How Pat overcame her leaks - One patient's success story

Too many patients suffering from leaks think that they're sentenced to struggle with their condition for the rest of their lives. That couldn't be further from the truth. Today's guest is Pat, and she shares her story about how he finally had enough with trying to manage her problems and found a solution that made an incredible, immediate difference for her...

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Music:
Rainbows Kevin MacLeod (incompetech.com)
Licensed under Creative Commons: By Attribution 3.0 License
http://creativecommons.org/licenses/by/3.0/

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Transcript

The following transcript was generated electronically. Please let us know if you see any transcribing errors and we'll get them corrected immediately. 

Bruce Kassover: Welcome to Life Without Leaks, a podcast by the National Association for Continence. NAFC is America's leading advocate for people with bladder and bowel conditions, with resources, connections to doctors, and a welcoming community of patients, physicians, and caregivers, all available at NAFC.org. This podcast is supported by our sponsor partner, Medtronic, maker of InterStim systems for bladder and bowel control. To learn more about InterStim therapy, visit controlleaks.com. 

Welcome back to another episode of Life Without Leaks. I'm Bruce Kassover and joining us as always is Sarah Jenkins, the Executive Director for the National Association for Continence. Welcome, Sarah. 

Sarah Jenkins: It's great to be here. 

Bruce Kassover: Yeah, I'm excited too because joining us today is Pat. She's a 74-year-old grandmother and great grandmother and an avid golfer.

And she also was somebody who discovered that she had an issue with bladder control and she found relief and in the process also became an ambassador for Medtronic. And she's going to tell us about all of that. So welcome Pat. Thank you for joining us. Thank you very much. So tell us a little bit about yourself, what your career is, what you're doing now.

Pat: Well, basically at a very young age, when I was a mother of 4, I needed a job. So I got a job at a company that manufactures beverage equipment. I started entry level, but I was able to move through the organization and went back to school for some vocational training on secretarial. And I eventually moved out of the plant in the manufacturing environment into the office and became a marketing secretary.

And then I was a customer service agent, and then I was a supervisor for that department. And then I was the manager for international domestic and the support group. So life just kept getting better and better. And then the company decided to spin another company off. And I was part of 9 people who was on the project plan to start a new business, selling the service parts for equipment and through that exercise, I became a vice president, customer care operations.

And I had. The customer care group, I had the product management and I had the analysts and I had a fun time because beverage is worldwide and our facilities were all over the world. So I was able to travel. Lots. That's very cool. What was the most exotic place you've been to? I've been to Tianjin, China, through Beijing.

I don't know if it's exotic, but it certainly is different. In fact, we were there on May Day. The year I was there, it was May Day and I was with my boss and one of my employees and I looked at my employee and I said, Jodi, do you know that we're the only two blondes in Tiananmen Square? 

Bruce Kassover: Oh, that's great. That's a little bit of a National Geographic moment, I think. 

Pat: It was. You're right. 

Bruce Kassover: So, tell me, so where are you now, by the way? 

Pat: I am in Maple Grove, Minnesota, and I have retired when I was 65 from that career, and then I had two other part time jobs I did, and then I kept retiring because I thought I wanted to golf more, and then I started working at Total Wine, and I've been there for five years, and I think I need to retire again, but it really is a lot of fun. 

Bruce Kassover: Well, staying active is awesome and certainly golfing is a great pastime. So how good a golfer would you say you are? 

Pat:I have two hole in ones. 

Bruce Kassover: Wow, that's exciting. That's really awesome. I mean, most people hope for one, [you] have two of them. That's pretty amazing. Well, that's excellent. So, however, you are on this podcast for a reason beyond golfing. So tell us, why are we speaking today? 

Pat: We're speaking because when I was in my early 60s, I started to find that I spent more time in the bathroom than I did at my desk. So then I decided that there was something wrong and I went to a urologist and she did some tests on, on my bladder and found that I did have a leak problem.

Bruce Kassover: What was your official diagnosis? 

Pat: My urologist diagnosed that I had an overactive bladder that I had incontinence due to the fact that it was working constantly all the time. I thought I could use medication to help, and that worked for a very short period of time. And then the second thing we tried was Botox.

I did two Botox injections, and that didn't last very long. And the day that she sat across from me and looked me in the eyes, and she said, Okay, Pat. We have one more option and I had been putting it off because I think that we always have a slight fear of surgery when you say the word surgery, but she says, what are you going to do?

And I said, okay, I'm going to do it. And that was in December of 2022, and I haven't looked back. 

Bruce Kassover: Wow. Well, that's great. But I would imagine that your symptoms must have been significant enough that you felt like something like that was necessary. 

Pat: Absolutely. In fact, the turning point for me, I had mentioned this to other people is, I like to golf, and I golf with my colleagues, and they're all guys. And we go to Robert Trent Jones down in Alabama every year. And I spent more time going to the bathroom, but then we were sitting on this one hole and the group in front of us were a little slow, and I looked across and there was a restroom there, and I said to my partner, David, so I need to, I need to go to the ladies room, and he said, “sure.” 

So we drove around and we, I got out of the cart and I completely wet myself. Between the tears and the embarrassment, I didn't know what to do. And I came out from the restroom the best I could. And David handed me his jacket and said, here, Pat, you wrap this around your waist and tie it; nobody will ever know. That was my turning point. 

Bruce Kassover: Wow. I can imagine that that would have to be, you know, something that really does sort of leave a mark. So you went and you saw a urologist. Did you just go straight to a urologist or did you talk with your general practitioner first? 

Pat: My general practitioner had given me pass to see a urologist, yes. 

Bruce Kassover: Was that a difficult conversation to get into or was that, or are you fairly comfortable with that? 

Pat: I was fairly comfortable with that. I think after a certain age and having four children you probably are more comfortable with medical stuff. 

Bruce Kassover: I could imagine that that's very true. So you go to see a urologist and you explain what your symptoms are. Was she able to give you a fairly straightforward diagnosis or did you have to go through a lot of testing? 

Pat: Well, we did some testing. We did run some tests and I, and I think that's a very good part of the whole process is that you have eliminated everything that could be affecting it and you come down to the fact that you just have a very lazy bladder and I've never been sorry about it.

I am, I feel blessed. I am so grateful that Medtronic has done what they've done to invent and develop this kind of program and the products. Thank you very much. 

Bruce Kassover: That's excellent. So you have a diagnosis and you try some things that just aren't all that effective for you. What was, what was that like, you know, going through the process of, of trying other solutions. First, was it frustrating? Was it at times encouraging? How did you, how did that, that go down? 

Pat: I don't think it would ever be encouraging. It was just a temporary thing to do for, for me. I think I knew after about the first few months that I was going to have to have something more permanent to happen.

What happens is you spend a whole lot of money on pads and paper products to be in your bed and be, that you wear. It starts to make you wonder whether you're putting your money in the right place. You know what I mean? 

Bruce Kassover: I know exactly what you mean. Yes, especially because when you do wind up going through tons of pads, it's, it's expensive. It's bulky. It's awkward. It's, it's not always easy to, to hide and nobody wants to, you know, advertise that sort of stuff. So, so yeah, I guess that you really were just at, you were done with it, weren't you? 

Pat: Correct. 

Bruce Kassover: So you've tried a bunch of things and then your doctor recommends neuromodulation. Is this something you've ever heard of before?

Pat: No. 

Bruce Kassover: So what did you think when it was first presented as an idea? 

Pat: Well, I had her give me a full explanation on exactly what it was and how it was operated, how it would operate. And I also had her, and she's, she's excellent at this. I had her give me what was involved in actually getting the InterStim, the implant, the test phase first, and then the permanent phase second, and then the other thing that she had mentioned is the option of the rechargeable battery or the non-rechargeable battery.

And so I got a lot of information from her, but she's a very big proponent of the Medtronic product too. She knows it very well, and I believe that she's probably given a lot of patients that advice. 

Bruce Kassover: On this podcast and at NAFC. org, we do talk a lot about the InterStim device and the process and neuromodulation in general.

So there are some listeners who may be familiar with it, but for those who aren't, let me just give a real brief sort-of overview because it is something that has been done literally hundreds of thousands of times, and it has a tremendously impressive track record of success for many people who are having exactly the sorts of symptoms that, that you were having and it's really simple, isn't it?

It's, it's just a tiny little implant, like the size of maybe a half dollar that's put sort-of lower back right above your butt. Is that, is that right? 

Pat: Correct.  

Bruce Kassover: And there's a little tiny lead wire that goes to a particular nerve, the sacral nerve, and it just gives a little bit of electrical stimulation. And that is used because it helps with the brain-bladder communication. And it might seem like, you know, surprising or sort of miraculous or, or strange to people who don't realize that this brain bladder connection is, is a legitimate thing. And if you can address it, you can really improve symptoms. So, I mean, were you skeptical at first or just hopeful that this was actually going to be something that would make a difference for you?

Pat: Well, I think you start out with hopeful because you've exhausted all other options. And then I don't think ‘skeptical’ would ever cover it for me because I was clearly communicated by my doctor, urologist, and the steps that you take to try the InterStim bladder control module is perfect. It gives you – for at least seven days – the experience that you can actually compare it to what your life was before you put that module, that InterStim in.

So after you go through the test phase I think it's a no brainer. I think it's, and so many people I've talked to that have felt the same way, if they can have 50%, people will say, “If I can get 50 percent improvement, I would be happy.” Well, most of the time, I'm 75 percent improved.

Bruce Kassover: That's a pretty significant improvement. And how fast did it take for you to see some improvement like that? 

Pat: Oh, I think immediately it was actually immediately. 

Bruce Kassover: You mean like same day immediately? 

Pat: Yep, absolutely. It was like black and white. Now I'm wetting myself and the next day I'm not. 

Bruce Kassover: So what did that feel like? 

Pat: Freedom. 

Bruce Kassover: I believe it. That's amazing. And so you did your test and you said that was for a week that that that you had to test done? 

Pat: And the other part of that is that while you're doing the test phase, a Medtronic representative is in constant contact with you on a daily basis to check on what you're, how you're doing, and you keep track of how many times you've got up at night and how many times you've had to urinate, or if you've had any leakage during the day.

So they keep pretty good track, and then they make adjustments. So, if you've had a, a three times I got up in the night, they will make an adjustment to the InterStim to be able to correct that. And even after you have that in, you can make adjustments, after you've had the permanent one. 

Bruce Kassover: That's interesting because that's one thing we actually hadn't mentioned earlier. So you, you were also finding that you were having to go more often at night than you wanted to as well, huh? 

Pat: Yes, sir. Yes. 

Bruce Kassover: How many times were you, were you going typically? 

Pat: Oh, probably three to four times at least. 

Bruce Kassover: Wow. That makes it tough to get a decent night's sleep then. 

Pat: Yeah. And then it starts to affect your beverage intake. I mean, you don't feel like you can drink water. So you stop drinking water or you stop drinking anything a certain time before bed, which it probably isn't good for your health anyway. You still should be drinking fluids. So it really does interrupt the normal operation of your body. 

Bruce Kassover: If you're, you're working at Total Wine, that's got to make it even more difficult!

Pat: Yes, it does. Yeah. Yes, it does. Yes, it does. 

Bruce Kassover: And you know, it's what's terrible is that they do say that that alcohol is a bladder irritant and it's often usually recommended that you try and you know, limit your, your intake as well. So it's got to be very tempting to be around all that wine all the time.

Pat: Yes, it's very tempting. 

Bruce Kassover: But I guess every once in a while, it can't be too bad!

Pat: You have to have a little joy in your life, right? 

Bruce Kassover: That's very, very true. Now, before we go on, because I have been monopolizing things, I wanted to turn to Sarah and see if Sarah had any particular questions that she wanted to ask as well.

Sarah Jenkins: Yeah. You know, I, I think that your story is great and I think it's something that a lot of people need to hear because there are so many people who are, they think they've tried everything and they might not be aware that this is out there or they might just be really nervous about an option like this.

So, I guess, what would your advice be to people who are kind of on the fence or nervous about having surgery. What, what would you tell them? 

Pat: I think I would probably tell them that the care and the training and the education that you get from both your urologist doctor and the Medtronic organization will by far alleviate any concerns or problems you have.

And the program that you've developed too, to have us ambassadors, people who have had that experience, the everyday person to talk to these people is absolutely amazing. I think it's the most amazing thing anybody could do because it really makes me feel good and I can help them. And if I talk to someone and I can explain my seriousness with my bladder control, they're relieved.

Sarah Jenkins: That's great. Did an ambassador speak with you then before you had your surgery?

Pat: No, I didn't have an ambassador. I didn't, I don't know how long the program has been working, but that's been since ‘22. So I don't know if the program was in place at that time, 

Sarah Jenkins: Well, that's great to hear. And it's also great, I think, to let people know that expectation wise, it might not be 100%, right? They shouldn't go into this thinking they’re going to be100 percent cured in all cases, but 75% is a huge, huge number and a huge improvement. 

Pat: That's exactly right, because I do not let anybody think that, believe that you will be a hundred percent. We are all human. So I, I wouldn't expect, nor would I help educate anybody to expect it to be perfect because this is an improvement, it’s a quality of life improvement. It's not the end-all-be-all; that's in God's hands, I would say. 

Bruce Kassover: Are you back golfing again the way that you were beforehand? 

Pat: Yes. 

Bruce Kassover: Oh, very good. Very, very good. I'm glad to hear that. So, Pat, as you know, this podcast is called Life Without Leaks. And one of the things we'd like to do before we leave is ask our guests if they could share a hint or a tip or a little bit of advice to help the people who are listening live a life without leaks. So now I'm going to ask you, do you have anything to share? Any thoughts about that? 

Pat: A life without leaks is, in some people's mind, probably a dream, but it can become a reality because life with leaks can be fixed by medications, try; Botox sometimes works, but ultimately the InterStim implant device is the answer. It has made my life normal and I appreciate it.

Bruce Kassover: Well, normal is what I'm sure that, that most people are looking for. So that's incredibly encouraging. So thank you, Pat. We really appreciate you sharing your story and your time with us. And we certainly hope that the people who are listening get motivation out of it to go and see their physicians, to talk with them about the issues they're having and to find a treatment that's right for them, whether it's InterStim, whether it's something else, but to go out and take action rather than, than living with, with leaks and with suffering, so thank you.

Life Without Leaks has been brought to you by the National Association for Continence. This podcast was supported by our sponsor partner, Medtronic, makers of InterStim systems for bladder and bowel control. To learn more about InterStim systems, visit controlleaks.com. Our music is “Rainbows” by Kevin MacLeod and can be found online at incompetech.com.