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Join us as we speak with Laura Buchman, a patient advocate and author of NERVE: Surviving Medical Madness. Laura shares her harrowing personal experiences with the medical system, including the overwhelming shock of seeing her son hospitalized with severe acute hyponatremia. She delves into the emotional rollercoaster of advocating for her son’s care, the challenges of communication with medical professionals, and the complexities of treating young adults. Laura’s story is a powerful testament to the importance of patient advocacy and the need for compassionate, individualized care in our health care system.

Laura Buchman is a patient advocate.

She discusses her book, NERVE: Surviving Medical Madness.

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Transcript

Kevin Pho: Hi, and welcome to the show. Subscribe at KevinMD.com/podcast, and get CME for this episode by clicking on the CME link in the show notes. Today we welcome Laura Buchman. She’s a patient advocate and author of the book NERVE: Surviving Medical Madness. There’s an excerpt from that book on KevinMD. Laura, welcome to the show.

Laura Buchman: Thank you so much, thank you so much for having me.

Kevin Pho: So we’ll talk about your book in a little bit, but just first off, briefly share your story and journey.

Laura Buchman: So I am the mother of four kids. I raised four kids. This story, NERVE, is about one of them. And I’ve had many jobs, I have an MBA, but I can tell you that there’s been by far no job more challenging than being an advocate, caring for my son, being a parent through this medical health crisis that I believe was brought on by the health system.

Kevin Pho: All right. So tell me the story that of course led you to write the book.

Laura Buchman: So what led me to write this book is that my son, at 19, he was a percussionist at Juilliard. He had a pectoral chest pain. It was bothering him enough to go to the hospital to see if they might be able to help. And he could have actually checked out of the hospital that night, but he was a little too tired.

He was given many medications, and subsequently what happened is he became paralyzed from the neck down and on a tracheotomy. And that should have been in itself something really challenging and hard to get through, to deal with being paralyzed from the neck down, not being able to speak, being on life support, in just a few days, being a formerly completely healthy 19-year-old.

But then I realized it was quite a struggle in the hospital system to actually survive that. The polypharmacy, the hospital infections, the urge to do elective surgeries that might not have been necessary. And so I realized that there were so many things that I wish that my son had known, that I had done differently. And so I wanted to write this book to sort of help people avoid some of the pitfalls.

Kevin Pho: So tell us more about the context about your son’s story. What were some of his experiences dealing with the medical system? What exactly happened next? So just take us through and give us more examples that really illustrate what you’re talking about, the health care system.

Laura Buchman: OK. So as soon as my son entered the hospital, they asked him what his pain level was, which I don’t know if they do anymore. But he was given an opioid for his pain, and this kind of wiped out his faculties to be able to take care of himself and answer questions. And he was 19. At 18 you’re considered an adult and in charge of your medical care.

So that kind of started the ball rolling. And then he was given other medications when he had already taken medication before he went in, and he gave a full history, but they didn’t seem to be following the history from the get-go. It seemed like there were a lot of medications that were given to him that he might not have reacted well to.

And then when he saw the cardiologist for his pectoral chest pain, he sort of was taken through the sort of, and I would have never understood that if I didn’t take a step back and start looking at books written by doctors on medical error and overtreatment, to understand this. And then I went back to the medical records and I was like, wow, he didn’t need this CT scan, let alone a CT scan with dye, that can be harmful for some patients.

And so there were so many tests and things that were done to him that were completely unnecessary, and the medical records didn’t quite reflect what we were being told. And as a consequence, I think one of the biggest things that happened is he reacted to the medications and he suffered from severe acute hyponatremia, which put him in this disoriented state.

So when I saw my son at the hospital, I wasn’t told anything, because he’s an adult. But when I saw him, this was less than two days, after his second night in the hospital, he was disoriented, he couldn’t communicate with me. I didn’t know where my son was. I mean, here he was, he was a strong healthy 19-year-old, and then in less than two days, with no warning, it was like I was hit by a truck. My son’s like an end of life patient, disoriented, not communicating with me, he couldn’t lift his arms.

And I didn’t really get a lot of feedback from the hospital, aside from like, warning, he has acute hyponatremia, if we don’t take care of him slowly he’s going to get brain damage or die. And I was like, what? So my whole mind kind of went, my hippocampus, I was like a zombie.

So what happened from there is that I realized that they had given him this antibiotic which they said at the time was Cipro. It happened to be a different type of fluoroquinolone. And I just knew at the time about the tendon damage, I didn’t know about all the side effects from that medication.

But what scared me the most in the hospital system was, why doesn’t the medical team know about the side effects? So if my son’s throat starts swelling and he can’t breathe, why do they not know that that can happen with Cipro, and you should pull the patient off Cipro rather than give more medication?

Or why, even for instance, when I got to the hospital my son was being given fentanyl. I never got an answer for, why does my son need fentanyl, and also that it suppresses respiration? So if a patient’s having trouble breathing, why would you be giving them fentanyl? There better be a good reason. The benefits should surely outweigh the risk.

So it seemed like one thing led to another. So it’s hard to know exactly what the biggest mistake was, but the issue I see is that once you start over testing and go on a fishing expedition, you never know what harm you can do to a patient.

And then, I mean, I was looking at my son, I felt like saying, like, oh my God, does anyone not get that this was a healthy 19-year-old, something’s really horrible is happening? But they were making me feel like, and this is how I felt until I sort of unraveled everything, that he was so lucky to be in the hospital when he stopped breathing. Like, oh thank God he was in the hospital when he stopped breathing, what would he have done if this had happened in New York?

So scroll forward, and I would say one of the biggest moments for me was looking back at that. My son, he was intubated after a few days and still on a lot of medications that suppressed respiration. And then from there we were talking about a tracheotomy. And this is one of the things that I look back and I say, wow, I didn’t understand that it wasn’t an emergency, that a tracheotomy is an end of life procedure for many patients.

So the medications, I believe, triggered a GBS situation, a Guillain-Barré situation. But he was intubated, he was stable, it was temporary. Most GBS patients start breathing within a week or two, to usually around two weeks. Why was this, the way it was presented to me was, oh, this will be so much more comfortable, this will be so much better for him, this is like a natural next step, he’ll never get off the intubation in time, he’s going to have to have a tracheotomy eventually.

But what was not explained to me is all the risks with a tracheotomy. When I look back in the medical records, I realized that they knew that he had MRSA right before the surgery, and rather than put it off, since it was elective and he was stable and even breathing over the respirator, they just put him on vancomycin, which as a musician I now know can affect your hearing. And even more, aside from the music, as my son’s struggling for his life, it can shut down your kidneys and cause organ damage.

And so we went ahead with the tracheotomy, and this sort of set the stage for a new cascade of errors. He now needed more medication, he was in more pain, he was more sedated, he picked up infections in the trach, hospital bug infections called Serratia and Pseudomonas. So he’s dealing with MRSA, the hospital infections, and then on top of it now his organs starting to shut down, and we’re at 100 percent oxygenation needed, whereas before we were breathing over the respirator.

Kevin Pho: So while your son was in the hospital, obviously a very difficult course, so many medical teams, so many physicians that you were interacting with, and like you said you were almost numb to what was going on. But when you ask them such pointed questions, like why does he need to be on antibiotics, why does he need to be on fentanyl, tell us a little bit more about the interactions that you had with the medical team.

Laura Buchman: I’ll be honest, and I don’t say this lightly and I don’t like to say it, but I felt I was kind of put in my place. Like in the first hospital, they wouldn’t let me be part of the rounds to hear what was being discussed.

When I think back to how crazy it was, I was trying to, I didn’t even fully understand the antibiotics he was on. I was trying to research myself, because it seemed so odd, to try and see, is there any connection between paralysis and this medication? And at the same time trying to be by his side and let him know that we’re supporting him and there for him.

I feel like I didn’t really feel listened to. I felt like, kind of just be quiet, appreciate what we’re doing for your son, that we’re trying to help him, that he needs all the care he’s getting.

But in retrospect, I mean, one of the tips in my book is, don’t be afraid. Your life is on the line, you are handing over your life and trusting these people, and you have to be willing to maybe not be treated so, maybe insult someone and get in their way. Even simple things like, if you don’t think a health care worker has washed their hands, to be able to say to them, I’m sorry, I hate to ask you this, but do you mind washing your hands again? Because patients are so vulnerable and it’s so easy to pick up an infection.

Kevin Pho: How long did your son stay in the hospital for?

Laura Buchman: So my son was in one hospital for two weeks in the ICU, and then in the ICU in another hospital that he was transferred to for three weeks. And then from there, as soon as he was able to start moving his hands, just a little bit, which was of course really powerful and amazing since his hands weren’t moving, we were able to start rehab. So we moved to a rehab facility, and he spent about seven weeks there.

Kevin Pho: And how is he doing today?

Laura Buchman: He’s doing great. And I really don’t want to say too much about his health care because I feel like it’s his business and private. But he’s not healthy, he still hasn’t figured out how to heal from some of the medications that he was given. Which is so ironic about this whole thing, is that the GBS became secondary to just trying to heal from systemic injury.

Kevin Pho: So you mentioned earlier that you of course don’t get any do-overs, and I know that you wrote this book as a reflection and as almost like a warning to other patients about what could happen in the hospital. But if you were to do it over, tell us some specific things that you would do differently.

Laura Buchman: OK, well, if I was to do it over, the second, I was in the D.C. area, he was in New York, the second that we got the call that he was going to the hospital I would have immediately gone to the hospital. Because it just takes, you know, one second, every moment that you’re in the hospital is an opportunity for you to perhaps have your care sort of derailed. And so that’s one thing. I didn’t realize the importance of a patient advocate, and I assumed he was going in as a healthy person. I never could have imagined what could have happened. So the first thing I would have done is get myself in the car, no matter what time it is, and get to the hospital to support my son. So I wish I had done that, so that would be the first thing.

The other thing is, even though the doctors were really kind and caring, I should have asked to see the medical records. And I should have looked at them. And when I asked the infectious disease doctor, are we sure that he has pneumonia and should be on such a strong antibiotic, he told me that he’s been an infectious disease doctor for 25 years, and that was the end of the story. But I wish I would have said, I’d like to see, my son didn’t have any clinical symptoms, can you show me some blood work, can you show me the cultures, can you show me what type of bacterial infection he has?

So then that would have been another thing. I wish I would have done a little bit more of my own research on acute hyponatremia, on how you treat it, do you raise it fast, do you raise it slow? Because again, my son’s life was hanging by a thread and I was just taking it all in, like, of course they care, and of course they do, they care for my son, they wanted to help him, they wanted him to be 100 percent better. But I wish I would have done more of my own research. When my husband came in, I wish that I had really found a place to do some research myself, looked at the medical records, and not relied on other people to tell me what’s happening and what’s going on.

So yeah, and basically, I mean, my son was in pretty bad shape. We stayed for five weeks, we slept in the ICU and his hospital room with him. He was in severe pain, he felt like his body was exploding from the inside. You would think that if someone’s paralyzed they wouldn’t have a lot of pain, but it wasn’t the case, at least for my son. He felt like his whole body was breaking down from the inside. And of course that meant, since he had pain, that they were trying to relieve his pain by adding more medications. Nothing seemed to work. So those are a few things.

Kevin Pho: We’re talking to Laura Buchman. She’s a patient advocate and author of the book NERVE: Surviving Medical Madness. Laura, we’ll end with some of your key messages that you want readers to come away with after reading your book.

Laura Buchman: Some of the key messages are, just because medicine is FDA approved doesn’t mean that it can’t have side effects. There was a study in the New England Journal of Medicine that came out recently that said that one out of four, well, it was 11 hospitals that were looked at in Massachusetts that were Harvard affiliated hospitals, 11 of them, and they found one out of every four patients had adverse events.

And so I would say don’t assume that if a drug is FDA approved that it’s 100 percent safe for you. There are side effects, sometimes there are adverse effects, and it’s very real. And also don’t expect that it’s the doctor’s job to tell you those things, or to know that, or to be aware and to change medications. If you’re having a side effect you might stay on that medication and then have another medication added on. So that’s your job now, until our system changes.

And I hate to say that, but I really do feel like we have to armor up in a sense, and we have Google, we can go online, we have our phones, we need to know health risks, side effects, contraindications. This is where like an advocate would really be nice, even a family member who can do research for you. So that would be another takeaway for me, is that whole aspect of medication.

If a surgery is suggested to you and it’s not an emergency, even if you’re in a hospital and it’s so easy to do, I would take a step back and think about it. I would ask the doctor, what are all the downsides, what if I don’t do this surgery, are there alternatives? You know, my son had a feeding tube put in, but then I didn’t even know that there are options for a nasogastric tube, that he didn’t have to have that invasive procedure. So that would be another takeaway.

One of the biggest, I think, is stay out of the hospital if it’s not truly an emergency. If you can talk to your primary care doctor, if you can go to urgent care, if you can wait a night. I’m not saying if you have a heart attack or a broken bone or something that needs immediate care, but if it’s truly not an emergency and you can wait, or you can go to urgent care and get some other advice before you go to the hospital, I would say stay out of the hospital. The hospital is really for true emergencies.

Kevin Pho: Laura, thank you so much for sharing your story, time, and insight, and thanks again for coming on the show.

Laura Buchman: Thank you so much.