AcroTales
AcroTales
Episode 24 - Cas
In Episode 24 of AcroTales we meet Cas from Nevada in the USA.
Cas's story really demonstrates the challenges faced when undergoing the 'diagnostic odyssey' in a search for answers. After experiencing a range of symptoms, Cas was finally diagnosed in 2019 - just before the COVID pandemic swept the globe. Yet Cas's resilience, positivity and humble nature means she has not let this condition define her.
Hello and welcome to AcroTales, a podcast that explores the fascinating world of Acromegaly. My name's Dan Jeffries, and I was diagnosed with Acromegaly in 2007. And in each episode of AcroTales, I'll be talking to fellow Acromegalics from around the world about their journey with this unique condition. It's episode 24, and I am really pleased to welcome Kaz from Nevada in the USA. Kaz is 40 and was diagnosed in 2019. Kaz, welcome to AcroTales.
SPEAKER_00:Hi, thanks for having me.
SPEAKER_01:So 2019, that's a few years ago. What's that? Six years ago. So it I guess it's still quite fresh and recent. But maybe uh if you could tell us um how your life was before 2019 and what happened leading up to you getting that diagnosis.
SPEAKER_00:It got pretty miserable. Um at one point I was falling asleep mid-sentence.
SPEAKER_02:Really?
SPEAKER_00:Because I was just so exhausted. Um, we were actually contemplating having me tested for narcolepsy.
SPEAKER_01:Okay. Okay. So that was obviously a sign. Um you didn't associate that with Acromakaly at the time, I'm assuming.
SPEAKER_00:No. No, um, it was uh at least a five-year journey to get diagnosed. Okay. And even with that, it was just it wasn't a I went in and they said, Oh, okay, well, let's test you. It was a random finding.
SPEAKER_01:Um so often random. It's really strange. This happens so often.
SPEAKER_00:Yeah, um, I was noticing that I was gaining weight and I was having low energy problems. Um they'd said that I had hypothyroidism, and that was why I was tired and gaining weight. So I was on a pill every morning for that. Um one doctor even said that I was tired because I had kids. She diagnosed me with kids.
SPEAKER_01:Right. That's I was diagnosed with kids. Yeah, I I think every parent in the world is diagnosed with kids, so that's not very helpful, is it?
SPEAKER_00:Well, on and off, I've been raising kids since I was six.
SPEAKER_01:Okay.
SPEAKER_00:So I knew tired, and that was not it. Um after the PCOS diagnosis, um, they put me on metformin. So now I'm on two different pills, but I'm still gaining weight. They put me on a 20 uh 20 carbs per day, or 50 50 grams of carbs per day diet, which is nothing. That's nothing.
SPEAKER_01:That is minimal.
SPEAKER_00:Um, I did start losing weight, but like I wasn't eating, so um, as soon as I decided to stop that crash diet, the gate the weight just came right back on. It was 60 pounds in a year and a half.
SPEAKER_01:Wow, okay.
SPEAKER_00:And that was still trying to watch what I was eating and exercising. Um when I went to the next doctor, I was like, I feel like I'm crazy. I'm doing all these things. Everyone keeps telling me I'm fine, but I'm clearly not okay. And that time I walked out of the doctor's office with the diagnosis of fall apart itis. He said those words to me. Are you serious? Yes. You have fall apart itis. I don't know what's going on with you. And that was it. There were no referrals.
SPEAKER_01:No referral, not even what? That's no referrals.
SPEAKER_00:Yeah. I it was it was a military doctor, so I'll leave that at that. But it was, yeah.
SPEAKER_01:Um so you must have felt very lost and confused and oh yeah. Like, what the hell do I do?
SPEAKER_00:When things got worse, I ignored it. I'd already brought it up. Nobody cared. There were no extra testing. There was no, it was just you, your your body's sucks. Have a great day.
SPEAKER_01:Wow, that's horrendous. Okay.
SPEAKER_00:Um I was having um fluctuations in in my this is this might be a lot, in my bra size on a daily basis.
unknown:Okay.
SPEAKER_00:And it was one to two cup sizes, not just it didn't fit that one.
SPEAKER_02:Wow.
SPEAKER_00:Um, but I was gaining weight. So I was like, well, maybe that's just weight gain. Yeah. Well, when my ring stopped fitting, I was gaining weight. When my shoes stopped fitting, well, you can gain weight in your feet, right?
SPEAKER_02:Yeah, yeah.
SPEAKER_00:Um I'm still falling asleep mid-sentence. I can't, I I ended up having to be a stay-at-home mom because I couldn't work. Um I finally decided to go back to school in November of 2019. And I was like, I can't, I can't go to school and have the migraines the way I'm having them. So I called the doctor and I was like, I need to see neurology. We need to change my migraine meds. Because I had had migraines since I was six.
unknown:Wow.
SPEAKER_00:So I knew the I knew the routine.
SPEAKER_01:And you need a department, I suppose.
SPEAKER_00:Yeah.
SPEAKER_01:That helps.
SPEAKER_00:So I was like, okay, well, we just need to change the medication. And the VA had decided that their policy was in order to see neurology, you had to have a CT scan.
SPEAKER_01:Okay.
SPEAKER_00:And that is how we found the tumor.
SPEAKER_01:Okay. So you got there eventually.
SPEAKER_00:Yes. I started school on a Tuesday in December 2019, and Friday I got the diagnosis.
SPEAKER_01:And was it a shock? I mean, I get that's a really stupid question. Of course it's a shock, but was it a relief? That's a better question.
SPEAKER_00:Um, not the way it was, not the way the information was given to me.
SPEAKER_01:Okay.
SPEAKER_00:Um, I actually had a nurse diagnose me over the phone, which is illegal. Wow. Um, she called me. I was in my daughter's third grade classroom volunteering, and she just told me right there over the phone, didn't ask me if it was even a good time. Just you have a pituitary adenomer, we're ordering an MRI, get that scheduled immediately.
SPEAKER_01:That's unbelievable. I really, I really hope that's a rarity that that I hope so too. I mean, I I totally feel for you, and um, you know, that's horrendous. You've had to go through it, but I really hope that's not common practice. Wow. Okay. So that must have flawed you then. And I mean, did you even know what she meant?
SPEAKER_00:So I had been in, I had some taken some medical classes. Um, so I knew where my pituitary was, and I knew what the uh suffix oma meant.
SPEAKER_01:Okay.
SPEAKER_00:And so immediately my brain says, I have a brain tumor. There's a tumor in my head.
SPEAKER_01:Yes.
SPEAKER_00:And that was all the information I was given. And I'm volunteering in my daughter's classroom, so I couldn't just stop and Google it. And then my first recourse when I did have time was to Google it, and that's always the worst thing to do when you get a diagnosis you don't understand.
SPEAKER_01:No, but but did the explanation and the symptoms, did you read them and go, yeah, okay. That sounds that sounds familiar.
SPEAKER_00:I was really freaked out and confused until I saw the endocrinologist.
SPEAKER_01:Okay, okay.
SPEAKER_00:Um, I had the most amazing endocrinologist, even with the VA. Yay.
SPEAKER_01:What's the VA? Sorry.
SPEAKER_00:The veterans' affairs?
SPEAKER_01:Uh okay, right, okay.
SPEAKER_00:Um, so the military disabil disability medical care.
SPEAKER_01:Right, I got you. Okay.
SPEAKER_00:Um, but she sat me and my husband down, and she was like, tell me the differences. And so I went through all of it, and she goes, Okay, now pull up your Facebook profiles. And she went, she told me, go all the way back to the youngest picture you have on there. And she said, Find one where you're smiling. And the first one I found, I was smiling, and I didn't have a single space between any of my teeth. And she goes, Do you see the difference? And that was when it all hit. And all of these things that I've been experiencing, it all made sense and it was just ignored or treated as something else.
SPEAKER_01:Again, this is the trouble with rare conditions. They they don't expect to see it. So as somebody said in another podcast, it's rare, so it can't be that, you know, which is always a ridiculous argument.
SPEAKER_00:I have gotten to the point where if a doctor tells me it's rare, I stop them. That word doesn't mean what you think it means. Rare means it does happen.
SPEAKER_01:Yes.
SPEAKER_00:Or it'd be non-existent.
SPEAKER_01:Yes, exactly.
SPEAKER_00:So don't tell me it's rare, like that's a good thing. I generally fall into that category.
SPEAKER_01:Okay. So did so you obviously you were in better hands. Having a good endocrinologist is really essential, and a good nursing team around you as well. Did they how long between diagnosis and surgery? Assuming you went down surgery.
SPEAKER_00:I did. Um, my tumor was the size of a marble, it was 11 by 10.
SPEAKER_01:Okay.
SPEAKER_00:Um they sent me immediately to the neurosurgeon. The problem that I ran into was I was diagnosed in 2019, and in January of 2020 is when the shutdown happened.
SPEAKER_02:God, of course.
SPEAKER_00:My original surgery was scheduled in February. I actually had the surgery in July of 2020.
SPEAKER_01:Okay. So not a pleasant wait, I guess, because you get the buildup for it, but you know, you you can't do much about a pandemic, can you?
SPEAKER_00:And they cancelled my surgery three days prior. So there was there was not a lot of yeah.
SPEAKER_01:You have to, I think it's frustrating, but you have to just be understanding.
SPEAKER_00:I I I I always wasn't actively dying.
SPEAKER_01:Exactly. That that is my point. And you know, I have had uh seen quite a few people in the Facebook groups that understandably complain that they may have been bumped or pushed back because another priority came in. And I always think just be glad you're not that priority.
SPEAKER_00:You're not that priority, yep, exactly.
SPEAKER_01:So, you know, we can live with this, and a few more months will not make a huge amount of difference.
SPEAKER_00:Not when you've waited years to be diagnosed.
SPEAKER_01:Precisely, precisely. Okay, so surgery happened and it went well.
SPEAKER_00:It was successful.
SPEAKER_01:There's a difference.
SPEAKER_00:Um, because I was on metformin for the PCOS, the nursing staff tried giving me insulin right out of surgery in the ICU.
SPEAKER_01:Right.
SPEAKER_00:Um, but I have hypoglycemia.
SPEAKER_01:Okay.
SPEAKER_00:So the entire time I was in the hospital, they had to check my blood sugar and and immediately give me orange juice because it was always so low.
SPEAKER_01:Right.
SPEAKER_00:So she could have killed me.
SPEAKER_01:Right.
unknown:God.
SPEAKER_00:Um, and this was not at the VA hospital, this was a civilian hospital.
SPEAKER_01:Okay, okay.
SPEAKER_00:Um, I ended up with diabetes insipidus.
SPEAKER_01:Yep.
SPEAKER_00:Um, so I was in the hospital for six days.
SPEAKER_01:Mm-hmm. Okay.
SPEAKER_00:Um, I went home, I want to say on Friday. And I I think it was the change in elevation because my surgery was about two hours away from my house. Um, I ended up with a CSF leak.
SPEAKER_01:Yep. Okay. When I went to leaking, was it leaking when you left? No. So it started leaking when you got home.
SPEAKER_00:Mm-hmm.
SPEAKER_01:Okay.
SPEAKER_00:There's about a 500-foot elevation difference between the hospital and the house.
SPEAKER_01:The pressure, obviously, the change in pressure caused. I think so to happen. Okay.
SPEAKER_00:Um, I went to the ER and they said, oh no, no, no. You have to be where your doctor is. We're not, we're not dealing with this. What? So they ambulanced me the almost two hours to the hospital.
SPEAKER_01:Okay.
SPEAKER_00:And then the on-call doctor took my sterile CSF sample that I was collecting and poured it into an EDTA tube.
SPEAKER_01:I don't what's an EDTA tube, sorry?
SPEAKER_00:So EDTA tube is an anticoagulant tube for blood collection.
SPEAKER_01:Right.
SPEAKER_00:And you can no longer test for CSF if you you had just the worst luck.
SPEAKER_01:Or the the or incompetence, I'm not sure which.
SPEAKER_00:I'm telling you, rare means nothing to me.
SPEAKER_01:No. Wow. Okay.
SPEAKER_00:So the lab wasn't even able to confirm that it was CSF.
SPEAKER_01:Right.
SPEAKER_00:And because my doctor wasn't on call, I spent the weekend in the hospital anyways. He came in and said, well, if it was CSF, it resolved, so you can go home now.
SPEAKER_01:But you just okay. And that was it.
SPEAKER_00:Yeah.
SPEAKER_01:And so you went home and I went home and I recovered. Oh, thank God for that. It didn't start again.
SPEAKER_00:No. That was it.
SPEAKER_01:I thought you were gonna tell me you caught meningitis or something like that. Oh my gosh. Because I went through that. I I Oh I'm so sorry. No, that's okay. I had CSF leak and when I got home, but I they I left the hospital with the leak. Oh. Which they really shouldn't have done. And I don't think they would do that anymore. But yeah, it was it was it was pretty horrible. Anyway, this isn't about me. So you you got home and it healed.
SPEAKER_00:It did.
SPEAKER_01:And did life start to get better after that?
SPEAKER_00:Um, well, I lucked out and COVID made everyone go to school online, so I was able to continue schooling just like everyone else.
SPEAKER_01:Okay, okay.
SPEAKER_00:Um, I graduated in August of 2021. When I started working, I started noticing that things weren't adding up again.
SPEAKER_01:Right.
SPEAKER_00:Um, we started checking my levels every three months. And um, I went I graduated as a medical laboratory technician, so lab values is literally my job.
SPEAKER_01:Okay, right. I understand why you know so much now. Okay.
SPEAKER_00:So um I started watching my IGF one trend upward.
SPEAKER_01:Right.
SPEAKER_00:And they kept telling me, well, it's in normal levels. And I was like, but I have I'm symptomatic. And it's trending up, it's not staying the same, it's not variating, it's it's trending up. And so every three months I would just message my doctor and say, Okay, my symptoms are getting worse, let's check again. And then I finally breached the threshold of high. Okay, and they were like, okay, well, let's put you on medication. So they put me on cabergaline, right? Which doesn't directly affect IGF 1. When my prolactin went down, the IGF went down.
SPEAKER_01:Okay.
SPEAKER_00:Um throughout this whole time they kept telling me that my imaging was stable. And then in 2022, I started losing peripheral vision.
SPEAKER_01:Okay.
SPEAKER_00:I went to everyone because my imaging said the tumor wasn't there. There was no tumor.
SPEAKER_01:Right.
SPEAKER_00:So the tumor isn't causing the peripheral vision loss. Right. And the eye doctor I went to says, I can't find anything wrong. But if you're losing your vision, limb life or eyesight is ER.
SPEAKER_01:Yes.
SPEAKER_00:So he sent me to the emergency room, and the emergency room doctor says, the ERs can only order CT scans, and that's not going to show us what we need to see.
SPEAKER_01:Right.
SPEAKER_00:So I'm going to admit you because inpatient can have MRIs.
SPEAKER_02:Okay.
SPEAKER_00:So I'm at the civilian hospital. I get my MRI, and they say, Oh, yeah, there's definitely post-surgical changes. I can't guarantee it's a tumor. But there's something there that wasn't there in our last imaging. So I called my endocrinologist the next day, and she says, Well, I got the images, but it looks like it's just scar tissue.
SPEAKER_01:Right.
SPEAKER_00:So you're telling me scar tissue showed up two years later? Because it wasn't in previous imaging. And so she was like, Okay, well, I'll send you to see the neurosurgeon. And he said, I can't guarantee it's tumor or scar tissue, because it's imaging. Generally, with what I'm seeing, I would say, let's go in and get it. But you got DI last time, and you were lucky that it went away.
SPEAKER_01:Right.
SPEAKER_00:If we do it again, it may not.
SPEAKER_01:Okay.
SPEAKER_00:So at this point, we're just waiting for it to be big enough again to go back in. After seeing the neurosurgeon, the endocrinologist finally admitted that my IGF-1 was going up again. So that meant that there was tumor cells.
SPEAKER_01:Right. Okay.
SPEAKER_00:And I said, well, if there's tumor cells, then that means tumor. The tumor's there. It's just not visible on imaging. We don't have to draw these little technical lines.
SPEAKER_01:No, I know it's there. I can yeah, I'm getting the the the uh you know the side effects from it.
SPEAKER_00:Yeah. And now so with the with the VA, when you see the specialist, sometimes when you see your primary care, they will send in a fellow. So someone learning that specialty.
unknown:Okay.
SPEAKER_00:And then you have an appointment with them, and then they go get the resident, and then you have the appointment again with the resident. And with the fellows, uh specifically this one, um I can tell she doesn't understand acromagaly because the thing she's saying doesn't make sense.
SPEAKER_01:Okay.
SPEAKER_00:I told her I was symptomatic, I'm gaining weight, I'm eating too much, but there's days, generally after my medication, where I don't eat anything. I have zero appetite, and my IGF 1 is trending up again. And then she says, Well, your IGF 1 isn't being treated by the kabergaline, because that's not what it's for. But it's within normal range, so it's probably a problem with your thyroid.
SPEAKER_01:Right.
SPEAKER_00:And I said, Well, if I'm not hungry, that's hyperthyroid.
SPEAKER_01:Yeah.
SPEAKER_00:But if I'm eating too much, that's hypothyroid. And if you're telling me I have both, that means I have a functioning thyroid. Because it either is working too much or not enough. And if it's working in the middle, it's normal.
SPEAKER_01:Yeah.
SPEAKER_00:And I'm not going on thyroid medication again. When I didn't need it the first time, I had a tumor in my head. We know the tumor cells are there, so let's not pretend it's anything else. So I'm actively in that battle at the moment. I see the message.
SPEAKER_01:Right. Wow. What journey.
SPEAKER_00:Uh uh. And I have to go to Colorado to see my endocrinologist because that's where I met them. And my team is one of the best in the country.
SPEAKER_01:Okay. How far is that from where you are?
SPEAKER_00:It is a two-hour flight.
SPEAKER_01:Okay. Wow. So you gotta pay, you gotta Yeah.
SPEAKER_00:I'm not the only one that travels for a good team, though, so I don't feel that.
SPEAKER_01:Uh I I I can totally understand that. And when you've got people that you trust and know, and they know you and they know your story, you don't want to just relocate to someone else because it's a bit more convenient.
SPEAKER_00:When we were discussing moving to Nevada, I started the research because I know. I know it's hard to find a good team that specializes in a rare condition. I called almost every endocrinologist in town. Not one of them had a necromagaly patient.
SPEAKER_01:Okay.
SPEAKER_00:So I was like, I'm just I just have to fly.
SPEAKER_01:Can I ask how this has um uh uh impacted on your family?
SPEAKER_00:Well, I mean, I'm gone at the moment for at least three days every five weeks, so that's a huge impact. Um because I think that I had the tumor for much longer than we realize, um, I think that a lot of my other medical conditions were caused by that. But that actually softened the blow for my family because they were already used to me having so many medical problems.
SPEAKER_01:Okay. So when it comes out of the blue, suddenly, you know, you've led a healthy life for 30 years, and then bang, you're diagnosed with the purity tumor. That's quite a shock. So you're saying, yes, because you've lived with some rare conditions, it wasn't having to go to hospital wasn't such a unique thing, it wasn't so scary. Going for scans wasn't so scary. And you obviously live in the medical world as well, which helps.
SPEAKER_00:My brain tumor was actually surgery number 13. Wow. And I've had seven since then.
SPEAKER_01:So my god.
SPEAKER_00:Uh the the surgery life is is not something abnormal in my family.
SPEAKER_01:Okay, okay. I don't want to say that helps, but obviously it it it's it's a adds a dimension.
SPEAKER_00:It makes the one issue a little bit less intense.
SPEAKER_01:Yeah. I mean, Kaz, I'm I'm really, you know, regardless of whether you've had 13, 13. I'm at 20 now. 20? Bloody hell. I thought I had a few. But if you're at 20 surgeries, you know, it seems to me that your optimism and your outlook uh is is really positive. And I I sense that you know you've been dealt a difficult hand, but you're just trying to play those cards as best as you can. And I assume you enjoy life and aim to enjoy life as much as possible?
SPEAKER_00:I I try to do as much as I can. Um the the tumor and the subsequent medical issues have given me an outlook of I don't know when it will be the last time I can do this. So I'm gonna do what I can while I have the ability.
SPEAKER_01:Okay. Okay. And how how your vision is that is that is that improved, or has you still got some loss of peripheral vision?
SPEAKER_00:Um, I still have some loss, but it has not gotten worse.
SPEAKER_01:Okay. That's that's a good thing. Okay, okay. And if someone's listening back to this podcast and they've just been diagnosed, what's your advice to them?
SPEAKER_00:We have a great community. Reach out for support. I can't say it's gonna get better, but you can emotionally feel better about it. It it doesn't have to be that diagnosis.
SPEAKER_01:No. No, it's a shock. And uh uh and you know, it has an impact on your life. I mean, I I sense that early diagnosis, even with you know the complex journey that you had to get on to get there, uh, diagnosis seems to be a lot earlier than it maybe was 10, 15, 20 years ago, which is which is a great thing.
SPEAKER_00:And uh I've said this before, I think social media definitely has played a part in that to raise awareness and and um uh for people to reach out if they think that they might be going through it, which is which is I am also working on a tour through different medical campuses to give speeches while they're in their endocrinology classes. Um because of my case, my husband has been able to get four different patients diagnosed with acromagly.
SPEAKER_01:Wow.
SPEAKER_00:Because he knew the signs.
SPEAKER_01:Wow, that's that's phenomenal. And I have to say, Kaz, you're a really good speaker. Thank you. You're very confident, you're very eloquent, uh, and you, you know, you're very considered in in what you say. And um I think that probably uh comes from having a bit of a medical background because obviously you think maybe logically about these things, uh, and maybe try not to let emotion interfere too much. But obviously, but obviously that's gonna happen. But I think you know, I I I can imagine you giving these talks will be really inspirational and and and helpful. So really well done. And and I'm assuming I'm assuming you're on things like the Facebook groups and the Acromegaly community. And have you been to any get-togethers or meetups or regional events? Have you met other people with Acromegaly? Okay.
SPEAKER_00:Yes. Um, I went to the Denver one. I don't remember what year.
unknown:Okay.
SPEAKER_00:All the years just kind of blend together in my life. Um, I went to the one in Phoenix.
SPEAKER_01:Did I go to that one? Did I go to the Phoenix one?
SPEAKER_00:Was I there? Um, I want to say you were, but I don't know that we met because I had another different medical issue going on then that I was kind of staying in the background to deal with.
SPEAKER_01:I'm pretty sure I was I should really know that. I am 99. Yeah, I definitely was in Phoenix.
SPEAKER_00:Um the Barrow Institute.
SPEAKER_01:Yes. I was I was what God, my memory. I was 100% there. Oh, it's a shame we didn't get to meet.
SPEAKER_00:I was blonde then too, so.
SPEAKER_01:Oh, okay. Maybe we did, and then I don't remember. But I'm hoping, you know, if there's going to be another international one at some point soon, which I'm sure there will be. Um it would be great to to to to go back and and meet you and and new people as well. And I and I just think getting together and and sharing stories is so important. We've got a UK uh get together in September. And uh it's the first one we've been able to do for three, four years just because of logistics. Um and we were running these during COVID as well, which you know, or trying to, which which didn't help. So yeah, I think the power of getting together and sharing and telling your story, and that's exactly what you've done today, is just so Powerful.
SPEAKER_00:I'm also publishing a calendar in which I have gotten together a group of brain tumor patients. Um and we did a pin-up cocktail party photo shoot for May.
SPEAKER_01:Oh, amazing.
SPEAKER_00:For Go Gray and May.
SPEAKER_01:Oh, that's fantastic. Look, you've completely embraced what life has dealt you, and you're just trying to do the best of it, and and and I love it. And um, Kaz, it's been absolutely fascinating talking to you and um really honestly inspirational um listening to you tell your story in in such an eloquent way.
SPEAKER_00:Well, thank you. I've enjoyed being able to help other people. So if this helps anyone, I would do it a million times over.
SPEAKER_01:I know I I can truly sense that. And uh I have I have no doubt that this is gonna help a lot of people. So, Kaz, once again, thank you so much. Uh, if you found Kaz's story interesting, and my god, how could you not? And you want to hear other AcroTales, head over to Acrotales.com where you can find the ever-expanding library of interviews. And of course, you can subscribe to the podcast to receive the latest updates. You can do that on iTunes, Spotify, or wherever you get your podcast from. Once again, Kaz, thank you so much. Thank you for listening, and we'll see you next time for another AcroTale.