Went in for Surgery, Left With a Lifelong Disease | Hypopara Series: Part 2
In this episode, Kerri Fitzgerald speaks with Patty Keating about her experience as a post-surgical hypoparathyroidism patient. What was supposed to be surgery to address complex tumors on her thyroid became what felt like a life sentence with a chronic health condition. When her journey toward understanding her rare disease took a dangerous turn, resulting in a heart attack, Patty took charge of her life and turned her life sentence into her life’s work. Now the Executive Director of the HypoPARAthyroidism Association, Patty has dedicated herself to elevating the patient voice to spread education and awareness about hypoparathyroidism.
Watch part 2 of Patty’s story.
Kerri Fitzgerald:
Patty Keating, welcome to My Hero 360.
Patty Keating:
Thank you. I’m excited to be here today.
Kerri Fitzgerald:
We’re excited to talk to you. You are the executive director of the HypoPARA Association. Now, before we talk more about the Association, I do first want to discuss how you came to work for the organization. You’ve been living with hypoparathyroidism for over 10 years. Can you share more about the condition for people who are not familiar with it, and how did you come to understand your diagnosis?
Patty Keating:
Yeah, it’s interesting. I’m 60, and my journey started at the age of 50. In my 49th year of life, I decided to get healthy and be ready for 50 and get a trainer. I started exercising, and I was in actually the best shape I had ever been in my life, then I was diagnosed with complex tumors on my thyroid. My sister had passed away early on from a thyroid situation, and the doctor was like immediately, “Yes, we need to get these out. They’re indeterminate right now, but we really are leaning in a way that we need to get these out.” I had a second opinion. They agreed as well. We decided to take them out, and they removed them. Before surgery, you’re talking to the surgeon and they’re like, “Oh, this is the best. He does all the parathyroid surgeries.” I went in and I think I remember a little tiny conversation about, “There’s 1% of the people that end up with parathyroids.” I’m like, “Okay, yeah, what the heck is a parathyroid?”
I had no idea what that was or to the level of degree that it affects the body. I had the surgery. Immediately after, I could feel this buzzing and tingling and I’m like, “Whoa, what is going on?” Then I felt like a vibration happening through my body. I called the surgeon, “What do I do?” He said, “Just keep taking calcium. It’s just your calcium acting up.” Then my fingers started to, then my toes would cramp up, my hands would cramp up and I’m like, “What in the heck is going on?” All the while, I felt like I was kind of losing my mind because I was like all over the place.
I was working with my endocrinologist. I was the only patient in the practice at the time that ended up with hypoparathyroidism. They were working right alongside of me trying to learn as much as we could learn, and about 6 months in, I had a heart attack from the lack of calcium, magnesium, and potassium. They took me in for heart catheterization, and during that they’re like, “We’re not doing a stent. We have no artery issues. This doesn’t make any sense.” But really what it came down to was the lack of calcium and magnesium, potassium that really caused the heart attack because calcium controls the heart rate thing, or it affects it. That’s where I ended up finding the HypoPARAthyroidism Association because I was like, now what am I going to do? This is like a lifelong sentence of, I’m going to be hypopara. How am I going to live with this? Or am I going to live with this? I can remember at some points thinking, this is my life sentence. I’m going to die from this.
I found that there was a conference happening, and it was in Jacksonville, Florida. Luckily, I was working down there at that time of my life. I was able to go to this 3-day conference. I remember sitting in the parking lot just crying. My friend went with me, that I worked with, and I was like, “This is not a club I want to be a part of. I can’t go in there.” She’s like, “No, let’s go. We need to hear the information. We need to understand this better.” We divided and conquered. She said, “I’m going to go into some of the classes, you go into those classes, we’ll compare notes, and we’re going to learn as much as we can to be able to get you through this.” We went in, and I will say that looking around the room, I was scared. I was like, “Oh my gosh.” People began to embrace me and go, “Oh, who are you?” And, “Welcome in. Obviously, it’s a club that nobody wants to be in, but come on in.”
I remember sitting and eating lunch and dinners with doctors that were just so open and willing to talk to me about the condition. It was pretty heartwarming to see that there were people out there that were willing to help. It’s been a long journey. My surgeon did not tell me that they took the parathyroids out, which is the reason that I probably wasn’t being treated as appropriately with the amount of medication that I needed to be able to continue on. I found that after the heart attack. I ordered the lab reports and all the reports. I’m like, “What went wrong?” It showed that the parathyroids were identified in the lab reports, so obviously they were taken out. It’s been a tough journey getting there, having to go through that. I will say it’s helped a lot in understanding the whole disease and what I needed to do to take charge of my life to be able to just plow forward and not allow it to be a death sentence for myself.
Kerri Fitzgerald:
It’s a big change that I’m sure you weren’t prepared for. You said you were on this health journey and then this happens, that’s a big change and disruption to your life. I want to ask, what are some misconceptions you think are out there about the condition that you would like to correct?
Patty Keating:
I think some misconceptions might be that conventional therapy will work and will treat the whole person. I think that conventional therapy has worked for a lot of people for a lot of years, and it will continue to work for a lot of people. Not everybody is going to want to move on to new treatments or anything like that, but I think it treats the calcium. In my case, and in a lot of the different patient cases that we hear about, it doesn’t treat the whole. For example, you can still have a lot of brain fog and all the different symptoms, muscle cramping, and all the tingling and everything that happens, but your numbers may be looking okay, so it doesn’t take care of all the symptoms. The other thing that I think about is that we do have a treatment option now and we have several in the pipeline, which is very exciting, and it treats the PTH as well, so that then the calcium is treated along with it.
I think the misconception from patient perspective or as a whole is, “Oh, I got a treatment, it’s going to be 100%. This is my cure.” It’s not a cure. In fact, we are still going to have those days when it’s not the greatest. It’s kind of like diabetes. They’ve got tons of great treatments for diabetes, you treat it, but every day isn’t great. There’s some days you’re going to go high and some days you’re going to go low. It’s an adjustment. I think potentially the misconception that it’s 100% going to go away. That’s not reality. Once we’re hypopara, we’re hypopara. We will have a treatment that helps us live much better, but not 100%.
Kerri Fitzgerald:
We’re going to talk about treatment in a little bit in our conversation. When you say standard treatment, that’s supplementation of different vitamins and minerals, right?
Patty Keating:
Yes, it’s calcitriol, it’s calcium. The challenge with that is, for me, 10 years ago I had the heart catheterization, we didn’t find any issues with the arteries or anything. Fast forward 10 years after an enormous amount of calcium, an enormous amount of calcitriol trying to get myself level, I now have moderate to severe calcifications. You could say, “Eh, a 60-year-old woman is going to have some issues.” Which is true, but think about that 10-year period. From nothing to where we’re at today, we could probably point a little finger at that.
Kerri Fitzgerald:
Absolutely. I want to talk about the association and your work there. You worked in the beauty industry for many years. You worked in leadership roles overseeing a network of beauty locations, and now you’ve parlayed all that leadership, executive knowledge, and experience into your work at the HypoPARA Association. You started as a volunteer and then you joined the board and served as chairman before transitioning to your current role as executive director. What first drew you to the organization and how did you learn about it?
Patty Keating:
Like I mentioned earlier, it’s a quest to be able to help myself. I found the conference, and from there, I spent the next couple of years really trying to get myself again under control. I was reading every paper and grabbing everything and taking it into my doctor’s office and begging for help. They really were great at being able to listen to things that I brought in and thinking about different options. I think that really, it was about that. It was about, how do I do that? Then I got myself to a point where I wasn’t running to the emergency room every month, sometimes a couple times a month. Imagine anytime my heart would flutter, I’d be like, “Oh my God, it’s coming again. I’m going to have a heart attack again.” I got myself stable and I felt like, okay, I can somewhat live this life.
It took me a while to get over what was done to me. I went in to have a thyroid out and ended up with a lifelong disease, which a lot of our patients do. Once I was able to accept that and decided that I was going to make this a mission to help others so that they don’t get in this situation, or if they do, in our case as the Association, how can they live their best life from there? We are a victim, but we can live our life as a warrior and be able to help ourselves and help others by turning around our thinking and our treatment a little bit to be able to do that.
Kerri Fitzgerald:
I think it’s up to about 75% of people who have the condition, it’s post-surgery that they get this.
Patty Keating:
Yeah. Like I said, you go in there for, whether it’s neck surgery or a lot of people are treated for cancer and these types of things, you come out with a permanent lifelong disease that really there is no cure. At the time, there was not a treatment option. Now I feel super hopeful with the treatment options that will be coming around.
Kerri Fitzgerald:
Yeah, that’s scary, as you mentioned, to go in and come out with this lifelong thing you have to manage now. What would you say is the Association’s mission, and what are some of the near-term goals that the organization is working toward?
Patty Keating:
Our mission is really to impact the lives of anybody that is affected by hypopara. That means patients, caregivers, doctors, researchers, investors, because we need people to continue to invest in research for this disease. It’s really to be able to impact them. We do that through education, through advocacy, through research, doing all kinds of different things to really be able to elevate the patient’s voice in this disease so that it’s not just the medical pieces of it. Again, if you are treated with conventional therapy, your numbers and your lab levels will be okay, but you still don’t feel good. That patient voice really needs to be heard. We’re making sure that whatever we do, we get out there to share not just our voice and what’s happened with us, but all of the patients all around in different venues.
We’ve been on Capitol Hill, we’ve been to the state level, we’ve been to the regional level, all these different places on a continuous basis. We’re getting ready to start up conference season. That means we will be attending all these conferences where there’s clinicians, researchers, investors everywhere and just shout it as loud and proud as we can about the patient journey so that people will continue to invest in research around hypopara and continue to invest in treatment options for us.
Kerri Fitzgerald:
I imagine that can be frustrating where you’re saying your levels look good, but you don’t feel good. I think most people want to wake up every day and feel the best that they possibly can, so I imagine that’s difficult for patients to deal with. You’ve talked a lot about how you want to help patients, give them a voice, improve outcomes, research. How do you hope the association can move the needle when it comes to clinicians and doctors?
Patty Keating:
If a clinician is in their practice for a long time, whether any kind, or a hairdresser is in the same practice for 30 years, you do sort of see the same things happen. This is a rare disease. There are 10,000 rare diseases out there. We certainly can’t expect every clinician to understand our rare disease. It’s about helping them to learn more and to be open to conversations about the patient’s daily lives, how conventional therapy is affecting their body, and how new therapies can treat the whole person because it’s a hormone. Calcium, we’re just treating that calcium piece. The parathyroid is a hormone, so we need to treat that piece of it. Based on our community’s experience for the most part, it has really helped with their overall quality of life. Really, it would be about that.
Kerri Fitzgerald:
You guys are doing a lot and have a lot of goals. What would you say is one of the most exciting things you’ve seen happen during your time at the Association?
Patty Keating:
I think us helping to get the treatment to market. We did an Externally-Led Patient-Focused Drug Development meeting (ELPFDD) with the FDA. The treatment that was on the table wasn’t approved. Then we had this meeting, I think it was like 6 months later, they then got the approval. We do feel that those 13 patients that sat there and gave their story, the people that participated online, the enormous support from the community really sharing their story of how hypopara impacts them made a huge difference in that approval and the awareness of hypopara. Clinicians are taught in school, and this is what they tell us. There’s a paragraph or 2 in the textbook that they learn about this. Then they may not see a patient for years and years, or ever, for that matter.
It’s important for them to understand not just those textbook symptoms, but how those symptoms impact somebody’s daily life. That’s what one of our goals was, to be able to get in front of the FDA to share that. They told us afterwards it really, really taught them a lot, including our medical experts. They don’t always, unfortunately, have the time to hear the whole story. Those 13 people, they did an amazing job. It was all different aspects of hypopara; some genetic, idiopathic, post-surgical, people that have been early diagnosed, late diagnosed. It was a powerful moment. That and then being able to get out there and talk to clinicians that it’s not about Tums. Tums has a lot of calcium, yeah, but it’s not about the Tums. It’s about treating the whole patient.
Connect with the HypoPARA Association:
https://www.hypopara.org/
https://www.youtube.com/channel/UC8fpei7liF73LFflvU6zZHw
https://www.instagram.com/hypoparaassoc/
https://www.linkedin.com/company/hypoparathyroidism-association/
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