Episode 48: Deadly Desperation Leads to a Myocardial Bridge Unroofing in Pakistan.

SPEAKER_00 0:00

I'll never forget, he said, basically, he says, you've got months before this thing kills you. He says, if it doesn't kill you, the medication will. He says, you're up the top end of all the medication. And he says, and that's hurting your liver and your kidneys. So if you if this doesn't kill you, you'll get renal failure and that'll kill you. You need to get here now. And that scared the crap out of me, to be honest. Within about 12 days, we're on a flight to Pakistan.

SPEAKER_01 0:36

Welcome to Imperfect Heart, a place for you to join me, Jeff Holden, in conversations, discussions, and dialogue about our hearts and the impact myocardial bridges have. Most importantly is to have you leave each episode with hope, knowing you're not alone and that what you're experiencing is real. The story you're about to hear is remarkable in so many ways. First, the severity of this gentleman's symptoms got down to the necessity for surgery or possibly death with no time to waste. His journey went over 5,000 miles or more before he finally found, in desperation, his solution. And wait until you hear where. An average motorcyclist, he's originally from Australia, lives in Portugal, has citizenship in Sweden, sought care in the UK, and is now on his property about 30 miles from Lisbon, welding gates, tending to the land, and riding around the countryside on his motorcycle when he can. We're going to let him share his incredible journey to Pakistan. Yes, Pakistan, as he can explain his situation best. Steve Millington, welcome to Imperfect Heart. I am so fired up to speak with you for so many reasons. First of all, you have the most heavily accented English of anybody I've spoken with so far. So please bear with me if I ask you to repeat yourself a couple of times. But that uh that Perth Australian accent is one we have not had yet. Yours also is an incredible journey. And while we're familiar with some of the symptoms that you had, we we recognize that as people with the condition, but your literal journey, the landmass that you've covered, the places that you've gone to get to your final outcome, is it's incredible. I mean, I don't know of anybody that's done what you need to do and got to that same point of desperation to where you literally were concerned for your life and had to do something at some point. So that's a heck of a tee-up for an episode, I think. Why don't you get us started on a timeline from your first recognition that something was wrong and then the steps that you began to take?

SPEAKER_00 3:27

Okay, well, you know, if I'm truly honest, I probably started having my first symptom back in Australia when I was probably around 22. I'd been working and I suddenly got short of breath, felt like a very heavy pain in my chest. Obviously, I I took myself to an emergency room and they said I just had angina. And that was probably thinking back, probably the first time I ever had any sort of symptom regarding my heart or anything like that. I didn't really get anything after that point. I remember having a little time off afterwards, just going back to work. Then by the time I I met my wife, ex-wife at university, I was studying psychology, and you know, as things happened 10 years down the track, I had a son and moved to Sweden. And that was back in 2011.

SPEAKER_01 4:19

And so moved to Sweden from Australia, you moved to Sweden?

SPEAKER_00 4:23

Yeah, I went to uni at 27, so I was an adult student. I've already been working for many years. And yeah, through through that, I I met my ex-wife. She was a Swedish international student at the time. You know, we hooked up, got married, lived in Perth for 10 years, and then when my son was born, we we decided to go to Sweden a little bit better financially and care in a in a social democracy in Sweden. Uh very big change. I had been there before, but you know, to live there was a different story. I think around after that, about the first year I got there, I started having very bad pain in the evenings, chest pain. I was getting pain in my jaw, behind my shoulder. And I went to a doctor there and they diagnosed me with GERD and basically sent me off for some tests, and I had an endoscope, and they said, Yep, you've got a hiatus hernia. It's a medium-sized one, take isomoprezol basically, you know, every day, and that should handle it. If you have an attack or any sort of major symptoms, basically, you know, just take a few more of them and that should cover it. So the following years, I was probably getting an attack about once a month, maybe sometimes twice a month. And it always happened in the evening when I was lying down and resting or sleeping. I'd wake up in excruciating pain. My chest and and pain in my jaw, back of my shoulder, I'd get it running down the left side of my body, and I'd just munch these tablets, and really nothing was working. But because I'd been told what it was or what I thought I was to be, I just endured that for many, many years. Fall through Sweden basically. I left about five years ago, and I was still having these attacks, but they're just becoming more and more regular over time. Started getting them during the day while I was at work as well, and they would last anywhere from 10 minutes to an hour, and I just pushed through, you know, I'd I'd take the tablets, you know, I was using vinegar and bicarb soda, and you name it to try and get these things to stop. Never bothered going to the ER. There was a couple of occasions in Sweden where I thought I needed to go, but I just managed just to grin and bear it. Got divorced and met my new partner, Kim. And if it wasn't for Kim, I wouldn't be here. But we ended up going to the UK because we had some things to do down there first on our way to Portugal, and I started getting very, very bad dizzy dizzy spells, uh, vertigo. And that was really the first sign that something was new from what I'd been experiencing before, and it was it was regular. I was starting to get a lot more attacks, and I was starting to get the vertigo with it. You know, they basically gave me tablets for vertigo in the UK, and we were there for about six months, and on and off, you know, I'd have a week or two where I was feeling fine, and then I'd get another big attack, usually in the evening, doing nothing, going to bed, you know, 10, 30, 11, and one o'clock waking up in excruciating pain, and believing that it was good.

SPEAKER_01 7:28

How old are you at this point, Steve? Because this is you say four or five years ago.

SPEAKER_00 7:32

Yeah, so now I'm coming up 51. So uh, yeah, this I would have been, well, yeah, I would have been 47 at that point.

SPEAKER_01 7:44

Okay.

SPEAKER_00 7:45

So so eventually we we finished up in the UK and we drove down to Portugal. We had two cats with us, and that's why we're driving everywhere from Sweden to the UK and then down to Portugal. And I was still having the attacks for the first couple of months. We were staying in an Airbnb while we're looking for a property down here. And we we got into our property the year I had the surgery, so 2022. And everything was going as normal. You know, I was still getting the attacks, and then one evening in the end of May, so we'd only been in the house for a few months and been working pretty much on the property. One evening I had such a really massive attack, and I had some painful ones before, but this one actually launched into a tear and gave me a transient transient systemic stroke basically attack.

SPEAKER_01 8:36

Oh boy.

SPEAKER_00 8:37

Um we had the uh obviously ambulances, and we have uh fire brigade that comes with the ambulances as well. So I had four pretty much paramedics and a doctor from the hospital here, and while they were monitoring me, they actually saw me have the tea up. So basically I couldn't speak, I couldn't communicate, I could hear what they were saying. Just every time I tried to speak, nothing happened. And then they just noticed the whole left side of my body just droop, basically. And that was the first time I heard the word tear used. I didn't know what it was. They took me into the hospital and put me in a coronary care unit for a week and gave me a CT and saw that I'd I'd had a something going to my brain that was dissolving, and that and I after about 24 hours, I got my speech back and movement again. But they noticed that I had a bridge, and that was the first time I'd ever heard the term myocardial bridge, and they were all very excited. Like I said before, they they know about bridges here in Portugal, they are aware that they can be symptomatic, but for most cardiologists and doctors that work in the coronary units, they've never actually seen one. So I remember my first angiogram with the room filled with about 16 doctors and cardiologists, uh, all wanting to witness this bridge. So that was the first time I saw it. At that time, that's about four or five centimetres, and basically they were saying this is what's causing the problems that you're having. It's not your GERD, your GERD doesn't give you the jaw pain, it doesn't give you this experience. It is again on a nerve that can give you sort of heart attack-like symptoms, but they were they were dead certain at this point in my local hospital that that wasn't the case. They released me after about a week, and I saw my local GP and then another cardiologist, and they put me on nitro patches and a beta blocker, and I was fine for two days, and then I ended up back in the ER again with another massive attack. I didn't get the T this time, but just the excruciating pain in my chest, um in my jaw, and this went on for a couple of weeks, going in and out. Every couple of days I was back in this same ER ward, and even though the cardiology department knew what was going on back then, the ER and the cardio section at this particular hospital, the records weren't linked. So I was getting a lot of um, let's say, arrogant interns, new doctors, thinking they knew what was going on and going, oh no, no, no, it can't be this, no, no, no. And I'm going, just talk to my cardiologist. Is he? Oh no, I don't need to call him, you don't tell me how to doctor. So that was the start of the gaslighting. I ended up being referred to the the heart hospital here in Lisbon. It's about a couple of hours away, where I spent a month.

SPEAKER_01 11:30

In the hospital?

SPEAKER_00 11:31

In the hospital. Every test under the sun for a month, they stabilized me. They told me I needed an unroofing surgery, and that was the first time I heard the term unroofing, and that was here in Portugal. So I'm thinking, okay, this is not good. 48 years old, and basically we're talking heart surgery. So I was pretty scared at the time, and they the team sort of met, and then they came back and went, unfortunately, none of the doctors want to take the risk on unroofing you. None of them have the experience of doing it. Theoretically, they know what to do, practically, none of them want to touch you. They believe that it was a 50-50 chance of me getting off the table, and as we found out later, that these sort of countries in Europe require good statistics from the European Union to get their medical funding through. So they didn't want to have a guy like me who was a European citizen that was only a resident here taking up those resources. So they basically signed me off as fine and kicked me out. I ended up going back home. Meanwhile, for that month, my partner Kim was came across the Facebook group and had been talking to the admins there and doing a lot of the research. I wasn't in a particularly good way in the beginning, so I wasn't really that focused on the research. I was just trying to keep myself alive, essentially. That was my sort of motivation was day to day. I got back home and within a day I was back at the local ER again. With them going, look, you know, from what we've read on your records, there's nothing we can do for you. You're a Swedish citizen. We suggest that you go to Sweden and see if they can do anything for you because the medication's not working for you. We're we're sort of keep upping it and upping it, and you're not really getting any relief. So we just decided on the spur of the moment to pack up the cats, jump in the car, and we drove to Sweden. Took us four and a half days to drive from Portugal up to Sweden. I was doing some of the driving where I could when I was feeling okay, and when I wasn't, I was just sleeping. We made it to Sweden and we got to a hospital in Stockholm and then just got gaslighted by the head of cardiology with the whole story that we all hear that bridges don't cause symptoms and they're benign, and I've been doing this for 30 years and I know it all about it. He wanted to put some sort of pacing device in my chest, and from what Kim had learned just from the bridge page, that wasn't going to happen, so we just refused. I spent a week there, and with that through the page, we heard about Dr. Niger in the UK with his dobutamine calf test. And basically, we weren't getting any traction seeing GPs or anything like that. By that point, I was on oxycodin. The pain, the attacks were intense. Cold sweats, excruciating pain, couldn't breathe, just felt like I was going to die for two hours. And even in Sweden, I was, you know, going in by ambulance and just being booted out after a day because the standard tests were coming back normal. So we we took two days and we drove down to the UK. We'd booked a consult with Niger. It took about two weeks and I went to Hammersmith Hospital there and had the test done. Nigel was good, he he understood that the bridge was an issue, but when he wrote his report, it didn't really translate to what he was saying to me. We found out later that he said that he didn't want to put anything in writing because he had his own reputation to think about in the profession. And even though he was one of three guys that actually invented the dobutamin CAF to check that it was symptomatic, it wasn't very well accepted within the medical industry for just being symptomatic. So he had to be very careful how he worded reports, and it basically sounded like I was pushing for an operation when basically he was saying, No, you need one. So once I had that though, you know, I had a very low IFR, I think it was 0.6, and it was clearly milking. He estimated it to be about six and a half centimetres after the cath. Couldn't get a surgeon in the UK. I was going in and out of coronary care units at the local hospital in Sussex because I was having these massive attacks. The head of the coronary care was pushing Niger to get me to have an unroofing surgery. But because I wasn't a citizen, I wasn't covered under the NHS. And the two doctors that were capable of doing it, both being Italian, funnily enough, that were working there, weren't prepared to do the surgery without the NHS insurance. I've been in the UK for about four months at that point.

SPEAKER_01 16:15

I was just gonna say, you've gotten yourself from Portugal to Sweden, ineffectively in Sweden to the UK, where you are properly diagnosed again with confirmation and again dismissed because now you don't have the proper insurance and nobody wants to take that risk without the insurance.

SPEAKER_00 16:37

Yeah, pretty much. And you know, even the the head of coronary care unit where I was at Concord in Sussex, he was saying I needed this surgery, and basically calling it a widow maker, basically telling me it wasn't going to get better, and basically, yeah, get back to Sweden again. So we made the choice to drive back again after four months in the UK. And mind you, all this is out of pocket. This is all, you know, our savings just emptying out the door. So we got up to Sweden, but this time when I got up to another hospital, a bit more of a larger one in Stockholm, I was armed with research papers, everything I needed, plus the Niger report for Dobutamin Cat showing that the bridge was symptomatic. And luckily, the head of the coronary department there, FEMA, funnily enough, quite young in her 40s, read it all and was like, wow, we learnt about these in university, they're meant to be benign. This is amazing, didn't even know this research was there. You know, I've produced things from 30 years ago from the start of the research to the most current stuff. She took the time to read it, came back and went, Oh, we have a surgeon here in Sweden that does this. So I'm thinking, unreal, this is great. Turns out it retired 12 years ago or 14 years ago now, and he didn't teach anyone else. And they were sort of going, Oh, well, you could go down to a university hospital in the south and they might be able to help you. But then they referred me to a place called Karolinska, which is like the Scandinavian premier teaching hospital in Scandinavia, which is meant to be the best of the best. And the surgeons all got together, and the same thing that happened in Portugal, none of them wanted to risk it. You know, these are guys that, you know, do bypasses and replace valves and they're the top of their game. And even though, like I said, it's a fairly straightforward procedure, none of them had done it, and none of them wanted to take the risk. So back to square one. By this point, I was having attacks every nearly every day. I was at the top end of my medication. And we threw another member on the page, we got in touch with uh a surgeon in Pakistan that he had used and had been successful, Dr. Takir Akbar. He worked in the NHS in the UK for 30 years, top of his field, as an associate professor in cardiothoracic surgery. He teaches in universities in the UK as well as Pakistan, and he's been unroofing for now nearly 13 years. He's done about 100 procedures on this and been very successful. So we got a hold of him, got his number and booked an appointment and paid our 50 euros and sent him the video that we had of the CTs and uh everything else and reports. And I remember sending it to him one day, and he rang me that afternoon. And I was on the highway, and we had to pull over and have a WhatsApp chat with him video, and he basically turned around to me. I'll never forget, he said, basically, he says, You've got months before this thing kills you. He says, if it doesn't kill you, the medication will. He says, You're at the top end of all the medication, and he says, and that's hurting your liver and your kidneys. So if you if this doesn't kill you, you'll get renal failure and that'll kill you. You need to get here now. And that scared the crap out of me, to be honest. You know, it's it's one thing knowing you've got a bridge that can possibly kill you from the research, but being told that the medication's poisoning you at those levels, that was that was a bit of a freak out. So he sent all the appropriate paperwork through, we got visas through immigration, and within about 12 days, we're on a flight to Pakistan. Knowing full well that there was attempts on Imran Khan's life at the time, the old cricket boy, who was the president for corruption, you know, meant to be the terrorist capital of the world, but realistically, it was our only option of actually coming across a surgeon that could actually do the work properly and have the experience. I spent a little bit of time checking him out and his references, and he was who he said he claimed to be. So at the end of the day, you're going in for a heart surgery, so you really got to check out your surgeon.

SPEAKER_01 20:51

Yeah, you're doing it in such an unfamiliar space, a really, really foreign country, even though you're Australian, Swedish citizen, Portugal resident, ending up in Pakistan for his surgery. But my goodness, what a journey. And and to finally find somebody at the end of your rope, you were basically in trouble.

SPEAKER_00 21:17

Big trouble. And I didn't really think about that part of it at the time. It was more, I really need to get this surgery as quick as I can. I'm just tired of munching oxycodeine and painkillers and everything else, trying to control a situation that's beyond my control and being in so much pain. So we flew in on the second in the evening, went straight to a place called Medicaid, private hospital, hospital in his lumberbutt, and by midday the next day I was in surgery. So obviously, I had additional tests, you know, more endoscopes, which are you know the ones that are I don't know in America. Here, you don't get anesthetic and you don't get put out, so you spend the whole time choking and vomiting while they're they're down in your chest, so they're not much fun at all. X-rays, CTs. So I had a all the tests redone when I got from five o'clock in the afternoon. I think it was on a on a Monday and and all the way up until 11 o'clock on the Tuesday, and then they wheeled me in at about 12:30 into the the operating room.

SPEAKER_01 22:26

And I want to have you address something because when we spoke earlier, one of the things that you said that really struck me was you get to Pakistan and externally the facades, the buildings, the town are everything everything that you expected. It was it was a little rough.

SPEAKER_00 22:44

Yeah, it's uh you know, you you can still see the blast holes from the wars that it's had there in some of the old town. A lot a lot of it's been rebuilt, so it's very modern these days. But when you come out of the airport, you sort of come through the old section and it it just looks like war-torn. Uh the military still has a very heavy prep presence there. You know, I remember on the way out after the surgery seeing uh an armoured personnel carrier with a guy clasping onto a 50-cal machine gun on the top in full military gear near the airport, and that sort of freaked me out a little bit. And your general police are carrying automatic weapons and they look like you know paramilitary. So that's a little bit scary from that point of view because I'd seen it before, like being through Indonesia and stuff like that. They're very similar, but I guess you know, you've got all this sort of propaganda in the back of your mind from what Western sort of media tells you about Pakistan. I can tell you right now, the people are lovely, it's very safe, it is a Muslim country, and it's sort of nice in a way because there is no drinking, so there's no alcohol abuse or drunk cards running around or anything like that. You do stand out a bit because you're white, of course, but people are very lovely and very helpful, and they'll go out of their way to help you. I never once felt threatened or worried being in Pakistan. We're walking around during the day, not a problem, taking you know Uber rides here and there and and you know, doing other things after the surgery. So even Kim was saying, you know, of course you didn't walk around at night when when I was able to, we went out and walked around. But you know, being female is a little bit different when you're in a Muslim country. So, but it wasn't the scary place that I'd been led to believe with the media. And you had quite a when you got to the inside of the hospital in terms of the the hospital was fairly new, it was like a four-story building, quite a new building, and I had a VIP VIP room, which was you know, it was massive, you know, it had a full dining table in it, and a big lounge, and big screen TV, and a hospital bed into one corner. And this thing was huge, it was the size of a small apartment. So, you know, the service and level of care was spectacular. But yeah, I was worried, you know. I didn't know what I was expecting, and when they wheeled me into the theatre, it was state-of-the-art, but it really did calm me down straight away, all those nerves sort of creeping in of basically, you know, am I coming into some sort of third world type theater with old instruments, valve machines and stuff? No, it wasn't. It was all L C D LED lighting, it was like anything you probably see on, I don't know, a show like The Residents or something like that, you know, and it really did calm me right down because I was like, okay, uh, this is legit. So no, the the care was really, really good.

SPEAKER_01 25:36

And part of part of the decision is not only is this somebody who will do the unroofing procedure, which you were struggling to find anywhere in Europe, but now you're you're broke, you've been bleeding cash. You had to find a way to pay for this as well. And I think that's an important part of this story, is that it's significantly less expensive having it done in Pakistan. You've got your airfare there and your your hotel expense, but the surgery itself is night and day by comparison to anything uh anywhere else that we've heard of.

SPEAKER_00 26:13

Yeah, it cost me, I think it was all up with the additional medications and stuff that I needed, about 1.4 million Pakistan rupages. It was around 4,500 euros. So quite inexpensive for a full open heart surgery.

SPEAKER_01 26:33

And you're here telling us the story, which means it was productive and it was successful. And this was in December of 2022, correct?

SPEAKER_00 26:45

Yeah, yeah, that was third of Denver.

SPEAKER_01 26:48

Amazing. And so you you get out, you get home, you heal your sternotomy. How are you today?

SPEAKER_00 26:57

Yeah, pretty good. You know, still uh I had a few new cling factors afterwards. I had turns out I had an allergic reaction to the sternal wires. Had one snap on me actually on the top of my sternum that sort of I could feel it sticking through, being a bit pointy. So I ended up getting a chest x-ray telling the cardiothoracic team that, you know, I'm still in quite a lot of pain six months after. My partner's a physio, so after three months, she wasn't giving me much slack as far as uh cardiac rehab was concerned, and basically telling me that I shouldn't be in this pain and you shouldn't need medication, and I should all be good. And it was causing a lot of problems. And we end up going to another hospital, you know, uh cardiothoracic in Lisbon, because there's a number of them there, and I saw the team there, and they went, Oh, a lot of people have allergies to the wires, and they took some x-rays and they went, Yep, we can see the inflammation there, you're one of the unlucky ones. And I'm like, going, these are titanium wires, apparently, is what I was told was going to go in. I they actually put in surgical steel at the time because for whatever reason the the surgeon made that call, and obviously there's nickel in those, so that was I've I've got a looks like I've got a bit of a nickel allergy, and the whole thing was just inflamed the entire time. So, as much as this the initial symptoms from the bridge had all stopped, must have had really intense pain on the surgical site. So almost a year to the day, last year, the year before last, 2023, in December, I had all the wires out. Uh, they consider it outpatient, you stay in for a couple of days, but and you still go under for it. But they found that there was no malunion. I was getting a clicking, which is really unusual. I thought the actual sternum was actually moving. And it turns out that you know because they're cutting through all tendons through the chest and the muscle, and when they spread you apart with the spreaders, you'll stretch tendons out. So the clicking you actually sometimes hear in the first three to six months is actually the tendons clicking around and it's not your chest, but it gives you a thud and an echo in your chest that you feel like it's a malunion and it's moving around, but it actually isn't. So, you know, they did the tests, and you know, they get and they push your chest, they go, didn't move, fused.

SPEAKER_01 29:12

Um, that's good news.

SPEAKER_00 29:14

Good news, and they you know, obviously, after a break, the actual join is stronger than the original bone it was before because the way it fuses. So that was all great. Unfortunately, the duty nurse that released me got the dates wrong, and my staples and sutures stayed in a week and a half longer than they should have, and they all closed over. So I spent boxing day that year back in a surgery, back in an AR department with a cardiac thoracic surgeon cutting into my flesh to get these uh staples and sutures out with no anesthetic, which was probably a boxing day I won't forget in a hurry.

SPEAKER_01 29:52

Well, and and I'm sure you were happy to tell Kim, see, there was something wrong. There really was something wrong.

SPEAKER_00 29:59

Yeah, we let's let that one slide. I it's it's a bit fantastic subject in this household, but at the end of the day, the reality is how serious I got so quickly without Kim, you know, and being a part of the micardio bridge support group, getting all this information, talking to all these other members. I doubt I'd be here. For most people that you know get to the point of where it's really serious and you're having attacks all the time, you're in no frame of mind to think about even treatment. You're just living day to day, worried about the next attack and how you're going to get through it. And you know, without my partner, I wouldn't be Haya. You know, if she had not been around, I probably would have died in Portugal than a couple of years ago. You know, it was clear when I had the surgery, it was the biggest Dr. Takira had seen in his entire professional career of a myocardial bridge. It was over just over 10 centimetres long, it was five meters deep, and it went into the atrium. And he basically got it all out, resealed the atrium, unroofed it. But he was quite surprised on how large it actually was.

SPEAKER_01 31:14

Boy, are you fortunate in that you did get somebody who was familiar with the procedure? Because to your point of the other doctors having the uncertainty and not wanting to take the risk, probably worked to your advantage because they would have gotten into a whole bailiwick of problems that they weren't anticipating at all.

SPEAKER_00 31:32

And unfortunately, I've heard the horror stories out of the UK in the last couple of years with them only being half unroofed and still having the same problems. And you know, a sternotomy is not a fun thing to go through. You know, any open heart surgery isn't something you take lightly. So having to, you know, feasibly doing it again because it wasn't done properly in the first place through inexperience, I wouldn't recommend that for anyone.

SPEAKER_01 31:58

Yeah, as you're speaking to other people, and and I'm gonna guess that's your smoke detector going off your fire.

SPEAKER_00 32:02

Yeah, this is sorry, this is my carbon monoxide detector going by my fire. So I'm so I've got a window open, I should be okay.

SPEAKER_01 32:09

Either that or you have to replace your battery.

SPEAKER_00 32:12

Yeah, it might be that too.

SPEAKER_01 32:14

That's what it sounds like. So if anybody hears that little beeping, Steve is fine. It's not a uh it's not a pacemaker, it's not a not a uh a cardiac incident. You went through a lot, and and I say that both both emotionally, physically, and financially to get done what you did. There are other people in similar situations, and they're giving up or or they they just don't know what to do. What would you say to them?

SPEAKER_00 32:44

I think for a lot of people in that situation, financially it's crippling. You know, I didn't have private health insurance, I was covered under the European medical health scheme. But when you have countries that won't recognise the issue, they won't pay for other countries to fix you. That's the agreement here in Europe. But trying to get a country to actually authorize that to happen, virtually impossible. And that's where I was stuck. So we had sold a property and we had something left over, and that's sort of what got me able to do what I did. But it's not like we're flying around just spending money willy-nilly. You know, we're doing it on the cheap, you know, we're driving, we're staying in budget hotels. Well, you know, luckily the family had a property in the UK, so we didn't pay rent while we were there, but you still have to pay all the utilities and everything else, the food and the travel and the expense. And realistically, it probably set us back close to 50,000, I would expect, or up over that six-month period. And it's very easy because you're not watching it as much. You know, we were very lucky that we had, you know, a some finances behind us, but without that, it could have been a very different story. You know, I could have stayed in Portugal the whole time and come across Dr. Akbar, you know, without having to travel around and gone that way and probably saved a hell of a lot of money. But the reality is that when it's emergency, you know, you're sort of you're not you're basically trying to get things done and trying to find a solution. And it's frustrating when you're getting gaslighted and it's you know dealing with specialists that aren't really specialists, and that just the ego is so large that's what we had, guys that used to throw the journal articles back in my face and go, I don't need to read these. And you just you know, the restraint I I think I I needed to not get physical with some of these doctors, you know, they they just make you so irate. But realistically, I think one, you've got to be prepared to move. So you've got to prepare to travel. So if you're not getting the right answers, I try and be as supportive as I can on the page, but the reality is, is you know, look at the webpage for myocardial bridge. You have to read the research, you can't just sit there and keep asking the same questions that everyone's asked because the answers are there on the webpage of support group. There's there's an actual internet page for myocardial bridge.net. And I've spent time on there putting stuff together. You know, the the administrators have put research in there, frequently asked questions. So I think if you've been diagnosed, your first point, if you've found the support page, is go to the web page and read everything that's on there because a lot of your basic questions you can get answered within 30 minutes of reading frequently asked questions. And I think you need to arm yourself and you've got to become your own advocate. And you've got to understand that you know the information because everything there is actually research article generated and from people that have done it. So when you get a cardiologist that goes, oh no, no, I think it's a you need a bypass, or we'll put a stint in it, don't do that, or basically give you some sort of weird explanation of what's going on, or say it's GERD, you've got to just you can be polite to that cardiologist, but that's your red flag to go, no, this is the last time I'm paying you any money or giving you any of my insurance money, and go back to the page and find doctors in your country that actually understand this. You're just gonna get gaslighted and you're gonna start second guessing yourself, and then you're gonna be you know saying, Oh, but my doctor's saying this and my doctor's saying that. The reality is I think every since everyone got the so-called immunization, this particular condition has come to light. Like mine, my big event happened four months after my second shot. So prior to then, yes, I was having attacks, but what brought it all to a head, I'm pretty certain, is from that.

SPEAKER_01 36:59

And you're talking about the the the COVID vaccinations.

SPEAKER_00 37:02

Yeah, I didn't know if we could actually say that word because every time you put it on social media, you get shut down these days.

SPEAKER_01 37:07

So I think many of us would. My situation was similar. I had to have had my second shot, and I was asymptomatic all my life. Next thing you know, I'm not, and it was accelerated quickly.

SPEAKER_00 37:18

So that's right with me. So and I think realistically, with people like Dr. Takir Akbar in Pakistan, the he's not money driven. And I seem to think a lot of it is, unfortunately, in the States because of the health system that's there. But in other parts of the world, we do get universal health care and it is very good. And you really do start having doctors doctoring for doctors' sake for the benefit of people rather than a luxury lifestyle. Not to say that these doctors, you know, don't get paid, they do, but it's pertinent to the economy that they're in in their country. And the lovely thing about Dr. Hack is you do it in Pakistan under the Pakistan economy, a million and a half a million and a half Pakistan rupiah is a ton of money for Pakistanis. You know, this is like top-tier medical. But for us, with the conversion rates, it's affordable. And, you know, I say to a lot of people, I say, look, if while you're still working and you know this surgery is coming up, if you don't have the money, take a personal loan so you get the cash in your bank, then go and go get the surgery done there. Because, you know, realistically you can pay it back when you're still alive. But if you wait too long and you put yourself in a position where you can no longer work and this disease, essentially, you know, is taking over, it really limits your options. So, you know, a bit of forward planning can really save you a lot of drama. And speaking to the right cardiothoracic surgeons, especially, is the key point. I still feel a lot of cardiologists understand that the bridge can be symptomatic, but will put you through a myriad of unnecessary testing that you'll pay for through your premiums just so they can get their end and meanwhile prolong the problem. And you know, for us, it was talking to a surgeon who had done this that fast-tracked everything. Prior to that, it was just yes, we understand, no, we can't do anything, but we will put you through a myriad of tests and charge you for it. And I just feel that that's just a waste of time and energy, you know. I think once you've got a bridge, you know, shortness of breath, chest pain, shoulder pain, back pain, pins and needles in the hands and the legs, pain in your jaw, you know, all your classic myocardial infarction signs, and you're going to the EAR and they're going, Yeah, ECG's the same, and the AKG's fine, and we've got everything's normal. This is your cue to go right. This is the bridge, because the bridges don't show up on these tests. So if basically they're saying, yeah, your troponids haven't risen, you're basically fine, it's all in your head. This is that at that point, you need to go right, need to find a surgeon.

SPEAKER_01 40:07

I think that is exactly the classic routine that so many people go through, to the point of, wow, now I'm not sure. No, no. That's not not sure. That's confirmation to move forward and get something done.

SPEAKER_00 40:22

Yeah, go see a surgeon as quick as you can. That's basically there's a list of surgeons and specialist cardiologists on the website. Check them out. If they're not in your state or in your country, travel. Don't put up with specialists that say they know, because all that's happened is you're just going to be delayed and the symptoms are just going to get worse. And you're going to end up taking medication that you really shouldn't be taking. You know, a lot of the medication is contraindicative to bridges, especially like for some people, nitro doesn't work for me. You know, fast-acting nitro is great for basospasms, get massive headaches from it, still use it occasionally now. But actually, nitrode patches or nitrode tablets are they're the worst things. But for some people it works, some people it doesn't. But don't wait. Don't don't waste time on this dealing with specialists that want to do another CT or you know, want to do an ANGO without doing a dobutamine cath. It's just basically I I've had my fifth angio two weeks ago to check my some of my sort of you know symptoms that still exist out and they're painful. And you forget, you know, I've had five in five years, and I sort of went in there talking to my partner, Kim, going, Oh yeah, I'll be fine. I've had plenty of these, you know, and I'll be in and out. And actually getting it done, I was like, oh God, I forgot how much these things hurt, you know. So if anyone's ever had one, they know what I'm talking about, you know, and your arm, you can't use it for days afterwards. I forgot all about that. Yeah, don't hesitate. I think that's the worst thing you can do for yourself.

SPEAKER_01 41:55

Oh, and that self-advocacy, we see it all the time. You have to advocate for yourself because there's so much confusion in this particular situation. I'm pleased to say I think it's becoming a little more familiar. Too slowly, though, for too many people. And certainly, in my opinion, and every doctor we've spoken with, these could cause sudden cardiac death.

SPEAKER_00 42:19

And if you, you know, for me, I'm sort of fairly young, and luckily I didn't have any buildup in my arteries and things like that. But a lot of people have heart conditions already with these on top, so you know, really the urgency has to be a lot greater because you know, these things can generate clots, these things can give you strokes, these things can create a myriad of other problems in your body. And you know, it's starting this is starting to be noticed now. I was lucky, but the TO I had the uh transit ischemic attack I had, that was a bit of plaque breaking off at the bend at the start of the actual the bridge. And that's the only place I had plaque in my heart was at it's it's quite normal as it kinks off to the side, you get to build up a plaque in there, and that's what set it off for me. And I can tell you, having essentially a stroke, it's not fun at all, you know, not painful, but the fact that you can't speak, can't move, and you can't, you know, communicate, I mean you lose that sense of you know using your mouth and speaking, it's a scary, scary thing. And to be honest, it's gonna get worse. You know, if you're getting symptoms and you're getting pain in your chest and you've got shortness of breath and you're getting vertigo, and you know, it's really affecting your life, and you can't sleep properly, you can't sleep on your side, you can't sleep on your back because you feel like you've got to suffocate, it's already begun. It's not getting better for the majority of people, it doesn't, it just gets worse over time. Mine was very rapid for other people that can move slowly, but I don't know anyone that's even on medication now that's managing it. Even the comments I'm reading today, people are still saying it's getting worse. It's getting more regular, you know. I'm managing, but I can't exercise anymore, and I have to go to part-time and I'm not sleeping well. And the reality is that it doesn't get better until it's fixed.

SPEAKER_01 44:12

So and you yours wasn't a perfect recovery. You're you're not 100% today. Tell us just a little bit about your symptoms today, and would you do it again?

SPEAKER_00 44:27

Yeah, so basically after I had the wires out, of course, I I was fine for a few months, and then my heart rate jumped up to 230 beats per minute, just out of nowhere. And I had my little finger, you know, motor on and I got my video out and I'm recording it, going, This just can't be right. You know, I'm puffing and I'm short of breath and I'm not feeling good. And I remember going to my local GP and I'm going, oh, you know, I'm showing the video, and he thought he was looking at the oxygen saturation, and he's going, I'm going, no, that's the beats per minute. And he's just like, okay. He's going, that's SVT, superventricular tachycardia. That can kill you. And I'm like, okay. So yes, I have that. I was still getting a bit dizzy and short of breath from time to time. Just out of the blue, saw a uh electrophysiologist, and they are a cardiologist that specialise in the electrical impulses in your heart. Wore a halter last March for a week, picked up a narria, and they're no fun either when you have one of them. But it's very intermittent, it doesn't happen very often. It only happened once in the seven days. So I now I take Nebivolol, uh beta blocker. They're five milligrams, but I halved them. I take a half of that, so in the morning. I take a 30 milligram calcium channel blocker, that basically just keeps my arteries open nice. These per minute are down low, usually under the 100 quite comfortably, control the uh SVT. So, and I was still getting dizziness and shortness of breath, just occasionally, usually while driving. And it turns out that when you're driving, you there's a little bit of stress, even though I've been driving the best part of my life. You concentrate, and you know, out here in Portugal, I don't tend to stay on their side of the road. So there's a little bit of stress driving in the countryside here. So I was having these little bit of attacks, uh dizzy, really fighting to stay consciousness and getting a bit of shorter breath. So I had an angiogram two weeks ago and that checked everything out. So anatomically, everything is fine. But what the electrophysiologist said and the head cardiologists here are saying that basically once you cut into the heart, you cut through those neural pathways, electrical pathways, there's going to be something. And that's the reality of open heart surgery. And that's, you know, from getting a bypass to getting a valve done, essentially, once a blood goes into your heart, they're they say they're about 75% aware of the electrical anatomy of the heart. They're not quite fully mapped it yet. So they understand that basically, you know, with heart surgeries, the likelihood of getting, you know, some sort of attachia is pretty normal. And what finding is that basically they feel that after the heart surgery, even though the surgery site's fine, it's still unroofed, everything is working fine, all my vessels are clear, I don't have any narrowed arteries, I don't have endelial dysfunction, there's still a problem with a vasospasm going on in there. They believe it's coming from a section of the heart around where the surgery site was, not from the site itself. And it's to do with the electrical pathways properly from the arrhythmia. So this is what's happening. It can, you know, under stress, I can get this happening, and basically I can just manage it with an extra calcium channel blocker, and it just passes in about 10 minutes. So that's where I am today. But I do heavy work. I I've got a big block here in the countryside.

SPEAKER_01 47:54

I've seen you have I seen you welding fences on your property?

SPEAKER_00 47:58

I've got all sorts of stuff. Yeah, you know, I've I've got a 3,000 square meter block. I hand mow that with a you know a petrol mower, you know, that takes you know half a day of constant walking around and it's on a hill. So, you know, you know, I'm pruning olive trees, you know, fruit trees, I build things, construct fences, put in driveways. My G Kim does the driveway work, she's good at that with her little spade. But yeah, no, I'm able to do that. The the thing that you come out with is that you you can get a bit of fatigue, I found as well. So I don't well, I'm older too. I don't have the energy of a 20-year-old, and that that's the problem. My brain's 20, my body's 50. So you've got to obviously try and manage your energy. But my energy's returned, I can do heavy work, but it's obviously a bit more limited. I do try and exercise as much as I can and walk and you know, waiting for the springtime to start riding my bike again and stuff like that. But yeah, I would recommend it to anyone, you know, I think realistically, compared to my quality of life before, where essentially I was spending more time in hospitals than I was in my own house, and just laid up. And you know, I when I was at home prior to the surgery, I was having problem walking from the bathroom to my bedroom without being puffed out, and it was just no quality of life. And you, you know, I was lucky that I got the surgery before I was bedridden because that's where I was heading. So I I think realistically, I I don't know anyone who's had a proper full unroofing that would say they wouldn't do it again. I understand people have been half unroofed and you know they're going, it didn't really work for me, but you've got to keep that in mind that if the surgeon doesn't unroof it properly, you only need a centimetre of that or less that's still not unroofed and the symptoms will remain. And I think that's what the you know the research is going now is that you've got to unroof the entire thing. So I think you've also got to be careful around robotic surgery as well, because from what I'm reading and what I've heard from people who have had it, you know, if they don't unroof it properly because they don't have access, you've got to be wary of that as well. And something to keep in mind. And yes, sternotomy is pretty invasive, you know, they do open you up like a crab, but at the same time, you know, that's full access. You know, I was on bypass, I got pump head for six months, you know. I had the worst memory you've ever seen, you know, caused countless arguments with us, you know, to the point where my partner almost left me because I was adamant that I could remember and I couldn't remember anything. And beware of statins, they do that to you as well. I don't take statins. Too much research on them as well. So, you know, you're always gonna have that little bit of a downside, but I I think you've got to do it and not wait. Do whatever you need to do because I think the alternative is just gonna you get to a point where you're stuck, and then suddenly you don't have those resources at your disposal to be able to count on to get it fixed. So, you know, I know people have gone to Greece, great, if that's what you want to do and go spend 50,000 euros, be my guest. But Pakistan's the top of my list, and we've even discussed it here that if I ever needed another surgery, I'd go straight back to Pakistan. I wouldn't even think about it, you know. But I was like everyone, you know, when you're looking at the cost of it and they're going, oh, it's you know, five, six thousand dollars to get an open heart surgery, your natural instinct is to go, am I gonna lose a kidney while I'm down there? You know, and you there's those sort of things go through your mind. Luckily it was legit, but you know, realistically, if you've got to pay, you've got to pay. And I think the quicker you accept that the better. That's that's my recommendation.

SPEAKER_01 51:32

Well, and you've you've now given us the example. You are a living example of it, you've done it, and there are people in similar situations where it is their last resort. They are not going to get unroofed in any other way unless they do this. And the consequences of not getting unroofed, we know, could be dire. So I think it's important that we've now explained and shared, and you've demonstrated. Here we are speaking with you, somebody who's done it, what an amazing amount of courage to say, I don't have an option, I'm gonna do it, and here we go. And you know, the the path and the circuitous route you took to get to where you I mean, literally you took it because you drove most of it to end up where you needed to end up, although of course you flew to Pakistan. But everybody's journey is different. And you explaining yours to an end result that is more than satisfactory is something I think so many people need to hear. And it's that we all know we get to that point of desperation of am I gonna live here? This thing is gonna kill me. It's it's horrible. Nobody's giving me the proper diagnosis. And the answer is do not give up, keep going. There's a solution someplace for everybody. And I think you've given us one now that we really haven't talked about much. And I I can't tell you how much I appreciate you sharing that story for the benefit of all those people who now, including those people who are in the Middle East, where it's a different story for them. It's easier and access is a lot easier. So Steve, thank you so much from the bottom of my imperfect heart for sharing the story and for your time today. Thank you for listening to Imperfect Heart. It's my hope that this information helped in some way to improve your situation or will help you better understand this condition. More importantly, that it gives you hope through stories that there is help and you most certainly are not alone. If you've been diagnosed with a myocardial bridge, please be sure to join the private Facebook group Myocardial Bridge Support Group. For more information about our program or to reach me directly, visit the website myimperfectheart.com. If you like what you heard today, please give a positive review, thumbs up, high five, whatever your app likes. And be sure to share with everyone important to you so they understand what it is you're dealing with. Please subscribe as well. Welcome each day with gratitude and positivity. The views and opinions expressed in this program are solely those of the host and the guest and are not intended to provide, nor are they a suitable substitute for professional care by a doctor, therapist, mental health professional, or other qualified medical professionals. Imperfect Heart is a production of Hear Me Now Studio.