AcroTales
AcroTales
Episode 3 - Trinity
In this episode of AcroTales we talk to Trinity from Phoenix, Arizona about the challenges of growing up with a pituitary condition at such a young age. We also discuss the important role that nurses have to play in the management and treatment of Acromegaly and how friends and family are such an important factor when coping with the condition.
Hello and welcome to AcroTales, a regular podcast that explores the fascinating world of Acromegaly. My name's Dan Jeffries, and I was diagnosed with Acromegaly in 2007. In each episode of AcroTales, I'll be talking to fellow acromegalics from around the world about their journey with this unique condition. We'll be talking about how they found out they had it, the treatment and diagnosis, the effects on friends and family, the impact on day-to-day life, and what advice they would give to someone recently diagnosed with acromegaly. For those that are thinking, acro what? Let me give you a bit of background. Acromegaly is a rare condition caused by a benign tumour growth in the pituitary gland. This little gland sits at the base of the brain and controls all of our hormones. Acromegaly disrupts the proper functioning of this gland and in most cases causes an excessive release of growth hormones, often causing the face to grow and change shape, as well as hands, feet, jaw, and limbs. It usually takes around six to eight years for a successful diagnosis, and the sooner it is discovered, the better. And with that, I would like to introduce Trinity, who comes from Phoenix, Arizona. And I first met Trinity at an Acromegaly event in New Orleans uh early in uh when was it? 2019. 2019. And um, as with every Acromegalic you meet, their story is always fascinating and unique and different. So, first of all, Trinity, welcome to the show. Thank you. And it's great to have you uh here. Thanks for having me. No, my my pleasure. So um tell us a bit how about your background. How did you first find out that you had acromegaly? What were the signs or or no signs sometimes?
SPEAKER_01:Actually, my story um I didn't know until I was diagnosed last year with acromegaly that my story actually started when I was about 10.
SPEAKER_00:Okay.
SPEAKER_01:So um I knew at the time that I had grown very, very quickly, and what we can remember from doctors in the 80s was that I had gone through an MRI and a bunch of different studies, and they said that my pituitary gland was overactive.
SPEAKER_02:Right.
SPEAKER_01:And at that time there was a lot of um new medications. My mom remembers me taking a medication for a while, but then my um height leveled out and I stopped growing. So I was six foot three, fully developed by the time I was 12.
SPEAKER_00:Wow, six foot three. Yes. Okay. And did you feel very different, you know, so being a 12-year-old and that tall?
SPEAKER_01:Oh, my whole life, absolutely. I think you know, people see someone who's with that stature, especially a woman with that stature, and you know, they always expected that I was older than I was and therefore expected me to act older. So at 12, I took I started taking medication and eventually like leveled out. I stopped growing. And then um, as I got older in my late 20s, I started having a lot of joint problems. Um, so actually had both of my knees replaced by the time I was 35, and my jaw needs to be replaced still. So then we started kind of doing more, you know, I would kept saying this can't just be arthritis, this can't just be uh uh fibromyalgia, which is what a lot of the doctors wanted to call it.
SPEAKER_02:Right.
SPEAKER_01:And um, it was actually my dermatologist. I uh broke out in some weird sores on my ears, and he just like, we're gonna figure this out. And he ran every test known to man, and my IGF was elevated.
SPEAKER_00:So it's amazing. So a dermatologist diagnosed you with a condition. I mean, you just you just wouldn't expect that at all, would you? So what was what was it like to finally be, you know, to give what you had a name? How important was that to you?
SPEAKER_01:Oh, amazing. So I'm a nurse, I'm a registered nurse. I've worked in the emergency departments for about 13 years. It was very hard as a nurse to hear, we don't know what's wrong with you. It was very hard as a nurse to not be able to diagnose myself.
SPEAKER_00:Yeah, absolutely.
SPEAKER_01:You know, so getting getting that word, it was like finally, finally, it was vindication.
SPEAKER_00:And had you heard of it before?
SPEAKER_01:You know, it's funny because you you there's probably a very small paragraph in one of my textbooks in nursing school about acromegaly. And that is it. That is, and and once I heard the the word again as an adult, I remembered, oh yeah, I remember there's like a paragraph in that book about it, but that was it.
SPEAKER_00:It's amazing, isn't it? I mean, because obviously there are so many rare conditions around that it's you can't expect to train every nurse and every doctor to know sort of every rare condition. But I I'm always amazed about uh uh the amount of people that don't even know about the pituitary gland and where that is. And so I'm guessing as a nurse you had more awareness of hormones, the peturatory gland, what it does. Um definitely. Okay. So you you've it was given a name, you found out what this condition was, and what was the next steps after that?
SPEAKER_01:Um so after that, we started um some more testing, more labs, lots and lots of labs. And then the MRI. And um, interestingly enough, my MRI, and I think it was probably oh, a week or two before the MRI, I had the worst headache I've ever had in my life, and I was in bed for two days. I had the MRI, and when they read it, they said, Well, if you had a tumor, it was very large and now it's gone. And it, you know, so there's an empty cellus syndrome, is what they call that. And there's a big space basically by your pituitary gland where something would have been but is no longer there. So they say that I had tumor apoplexy, which means the tumor burst on its own.
SPEAKER_00:Oh my gosh.
SPEAKER_01:I feel like I was growing it. I've probably been growing that tumor since I was 11.
SPEAKER_00:Right.
SPEAKER_01:You know.
SPEAKER_00:Okay, so so no surgery then, or no, no surgery. So it I mean, don't I mean correct me if I'm wrong. So it kind of healed itself, or or I know that's an odd way of looking at it, but sure.
SPEAKER_01:Do you have to have medication to manage any of the residual tumor or so I they're saying that they don't see residual tumor, however, my labs show different.
SPEAKER_00:Okay.
SPEAKER_01:So I do take um actually cobergoline, which is a tumor kind of busting agent. It ha it has lowered my IGF-1 levels. Um, but also with the the size of the tumor, it damaged the pituitary glands. So I've now got adrenal insufficiency, secondary adrenal insufficiency because of that. So my hormone levels are still all wonky.
SPEAKER_00:And what was it like uh, you know, for your friends and family when you were diagnosed with this? I mean, I'm guessing they were used to you, how can I say this, being unique from, you know, 12, 13 years old and being over six foot. But how did they respond uh, you know, to you telling them that you had this condition called acromegaly?
SPEAKER_01:Right. So I'm very, very lucky because my support system is very strong. And, you know, those people had been with me through this whole process, through all of the, you know, the knee surgeries and and the you know, the trying to find out my most of my support system is made up of nurses and doctors.
SPEAKER_00:Okay, well, yes, I guess you're you're very fortunate in that.
SPEAKER_01:Yes, yes. And so they, you know, they were very excited for me to finally get a diagnosis. And then of course everybody started doing research because that's what we do as you know the med in the medical field. So I think all of my friends and family are very well educated now on acromagaly.
SPEAKER_00:Okay, and do your uh this might sound like an odd question, but do your colleagues do they have a particular interest in you now that you have this rare condition or you know, an additional interest, let's say, um, to want to know more about you know your development?
SPEAKER_01:Oh, absolutely. Especially um, so the the dermatologist, um I actually worked with him. He was a assistant in the emergency room before we went into dermatology. So we were actually friends for a very long time. And so since he's the one that you know found the abnormalities with the lab work and and all of that, and in particular, he um he's very, very curious, and he's probably gonna write a paper because I have two rare conditions. So acromegly and also relapsing polychondritis, okay, which is extremely rare. And so he calls me a unicorn because he doesn't know anybody else like me.
SPEAKER_00:Okay. And what's what does that condition entail?
SPEAKER_01:So the RP, the relapsing polychondritis, um is basically it's like an autoimmune condition, and your body attacks all of the connective tissue. So the cartilage and the tendons, which is why my knees failed. Um, also, he thinks because of the issues with the connective tissue, some of my bone growth as an adult isn't as prominent because I have such crumbling joints. So, like the jaw, for example.
SPEAKER_02:Okay.
SPEAKER_01:Um, I definitely have had issues with my jaw. Um, and they think possibly growth, but because it's so damaged, you can't see that growth.
SPEAKER_00:Wow. Okay. Well, welcome to the two rare disease club, because uh I'm I'm with you there. I mean, I uh the jaw I think is a really interesting issue because um I think you mentioned that you were looking to have jaw surgery. I was lined up to have jaw surgery, but couldn't have it because of my uh complexities with my other condition. And I have to say I was really looking forward to jaw surgery because as as horrible as it sounds, that they're going to sort of break your jaw and reset it, that's what they sort of said to me anyway. Uh it was the promise of having a kind of returned normal and inverted, commas smile back. Is that something that you're uh I mean, that's a side effect of what you would have, but is is this cosmetic or is it more than that?
SPEAKER_01:So for me, um, it's definitely way more than cosmetic. Um so basically, my jaw is bone on bone, and there's parts of it where they say that it's just gone. Basically, the the bone is crumbled because there's no structure. And so it would be very similar to like a knee replacement where they would, you know, take part of the bone out and put an implant, um, surgical steel implant in, you know, to reform the jaw.
SPEAKER_00:Wow. Okay. And and uh are you looking forward to that? I mean, do you have a lot of pain? Is it something that you're you can't wait to have a sort of a better functioning jaw?
SPEAKER_01:So um there is definitely a lot of pain. There's times where I can't chew, where I can't eat. Um, it will lock in one position or another, and I can't like close it all the way or open it all the way. Um, unfortunately, though, with that particular surgery, there is one doctor that I've found in probably a 10-state radius of me that's here in Arizona that does it and he doesn't accept any insurance whatsoever, so it's all out of pocket. Oh god. All right, so of course. So it's about$75,000. If you know anybody who's uh got some extra pocket change.
SPEAKER_00:Okay, well, if anyone's listening to this and wants to help Trinity out, uh um, we'll leave a comment on the website and um we'll set up a just giving or something like that. I mean, it's really it's it's really difficult. And it, you know, um without wanting to go off track too much, it it uh it amazes me, and it really amazed me when I was in New Orleans the contrast between the UK uh health system and the US health system. You know, we we have the NHS and for all its faults it can be problematic, but if you need the treatment, you will get it. If you want the treatment a lot quicker and and and maybe nicer surroundings and better food, you pay private. But uh, you know, it uh the amount of people I see on different forums and communities from the states talking about the insurance issue, it's um I sort of feel very grateful that I'm not part of that system.
SPEAKER_02:Sure.
SPEAKER_00:Um, but you know, I guess I guess that's the way it is. And I I don't really want to get into the political side of it too much, but I I really hope it's something that you can you can get sorted soon.
SPEAKER_01:Well, I can't, you know, I can't complain too much because I have lost quite a bit of weight because of it. Um and I live in a very, very hot climate. So smoothies like all day long sometimes is just fine.
SPEAKER_00:And do you and do you think that has been a side effect of the acromegaly? Did this come afterwards? Do you uh put it down to that?
SPEAKER_01:I do. Um absolutely. Same thing with the knees. I just, you know, I I used to before I had the diagnosis, I would say, you know, it must have been because not only did I grow very tall, I grew very fast. So between nine and twelve, I topped out.
SPEAKER_02:Okay.
SPEAKER_01:So I always thought that put a lot of extra, you know, pressure and damage to the joints of my body because I grew so tall so fast.
SPEAKER_00:And so I guess acromegaly in a way has been debilitating to you because you perhaps can't do the things that you want to do, you know, sports maybe, or if you were interested in running or or you know, physical activities, you're sort of prohibited from doing that?
SPEAKER_01:Very much so, very much so. I actually played volleyball in high school because of my height, obviously. And um, you know, I used to when it up into my 20s, and then when my knees started uh giving me all the problems, then it was almost like a domino effect of every joint started to make itself known. So not a lot of uh a lot of problems doing a lot of physical stuff, yes.
SPEAKER_00:So as I mentioned at the start, um I met you in uh an Acromegaly uh conference back in New Orleans in 2019. Um was that the first time you'd been in a room with a multitude of acromegalics? Yes, first time ever. And how was that for you as an experience?
SPEAKER_01:Um absolutely amazing. Um, it's funny because there's little things you don't think about that could be related to this. And somebody will say, Well, what about this? And I'm like, oh my gosh, yes, I had you know that same thing. Or and it just feels so good to have that support and to know that you're not alone in this disease. I mean, as rare it is it as it is, it's nice to have that community.
SPEAKER_00:Yeah, and you know, I um it's not so rare uh when everyone's together. And and that, and that's the great thing, and it's and it's incredibly supportive. Have you on your journey as well? And I think, I mean, by doing this, you you are contributing back. Um, you know, do you find yourself supporting others and being able to give back once you gain more knowledge about the condition and you know the impact that it's had?
SPEAKER_01:Um, I've tried, definitely, absolutely tried very, very hard to do so. Um, also, you know, again, being in the medical field, I have a lot of context. And so I've able to do a couple um lectures at a couple different nursing schools.
SPEAKER_02:Wow.
SPEAKER_01:Um, about yeah, which has been very nice because again, like I said, it's still that very small paragraph in a book for those nurses. So um that's been that's been really, really um a big enjoyment of it. I feel like that's paying it forward.
SPEAKER_00:Whenever I go to um conferences, particularly in the UK, there is a real focus on the role of nurses. Uh, because quite often uh doctors and specialists may look at the facts and figures, but the nurses will know much more about the general symptoms, you know, the day-to-day management, etc. What's the kind of information that you get across to nurses then when you're giving these tools? What are the things that you sort of highlight to them?
SPEAKER_01:So I think uh, you know, some of the main things is is is to really push towards, you know, having people join that support group and know that they're not alone. The other thing that nurses do that doctors don't do, not always, but for the most part, is is they look at, they don't look at just the monitor or the lab work, they look at the whole person as a as an entire being. And so, you know, finding other ways to do, you know, self-care. Self-care is always very important. And and, you know, just encouraging those types of things and and knowing that so many people with this particular disease do have a lot of issues with pain and and you know, finding ways to distract them from that and and to find activities that they can do and that are enjoyable.
SPEAKER_00:Okay. Yeah, I mean, I I think it's fantastic that you're doing that. And uh that's the one thing I've really noticed with a lot of people with acromegaly, is that you know, it's obviously going to have an impact on your life, and it's you're gonna be, you know, I guess pissed off that you've dealt this hand. But we we all seem to be able to um make the most of it and turn it around to a positive. And I think anyone that can kind of give back to the community, whether it's to empower nurses and doctors or uh, you know, to be someone on a support line or even just answer messages on a discussion board, it's very empowering, isn't it? So with that in mind, what's your if you had some messages for people recently diagnosed with acromegaly, uh what would be your tips that you would give them?
SPEAKER_01:So absolutely, that would be first and foremost. Get online, meet the community. There's so many resources. Um and and it's worldwide. It's so, I mean, I have met people, I've got Dan here in England, I've got a really close friend that I met through Acromegaly and uh the Netherlands. It's amazing how much just social media allows us to connect to each other like never before. That's like I think the main number one thing. Educate yourself, educate yourself, and then educate your family and find your support group first and foremost.
SPEAKER_00:By that you mean find a support group locally, uh, or do you mean find the support group that works best for you?
SPEAKER_01:Well, of course, I I feel like it's find the support group that works best for you. Um, but I also feel like it's very important to connect with acro, um sorry, other acromegaliacs. So, you know, searching those types of groups that are very specific to Acromagaly, I think, is very important.
SPEAKER_00:Okay. Yeah, that's fantastic. I mean, I think this you're right, the social media explosion has, I call it an explosion. I sound like that's happened in the last year. I mean, you know, Facebook's been around forever now, and and it it is a fantastic tool for bringing people together. What's um do you think um the pharmaceutical companies, for example, could be doing more to support, or would you go to them for guidance, uh, say over uh or look for resources they may share on websites over, say, social media? Would you would your first point of call always be the people going through it?
SPEAKER_01:Or well, again, for me, because I I think I'm such a special situation being that I'm a nurse, it's always going to be my first, I'm always gonna research and research and research. So I did, you know, when it when I first was diagnosed and started that process online, it's hard online because there's so much online that's just not true and that's not current. So I was very lucky. Um I actually worked for the federal government here, and um NIH is a national federal organization that does a ton of research on uh different um diseases. And so I was able to go to the NIH library and and find things. So I mean, I'm not I'm not certainly not anti looking at the pharmaceuticals. I just feel like there's there's better ways to get more information that's more current. And yeah, I and with that being said, then yes, I do believe that they could do more. I don't believe that it's on the forefront enough.
SPEAKER_00:Okay. It's interesting uh uh the idea of it being current, because I think um you're right. You you tap into somebody that saw their doctor yesterday or their specialist yesterday, and they're and they can answer a question, go, yeah, I've I actually asked my specialist about that, you know, the other day. Here's what they said. You know, that information and getting that information very quickly is is hugely useful. I think the the slight downside is that there's no not necessarily always um how can I say um it's not always authorized, you know. You have to sometimes take these things as with a pinch of salt. Um and and that's that's the challenge. But you know, that's social media full stop. It's about wading through a ton of stuff uh to find the bits that really work.
SPEAKER_01:I agree.
SPEAKER_00:Okay. Uh well, look, I think they're really fantastic uh pieces of advice. And for anybody who's listening, uh that's you know recently been diagnosed with acromegaly, I think what you'll find with all of the interviews and stories that we tell is that you know the journey is a scary one, or can be a frightening one at times, but actually the vast majority of people come out the other end. Uh no, I'm not gonna say reborn. That's just like that's not the right way of putting it. But maybe with a new attitude on life uh and uh you know, new perspective, new priorities, and things like that. Would you say that's something that's happened to you? Would you say sort of emotionally or sort of characteristically it's evolved you to some extent?
SPEAKER_01:Um absolutely. So I um had to quit working because of it. I actually just uh finished my master's degree in nursing um in 2017, so two years before my diagnosis. Um and now I'm not able to work. Uh there is a thing called aquafog that causes your brain to not work properly, and I certainly would not want to be in an emergency situation with a patient and miss something or forget something. You know, that people's lives are in my hands every day when I work as a nurse. Um, and that was really hard. It was it it was a big piece of me, of my personality that I but again, like you said, you come out on that other side and you you repurpose yourself. And you know, I I think that because I have my master's degree in nursing, I'm able to talk to the medical field with the with better knowledge and with the right language. And so absolutely it's it's it's flipped for me completely. Like I'm just finding out who I am now, who who the new me is.
SPEAKER_00:Yeah, it's it's a long old journey. I mean, you know, it took me a good 10 years, I think, from surgery to sort of finally fully accept uh you know how it had affected my appearance, for example, uh, which for me was like a really difficult thing. Um so yeah, I think obviously everyone has their own personal journeys. And that and that is why I th I wanted to set up this AcroTales podcast, because I think listening to the patient journeys can be for those that are recently diagnosed some of the most useful information that you'll get.
SPEAKER_01:Absolutely.
SPEAKER_00:And on that note, Trinity, I'm gonna say thank you very much for participating. Uh your story has been absolutely fascinating, and I really think it will help those that have listened. So I'm very, very grateful to you joining us.
SPEAKER_01:Well, thank you so much for having me, Dan. I really do appreciate it. I appreciate what you're doing.
SPEAKER_00:Oh, well, thank you very much. And if you found Trinity's story interesting and 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 via iTunes, Spotify, and all the other usual outlets. So this is me, Dan Jeffreys, signing off. Thank you once again to Trinity, and we'll see you at the next Acrotales.