind that I've sort of been reflecting on and writing about as you referenced.
Unger: And that is a really big issue that you pointed out on the access front and just something that patients really face in terms of obstacles. As a result of your ability to find that path quickly, you have got your surgery scheduled now for next week. Your treatment after that would be expected to last several months.
You got a lot on your plate, obviously, in terms of your recovery. And I know you've already had a very busy year as president-elect. How do you balance—how do you think about balancing the two of those in the coming months?
Dr. Mukkamala: It really just remains to be seen. I mean, the risk of something really bad happening is pretty low, kind of single digit percents. The possibility of coming out of this, being able to think and speak well enough to not embarrass folks like you as you're interviewing me is pretty high.
So if prayers and odds sort of align, I hope to be able to heal up in a month or so and then hit the road as president-elect, but with a lot more wisdom, sort of patient-centric thinking to add to my physician-centric training and thinking up to this point and a little less hair on the left side of my head to boot.
Unger: Well, speaking of that, I am curious to know more about how this experience is changing your perspective as a physician and how you care for patients.
Dr. Mukkamala: Yeah, in the short term, it hurts just because I feel like I'm rushing through my day to get through my to-do list before I get go to get surgery done next week and not have to have patients reschedule things and not put a burden on my colleagues to pick up the slack. So in the short term, it's not fun.
In the long term, though, it's already started to really change my perspective on what patients have to go through, from things like prior authorization, things like the expenses of care, things like delays in care, managing life when there's a life-altering diagnosis, not having the support system that I have. If I was a single parent with this issue, worried about finances, worried about my kids, how am I going to manage life, that's unfathomable to me. And yet that's the reality that exists for so many people.
And then just finally not having a platform to share observations about how we should improve our health care system. I have that platform. And I'm enormously grateful to have that platform so that those that don't have it have a voice through me. And so very much looking forward to that phase, emerging on the other side of this as a better-informed advocate.
And I don't wish anything like this on anybody and instead sort of hope that others will take a few moments to reflect on my experience and see if there are things that they may glean from it that will help them manage taking care of others, their own health and their own lives.
Unger: Well, I know that you have been documenting a lot of your thoughts since your diagnosis. I'm curious, just in closing, if there's anything else that you'd like to share with the listeners out there today.
Dr. Mukkamala: I mean, I guess I just have so much gratitude in my heart. And so I would say what I would like to share is just a big thank you for allowing me this opportunity to share some of my reflections with you and others.
And it's just amazing how an 8-centimeter medial temporal lobe tumor makes me smarter about life and reflections on life. And thank you for those that are listening and that are reading. I hope that it helps you in life somehow. But thanks, Todd, for this opportunity.
Unger: Well, speaking of gratitude, we are really grateful for all of the work that you've done for the AMA over the years. And we will be following your progress very closely. On behalf of everybody out there, I just want to say thank you, and we wish you the very best in your treatment and recovery. And we'll look forward to talking with you again soon.
That wraps up today's episode and we'll be back soon with another AMA Update. Thanks so much for joining us today. Please take care.
Disclaimer: The viewpoints expressed in this podcast are those of the participants and/or do not necessarily reflect the views and policies of the AMA.
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