Episode 5 - Jennie

In Episode 5 of AcroTales we talk to Jennie from Wellington in New Zealand. Her open and honest account of being diagnosed with acromegaly explores the treatment, surgery, complications faced and how it's affected her life - but not her humour.

Transcript

SPEAKER_02 0:11

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. It's episode five, and I am really pleased to introduce Jenny from Wellington in New Zealand. Jenny has just turned 54, which she's asked me to stress quite urgently. And we're really, really pleased to have Jenny on the show. So, Jenny, thank you very much for joining us.

SPEAKER_00 0:49

Thanks, Dan.

SPEAKER_02 0:51

I think it's um before we start, I think it's important to stress to those listening what an absolute nightmare we've had trying to get this connection working. Because not only is there 13 hours time difference between us, and you're 13 hours uh ahead of me. Is that right? Yes. Uh we've had big problems with technology and microphones and headsets, and but after lots of persistence on both our sides, we are finally there. So I'm I'm super pleased that this uh interview is finally happening. Um so Jenny, we met we met at the New Orleans Acromegaly conference uh back in 2019, and we have sat next to each other, funnily enough, for a period of it. Um perhaps you'd be good enough to share with those listening your story with Acromegaly, how you found out about it, the early years, and so on.

SPEAKER_00 1:47

Okay, so I was diagnosed in the end of 2017. Um but clearly, like most of us, a really long journey to get to to get to that diagnosis, and it was a sheer miracle that I was diagnosed when I was. Um, I suppose in retrospect, um the diagnosis is whilst having a diagnosis is um slightly troubling, it's also how do I put it? It's a sense of relief almost because I had struggled for so many years with so many different trips to the doctor, um all with different symptoms, but now we know, all linked.

SPEAKER_02 2:37

And um So nobody nobody nobody put a name to what it was and and so that journey of discovery is a really difficult one, isn't it?

SPEAKER_00 2:46

It's so hard because honestly, if you put if you put um carpal tunnel, if you put joint pain, if you put um um God, what else do we have? God, I can't even think of this.

SPEAKER_02 3:04

Did did you get any dental conditions or visual issues or any problems like that?

SPEAKER_00 3:08

I I did, but the dental issues for me weren't that evident in the beginning. Um I'm I'm quite I'm a real exercise freak. Um Well, I'm not a freak, but I love exercise. Um may dispute that. But anyway, I just um there there was so many things, Dan. Honestly, there there was just amalgamation of amalgamation of so many things.

SPEAKER_02 3:42

Going back Sorry, well I was gonna say, when did you first notice you know something wasn't right? When did you looking back at it, I know you were diagnosed in 2017, but how long do you think this had been going on for?

SPEAKER_00 3:56

I reckon eight to ten years. Because what was happening is that I was living in I was living in Fiji well, I was living in the Cook Islands, then I was living in Fiji for a period of time. And for all those years actually, leading up to my diagnosis, I only returned from Fiji in the beginning of 17. I was just really unwell. But going right back, um sorry, what were you asking me again?

SPEAKER_02 4:22

Uh so I was just asking you, what were the symptoms that you noticed from the from the very beginning? Uh, you know, when you look back at it, what were the signs that something wasn't right?

SPEAKER_00 4:33

I had I had this terrible one thing that was really awful that I was very aware of is I had this real sweating in my hands and my feet.

SPEAKER_02 4:43

Okay.

SPEAKER_00 4:44

Um was only in my hands and my feet.

SPEAKER_02 4:49

Okay. And had they grown? Had you noticed a change in size?

SPEAKER_00 4:53

Yes. To the point where I went into um a shop once in Fiji and they said to me, You've got man's hands. And I went, I know. And I said, At least I don't have a fat stomach. Well, it's really awful when because you know there's something wrong, Dan. And I knew there was something wrong because I looked in the mirror and I did not see myself. I could see changes in my face. I could but I didn't know what those changes were. I just thought maybe this is my lot. Um and um I have to sort of go forward to come back after my surgery. My father said to me, We've got the girl back.

SPEAKER_02 5:35

Yeah.

SPEAKER_00 5:36

Because my facial features were really I was struggling.

SPEAKER_02 5:40

Okay. And do you think that's the case in terms of they got you they got the girl back, maybe in the way you look and your appearance, but also Jenny, in terms of character, personality, energy.

SPEAKER_00 5:52

Oh I mean, this condition is so complicated.

SPEAKER_01 5:58

Yeah.

SPEAKER_00 5:58

Um, not only were my hands and feet growing, but you see, because I was wearing, because I was in a hot climate, because I was wearing jandles and all the time, I thought that my feet were just spreading out. But I I mean my my my wedding rings uh my wedding rings are tiny. I couldn't even I can't even get it past my nail of my finger. Right? And my feet have gone up a size. I can't even wear those shoes. But I didn't I didn't put all this together until so much later. So I had all of that going on. I also had heavy a lot of sweating, so not only was I having all that, but I was probably going through early menopause, because that's what it does. So that was at age 45 um and severe joint pain, right laterally towards the end of my diagnosis, I could hardly walk down the street. Okay. I was in I remember because I was in the Cook Islands in um in 2017 and I went just to do a class. No, I just went to do some weights on my own. And I started doing some weights, and I thought, I can't do that. I can't do that. And so I thought, don't be silly, just go and stretch. And I couldn't even do that. The pain the pain in my joints, I had severe carpal tunnel. At night, I literally used to hang my hands over the side of the bed. I was in that much pain. I had acupuncture, I had they were gonna carve into my wrists, I had um steroid injections in the back of my knees because I had this big what they called a baker's cyst, which now we know is just a swelling, part of all part of the swelling. I lost three and a half kilos within two days of having surgery.

SPEAKER_02 8:06

Let's just take a step back then, Jenny. So obviously you had um experienced these various conditions and symptoms, but you hadn't put a name to it and you hadn't figured out what it was, and no one could expect you to say, Well, it's Acromegaly, obviously. How did you find out? How uh uh what what was the point where you know somebody said to you this is what you've got?

SPEAKER_00 8:31

To be honest, Dan, I actually hit the wall. I hit the wall. I was really, I was just so down, and and at times I really thought, you know, I thought awful thoughts, to be honest. And it all happened one day because I couldn't I couldn't run anymore. I was running one day in Fiji and my left leg just literally gave way, still not knowing what it was. Um, so when I came back to New Zealand, I was actually swimming every day and I was having a sauna because, as you know, Wellington uh winters, or you may not know, can be quite harsh. Um and to be honest, the pool was the only place where I felt at ease with my body. So I did that every day, and then this one particular day I went with my my cousin and her partner, um uh and we did an hour and ten minutes of aqua jogging, um, which may seem like a lot, but to me it's not. Um anyway, they wanted to do another 10 minutes, so I got, I said, I'm just gonna get out and go and have a sauna. So I got out and I felt really wobbly. I felt like I couldn't stand up. So I sat down and I thought, oh, don't be silly, get up. So I got up and I started heading towards the sauna, and I thought, hmm, maybe that's not such a good idea. Uh so I sat down and I came back to my cousin and I said, I'm just not well. And I think it was I felt like I had low blood sugar. That's what it felt like. I've got a brother who's uh been a lifelong insulin dependent diabetic, and that's what it felt like. I felt like I had nothing in me. Um and I couldn't walk. Um, and in retrospect, probably part of that couldn't walk was I went into I had a panic attack because I've had I had a number of panic attacks um prior to this. Um uh funnily enough, I thought I was dying of a brain tumor. Um anyway, so my cousins came and sat down and I was my legs were just shaking, my whole body was shaking, which probably was um a mixture of um uh my blood pressure and a bit of anxiety all wrapped up in one. She said, Would you like the ambulance? And I said, Yes, please. So they did all the tools and they said, You tick too many boxes, we need to take you in because they couldn't get my blood pressure down. So we went in, got a free ride in the ambulance, and um they did all the neurological tests on me, and they were all seemingly okay. And um the registrar came or the young doctor came back and said, Um, we think you're all good to go home. And I went, yay. Um, because who wants to stay in a hospital, let's face it. Um so I said, yay. And then he said, I just need to go and check with my registrar. And he came back and said, Um, because I had a heart murmur, which has never bothered me, he said, I want to do um, I want to do, what do you call it?

SPEAKER_02 11:59

An echo ECG, echocardiogram.

SPEAKER_00 12:03

Yes. I just want to be sure. Okay. So I said, Yeah, all good. Um he was brilliant. And then he walked in, I was lying down, and he said to me, How tall are you? And I said to him, Boom. I said, I'm, you know, almost five nine. And he said, Oh, I thought you would be taller than that. And and I thought, oh, that what a nice man. Um and and off I went.

SPEAKER_02 12:36

You were dismissed, would you?

SPEAKER_00 12:39

Yep, so I went. And then he sent a letter to my GP and said, I think she's got acromegaly.

SPEAKER_02 12:57

So they didn't tell you there and then. He he didn't sort of say to you at that point.

SPEAKER_00 13:01

Okay. He didn't say anything, which is probably a really good thing. Yeah, yeah. Because funnily enough, funnily enough, several years back, my GP said to me, Can you bring me in some photos of you? Yeah. I want to see some photos of you when you were younger. I mean, what are you on about? And he said, he said, it's just your shape face. He said, I'm just looking at your features. Now my I have got quite a long face. It's just a hereditary thing. So I just thought, well, I said, well, my father's got quite a long face, you know. Um anyway, he said, I think I want to test you for pageants. I went, oh my god, what's page? And so he tested me for pageants. I took him in some photos, and he said, No, you've tested negative for pageants. Now one would say what is page.

SPEAKER_02 14:11

What is page? Do you know what page is? I've never heard of it.

SPEAKER_00 14:15

It's similar to Acromegaly, but I think it's slightly worse, if that's possible.

SPEAKER_02 14:20

Okay.

SPEAKER_00 14:25

I can't quite remember exactly, but it's similar in terms of he saw he saw the shape of my face. He saw uh yeah, he just saw the bone structure and uh all of that. And he said it's negative. So when I look back on it, now I think he he saw enough of it to test me for pageants.

SPEAKER_02 14:53

But not for acromegaly.

SPEAKER_00 14:55

But not for acromegaly.

SPEAKER_02 14:57

But you would have thought whatever uh sorry, Jenny, whatever the test for page is, you would have thought that's going to involve a hormone test, and that probably would have shown a change in growth hormone or Yeah, or to go away.

SPEAKER_00 15:10

And he's quite an investigative GP as far as GPs go. Um because he covers multiple diseases, people with multiple conditions. So I'm really shocked. I I I think he just missed it, to be honest. We my whole family kind of think. Um I hope he doesn't hear this. Um but really, why did he not look further afield when he saw those things? Because I they tested me for rheumatoid arthritis.

SPEAKER_01 15:43

Okay.

SPEAKER_00 15:44

Um they tested me for so many goddamn things. I mean, you know, you know the you know, yeah.

SPEAKER_02 15:51

Well this this is this I I've talked about this in the other interviews, this is the diagnostic odyssey. And it's it is um uh and it's a long journey for a lot of people, and it's a frustrating one because you wanna you want that answer.

SPEAKER_00 16:05

That's why I say it it it's it's awful to hear that, it's awful to hear that you've been diagnosed with it, but it's actually a relief because I felt like a hypochondriac. I didn't go back to the doctor because I thought they he just he must think I'm slightly mad or demented. Or, you know, because people think you're a hypochondriac. Even now, post surgery on drugs and all that stuff. I went into my specialist the other day, and I know I'm jumping forward a bit, but I said to him, he said, How are you? and I went boom boom boom boom. And he went, Oh, I said, God, I feel like a hypochondriac. I said, but it's not, this is real.

SPEAKER_02 16:54

Okay, so in 2017 you had your surgery. Uh did they tell you if it was a I'm sure they did. Do you know if it was a micro or a macro adenoma? What was the size of the tumor?

SPEAKER_00 17:06

It was a macro. It was ten by ten by ten.

SPEAKER_02 17:09

What what centimeters?

SPEAKER_00 17:12

No.

SPEAKER_02 17:13

Millimeters.

SPEAKER_00 17:14

Right?

SPEAKER_02 17:15

I have I have I have to bigger than my body. So that is it, I think that would be ten by ten by ten millimeters would be a micro then, because I think a macro is over two centimetres. So unless it's Oh, is it? Yeah, unless it's the square area or something mathematical. I think that's probably it's not a big tumour then, by the sounds of it, but obviously all tumors are uh uh serious.

SPEAKER_00 17:39

Yeah, don't quote don't quote me on that, but I think that's what it was.

SPEAKER_02 17:42

Okay. Uh I assume they um prepared you, you know, you had the MRI scan and uh and they looked into all of that. How was it for you going into the surgery room then in 2017? Were you uh excited? Were you nervous?

SPEAKER_00 17:56

Were you when he said to me that they were gonna operate, I went, great, do whatever you need to do to get rid of it, I said. Um he said, you're a very healthy candidate. Um so I actually had my surgery at the end of March, 30 March 2018.

SPEAKER_02 18:16

Okay.

SPEAKER_00 18:18

And I they took me through all the, you know, you go through all the different because this is my first time to have surgery. I hadn't been into an operating theatre except when I had my tonsils out, which I can't remember. Um I just went through a process. They said fill out this form, and I filled up the form, and they said, put on this gown, I put on that gown, they said do this, I did that. And I just went through the process. I actually wasn't even thinking about it. Um and then they said, fill out this form again, you need to do this again. I went, Yeah, cool, that's great. Um I got changed and they said, Can you walk to the theatre? And I said, Of course I can. I've got two legs and they're both working. And um I I didn't I don't actually know that I felt scared.

SPEAKER_02 19:09

No, well I think that's a I think that's a good approach to have. I think for some people it is a scary thing. I think I think uh acromaglia is different because y you want it out. You know, like I guess like other tumors or other, you know, uh conditions that people have, you want rid of it. You want it gone, and and you know, it's it it needs to be gotten rid of. So yeah, uh everyone deals with it differently. I think it depends I think it depends partly on the complications of the surgery. Um but I assume they sort of did transhenoidal surgery, so up the nose. Yeah, they did. Did they tell you afterwards, you know, how successful it was, or I'm assuming, you know, a few months post-surgery, uh, they gave you the result. And did they get it all out, or is there any still left?

SPEAKER_00 19:56

No. Um there they didn't get it all out. He actually thought it was um quite well delineated, the tumour itself. But um what like he said, we can't see round corners. Um and what happened is that he probably got about half. Um and so he said, I'm prepared to go two or three times. I said, Well, I'm with you, because he was an amazing neurosurgeon. Such a kind, kind man. Um and I said, Look, I trust you, I will do whatever you think is appropriate, because obviously I want to get rid of this thing. Um and so we were going to go in for round two. Um, but he looked on the MRI and he was just a bit unsure. So they did an MRI angiogram, and it turns out that I'm very lucky because not only do I have the tumor, I've got an extra artery.

SPEAKER_02 21:00

Oh my lord.

unknown 21:02

Okay.

SPEAKER_00 21:02

Because the artery that you had, there's an artery that you have when you're born that involutes like it just goes away within about seven days of being born. Don't quote me on all this, because it may not be exactly right. And he said that artery is right next to the balance of the tumour. And then there's another there's a professor who's from Australia who's very highly regarded in the field of in fact, he apparently designed some of the small instruments they use for um what's it called? For the surgical refrigerator.

SPEAKER_02 21:46

For the surgical procedure, yeah.

SPEAKER_00 21:47

And he happened to be in Wellington at the time that they did my um my MRI angiogram, and he said I wouldn't go near it. He said I I've never seen anything like it.

SPEAKER_01 21:59

Wow.

SPEAKER_00 22:01

And not only that, I have a most a lot of people do have them, but I have an aneurysm on my rear communicating artery.

SPEAKER_02 22:12

Wow, okay. So there was complications.

SPEAKER_00 22:15

Yeah, so they can't do the second surgery.

SPEAKER_02 22:18

Right.

SPEAKER_00 22:19

Because I could it was too risky. Yeah. Yeah, way too risky.

SPEAKER_02 22:23

Well you have to respect you have to respect those decisions. I I you know, I'm I I do. I I was in a similar position in that um because I have this I have an arteriovenous malformation, which is this kind of mass of blood vessels around my eye and um midbrain. Um they they didn't tell me really until after the surgery that there was a ma a massive can uh sort of network of vessels on the way up to the tumour. And my endocrinologist uh my endocrinologist said to me, I knew it was there, but they didn't tell me quite how complicated it was, just because I think they didn't want to scare me. But my endocrinologist said to said to me, I I wouldn't have touched that.

SPEAKER_00 23:00

Really?

SPEAKER_02 23:01

But my neurosurgeon did. And uh that's the difference between an endocrinologist and a neurosurgeon, I suppose.

SPEAKER_00 23:06

Exactly. Exactly right.

SPEAKER_02 23:09

So are you on any medication now?

SPEAKER_00 23:12

Yes, I'm on octariotide.

SPEAKER_02 23:14

Okay, and what's that, an injection or a tablet or yeah, it's a four four weekly injection. Okay, and that's to manage the residual tumour, I guess.

SPEAKER_00 23:24

Yeah, it's to it's to help suppress the because while you've got a tumour, there you're still the it's still pumping out growth hormone. So the octyotide is designed, as I understand it, to help suppress the GH.

SPEAKER_02 23:39

Okay. And do you notice any I mean I I'm you know, I don't want to talk about too much about the pharmaceutical side of stuff, but do you do you notice any major side effects or does it keep you ticking along?

SPEAKER_00 23:50

Absolutely.

SPEAKER_02 23:51

Okay.

SPEAKER_00 23:54

Now now it's trying to decipher whether the headaches and the severe skull pain are from the um from the condition or whether they're driven by the octariotide. It's hard to tell whether the gastro issues are related to the condition or the octyotide, and then there's a memory, and then there's the two lots of colonoscopies removing about seven or eight polyps, then monitoring one. Um uh so that has to be done regularly. So what else have we got?

SPEAKER_02 24:34

The polyps, I would suggest the the colonoscopy and the polyps is isn't would normally be growth hormone related rather than medicinal, I would presume.

SPEAKER_00 24:43

Correct. No, you're right.

SPEAKER_02 24:45

I I have to still go for colonoscopies uh to see if there are any growths. And thankfully I'm in remission and there were none found. But I know that it's something we all have to have done.

SPEAKER_00 24:56

Yeah, it's just another thing, isn't it, that we have.

SPEAKER_02 24:59

Yeah, of course. I know. I never even I never even heard of a polyp. And anyone who's listening are thinking, what the hell is a polyp? Uh what they do is is a lot of p um uh when you're diagnosed with acromacy, you go for a colonoscopy and they obviously put a camera up your bum and looks all the way up to your colon, which is pretty painful. And they find these tiny sort of growths which are called polyps, and and they burst them. They kind of snip them and burst them, and uh and because they can grow and develop into much worse things. So, yeah, monitoring that is really important. And and this is the thing, Jenny, isn't it? When we when we're blessed with a condition like as such as this, we have to constantly monitor our health and and and monitor what we're going through and be up be our own advocate.

SPEAKER_00 25:48

We do, and you know, I think right throughout this, I mean, I I have a really positive attitude towards life generally, um, and I run my own business um and I work seven days a week. And you know, some people said to me, How how soon after the uh surgery did you work? And I didn't really want to tell them the truth because I was taking a phone call in my um hospital bed via my mum. Um and the nurse said, You really shouldn't be doing that. And my mum said, Well, can I just ask her a question? Because at least if I ask the question, she's not gonna stress. But if you don't let me, she'll stress even more. So um it's probably the better of two evils. Um but I suppose what I'm saying is that um I don't know what I'm saying.

SPEAKER_02 26:35

Um I think what you're saying is that it's it's it's impacted your life, but it's not altered your life. It's not it you you're still motivated and as positive as you can be to be the journey that you always were and to you know do the things that motivate you and and and you know, make make you want to live, is that right?

SPEAKER_00 26:55

You just have to manage it. That's what people say to me, and they go, So you're all better now, and I go, hmm, what does all better mean? Um the the surgery is the start of another process, I suppose, isn't it?

SPEAKER_02 27:09

Yeah, we're never surgery. We're never cured from it. Uh even those that are in remission in remission, there is always always the chance that it can come back. So, you know, acromegalics do have a lifelong journey uh to to monitor this. And for those that are unfortunate enough not to have the full tumour removed, you know, you have to manage that little bit of residual tumour left over and and make the most of life as you can.

SPEAKER_00 27:36

That's correct, that's correct. And I think my girlfriend kind of hit it on the head the other day, hit the nail on the head. Someone said, so how is Jenny really? Um uh and she said she's as good as she is on the day.

SPEAKER_02 27:53

That's it. Well, it's one day at a time, isn't it?

SPEAKER_00 27:56

It is. And it's not to say that that's a negative thing, it's um it's a realistic thing. And God Dan, I would never have had needed to lie down at three o'clock for two hours. But sometimes I just do, and I literally feel that tired, and I know I push myself, but I'm only 54, you know. Um people say to me, I don't I have a bad memory too, and I like my father. And I go, Yeah, dad, but you're 83.

SPEAKER_02 28:26

Yeah.

SPEAKER_00 28:27

You know, it it I know things have changed for me. Um, and I know this with a couple of my fellow women friends in the States. Um, thank God we met those lovely people that we met all met each other at the international conference, I have to say, what an amazing network of people.

SPEAKER_02 28:46

Yes, yeah, absolutely. Jenny, uh it's been absolutely fascinating talking to you. I I've always thought you've had a great um well, I wouldn't say a sense of humor about this, but you've always had a great outlook on it. And um, you know, I I I think the way you you view this is really refreshing, and everyone deals with it in their own ways, and yours is definitely a unique way of looking at it all. And um Yeah, exactly. And and I and I wish you well with the future and uh I hope you can keep maintaining it and managing it and doing all the things you do. And you know, I'm sure if uh ever you are needed to be in hospital again, you'll be answering your phone calls as soon as you're as soon as you're well and better again. So Jenny, it's been an absolute pleasure. Thank you very much for taking a few years.

SPEAKER_00 29:30

Hey, thank you. Thank you.

SPEAKER_02 29:32

Uh and uh if you found uh Jenny's story interesting and want to hear other AcroTales, you should know what to do by now. If you're a regular listener, head over to Acrotales.com where you can find the ever expanding library of interviews. And of course, you can also subscribe to the podcast and receive the latest updates via iTunes, Spotify, and your favourite podcast app. So thank you once again to Jenny. This is me, Dan Jeffries, signing off. I look forward to seeing you for another Acro Tail.