How Patient Advocacy Saves Lives Before, During, and After a Medical Crisis
Resources: HospitalToHealth.com — Download Val's free Hospital Readiness Checklist and Medication Mastery Guide, and learn more about her book, From Hospital to Health.
Every family eventually finds itself navigating the healthcare system, but very few people are taught how to become effective advocates for themselves or someone they love. In this conversation, we explore Val's remarkable journey alongside her husband through ten years of heart failure, a heart transplant, and more than three decades of firsthand experience inside hospitals. Rather than approaching healthcare from a clinical perspective, she shares what she learned from waiting rooms, difficult conversations, medical mistakes, and the determination to ask better questions when everything felt uncertain.
We discuss the hidden gaps that exist within even the best healthcare systems and why patients, caregivers, and families often need to become active participants in their own care. Val explains how clear communication, courage, preparation, and attention to detail can dramatically improve outcomes, sharing powerful stories of advocating for her husband during critical moments when speaking up truly mattered. She also explains why she felt compelled to write her book as a practical roadmap for people who may never have access to a professional patient advocate.
Finally, we explore practical strategies anyone can begin using immediately, from organizing medications and preparing for hospital stays to reducing preventable medical errors. We also discuss an often-overlooked ingredient in healing: gratitude. Val explains why small acts of appreciation toward healthcare professionals can improve relationships, strengthen care, and create a better experience for everyone involved. Whether you're a patient, caregiver, advocate, or simply want to be prepared for the unexpected, this conversation offers practical wisdom that could make a meaningful difference when it matters most.
Transcript:
Host
I'm so excited to talk to you, Val.
Val
Well, thank you so much, John, for helping to make this podcast possible. I'm gonna divert here a moment and tell anyone who's listening how great you are to work with and GNA for putting on this podcast because we need to get this message out. So thank you very much.
Host
That's very nice of you to say. Thank you. Talk to me about where this book came from. It's a very personal story. Kind of unpack it a little bit for people who aren't familiar with you.
Val
So the first thing I like to just clear up is that I didn't come to this from a clinical background. I came to the advocacy from the kitchen table, from the waiting rooms, from 35 years of watching families going in and out of the hospital unprepared. And they would leave scared and overwhelmed like
feeling like they had failed. And so I was able to come to this from an ex more than a what a professional experience alone could do. I was able to come to this from the other side of the room. So during a 35 year journey, so my husband is a heart transplant recipient, 10 years, 10 years
Host
Mm-hmm.
Val
Pre-transplant, we've now celebrated our 25th anniversary post-transplant, soon to be 26th. So really, really excited. But during that journey, I realized that if I hadn't learned to become an advocate, and this is why advocates are so important, if I had not learned how to ask good questions, empowering questions, if I had not done everything I could to be
Host
Like
Val
better prepared, I know that today I would be here as a widow and not as a wife. So patient advocacy is so critical. Having an organization like GNA that promotes patient advocacy is so important.
Host
So talk to me for a sec. Thank you again for saying that. So ten ten years pre transplant, is that right? Did I hear that right?
Val
Yes, you did. So
Host
And how and how long were you married or together before those ten years started?
Val
What's a little bit unique is this is actually a love story. I knew my husband from a work as a work co-worker who would was taken ill, and I was asked to be part of his support group, which I agreed. He was diagnosed with idiopathic viral cardiomyopathy and was told immediately that he was going to be needing a heart transplant.
Now, through the miracles of science and medication, they were able to keep him healthy enough that he didn't actually get on the transplant list right away. That's actually a good thing. But during the course of going with him to these doctors' appointments and hospitalization tests, I fell in love with the man that he became, not my coworker.
So five years into it, we got married. He was on the transplant list, and I agreed to marry someone knowing they had a heart condition, knowing that they were going to need a heart transplant. So that's the love story connection for us. That's not what all people can experience. So I was able to go into it with my eyes open.
Host
Yeah, of course.
Val
But I also knew, like patient advocates know, I had to go into it with a sense of courage, with curiosity, and with an attention to detail. If this was going to be a successful marriage, I was going to have to do more than a lot of people recognize when they say the I do's.
Host
Yeah. Kind of a a boot camp for k staying connected and being connected with your with your partner. Wow. so you were it sounds like you were part of his journey the whole ten years. You the the romance started at the beginning, but you were part of it from the start. Is that right?
Val
Yes, I was part of the journey from the very beginning when the cardiologist told him that what he was about to go through, he was going to need a support group. And I became part of the support group with some other friends and coworkers. So started off as friends, five years in, realized I'd fallen in love with the man and we got married.
Host
And when did he did he get on the donor list? So is his his meld score was kind of in that sweet spot at what, five years into that tenure process?
Val
Yeah. Yeah. Yes. About five years in. and I can't recall exactly if it was before we got married or shortly thereafter, he was on the transplant list. Because I remember we hadn't been married very long when we got our beepers. Because back then, if you're thinking back 30 years ago, cell phones were as prevalent. And so they actually the hospital handed out
beepers to the patients in waiting so that they could be contacted.
Host
And what was more difficult? Was it the five years before he was on the transplant list, or was it once he was on the transplant list that it became more complicated?
Val
The 10 years was all a process. What became complicated was paying attention and noticing that not everything worked well. There were gaps, and it wasn't because the healthcare system wasn't well educated and knowledgeable or even a lack of caring. There was simply gaps in the system.
That made him or any patient vulnerable for an adverse event. And it was noticing those and seeing patterns that developed that gave me the most pause and helped me to realize that this is a system where patients could actually become more proactive if they knew what to be proactive with.
Host
So that's a a heck of an education over the span of a decade. can you point out an example of when you realize like, hey, this is a gap and and how you kind of overcame it? Kind of a real-world instance that happened with your husband and you advocating for.
Val
There are many because it was such a long journey, th there are are many of them.
Val
Well, how about if I share first I'll share the one situation that brought me to tears. And it was the only time, the only time in the 10-year journey that I actually came to crying. And so we were in the hospital room. Bill had been told that they had found a heart. Now we had had a few dry runs where it didn't pan out, but this one looked like it was going to happen.
Host
Sure.
Val
And the nurse walked in the room and she said, Hey Bill, it's a 19-year-old. I had to turn my back and bury my emotions because I just started crying. In that 10 years of all the work we've gone through, it finally came together in that point, and yet I crumbled.
at the thought of a the donor being a nineteen year old when we had an eighteen year old at home.
Val
That was one of those statements that was shared with encouragement, but the nurse, of course, didn't know that we had an 18-year-old at home and how impactful that would be for me emotionally. And I was using it. Then I remembered that my son and his friends had all said to Bill, Hey, if something happens to us, we would want you to have.
Our heart. And so that moment I was able to regain, carry myself forward, and be back to the okay, we're going forward with this, and how can I be of service to help in this? And so that moment was the one time.
Pre and post that I broke down and cried. And there were moments post-transplant that were really impactful as well. So what I want to share also is
As patients, as advocates, or as caregivers, communication is key. And we can't always communicate in a way that's effective. So there was an instance post-transplant where the doctor seemed to be ignoring my comments that Bill was not as he should be. But the doctor kind of the numbers are in the normal range, blah blah blah.
And I'm sure every advocate out here out there who's hearing this has probably encountered a similar situation. But at that moment, I stood on two feet firmly. I looked at that resident doctor square in the eye, and I kind of, you know, hit hands on the hips and said, Doc, he's peeing like a racehorse. And that got his attention.
Host
Ha ha.
Val
And and I didn't do it to be overly dramatic. I did it because communication is key. As advocates, we know our patients better often than the doctors who are coming in and out of their care. And that paying attention to detail is crucial. Being courageous is crucial as an advocate because you have to be able to stand up sometimes.
And approach the situation in a way where you can use words that absolutely get their attention. So as advocates, pay attention, know your person, and find the words that you have to use. So that was a post-transplant story.
Host
Incredible sometimes how you have to be kind of brazen. Was your husband always on board with you kind of stepping up and ruffling feathers like that?
Val
So I love my husband and he loves me. What he observed from our journey is that I did learn to advocate. I did learn to ask empowering questions, and I learned how to hold the group around us accountable when things weren't going as they should have. We had a moment
pre-transplant. Bill was supposed to be having surgery and yet there was a series of hospital mistakes. Now hospitals they're all humans and they can make mistakes. But we were on our third day of delays with his surgery and Bill had been nothing by mouth for three days.
I decided that I needed to escalate this. And I got the dean of nursing involved.
I didn't tell Bill. He would
Host
Now when you say nothing by mouth he was meaning he was only feeding through an IV.
Val
Only only through an IV. And they kept saying, we're gonna do the surgery in X number of hours and they'd say, Oops, this happened, we're not gonna do it. So then they'd postpone it again. And then they postponed it again. We were on our third day of postponements.
And Bill, you know, where you could and I'm sure there's some advocates can recognize this, where you're allowed to give the patient some ice chips and you know a a swab to keep their dry mouth not so dry. We were going into our third day of that. So I escalated it all the way up to the dean of nursing.
That got their attention, and I didn't tell Bill I'd done this. The dean, the dean himself came into Bill's hospital room and announced, Hi Bill, because of your wife, we're gonna take you to surgery right now. In fact, I'm gonna be taking you. So there is the dean in a suit and tie.
Host
Okay.
Val
getting the gurney ready to wheel it down to the operating room. So he outed he outed me in front of Bill. And that was the pivotal moment that I wish I had known about patient advocates. Because I didn't know back then. So this was over 30 well over 25 years ago. I didn't know patient advocates even existed, but had one existed.
Host
Yeah.
Val
It would have been so much better because Bill didn't he carried that with him, knowing that I had rattled the cages and I had gone to the mat for him. Which yes he appreciated, but it made him very uncomfortable. And it impacted the dynamic of our relationship. Was he gonna maybe withhold things from me so that I didn't do this again? And what a patient.
Advocate would have been so perfect, is Bill would have expected that advocate to have escalated the situation. He would have expected them to fight for him, to get him the care that he deserved. And that patient a patient advocate has a gift. They can bring the fight forward and continue to give the patient dignity.
And continue to allow the patient to have the relational dynamics not be impacted. Something that, as his wife and caregiver, I unfortunately did impact. So that was the moment in our journey that I was pleading, there's got to be a better way. I just didn't know patient advocates existed.
My hat's off to patient advocates, you guys, you know, and when I advocate, we're doing something for our patients that empower them and we can fight for them and give them dignity and we can keep their financy dynamics intact. So that that is huge. But it also brought me to a realization later on that
Host
Yeah.
Val
I had to ask, where is the gap? What is it that I could do now that I'm learning that patient advocates exist and and I see how impactful and powerful they are and how needed they are? So I had a moment. Like I said, my journey began over a kitchen table and hospital waiting rooms, but was one of those moments that I can clearly recall, April of 2023, where
I asked God to please help me and tell me what I could do to help serve others better. And in that moment, it was laid on my heart, not just ruminating in my mind, that I needed to write a book. I went out to the kitchen table where Bill was sitting, tears streaming down my face, and saying, I have to write a book. I don't know how, but I know I have to.
Host
You gotta be kidding me. And in that moment she dropped off. See if she comes back.
Val
Have to. It's not a choice. I have to do this. There is a gap. Not everyone can have a patient advocate, but everyone needs a roadmap. And I can write a book based on what we have observed and learned to help close that gap. So those patients who don't know that advocates exist yet, like us, could have some help.
Or those patients that still need something between their advocate appointments. They have something in hand that they can refer to and go back to and help guide them to those moments to get a better outcome. And that's where the patient advocates can use the book as a tool to help their patients. And so that was laid upon my heart.
It was laid upon my heart of how I could be of service to patients and to help bridge a gap that existed because so many people don't know advocates exist. And my book became the reality of that heartfelt need, not a desire, a need, a must, that I have to do this to help others.
Host
We lost you for a sec, Val. Glad to have you back. I think we were ti kind of talking about the need for patient advocacy and how there's a bit of a shortage. Tell me kind of where your head's at with that.
Val
So having realized how much a patient advocate would have helped us in our escalating an issue at the hospital, I recognized that there aren't enough patient advocates to go around for every patient anyway. And that that if there was something I could do with the learned experience that we had.
Host
Yeah.
Val
To help bridge that gap to help both the patient and also to help the advocates. Because there may be times in the advocates coaching and caring with a patient that they want the patient to have something in their hands to read and refer to. And the thing about a book, which is different than all the pamphlets that the doctors and the hospitals gave us, is it's more tangible.
When they give you an eight and a half by eleven sheet of paper with these are your steps, those piece of papers get discarded. At least that's what I've seen time and time again. Whereas a book is a book is something that can sit on the shelf until the person is ready for it. And that's when they'll learn from it. So in writing my book, I chose six things that were probably the most
Host
Yeah. Yeah.
Host
Mm-hmm.
Val
Repeatable. You could do it at two o'clock in the morning, pacing the hallways of a hospital. And they were proactive on the patient's part. Doesn't require medical jargon. You don't need a medical degree. It's just plain, simple things, not things I invented, just things that I observed. So it starts with how the patient, you know, can prepare.
Host
Mm-hmm.
Val
and some of the simple things they can do to be better prepared.
The final chapter of the book I want to share is about gratitude. And that has probably surprised people the most that I devoted a whole chapter to gratitude. Now there's science behind it, but there's also emotions. Emotions behind it as well. And it encourages healing. But people need to know it's important enough.
That there are things they can do. So I include different things they can do. And just last week I was talking to a woman and she mentioned sending flowers to a friend at the hospital. And I said, It that's great, but rather than sending the flowers to your friend, send it to the nurse's station. Believe me, your friend will get better care.
Because you're showing that you appreciate the entire healthcare team around them and they will show up with better smiles. The next patient they help, they'll be in a better mood. These are gratitude steps that people can easily overlook.
And they're so easy to do. It empowers the patient, it empowers the caregiver when they can do something easily that helps in their journey. So that that chapter is devoted to gratitude. It's a wonderful way to close a hospital stay. It's also a great way to begin one with thank yous.
Host
Yeah. I think people don't realize how much nonsense that's so much of the medical team kind of goes through on a day-to-day basis. And a little bit of that extra kindness, whether it's pressure from the hospital or disgruntled patients or their family or even, you know, other people on the medical team having a bad day and they're human. And so even though even though they're dealing with life and death, that stuff takes a toll on people. So I love that you ended your book with that.
Val
The
Val
Yes, it it's such an important chapter. and also for advocates because it's really easy for advocates at times to be overlooked as well. So if if my book can train patients to be proactive, bring thank you cards with them wherever they go, and issue those thank you cards, we're gonna create a better health care.
It's that simple. There are other steps that are crucial that patients can do without a medical degree. Once they know those steps, such as bringing cleaning wipes with them to the hospital and wiping down every surface, don't assume that the cleaning staff.
is the best. Simple things, asking people to wash their hands. Now patient advocates know this. Patients and caregivers don't.
Host
Great advice. We've heard it before. you know, I remember and and I love the flowers. I one of one of my favorite interview moments that we've had, there was someone who said, you know, would did you wash your hands? Yes, I washed my hands. Well, will you wash them again for a Twizzler? And she always kept Twizzlers in the room, you know, or or whatever, Candy. so don't you know, don't be beyond bribery if it means putting a smile on someone's face and getting better medical care. your book, I assume it's available where books are sold.
Val
Okay.
Val
Anywhere books are sold. And one of the things I want to offer also is I of course have a website, and on that website I have some tools that are free. There's a free download, no strings attached, the hospital readiness checklist. And I encourage everyone, advocates, patients, caregivers.
Host
Mm-hmm.
Val
Download that, have at your disposal. If you're an advocate, you can hand it to your patients and help them be better prepared. It's a great tool. Also, the most important, the very first thing I put out was what I call the Medcheck Mastery Guide, and it's about medication management. Medication.
Host
What is the
What is the website? First let talk to me more about that in a second, but let's get the URL out for people so they know.
Val
The website is hospitaltohealth.com.
Host
And then and the number two, is that right? Hospital two health, or is it spelled out T O?
Val
It T O spelled out. Hospital to Health.
Host
Yeah. Hospital to health dot com. And so the met the medication thing that you were talking about, tell me a little bit more about what that is.
Val
Platform.
Val
So statistically, medication errors are one of the worst adverse events that can happen at a hospital, as far as what a patient could do to be proactive in this. And that's to know your medicines. Know what herbs and supplements you take as well. Those things, when the patient knows it or
Their immediate caregiver, double check any medications that are being offered to you. I've seen Bill offered a blood thinner prior to surgery. That's not good. So it again, we're all human, we can all make mistakes, but if we know that there's a greater area for concern when it comes to cleanliness for germs, medications.
Host
Wow.
Val
for errors and you know that and you know what to do about it, you're better prepared, you'll get a better outcome. Everyone wins.
Host
Great advice. Sounds like the book is incredibly helpful for patients and loved ones and even for patient advocates to remember how to speak to patients and loved ones in their journey with whatever they're going through in the medical system. Val, I can't thank you enough for being here.
Val
And thank you, John. so appreciate it. Sorry for the technical difficulties. they do occur. and you worked us through it, so thank you.
Host
My pleasure.
