Navigating Hydrocephalus: Jeff and Katherine's Story of Hope and Resilience

What if you could recognize early signs of health deterioration before it turns into a crisis? Join us in a conversation with the inspiring couple, Jeff and Catherine Pearson, as they share their remarkable journey navigating life with hydrocephalus. Jeff, who has managed this condition since birth, and Catherine, his devoted caregiver, reveal their story of resilience through multiple surgeries and health challenges. Learn how their nonprofit, Hydro With Hope, and their online initiative, Invisible Condition University, provide vital resources and support for those affected by invisible conditions.

Our discussion takes a deep dive into understanding the critical importance of proactive healthcare and the emotional and financial toll of unexpected medical emergencies. We explore Jeff's experience with sudden brain surgery and the lessons learned about listening to your body and recognizing symptoms early. Catherine shares her invaluable insights as a caregiver, emphasizing the importance of a supportive network. Through personal anecdotes, she illustrates the nuances of differentiating between various types of discomfort and the significance of addressing both physical and emotional needs.

We also explore the Pearsons' passion for fostering community and collaboration in healthcare. By integrating Western and alternative medicine, they advocate for a cooperative approach to care. Their creation of "My Hydro Warrior Story" serves as a testament to the power of storytelling and shared experiences in building a strong support system. Their dedication to empowering families with chronic conditions shines through as they share strategies for balancing family life while navigating the complexities of healthcare. Get ready to be inspired by their unwavering commitment to making a difference in the world of invisible conditions.

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Chapters

• 0:00 Inspiring Couple's Hydrocephalus Journey and Mission
• 10:45 Recognizing Signs of Health Deterioration
• 17:17 Financial and Emotional Impacts of Surgery
• 29:02 Creating Hydro With Hope
• 40:05 Fostering Community and Collaboration in Healthcare
• 49:03 Empowering Families With Chronic Conditions

Transcript

Jen: 0:08

Welcome my Spoonie sisters. Today I am excited to introduce Jeff and Katherine Pearson, a couple whose inspiring journey is marked by resilience in the face of. I know I'm gonna butcher this word, so I will let him say it for us, but it is hydrocephalus, is that correct?

Jeff: 0:26

So close, so close. Wrong emphasis on the syllable. There it's hydrocephalus. You were close. There we go, I know, I know.

Jen: 0:35

It's the condition involving fluid buildup on the brain. Just Diagnosis led through numerous surgeries and emotional challenges, but together they have found strength and a commitment to help others. In 2022, they launched their nonprofit, hydro With Hope to support families facing hydrocephalus Cephalus Cephalus Wow. They created the journal my Hydro Warrior Story and expanded their mission with the TV show Invisible Condition, aiming at raising awareness about various invisible conditions. This year, they introduced Invisible Condition University, which is an online community for those diagnosed with an invisible conditions. This year, they introduced Invisible Condition University, which is an online community for those diagnosed with an invisible condition and their caregivers to find resources, support and to finally be seen. I'm eager to discuss their story, the obstacles they've overcome and the impactful work they are doing. So welcome, jeff and Catherine. How are you today?

Jeff: 1:32

Thank you.

Jen: 1:34

Do you mind sharing your journey with hydrocephalus and how the diagnosis affected both of you?

Jeff: 1:40

Sure, yes, that journey starts way back in March of 1977 when I was born, because I was diagnosed at my two-week checkup at two weeks old. That was the diagnosis. That was the first time we heard the word hydrocephalus and that was my first brain surgery was at two weeks old. So, starting off with a bang. At that two-week checkup they did a cat scan and discovered that one of the ventricles in my brain was not working. Just a little anatomy lesson.

Jeff: 2:11

Your brain is always producing cerebral spinal fluid, which is what cushions your brain against your skull, and the fluid has to go somewhere because it's always being produced every day, all day, every day, and so it normally will exit through what's called ventricles that are in the brain and it goes down your spinal column, kind of lubricates that and then reabsorbs into your body through there.

Jeff: 2:32

But one of my ventricles was not working properly. It was blocked, and so the fluid couldn't escape as fast as it needed to, and so it was starting to build up. And so when they did some of those same measurements that they do at birth at the two-week checkup, one of which is a head measurement around the noggin there, they discovered it was a little bit too big, just outside the average. So they did a CAT scan, figured out I needed surgery and there it was brain surgery, two weeks old. That was the first of seven that I've had. So yeah, it's been a ride. That was when we found out, and there's a lot more to the story, but that was the beginning of the story.

Jen: 3:11

So obviously, catherine, you did not know him when he was, you know. But how has this?

Catherine: 3:19

affected you as well. Right, I did not know him at two weeks old. We met when we were in middle school we were seventh, eighth grade in that range and we became friends, dated a little bit off and on through that time frame and ended up getting married. Just to fast forward, the story ended up getting married at about 22 years old. At that time, you know, I knew that he had a condition called hydrocephalus, but I did not really know what the implications of that were. I didn't know what it meant. Really it was. I was just kind of just kind of that young and in love. So we got married. We had three kiddos, been through the jobs and the buying a house and all those fun things.

Catherine: 4:08

It was about 14 years into our marriage when he started having surgeries. 14 years into our marriage when he started having surgeries and the first one was an emergency abdominal surgery which for us, really kind of came out of the blue. There was no, there was very little warning. It was that morning he didn't feel well. Waking up that evening it had gotten so bad that he needed to be taken by ambulance to the nearest hospital. So that was kind of my introduction was going oh my gosh surprise, my husband of 14 years is in the hospital and they're saying that he needs emergency surgery. And so that was kind of a crash course in figuring out who my community was, who was able to come alongside me and support me and us really, you know, support us, support the kiddos at that time we're much younger, but yeah. So since that time there's been a few other surgeries along the way.

Jeff: 5:05

Seven is that right, seven in the last 10 years, six, Six Six in the last 10 years the emergency abdominal, four brain surgeries and then another surgery just a couple of years ago.

Catherine: 5:17

Yeah, so. So the impact has been, you know, first of all, navigating the hospital system and, and, like I said, finding community, which at first it doesn't. It didn't feel like there was very much, but, you know, seeking out, seeking seeking out that community, and then also finding myself in a bit of a caregiver role, as the surgeries led to subsequent physical impacts. For example, after he had brain surgery in 2014, he ended up with about a year of migraines. So that's, you know what. What do you do when you see your husband? You know that has been very strong and capable and doing all the normal things and is now on the couch for the whole day, all the time most of the day not being able to work, not being able to barely functioning.

Catherine: 6:08

It was hard, it was a very hard time. That's probably been the hardest impact is seeing the physical aftermath of surgeries.

Jen: 6:18

Do you both feel like you had the support that you needed, and do you still feel like you have the support you need?

Jeff: 6:23

What do you think? I'll let you answer that. You were my support, so you go for it.

Catherine: 6:29

I kind of alluded to when he first started having surgeries, that very first one, that very first emergency surgery. At the time I texted a bunch of friends and I said Jeff and I are in the hospital. He's having to have emergency surgery A lot of them, you know. The response was oh, we'll pray for you, which is great. And that's you know. I welcome prayer. But there was, there was two friends in particular. One said I will be there, I'll be right there. Which hospital?

Jeff: 7:00

are you in.

Catherine: 7:00

I'm coming, the other friend said what can I bring you? Yeah, that was practical. That really practical help was really what I needed at that time. And I was actually kind of surprised at how little support there was from my friends at the time. To be fair, they had no clue either. They didn't know what to do. But maybe if anyone listening ever hears from a friend hey, I'm in the hospital with a loved one, see if you can go to them. If they're out of town, out of state, understand, but if you're in the same town as them, try and go and sit with them. Go and sit with them in the waiting room, because that's the most uncertain, scariest, unsettling, unnerving time that I think I ever had in my life was sitting in a hospital waiting room while he's having surgery.

Jeff: 7:56

And what made it more so is because I had, I mean, I had some surgeries done as a kid. I, you know, the first one was at two weeks old. Then I had one at six brain surgery at six months old, another one at 18, you know, I mean, but really from birth to about 36 years old that that one in in 2013 you were talking about for those third first 36 years. Yeah, I had some surgeries, but everything went well, everything was smooth, everything was like okay, surgery, pick up where you left off and go. And so this was the first time for me, too. That was like I, you're out for a few days, whatever, you're back on your feet.

Jeff: 8:35

These these 10 or 11 years were not like that. That was new to me. The difference is I was asleep the whole time. She was the one pacing the hallway with the friend going what's going to happen? I had no idea because I was. I was out for the surgery, so it was a little easier for me until I woke up and said, okay, are we good or not, you know, but but yeah, so it's, it's, it's a thing, though.

Catherine: 8:58

Yeah, so I feel like since that time, we have grown more community, more, in fact, online community, you know, reaching, communicating with people, all over. Yeah, On Facebook, you know, in Facebook groups and trying to think of some other I guess that's the main one, you know, just really finding that support through through other avenues than just my friends who didn't really understand what was going on.

Jen: 9:27

I think the tough thing is you don't know until you know, and you never want someone to be in the position that you are in and to experience it. But at the same time, you want their support and their compassion. You want more than just I'll pray for you. I guess I look at anyone that knows me well and cares about me. They're going to drop everything. Those are the people I want in my corner, and so, even if you don't understand, just imagine what it is like to be in a hospital room and have somebody that you're worrying about. Who do you want with you? So listeners, people watching that's what we want you to know is be the person that you would need. It's just that simple. Yep, agreed, exactly yes, catherine, how do you, how do you feel like you cope with being the patient caregiver dynamic during these challenging times?

Catherine: 10:13

I think I've gotten better, smarter, I think. You know, like I said, starting out it was a little uncertain. I wasn't sure what to do and, I'll be honest, I wasn't sure what to feel, you know, and so I felt like my emotions went kind of numb. I didn't like, was I supposed to be afraid? Was I supposed to be sad? Was I supposed to be angry? I didn't know what to do with that emotional dynamic. But as things have gone on, I feel like I've learned to be more compassionate towards Jeff as a caregiver. He's, you know, sometimes his body does things that he doesn't understand, and that's not his fault. It's just, you know, kind of the you know that cliche. It is what it is.

Jeff: 10:57

There it is. Now, what do we do with?

Catherine: 10:59

it. Yeah, exactly. So then it becomes okay, this is what's happening to him, this is what his body is experiencing. So how do I care for him during that time? You know what is my response? Is there anything I can do to be proactive? Help him to maybe prevent some of the physical, not ailment? Side effects, maybe Side effects thank you.

Jeff: 11:26

Post-surgery fun yeah, right, yeah.

Catherine: 11:28

I really have, you know, thought about can I get him to eat? I know it sounds silly. Maybe he's the type of person that your body is starting to feel the stress of not eating, not drinking, not resting. I really want you to rest right now, so giving him that permission right.

Jeff: 12:01

Yes, I used to feel so good, even before all this craziness, of all these surgeries, I would feel guilty for taking a nap. Seriously, I would feel so bad. I would wake up from my nap and go, even if it was accidental, lay down on the couch and you're gone, and an hour later, or whatever, you wake up and I was like, oh my God, what did I miss? What did we do? I'm so sorry. She said, why are you sorry? Your body needed it. It's cool. So I'm over that part, but you know you've, you've been very good and very gracious and, yes, being able to rest and be able to take care of myself and not feel like I should be doing something else.

Jen: 12:40

I think, as a patient, we often feel that we feel the guilt of what we should be doing around the house or with the children or whatever. But it sounds to me like you have a huge support system in your corner and that Catherine is looking at you saying hey, I just want you to feel better. Do what you need to do for your body. It's not like you're just sitting around being lazy.

Jeff: 12:59

No, exactly it's not. It's not laziness, it's, it's it's main maintaining your, your physical and mental well-being is what it is. It's not. It has nothing to do with being lazy. Lazy is different, that's you can be working and still be lazy Definitely.

Catherine: 14:23

We've done, lazy, don't get me wrong, oh, we don't know, lazy is fun, you know sometimes. You know you watch TV with ice cream and you enjoy it.

Jen: 14:30

Yes, we all deserve a little bit of that once in a while, for sure. Right.

Jeff: 14:54

Right, but but it's purpose. I would say anybody out there that's hearing this, seeing this be aware, be aware, be sensitive to what you need and be like I. I usually I kind of jokingly tell people you know, those of us with hydrocephalus are headache connoisseurs, right. So we know, we know what the I just didn't eat enough, I didn't sleep enough, drink enough, I slept weird and now I pulled a muscle. Kind of headache is, and I know the difference between those and maybe we should go to the ER. This sounds serious, you know. This feels like it might be different. We might want to check this out.

Jeff: 15:27

And you got to be able to feel that if you're not paying attention to yourself and your body and how you feel and how you because you know you better than anybody and how you feel and how you, because you know you better than anybody so if you're not paying it, you've got to pay attention and you've got to respond when you feel something. That's the important part, and so I feel like that surgery in 2013 and the one in 2002, we had to have two brain surgeries within 24 hours in 2014. Those two came really close. I think those were the two that came closest to killing me because I wasn't paying attention until I had to. And so you learn. Hopefully I've learned right, I've learned a little better.

Jen: 16:07

Do either of you feel like there are signs when this is happening, when it's time to get in there and get this looked at, and what kind of symptoms and signs would you see to?

Jeff: 16:18

get in there and get this looked at, and what kind of symptoms and signs would you see? What signs do you see? I know what I know when it's time.

Catherine: 16:24

But what do you see from the outside? From the outside, I go along with the mentality of he's fine, until he tells me that he's not. And if I see something, I will try to treat it or respond to it with the least invasive measures you know as possible, to start with Right, you know. So if I see that he's not feeling well, I, you know, I'm like do you need to rest, do you? You know, let's, let's rest, let's treat the what I'm going to say are kind of the easy, the low hanging fruit of, you know, taking care of yourself. And then, if it goes beyond that, that's when when red flags start to come up. And I'll give you an example In 2021, yeah, 2021, he was experiencing headaches, but he was still working, and so one particular day, he went to work with a headache.

Jeff: 17:18

In the morning.

Catherine: 17:19

In the morning with a headache, but the headache got continually worse. If I remember correctly, I think I brought you some Tylenol.

Jeff: 17:27

Brought me some Advil or Tylenol or something about halfway through the morning.

Catherine: 17:31

Over-the-counter pain meds partway through the day Took those up too. Fortunately at the time his job was just a few minute drive from us, so that was handy. So I ran up there, got you know, gave him some pain meds, um, came back home, and but that didn't do anything.

Jeff: 17:47

So two or three hours later he's like it should have kicked in and worked if it was going to work right, he's like I.

Catherine: 17:53

I still feel terrible, my head is worse, worse is pounding. So he came home from work early and crashed on our bed, and so only headache. But apparently he described his neck and shoulders Just being so stiff and he couldn't hardly move. So that's when red flags right Like this is a major problem.

Jeff: 18:30

Well, and the other thing is keep in mind with somebody, for somebody that's and maybe some of you out there that are listening and watching can relate to this. Anybody that's had surgeries their whole life or had a chronic condition that's caused them pain, your pain tolerance is through the roof, which is why those first two surgeries almost killed me before we got them done because the pain tolerance was so high. And so same thing here. I was feeling this, but I was like it's really bad. And so when it's really bad for somebody that has a really high pain tolerance, that's a clue for the rest of you that if they say it's really bad, jump on it, take action, because if it's bad for them like for me a two or three is like an eight for everybody else, so it's a big deal.

Catherine: 19:17

A lot of you probably know, when you go to the hospital they'll say rate your pain on a scale of zero to 10, you know, like two thumbs up.

Jeff: 19:25

Like we're rating a movie or something.

Catherine: 19:27

Yeah how do you rate your pain? Come on come on.

Catherine: 19:31

So there's kind of that within the medical community. There's that zero to 10 scale, you know, where they try and encourage people to say are you a four, a seven, a nine, a 25. And what we've really found is that for somebody who experiences pain, a chronic at least in our world, that that tends to distort that zero, normal 10, zero to 10 scale and so, like a, you know, like a six or seven on my scale is probably like a two on his scale and something that's like a 10 on his scale would be like a 20 on my scale, and it's just, it's just a variance of you know. What he has continually experienced throughout his lifetime has changed how he, you know, kind of interprets that zero to 10. So so back to that that story that one particular day he woke up feeling like it was probably a 20.

Jeff: 20:25

Like for me. I think I said it was like an eight or nine which which for me, which I never say that.

Catherine: 20:31

I never say that, because I can almost I.

Jeff: 20:33

The pain tolerance is usually pretty high, but that day it was bad.

Catherine: 20:38

Because I know that you know something that's really bad for him is really bad.

Jeff: 20:43

It's time to go.

Catherine: 20:45

So we went to the emergency room and had it checked out, that particular scenario. The way that one played out was they did admit him to the hospital and they did a lot of tests for all sorts of different things.

Catherine: 21:01

You know, one of the things that kind of is a little bit in the forefront of my brain sometimes with, you know, head pain is something like and the word fell out of my head meningitis, because that's right, that's super serious and that means an infection that's within you's, within the neck, the spine, the head, somewhere in there. And so they checked for that and it was clear. So I was like, okay, great, good, but it did take a variety, a whole lot of tests and in fact they struggled to figure out what it was until the neurosurgeon says you know what we need to do exploratory neurosurgery, because we can't see anything else. That's a fun phrase to hear, isn't it Right? Exploratory neurosurgery no-transcript.

Jen: 21:43

I think yeah anytime you hear that exploratory it's like. Oh, so you have no idea.

Jeff: 21:48

So you have no clue what's going on? Yeah.

Catherine: 21:51

Fantastic, yeah. And then the end of that story. They did the exploratory surgery. They found out that the piece of tubing that goes into his brain to draw the fluid out was completely blocked. Completely blocked, which meant that the whole thing had to be replaced, yeah, so um so brain surgery that was one of the brain surgeries that was required to save his life.

Jeff: 22:15

So well, there you go. So that was good times non-stop action around here someday definitely good times.

Jen: 22:22

They did the exploratory. Did they go ahead and do the brain surgery while they were in there doing the exploratory or did they finish, come talk to you and then do it?

Catherine: 22:32

They just went ahead and did it, Okay, good, yeah, they could see. I'm guessing they took the. You know there's a little tube and they took it out and probably went back.

Jeff: 22:42

Oh, there it is.

Catherine: 22:42

Not going to put that back in, let's put in one that's not completely blocked and fortunately it's been three years and doing great. So yay, take it.

Jen: 22:53

Right. Well, that's good news. Financial and emotional impacts have you faced and how do you manage them? I know that's a tough one right, that's a big one.

Jeff: 23:05

Well, I'll tell you what. Between the emergency abdominal surgery in 2013 and the two brain surgeries back to back within 24 hours and three weeks in the hospital in 2014, I distinctly remember getting that pile of bills right about the same time because there's always a delay, right, they got to make sure, figure out how much, they got to make sure they charge you everything they want to charge you, and so they sent me that pile of bills and I think I figured out it was just over half a million dollars between those three surgeries. So, thank God we had insurance and I think we ended up paying about 10 or 12,000 overall for all of it, which was still not a small chunk of change, but it beats half a million. So it's, there has been some impact, definitely some financial impact, which can impact emotionally as well, because when you're having brain surgery, you're not at work.

Catherine: 23:57

Everybody can't do both.

Jeff: 24:00

I know, shocking. It's really hard to be in two places at once. I'm still working on it. If I figure it out, you'll be the second to know. But I, yeah, it's hard to be in two places at once. I'm still working on it. If I figure it out, you'll be the second to know. But I, yeah, it's hard to be in two places at once. So working is the only way I know to earn money is work.

Catherine: 24:16

So yeah, financial stress is a thing when it comes to surgery like this, yeah, and I will say, you know, like he mentioned, probably it was probably $10,000 to $12,000 that was out of pocket and for anyone who's listening that might be new to dealing with medical finances. I want to really give the piece of advice to talk to them. If you get a bill and you're like I don't know how to pay for this, I don't know what to do, talk to them. They will most likely allow for payments and sometimes there are some hospitals that have something like a benevolence ministry or a charity department, or whatever you call it.

Catherine: 25:00

But the really nice thing about medical payments is, as long as you talk to them and make some kind of payment, they don't charge you interest. They're not credit cards.

Jeff: 25:10

Don't go against your credit because it's medical bills.

Catherine: 25:12

Right, but yeah, just communicate with them. Jeff has been really fantastic about doing that.

Jeff: 25:20

You know like hey, we're in the midst of talking to him about right now, actually, we're still dealing with some stuff from that three years ago surgery. So yeah, it never ends, it feels like. But talk to them.

Catherine: 25:32

Yeah, you're right, yeah, and, and you know, like I said, if you talk to the hospital and ask, ask about a ministry or or a service, you know like hey, is there any program that might reduce this bill for me? And we have had portions of bills that have been kind of written off by the hospital and reduced for us, which we're so thankful for, and part of that is be nice.

Jeff: 25:58

Please be nice. They're just doing their job too. So the hospital is doing their job and bill collector is doing their job. So yelling at them and getting mad and expletives and all the things that you really feel like doing some days bite your tongue, swallow your pride and be nice, because it will always turn out better that way. I've done it both ways. It doesn't turn out well, so we listen, learn To be honest.

Jen: 26:26

They're going through the same thing that we are. Just because they work in the medical field does not mean they have any easier than we do. Right? They still have to deal with the bills as well. Yep, yeah, exactly yeah, it's true, and it does not hurt to ask the questions and find out about the different programs if you don't ask, you'll never get the answer.

Jeff: 26:45

The answer is always no if you don't ask do, you'll never get the answer.

Jen: 26:48

The answer is always no if you don't ask. Do you feel like it has caused stress or tension within your marriage, or do you feel like you've been really good about working together to deal with everything?

Catherine: 26:56

Yes, there's been. There's definitely been times that are stressful. One way that I like to answer a question like this is to say that I made one decision about how to support Jeff, and that was the day that we got married, and I made one decision to support him, no matter what right In sickness and in health, you know, for better or for worse.

Jeff: 27:21

For richer, for poorer.

Catherine: 27:22

Right.

Jeff: 27:24

Medical bills or not?

Catherine: 27:26

And so, despite times of stress, I am absolutely committed to be here and to figure out what is the next best step. You know what is, yeah, and, like I said, there's times of stress and so, yeah, there's times where it might throw a tantrum I've thrown my shirt of tantrums, you know like no, this isn't fair. You know, I've thrown pity parties for myself, but I don't stay there, right, for anyone listening. I totally get it. You know, throw that tantrum if you need to, throw that pity party if you need to, but try not to stay there, try to feel the emotion and then see, I acknowledge that this sucks and it's not fair, but how can we move forward anyway? How can we move forward anyway? Is there something I can do to care for Jeff? Do I need to tell Jeff that I need a little bit of care? Sometimes, as caregivers, I need to be able to say I'm feeling stressed and overwhelmed and I need your support actually in this moment.

Catherine: 28:32

Yeah, and it just it goes both ways. By allowing it to go both ways, we've, you know, we have has strengthened our marriage in the long run. So it is not easy, but it's doable to allow it to strengthen your marriage. You know, how can I be marriage, how can I be compassionate, how can I be caring, how can he care for me and be compassionate towards me? It's really that back and forth, that give and take of needing and expressing and needing care and giving care.

Jeff: 29:03

I don't know why, but I'm a movie guy, I love movies, I'm a movie junkie, movie connoisseur even, and there was a Mission Impossible movie that Anthony Hopkins was in and he was talking about it and Tom Cruise was like it's going to be difficult. He's like this is Mission Impossible Difficult, should be a walk in the park for you. You signed up for Mission Impossible, so difficult is no problem. So it's kind of like it's like, okay, it seems impossible, but you've signed up for this and we both agreed that we're not quitting and so we can stay in it or we can figure out what the solution is and move forward.

Catherine: 29:43

If I can say just one more thing as well when we had been married a handful of years, I think it may have even been before surgery started, but we did some counseling, some marriage counseling. At the time it wasn't necessarily because we felt like we needed anything. As it turned out, it's been really served us going through all of the surgeries. And so I would just say as well if you feel like you're struggling in your marriage and you're struggling to care, and you're struggling to be compassionate or ask for the care in return, it's okay to ask for help outside the marriage as well, like from a counselor or a therapist or whatever.

Catherine: 30:14

I feel like that was such a godsend.

Jeff: 30:15

That was in 2008,. By the way, I remember that because it was because my sister would not stop bugging us until we went and talked to this person.

Jeff: 30:23

I said we're good, we don't have any like you can't. You can always make it stronger, there's always room for improvement. Right, I said, okay, fine, but I tell you, yeah, I feel like that was a godsend, because if we hadn't had that, I think it would have been worse If we had not known how to care for each other in a way that that that we've been able to through all of this with because of that amazing experience and that amazing counselor I with, because of that amazing experience and that amazing counselor, I think it would have been a lot rougher. It would have been a lot less simple and a lot harder. So, don't be afraid to ask for help.

Jen: 30:53

It's okay. Yep, absolutely agree with the two of you. My next question for you is what inspired you to create Hydro with Hope, and how has it evolved over time?

Jeff: 31:04

Man Hydro with Hope, that one. We were sitting in an exam room in a neurosurgeon's office waiting for him to come in to the follow-up visit in 2018 from that particular brain surgery. I had one in March of 2018. And so we were in there for another follow-up and we were just sitting there. Catherine was with me and we were sitting there and you know those exam rooms have paper thin walls, right, they're terrible. I was. It was kind of quiet and we could hear. I was listening and I could hear the kind of the not the conversation. You couldn't hear the words, but you could hear the tone. You can always hear the tone and the tone of the conversation was not great. You could tell it was something wrong. It was distraught. It was distraught.

Jeff: 31:45

The first thing that popped into my head was God. I wonder if that's a family finding out that their little baby is going to have to have brain surgery again or for the first time, or that's where my brain went was brain surgery and they're freaking out and they don't know what to do. All I wanted to do was run next door to that room and give them a hug and tell them everything's going to be okay and answer their questions. Hipaa doesn't like that, doctors' offices don't like it when you just burst into rooms like that. So I stayed there and I said, okay, we got to do something.

Jeff: 32:19

And that's kind of where Hydro with Hope was conceived. There in my brain was like what do we do? We've got to be able to help people. So over the next few years, we were like, okay, brick and mortar, online social media, able to help people. So over the next few years, we were like, okay, brick and mortar, online social media, what do we do? And ended up being online and through social media and we launched in 2022, published the journal. Not too long after that, it's been off and running from there.

Jen: 32:38

To go along with that. Can you tell us about the idea behind my Hydro Warrior story and its intended impact?

Jeff: 32:45

Yeah. So, as somebody who had had several brain surgeries at that point still already I don't know for those of you that don't really know the geography of the brain, the right behind the right ear here, which is where the shunt is, is on the skull behind the right ear. Well, that's where the short-term memory lives in the brain. So I've had a lot of trauma to that part of the brain. So my memory is not stellar in some areas and I've compensated a lot and I've been carrying on with that despite it. But even still, when we thought, okay, what are we going to do for a resource, I thought let's write it down. I've been writing stuff down my whole life. So we wanted to make a print journal. It's a fill in the blank journal. It's about 150 pages. There's a lot of targeted prompts on there Like hey, this is what I'm in this hospital for, this is my neurosurgeon, this is the hospital I'm at this, you know, and there's little things where you can draw pictures or put little print pictures and put it in there.

Jeff: 33:43

Here's what my hospital room looked like. Here's what my funky surgery hair looked like after I woke up from brain surgery. Or here's my gnarly scar I got during surgery, all the things. Part of it is supposed to be fun and kind of lighten the mood a little bit and give them something fun to do. Maybe it's a kid, maybe it's an adult, I don't know but part of it is record keeping, and so there's spots and there's a lot of blank pages for emotional download for people that are in there with you, and there's also a lot of pages that you can write down what people are telling you so that when you go to that next neurosurgeon appointment, you've got a resource in your hand, paper resource, not on your phone where it can crash, not in your memory where it will evaporate inevitably when you go to the appointment. It's on paper and you can, you have it with you, and the idea is to have one of those for each surgery that you have, and so you you say, okay, we're going to follow up for this one.

Catherine: 34:37

There's that book, take it off the shelf, take it with you yeah, because part of the other piece of that is if you go to a new care provider they will say something like oh, have you ever been hospitalized or had any surgeries For somebody who's had a lot?

Jeff: 34:52

At 18, that was yeah. How many was that at that point? It was about 13 at that point, you have done you kind of go.

Catherine: 34:59

well, how much do you want to know? Because yes and yes.

Jeff: 35:04

You know what you're really asking? Plenty.

Catherine: 35:05

Yes and yes. There's no what you're really asking but and so so there's there's the concept of making sure that you capture everything you know, like tell them all of the different surgeries and then any, and to be able to to say, you know, well, here I had this and it had this impact, and I had this and this impact. So it's just a really nice way to, like you said, you know, you can take it with you to a doctor's appointment and say, yes, in fact, I have all of it right here.

Jen: 35:32

Here it is. I think you know the great ability that we have now with the way that our phones work is you can actually scan that like a document if they for some reason need a page out of your book, right?

Catherine: 35:41

right. We did actually have one person, I think, a nurse, say you have it all written down. I did actually have one person, I think, a nurse, say you have it all written down. Great, I'll just take that and bring it back. I'll take it to the nurse's station, you know, write down all the stuff, copy it over Yep, and then bring it back by before the end of the appointment.

Jeff: 35:57

Which makes it easier for them too. They don't have to write everything down either.

Catherine: 36:00

They don't have to Just make a copy.

Jen: 36:03

I think we need more like this out there for all different conditions. I don't know if we need to make it fill in the blank, but everyone needs something like that.

Jeff: 36:12

I've thought about that. We're working on creating something a little shorter and a little more general so that it can be for just you know in general. We're working on it, everybody, Don't worry, We'll let you know when it's available.

Catherine: 36:25

Maybe, we can come back on.

Jeff: 36:29

That's right.

Jen: 36:31

What is your vision for the show Invisible Condition and Invisible Condition University?

Jeff: 36:36

The original vision for the show has changed. Actually, we've morphed over the last year. We've been on the air since April of 2023. As you know, everything kind of naturally changes over time and you kind of get your feet under you and figure out what you're really doing. And we launched our show on April 4th 2023, invisible Condition and we really we launched it with the intent of telling people's stories and saying, look, these people are living and yet thriving, and this is how they're doing it. Check out this amazing person with this incredible story and telling their story and tell it. That's kind of how it started.

Jeff: 37:17

And then, as the time went on, it got to the point that people were like well, we've got a way to deal with that condition or deal with that pain, or we've figured out a way to get rid of it. We've kind of brought on a lot more people like that in the alternative world that have helped a lot of people with those invisible conditions with a variety of things to help them to either get rid of the symptoms of it or cure it completely. Or it's been really cool to watch that kind of progress in the way it's been progressing. And out of that came Invisible Condition University, which was another need. We found that we, honestly, we kind of wish we had 10 years ago Invisible Condition University. So that is an online community that we formed this year that is designed to give people a voice that you know maybe wouldn't have one.

Jeff: 38:08

I mean, for instance, I'm the patient, catherine's the caregiver, right. So if you run into an experience at the ER or during surgery or at the hospital or whatever, and you go, what do I do with that? That just scared the crap out of me. Who do I talk to? Come to Invisible Condition University. It's a safe place to do all of that Question things, vent frustrations, scream, yell, whatever. And then between the last 10 years of our personal journey, you know, trying things some of them worked, some of them didn't lots of things, plus the last year and a half of guests on the show we have a huge list of resources that we want to share. That's the main reason we did it is to share all these resources so that you that are dealing with that and struggling don't have to reinvent the wheel and you don't have to do it by yourself. Let us help you, that's the, the idea behind that.

Jen: 38:59

That's fantastic thank you, how do you? We thought so well I surely hope you do. Oh wow, what has been the most rewarding part of your journey so far? You?

Jeff: 39:09

want to answer that, or do you want me to?

Catherine: 39:11

I'm guessing she's asking both of us, but sure, yeah, um, what do you want me to?

Jeff: 39:19

okay, uh. So I think my favorite part has been watching that progression of the show and start well, part of it selfishly. It's like, hey, we started a tv show and we kept it going and it's thriving and it's growing and it's doing well and people are enjoying it and people are watching it and the audience is growing. And that has probably been my favorite thing, because I've never done anything like that before. I mean, we got approached to do this TV show out of nowhere at a conference that we were promoting the nonprofit at, and I'm like TV show, what Are you crazy?

Jeff: 39:57

Nobody thinks they have a story. Because it's their story, it feels normal to them. But when you tell somebody I've had seven brain surgeries, that's not normal. People want to hear the story. That's kind of my favorite part is watching how that's grown and all the amazing people we've got to meet, including you, by the way, who is going to? I mean, watch out, for you know we're going to have a show coming up, so yeah, so it's just awesome the number of people that I've been able to meet and the stories that we've been able to put out there for other people to hear.

Jen: 40:26

Probably all the friendships you've gained out of all of this as well.

Jeff: 40:29

Yeah, I mean there's been people that have been on the. There's a couple of people that have been repeat guests because they've had amazing stories and then they've done something new and I'm like we'll come back on the show. We got to promote that, and so it's. Yeah, exactly, it's amazing.

Jen: 40:46

What about you, Catherine? Do you have anything to share on?

Catherine: 40:49

that one, I think, creating that community where people are really invested in the fact that it's not just about us, right, it's about the community. And how can we better foster people coming together? Piece of my kind of pet project around this, something that I'm passionate about, is the Western medicine working together with alternative medicines and alternative therapies and modalities.

Catherine: 41:25

When Jeff had those we mentioned earlier about Jeff having almost a year of migraines, we went back to the medical community and said he's got migraines nonstop. Help me, what can we do? And the neurosurgeon said well, I guess you're just going to have to live with headaches.

Jeff: 41:44

That was his response.

Catherine: 41:45

That was like.

Jeff: 41:46

Which I took better than she did.

Catherine: 41:48

He did. He was very gracious. I was gracious to his face.

Jeff: 41:52

Should have heard her when she got in the car, though she was not happy. What Are you freaking kidding?

Jen: 41:58

me, I can absolutely picture it right now. I think, like any wife, I can picture exactly what you would be saying right now.

Jeff: 42:05

Fit to be tied. I'm just saying.

Catherine: 42:08

I was not okay with that answer, just to say it lightly. We've really, we really made it a goal of you know what other, you know sorry what other opportunities or possibilities or modalities are available that could help with constant migraines. We did, you know, we found we found a chiropractic neurologist that really made a difference and that helped. We also found something called neurofeedback. There's a couple different types of neurofeedback. This one in particular was what's called low-emission neurofeedback, but it got rid of the migraines in a month.

Catherine: 42:49

About a month, I think it was yeah it was about a month.

Jeff: 42:51

It completely got rid of them it was amazing, like you know.

Catherine: 42:53

I think it was. Yeah, it was about a month Got him completely got rid of him it was amazing.

Catherine: 42:55

Like you know, I don't. I get it. The neurosurgeon has a very limited scope of practice, but I think what drives me the most crazy is when the medical community will not or cannot or for whatever reason doesn't share about other possibilities. I know there's a whole lot of politics around that and there's a whole lot of legalities and all this stuff, but I still come back to the fact that Western medicine should be working together with alternatives. Somehow that has to shift in our country.

Jeff: 43:29

So you weren't at the appointment that I was at and if you were, you probably would have had a similar response with my current neurosurgeon which I love, by the way. He's amazing. I'm not trying to throw him under the bus or anything, but with this last appointment that I just had, I told him he saw me right after surgery and I was a mess. After this last surgery I came away with some pretty serious side effects and since then we've been able to alleviate probably 90% of it, 90% of the time, through some alternative modalities again. And he saw me this time and said good Lord, man, what happened? What did you do? Because it was noticeable, I mean, it was really noticeable. And I told him and he goes yeah, I could see how that could work. I was like what, where were you a year?

Jeff: 44:13

ago no-transcript and help them work together.

Catherine: 44:45

Yeah. So to to your original question of rewarding. I think it's discovering that in myself and starting to find other people and organizations that feel the same way. That's been hugely beneficial.

Jen: 44:57

Yeah, and honestly, to go along with what you were talking about, I wish that they would all be willing to work together. So I know that a neurosurgeon they want to cut. That is what their entire job is all about. They are specialists designed to go into the brain. They want to cut, so they obviously are not meant to go and learn the other things and do the other things. But I still believe that all the physicians, all the specialists should be able to work together and talk together to see what they can do as a treatment care plan to make you feel the very best that you can and to help you as much as they possibly can. But not all of them feel that way or want to try.

Jeff: 45:35

In fact, I was just speaking at a conference last week that was. This organization is specifically designed for that, because the founder of that nonprofit was so frustrated with the fact that they're not working together, and so that is the design of her entire organization. And so, yeah, it's, they're out there. They're out there. It's starting. Slowly but surely. We're seeing stuff like that crop up, but not nearly enough, not nearly often enough. So, yeah, anybody that's out there doing that kudos and keep up the good work and spread the freaking word, because we need more of you.

Jen: 46:14

Absolutely. I almost feel like there needs to be like an online phone book of some sort where we share all of this helpful information with each other so that we can get it and so that we can also pass that on to someone else that needs the help 100%. This is how it should be.

Jeff: 46:29

Well, that's what ICU is designed for. See, that's the thing. No-transcript. We have so many other resources that know the rest, so we want to share that, and so that's it's. You know, it's a small step, but it's something we can do.

Jen: 47:09

It's something that can help other people, and that's great Exactly. So my next question for you would be how do you balance family time with all the work that you guys are doing?

Jeff: 47:18

Well, carefully. So, yes, good, good answer. One um one person that we've worked with for a while now has a philosophy that I really like that. It took us a minute to figure it out and to absorb it and to embrace it, but it's. He just says you know what it's one life, you have one life. It's one life. It's not here's my family life and here's my Google calendar might look like that when you here's the kids practice and here's the cheer practice and all the things, and here's the Zoom calls and we're going to be on this show and whatever. It looks separated on the calendar, but really it's all one life. You know, when you go somewhere, when you're traveling, when you're with the family, when you're not with the family, it's all together. You shouldn't separate it because it is really just all one life, and so you just kind of plug the things in for that certain day that you need to and live life. You know, yeah, yeah.

Catherine: 48:15

Yeah. So I think you know, like you said, we sometimes people will use the word balance, right, you know, like a work life balance, and you know to to Jeff's point, it's not necessarily about balance as much as it is. You know what is the highest and best use of my time right now? That's the phrase that I kind of like to ask myself. Is what is the highest and best use of my time right now? That's the phrase that I kind of like to ask myself is what is the highest and best use of my time right now? And is it, you know, spending time with my children, is it you know? We have our kiddos now we have our oldest just recently turned 21. And we also have two teenagers that are in high school, and so sometimes the highest and best use of my time is talking to my teenagers hanging out with the teenagers and laying on the couch with them and make sure they know that, um, we're still here for them and we still love them, um, but I, you know, and so sometimes that's it.

Catherine: 49:04

And then sometimes it is, you know, like, for example, maybe right now you know, somebody else is picking up the teenagers from high school and, um, can, you know, join this amazing podcast, you know, and so it really is. You know, like, what's, what is it for right now? What do I need to be doing right now? And in answering that, with you know, whether it's family or kids, or making dinner, or eating dinner together or taking, and there's been plenty of times where we have eaten with the kids, you know, again, fortunately our kiddos are teenagers, so, um, so it doesn't mess up their sleep schedule too much, but we'll have dinner with them, you know, like, at eight or nine o'clock at night. I know that's not fabulous, um, but that's, that's when we're all in the kitchen, that's when we're all together. So, roll with it.

Catherine: 49:56

Yeah, just take those moments. You know kind of no matter what time of day it is, um, and really we try and do as much of our business stuff um while they're at school as we can.

Jeff: 50:09

So well, like speaking of business stuff, we're taking them with us. We're taking two of them with us for the next business trip we're taking. We're going to Orlando in about a month and we're taking our oldest and our son, our oldest daughter and our son with us this time, and we took the son and the youngest daughter last time. I mean, you know, immerse them in it, man, they're going to learn something too. You know, they got to see what we're doing and that's the best way to do it. So this time so that's still one life, you know bring them along.

Jeff: 50:36

Why not so absolutely.

Jen: 50:38

I think having them learn what you're living and what you're doing is going to help them in the long run too. Exposing them to all of this can only make them better people.

Jeff: 50:48

Right, right. That's what we're hoping.

Jen: 50:50

Yeah.

Jeff: 50:51

Yeah.

Jen: 50:51

What advice do you have for other families navigating chronic conditions? Man, there's probably a lot.

Jeff: 50:58

There's a little yeah, what's your top thing, right? What would you tell them? If you had somebody in front of you right now? What would you tell them first?

Catherine: 51:05

I think. Coming back a little bit to the discussion about Western medicine plus alternative therapies, so your Western medicine doctor might tell you something, um, but they really believe is true. You know, for example, your condition is incurable. You're going to live with your condition forever.

Jeff: 51:23

You're just going to have to deal with headaches.

Catherine: 51:25

Or you're just going to have to live with headaches and they, when they tell you that, they might really believe that's true. Um, but I would really encourage you to believe that's true, but I would really encourage you to. If you really feel like that is not okay, you're not okay with that answer or it doesn't really feel like it's in alignment with what you want in your life, I would really encourage you to advocate and seek out other opportunity, other modalities, other therapies, other communities that might know about therapies and modalities that you've not tried or experienced or considered. Because there are, there are options. There really are a ton of options, and so it's not just about one Western medicine course of action. There's there's lots of different ways to go about taking care of something.

Jeff: 52:17

And, by the way, I feel like this is stating the obvious, but a lot of people have forgotten this. In the medical world specifically, when you go to any other industry, people shop around, people get second opinions, people fire this guy and hire this one instead. You can do that with your doctor too. If you don't like what he's telling you or what she's telling you, fire him, go somewhere else and you don't have to say you're fired unless you really want to. It might feel good, but really I mean, if you don't like what they're telling you, find somebody else that will listen, because there are thousands and thousands and thousands of doctors out there that you can go to and it is okay, encouraged, even if you're not sure about what they're telling you. I mean, with the example of migraines, I'm not going to listen to that. I'm sorry, you're just going to have to live with headaches. Thank you, don't let the doorknob leave a lasting impression. I am out of here. We're going to go find something else. So that's my biggest thing is please just be your there.

Catherine: 53:17

It is who knew that was a tongue twister?

Jeff: 53:20

Be your own best advocate for crying out loud. It's your life. You know better than anybody else how you feel and what you can handle, and so don't let them push you around. They are just a human being just like you. They just have more zeros behind their name on the paycheck. Okay, you know, their time might be worth more in that scenario, but they're people, just like you are. You can move on, yep.

Jen: 53:44

Yeah, and we do not have to accept their answer ever.

Jeff: 53:49

They have a form specifically for that. It's called an AMA form Against Medical Advice. You think they just came up with that yesterday. They came up with that because they know people were going to push back. They knew people weren't going to agree with everything they say and they wanted to cover their butt. So I'm not trying to throw the medical profession under the bus. I wouldn't be here without it. I love the neurosurgeons and the anesthesiologists of the world, but they're not always right. Just going to say it, they're not always right.

Jen: 54:18

No, they're not, and there are ones that are right out there and it's okay to go and find them.

Jeff: 54:23

Yes, Thankfully, I've had a lot of them in my life that have been 100% spot on and I'm still here to tell the story because of it. But sometimes you got to challenge them Exactly.

Jen: 54:33

My last question for you two today is how can listeners get involved and, of course, people watching get involved with Hydro, with Hope, or learn more about your initiatives?

Jeff: 54:43

Yeah, so you can go to hydrowithhopecom and there isa donate now button right there staring you in the face when you get to the homepage. So it's no secret, we are a 501c3 and any donation will be tax deductible, all the things. So I encourage you to do that. That'll just help us to get more places to spread the word about my story, our story, and get those journals into the hands of the people that need them. And so that's Hydro with Hope.

Jeff: 55:11

For the TV show I mean, if you want to be in touch about that invisible condition at e360tvcom is my email. Reach out and let's chat. If you know somebody that would be an amazing guest, or if you know somebody that might want to get the word out about what they're doing with their business through advertising on the show. There's commercials on the show. It's a TV show, so, and we've got a pretty big audience, so it'd be worth your money to do it, I think. So reach out for that.

Jeff: 55:39

And then for the community Invisible Condition University, if you go to myfreegiftfromjeffcom that is a website we've got set up to join the community, and if you go to that particular page, myfreegiftfromjeffcom you'll get the first 30 days for free. It's really inexpensive to be a part of the community. It's only 17 bucks a month. But we want to give you the first month for free to check it out. You can come to a couple of meetings, see what we're all about. I know you'll love it and we'll see you for many, many more calls. But try it out for free. That's all the. That's all the places. There you go everybody.

Jen: 56:16

That's wonderful. It's been such a pleasure to have the two of you on and I need to bring you back and have you expand on some more things or, you know, share the next few things that are coming out.

Jeff: 56:26

Thank you so much, absolutely Love it.

Jen: 56:29

Thank you again, my spoonie sisters. Until next time, don't forget your spoon.