AcroTales
AcroTales
Episode 8 - Bert
In Episode 8 of AcroTales we speak to Bert from Nebraska. Bert was diagnosed with Acromegaly in 2010 after a range of health complications led various specialists couldn't initially make the correct diagnosis. We discuss this impact this had on Bert's life, how further complications meant a return to hospital and how he now faces up to this unique condition - by giving something back.
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 eight, and I am really pleased to introduce Bert from Nebraska. Bert is 60 and was diagnosed with Acromegaly towards the end, uh towards the beginning, sorry, of 2010. Bert, welcome to Acrotales.
SPEAKER_00:Thank you, Dan.
SPEAKER_01:So uh as is the usual format with this show, we always ask uh how you were diagnosed or how you found out about Acromegaly and and started on this unique journey. So tell us your tale.
SPEAKER_00:Um so um it starts out a little bit earlier than 2010 with a few uh things here. So in about 1996, I had severe obstructive sleep apnea with an enlarged uvula. They did an uh operation on me and removed my uvula and my upper palate, and that did not help with my obstructive sleep apnea. At that time, the doctor had no idea where to go from there since he had done that, all he could have done. So moving forward to 2006, I had uh enlarged heart with congestive heart failure. At the time, they suspected it was a virus because and they couldn't find any virus, they couldn't find any reason why I had congestive heart failure with an enlarged heart. And uh needless to say, I went on an ICD, I had an ICD implant the following year, and we we went from there not knowing the reason why things occurred. In 2010, March of 2010, uh, I wasn't feeling right. I went to my primary care physician and he diagnosed me with uh diabetes having a blood sugar level of 825. He put me in intensive care. That was on a Friday. Uh that Sunday, the endocrinologist that was on call, she came in to see me for my diabetes, and before she left, she had stated to me that she suspected there was something else wrong that she would like to do additional blood tests for. At that time, she didn't tell me what it was.
SPEAKER_01:Okay.
SPEAKER_00:And I told her, sure, take the blood test, which she did. And the following afternoon, she had come in to my room and she said, Mr. Nelson, you have what we believe you have, what is called acromagly. And like everybody else, at that point, I was acro what and what is it? And she explained things to me. Uh, she said the next step was for me to get my uh CT scan, which we did uh in April of that year, and then in June of that year is when I had my surgery.
SPEAKER_01:Okay. So that must have been quite a moment then to be given a uh an answer in inverted commas as to uh as to why you had changed so much, or you know, uh what had caused all of these problems over the years.
SPEAKER_00:Yeah, and it it it answered the the sleep apnea and it answered the the heart failure pretty much right away. I didn't see a lot of other things, a lot of my issues are internal, um, and then my skull. So um to me, I thought I was just getting older, looking more like my dad. Um the internal organs, I had no idea what was going on with them until a couple years later.
SPEAKER_01:So Okay. And when she uh that afternoon, when she did she did she do growth hormone tests? I mean, what what caused her to think that you had acromegaly? Do you know? I mean, was it a specific test or was it just a gut feeling that she had looking at you?
SPEAKER_00:She later I can't she's still my endocrinologist to today. And um, I have found out since then that uh what she she suspected acromegaly. She says she suspected acromegaly as soon as she came in and looked at me. She thought that my hands looked rather large and she could see it in my face, um, according to her as that I had had it.
SPEAKER_01:And that was that the first time you had seen an endocrinologist then.
SPEAKER_00:Yes.
SPEAKER_01:Okay. So it's it's amazing, isn't it, really, how that diagnosis can take place. After all the tests, surgeries, everything, it just takes one specialist to look at you. Uh and and diag and you know, kind of diagnose you from there. And it's it's amazing how often that happens, isn't it? And I'm sure you know, having having spoken to so many people with Acromagula, everyone's story is very, very different about how they're diagnosed, and it's so often by chance.
SPEAKER_00:Well, I I f I find it amazing that there's a lot of people out there in the Acromagaly community that their endocrinologists don't detect it right away. And and um I am very, very blessed and lucky that my endocrinologist came in. That number one, she just happened to be the one on call that weekend.
SPEAKER_01:Yeah.
SPEAKER_00:Um, number two, that she was familiar with it. And then number three, that as soon as she walked in, she noticed it and and was concerned that I possibly had something more that she wanted to check into. And I thank God that um that I allowed her to take those blood tests. She took it for growth hormone and IGF one. My IGF one was 1100, my growth hormone was in the 50s. So um yeah.
SPEAKER_01:Pretty high then. Um okay, so you uh you were booked in for the surgery. I'm assuming that's the transphenoidal surgery for anyone who's listening that's up the nose. I I assume that's what you had.
SPEAKER_00:Yes. Okay. Uh I went, yeah, I went to the male clinic in Rochester, Minnesota, and I did the transphenodal. And that's another story in itself how that all came about.
SPEAKER_01:So well, tell us. Uh I'm intrigued.
SPEAKER_00:So well, so I went up there, she set me up with a specialist up there in their endocrinology uh for a consult, and I was to be there on Monday. So I I went up, I I drove myself up to Minnesota. It's a six-hour drive. Uh, I went and I saw my consult, and they did a sleep study test. Um, I went as long as 96 seconds without breathing during the sleep study test. Oh my god. Um, yeah. And on Wednesday is when I finally saw the neurosurgeon during all my testing I do. And speaking to him, he was explaining transmodal surgery procedures to me and how to go about it. And I asked him, I said, well, how soon would you be able to do this procedure? You know, how long is it before you can do this? And he looks at me and he says, I can do it as early as tomorrow if that's what you want. And at that point, it was like, as long as it's approved through my insurance, blah, blah, blah, blah. I said, Yeah, let's get this done and over with. I want this thing out of my head. Um, so the next morning I was in the operating room. Uh, came to find out my neurosurgeon listens to Led Zeppelin when he does his procedures, and the tumor was taken out. And on Friday afternoon, the catheter was taken out, and I was driving myself home with the nose bandage, uh, my head laid back, driving down the interstate, and people looking at me as they drove by.
SPEAKER_01:So from Tuesday to Friday.
SPEAKER_00:Yes.
SPEAKER_01:That is a that's a very quick turnover. Okay. Yep. That that's amazing. And do do you did you ask or were you informed as to how many procedures he had done? Because that's often so important, isn't it? The more procedures that are done, the more expertise the surgeon has, the better the outcomes.
SPEAKER_00:Yes. So he performs on average at least two procedures every week, sometimes three.
SPEAKER_01:Okay. And he'd been there for a while.
SPEAKER_00:Yes, he'd been there a long time. He um he specializes in pituitary um transvenodals. So um, besides some other surgeries, but um Okay. You know, you take you take that in a year's time. That's he he does five to six hundred per year easily.
SPEAKER_01:So that's that's just so important. And for anyone listening who has been diagnosed, is you must ask how many uh surgeries your uh specialist has done. You don't it's unlikely it would happen, but you don't want someone coming in who's only done a handful. It's really so important uh that they are experts at doing this. Do you do you know which song he took the uh tumor out to? Which it's gotta be stairway to heaven. Stairway to heaven. Sure.
SPEAKER_00:Uh yeah, I don't know which one, but that would be a good one for him to listen to.
SPEAKER_01:Do you know whether you had a micro or a macro adenoma? Do you know the size of the tube?
SPEAKER_00:I I had a micro, it was uh 0.5 centimeter. 0.5 centimeter um for easy translation, it's almost a quarter inch in size.
SPEAKER_01:Okay. So that's quite small then. Mine mine was 910 millimeters, so you know, maybe just over twice the size. And did they tell you post-surgery that they had removed it all?
SPEAKER_00:He believed that he had uh gotten the he had gotten everything, is what he said. He said we believe that we got it all.
SPEAKER_01:Okay. Wow. So uh in on the Tuesday, home on the Friday, or driving back home on the Friday, no CSF leaks, no spinal fluid leaks, no need for uh additional medications?
SPEAKER_00:Uh just they I believe they had me on the steroids, um, but um I did not have any leaks.
SPEAKER_01:Okay.
SPEAKER_00:Um and and I went about doing the nose rinses as they recommended and and going through the healing process.
SPEAKER_01:And how did you find that? Did you did you find a change in yourself very quickly, or was did it take a lot longer for you to start noticing the uh the benefits?
SPEAKER_00:Um I didn't really since I hadn't seen a lot of facial feature changes in me. I I mean I didn't have a lot of swelling or nothing like that. But um the the first thing I noticed is probably a month later that uh my wife pointed out that I was no longer um snoring. I was no longer holding my breath when sleeping. Wow. Um since that day, I no longer snore. Uh I snore maybe a little bit here or there. Um I no longer have sleep apnea, at least that is noticeable. Um it used to be that she would wake up numerous times and have to nudge me to get me to breathe or nudge me to roll on my side so I would start breathing normal again. Now I sleep on my back, my side, whatever, and and I'm fine. And and that all occurred within that first month after the trans novel that uh the sleep apnea uh has gone away.
SPEAKER_01:So it's quite amazing, isn't it? It's um you know that five millimeter mass causing so much problems, including you not breathing whilst you're sleeping. Right. It's quite amazing, isn't it? And and and so you must celebrate, you know, every day in some ways that this was discovered, it's gone, and uh, you know, you you're you know relatively fit and healthy and and able to function properly.
SPEAKER_00:Yeah, um it did come back. Ah so uh uh I was only in remission for less than two years. It was um so that was June of 2010, and then in November of 2012, I told my endocrinologist that I'm not feeling right. I'm just I don't know what I was feeling. I was feeling different, and um I didn't feel right. So um it was due, it came time for my next uh CT scan anyway. I can't have MRIs because I have an ICD implant. Okay, but uh so it was time for my next CT scan um to monitor me, and at that point is they discovered that it uh I had residual tumor that had returned, um, and that's when they started me on medications.
SPEAKER_01:So they decided not to operate then?
SPEAKER_00:Because it was no they yeah, it's too small for them to operate.
SPEAKER_01:Okay. And can I ask what kind of meds they put you on?
SPEAKER_00:So I originally started on cabergolin.
SPEAKER_01:Um is that an injection or uh is is that an injection? Oral.
SPEAKER_00:Oral yeah, cabergolin's the uh the oral um that's usually used for uh prolactinomas. Yeah um, but they also use it according to her, they also use it for aquamangles. So they put me on traberglin and started me on Samochlin 60, uh, moved me up to Samochlin Depot 90, and eventually up to Samochlin Depot 120, which are the monthly injections.
SPEAKER_01:Okay, so I am guessing the numbers uh uh it that's an increase in strength of the dosage, I presume.
SPEAKER_00:The correct the increase in the dosage. Um obviously when they the the 60 was a starting dose, um they their intention was to always put me at 90, but the 60 is a starting dose to get used to the side effects. Um they moved me up to the 90 and then the 120, and and I was on the smochlin depot for a period of five years until 2017.
SPEAKER_01:Okay. And and what were the side effects from taking that?
SPEAKER_00:So the the biggest side effects I had was um the day after injection, I would um I would get nauseous, sick, um, within a couple days, I was usually throwing up, you know, once or twice. Okay. Um uh loose stools, diarrhea. Um, so you know, you have to understand that it's it's also used for Gep NET tumors, endocrine gap nut tumors, which are cancerous tumors. Right. So I consider it as part of the um chemo family, and that's why I was getting sick from it. I know there's other people that don't, but I was getting pretty extremely sick from it for up to a week. Um, eventually I got used to it, and I wasn't uh I wasn't throwing up as much. Uh I might throw up once uh after a couple days, but but eventually it got to where I was going through a lot of hypoglycemia with low blood sugar, and I'd probably go hypoglycemic three to five times a week within that first week of taking it. Um within years, I was getting to the point where the third week after the injection, so a week to two before my next injection, I was starting to have breakdown symptoms or breakthrough symptoms. I'm sorry, um, to where I was extremely tired, my my muscles and my legs were aching, the muscle was deteriorating in my leg, it was hard for me to walk, I had a lot of joint pain, things like that. Um, and a bit that's when they uh eventually switched me over to somivert.
SPEAKER_01:Okay, that's a pretty pretty rough ride then you had. And and and the same of it uh was better experience for you.
SPEAKER_00:Somivert's obviously a better needle, it's a lot smaller size needle.
SPEAKER_01:Right.
SPEAKER_00:Um, it started off for me pretty good. I was taking 10 milligrams a day, five days a week. Um and I I did alright on it for a while. I was on that until from late 2017 until October of 2019, that time frame. It eventually had where I was also having breakthrough symptoms with it, where I was having a lot of exhaustion, a lot of leg ache, a lot of joint and muscle pain. Um and and through the community is I learned about the cedar cyanide study, which I went on the cedar cyanide study uh late 2019, which was a combo therapy study of Samochlin 60 milligram and somovert 30 milligram. The samochlin 60 was monthly and the salmovert 30 was weekly. And at that point, um, probably within the first week after taking both injections, I had never felt that good. Wow. Um, in the the prior seven years to that, that this was the best I felt on the combo therapy for those six months that I was on that combination.
SPEAKER_01:So this was uh this was a study uh then, Bert. So how did you feel at the end of the study?
SPEAKER_00:Um so what they eventually did at the six-month part was they switched me to uh 30 milligram once a week only as part of the study. And by the end of the study, I started feeling my legs were aching and deteriorating. I couldn't walk very far, things like that. Um, so when the study was over, they moved. I I it was decided between my endocrinologist and the study doctor that uh I would go to 30 milligram twice a week for the first three months of being off the study. Uh I felt somewhat better, but still not the same. And at the end of the three-month period, uh it was decided between me and my endocrinologist that uh I would go to 30 milligrams three times a week on Monday, Wednesday, Friday, 30 milligrams each day. And since then, uh I I do pretty good. I I can walk about a mile now, a mile and a half, um, and I'm feeling a lot, lot better.
SPEAKER_01:Okay. Well that's fantastic. And and and has that helped sort of, you know, your mental frame of mind as well? Do you as well as the physical side, do you notice a a shift in your personality or your your get up and go or you know, your your general day-to-day demeanour?
SPEAKER_00:I I I feel much more energetic to get up and get things done and do things.
SPEAKER_01:Okay. Well, that's just fantastic. And um, but we met uh last year um for the first time at the uh at the Acromegaly conference in New Orleans, and obviously we chatted uh or uh engaged with each other through the Acromegali uh Facebook pages. How have you found the social networking and the social support side? Uh uh, you know, and how has that changed maybe over the 10 years or so since you've been diagnosed?
SPEAKER_00:Um so when I was originally diagnosed, I didn't know that there was a support site. Um I don't even know if I'd look for one at that time. It was probably, I'm guessing, three, four years after diagnosis that I finally found one that I was really into needing. I wanted other people to talk to. I'd never met nobody before with Acromagley until the conference. Um and but I think the conference socialization and the and the Acromagly Support Community website and uh Facebook site has has been extremely, extremely helpful to, you know, I I can openly talk about things I'm gone through and people can relate to it and and not judge you and and give their opinions. I've learned from others, and they're a great amount of information um that pertains to me, myself, and pertains to them that I don't experience. So it's a learning experience both directions, and and I couldn't appreciate it more.
SPEAKER_01:Yeah. I think um one of the things is when you've been through something like this and and you know it's a rare condition, uh you there is this inherent sort of want to give back and to you know help other people that may be going through it. So I would ask you, if you were meeting somebody today for the first time who's just been diagnosed with a condition, what would be your words of advice to them?
SPEAKER_00:Um I guess I would have to tell them half hope, half faith, half strength. Um there are there are a lot of people that go into remission. Um there's and and I'm the type of person that tells it the way it is, that there's a lot of people that don't go into remission. However, that doesn't mean that you can't live a normal, healthy, uh active life. Um I know it affects others or some are have a lot of joint pain and muscle pain, but I think if they uh become their own advocate and work on their um what their medicine is that they can take that best suits them. Um if they just keep working at it, that they'll eventually find what's appropriate for them and that they can they can live a good, healthy, active life and and not be held back.
SPEAKER_01:So yeah, I think that's uh vitally important message because I think when you are diagnosed initially it's you know it's scary and you uh nobody knows what the future holds. Um and the and the condition can lead to further complications, but I think just as many people would actually come out of it um leading a relatively healthy life. And it and in some ways it's it's a it's a very strange wake-up call, I always think, acromegally, in a weird way. Because when you when you're not producing your hormones properly and then suddenly you are producing them properly again, you ri you get a much better appreciation for what you have and for sort of life in general, I think.
SPEAKER_00:Yes, very much so. You know, the other thing I would tell them is that um if they're feeling up to it, if they can do what they can to help the community, to help others, to do these research studies. You know, one thing at the end of my study that I forgot to mention was they had they had uh come to me and they they had stated that they are starting a research program to research, to do stem cell research, uh, not for people with acromagly, however, for people that are deficient in growth hormone. And obviously, we have excess growth hormone. So they came and asked me if I would be willing to donate vials, which was three, four vials, large vials of blood, to their stem cell research program that they were starting. And what that program is going to do is uh produce stem cells to be given to growth hormone deficient patients that do not produce growth hormone, to give them those stem cells and hopefully give them the growth hormone they need in order to uh get what they need to give themselves a better quality of life and give them the growth hormone to grow their bones and their muscles and their organs appropriately and properly uh since they can't produce growth hormone. So that was kind of unique and an interesting thing to do. So I'm proud to say that I've donated to their research uh for growth hormone deficiency patients, and I hope it helps them.
SPEAKER_01:So I'm sure without doubt it will help them. And you know, that's the kind of thing I I think that we can all play a part in trying to do if you're you know, whether it's something as biological as that or whether it's just uh talking to somebody or giving bits of advice, I think anything that can be done, and it's not an essential to do it either, it's down to the individual, uh, you know, whether they feel comfortable doing it. But I think there comes a time when you when you find yourself in a good place and you and you think, right, you know, I had others help me. How can I how can I give that bit of help back?
SPEAKER_00:Absolutely.
SPEAKER_01:But it's been absolutely fantastic uh chatting with you and uh uh quite a remarkable story, I think, and uh on and your um how you how you dealt with it quite stoically uh and how you continue to um uh deal with it uh in a positive light. So thank you very much for sharing your tale. It's uh been a pleasure talking to you.
SPEAKER_00:Dan, thank you very much. And you're always my me, myself, and I person. Thank you, Dan.
SPEAKER_01:Oh, what a plug. I didn't even ask for that. Thank you, Bert. Uh if you if you found Bert's story interesting and want to hear other Acrotales, uh including mine, no, mine's not on there, head over to acrotales.com where you can find the ever-expanding library of interviews. And of course, you can subscribe to the podcast uh so the updates ping straight to your phone or your that uh device uh via iTunes and Spotify and your favorite RSS reader as well, feeder, I should say. So once again, uh big thanks to Bert for sharing his tale, and uh we look forward to seeing you next time on another AcroTale.