POST OP

[Thegamer03]

Hi im 19 I'm now 3 days post op I had an ep study and catheter ablation.I had to spend 2hrs in recovery due to the fact I kept on stopping breathing, was foaming at mouth shaking and my blood pressure was extremly low, I had to spend 3hrs on oxygen due to the fact I kept stopping breathing. After I was okay and returned back to the ward, I was kept in overnight as my blood pressure wasn't coming up properly, just before discharge the surgeon came to see me he said I was one the easiest to trigger into svt as withing 10mins of starting I went into svt, they then spent just over an hour trinna slow the svt down enough to get better reading of where to ablate and my ablation took just over 30mins, he said he found the extra pathway that was running across and straight down the middle my heart so they manage to complete the ablation but then he said we did find somthing else.

Immediately I was like what and he said during the ep after the ablation we have found somthing that unfortunately you may need to have a pacemaker I was in shock as they said if needed they do want to avoid me needing a pace maker due to my age. He explained there is no wonder why all my life I have struggled with palputations and he admitted he felt sorry for me because its clear I have had it since birth and it must of been causing me alot of issues I said yes I get daily palputations but I thought I was just normal and tried to move on but it's been hard since I first went into svt july 9th 2022 it was 223bpm my worst what I needed adenosine was feb 2023 at 273bpm between 2022 and 2023 I had to be admitted to resus over 15 times with svt and had adenosine 6 of them times, he said he feels for me especially at my age and haveing theses problems is especially hard as he can understand why and how much I have had to miss out on because of both the svt and palputations, the reason it wasn't seen as a kid dispite haveing a echo when a toddler as my mam has balcubus aortic valve disease with the faulty valve she is goin to need replaced liking in the next 5-10yrs as signs have started to show its becoming an issue, but growing up they didn't see nothing and blamed it on anxiety and panic attacks but first mention of beta blockers I was 5 then again at 8 but I wasn't actually put on them till I was 16, but yeah he's concerned as the ep showed this extra problem that he noticed how somtimes ramdomly my hr would drop rather low but then go back to a normal rlythem and spike but drop back down multiple times he saw it happen and so now unfortunately monday 15th which means I be 7 days post op I am haveing to have an echo done and from there hopefully know what it is.

I nearly cried when he told me the svt was sorted and they couldn't trigger me in it after ablating because of what haveing it has taken from me I love being active and grew up being really sporty but then feel my hr being to fast and feel sick, I love swimming and it was the svt in Feb I rearlised I can't do swimming anymore as it was triggered the worst and its triggered just walking up the stairs as well as just standing up (I have pots) but the cardiologist believes the cause or main issue presenting as pots was actually the svt, since the ablation paracetamol and brufen wasn't helping take away any pain so been put on cocodamol, im struggling to walk without pain as they did the incision right in the corner crease of my privates and at the top so it was more the bottom my stomach/top my groin it was done and the brusing is already quite extensive and across my stomach and thigh, I have also been haveing the palputations ofc but he said I probs will still have them as the ablation couldn't resolve that and is another issue all together.

I'm wondering anyone else as I can't find no info anyone post procedure be rather gassy and feel kinda bloated, if I do too much like get up to use the bathroom I get a slight tightness for a sec in my chest/rib area like a stich, and atm I keep haveing quite long and bigger muscle spasms in my thigh, anyone else haveing anything similar.

Also as I'm only 19 I was wondering like any advice cuz its hard being 19 and then haveing these heart issues and not able to join in alot of what my mates do and what kinda helps reduce ur anxiety and reassure urself it's oaky because I think it doesn't help then my anxiety being like oh watch doing this incase ur heart plays up or we pass out ect ect like im trinna navigate alot as I have various other health issues as well as struggle with mental health and those who need or have a pacemaker fitted whats it like and how did u cope with then finding out its sonthing u may or u will need?

Thanks sorry for long post just alot yk and need to let it all out to those who understand as my mam don't she gets the anxiety around her heart problem too but I have also had to have the surgery before and at a younger age then her so she's even admitted she can't understand the struggles I have and what it feels like to then have these paluputations or svt as hers she doesn't actually feel the symptoms as such it's only cuz her regular scans we found out its started getting worse and now she's gonna need the surgery atleast they think within the next 10yrs so knowing that to its kinda heart as hers is way more major surgery and open heart but she says that what I deal with on the daily is just as bad as the open heart because she feels bad mines constantly worry and daily struggle and she's only now haveing to be cautious but hasn't had the worry of the op or anything for the past 45yrs so yh

[Deejay62]

Wow I can relate to everything you’re saying regarding your condition. In a way yours has been dealt with a lot earlier than mine. I was 43 and went into heart failure before I was even taken seriously, and had my first ablation at 44, and 3 more after that. They also discovered I had another heart defect. I felt it was normal too, growing up.

In the end I ended up with an AVnode ablation and a pacemaker. I have managed to reach 63 yrs old. Things have improved a lot and they know a lot more about the heart and its various functions, electrical wiring etc.

But although I can relate to your journey so far, we are all different and some of us have different things going on with our hearts and we deal with our diagnoses differently. I can’t help you with your symptoms now but maybe you can speak to one of our BHF nurses, also ask about support groups for people your age. 0808 802 1234

All the best

[Thegamer03 in reply to Deejay62]

Oh wow I'm sorry it took so long I'm glad it's sorted now and fair play, the reason mines was only caught so young dispite complaining as a child was because I was inpatient in general because of my mh and as a care kid social care had no place that would take me cuz my risk, so I was stuck on amu ward in general from 16/5/22 till 7/10/22 and thankfully on the 9th I was allowed leave to go to my local pride event as the hospital knew I find a way of escaping the hospital to go lol so they just agreed as long as I pick up their phone call every 2hrs and was back by 7pm, so yh I went to it and had an amazing day it was my first pride I did the march then went to the main event whilst there I felt a bit weird I thought maybe panic attack/anxiety and excitement of being at pride so I tried all I could to calm it and it didn't work so I rang the ward and told them how I felt they asked if I had ate food yet (it was like 1pm) and drank some fluids (I don't rember to eat or drink lol) I said no and they said it's possible it's my blood sugars and I stupidly forgot my blood glucose machine so I was like yh probs went and ate and chill out and drank a bunch of fluids, waititng a while 2hrs or so passed still felt the same way rang the ward and told them they said okay well try take it easy if it continues come back earlier (I didnt want to lol so just carried on until like 6pm) it was at its worst I felt sick paint and felt like my heart was in my throat so wen back to the ward arrived back with my mate all dressed up and nurses asked how was it I said amazing however I still don't feel well I described the feeling the nurse felt my pulse and immediately told me to go to be room and sit on the bed they gonna get obs machine, so first obs machine said hr 223bpm and blood pressure 85/50 she was like nah that can't be right so used another machine and it said complete opposite my hr was in the low 60s blood pressure really high, so she got a third one and that said the same as the first thats when alarmbells rang, she did manual obs and told me to lay down take deep breaths she's gonna get the nurs in charge they both come in and said they need to do blood and and ecg I said okay cuz well I had ecgs before so I thanked my mate for a great day and said he may wanna go home as ik she don't like needles especially and when the nurs le brought the tray in for bloods he was like yh imma go thanks I will message later I was like cool np, I clearly didn't seem phased by what was goin on as laughing makeing jokes and the nurses was like rushing around me, they took bloods and got me on and ecg then instantly they said we gonna need some more help they kept asking if I had taken anything or drank and ik I hadn't but clearly they didn't belive me as they kept saying its okay if u did we just need to know how to help u so yh I still denied it cuz ik I didn't and they called cardiology down, I was so comfused and like this is strange but okay, no one was telling me what was going on cuz they didn't want me to panic next thing I know one the nurses after I was put on cardiac monitor and a drip nothing was changing dispite me now lead down chilling, the nurse shouted for the crash trolly I was like hang on wait what why do we need that? The nurses then was discussing about it and I over heard them say about needing adenosine (I'm autistic and my special interest are loads medical stuff so I recognised the name of it) I then said hang on am I in svt and ur gonna shock my heart they all just looked gobsmacked and was like how do u know this I explained I watched documentary a few weeks prior about someone needing this cuz of svt, they then was like okay yh so we was trinna avoid worrying u but u clearly know what's goin on I said yh so they explained their plan to attach me to crash cart and give me the medication and shock me I then said as long it's gonna stop this cuz I feel sick do what's needed, they got the medication and pads ready one nurse put one on my front and the other nurse fully like slapped it on my back it was so cold I jumped out my skin and loose consciousness for a few seconds and regain just as I hear the cardiologist shout code, and just as more staff ran over I just open my eyes in shock and go I can't feel my heart anymore, everyone was in disbelief my hr had dropped from 223 to basically near cardiac arrest and as I woke up it was at a steady 84, thats when the bloods had come back and turns out they drug tested me as I had been to pride and my bloods was clear and yh spent the next 3 days on a drip and cardiac monitor which on the second day it happend again but resolved after and hour or 2 and doing some things to stop it which showed it defo wasn't drug related, on the 3rd day cardiologist came to see me and said so I have somthing called svt and yh imma start on beat blockers I was like okay cool he asked any question so I said yh do I have pots he was comfused I explained for years I have had it I stand up and go all dizzy and have fainted from it but my drs refused to listen he asked why did I think that I explained how cuz my instereast is medical stuff I learn about all differnt stuff but it's something that rly was a question of if I had it I said I can show u as its happend all the time whilst on the monitor so he said yeah okay then this whole time I was sat down and so i stood up like normal then the dizziness hit he said u alr as he saw me sawing and ran to grab me just incase I said I'm alr give it a min and he saw how my hr went from 78 to 100 104 124 and Peak was 157 and drop straight back down just as quickly he was stunned and said he need to tell my main cardiologist but yes it seems I have pots too and yh thats how it was caught but ik if I wasn't inpatient and able to go to the hospital that day then well in past with similar I just wait it out somtimes haveing the feeling for as long as 8hrs but drs never listened to me, so thankfully cuz I had to go back to hospital anyways as its where I was staying they managed to see it for themself and see I wasn't lying and it wasn't anxiety or panic attacks

[Deejay62 in reply to Thegamer03]

Wow that’s a story. I believe excitement and stress, not eating properly can bring it on, but the defect is already there from birth.

I am glad you managed to enjoy most of your day. It’s good you understand it. I didn’t until I was 15 and had to be put on a drip to stop it. After that the Gp would dish out beta blockers every time it caused me problems. At 15 they even sent me to see a shrink but I went once and never again.

Mostly I would wake up with it going off during the night. I often felt like I didn’t want to tell anyone in case they thought I was crazy. At 15 I was taught to massage and stop it etc.

it wasn’t until my 40s when I had the angiogram that they discovered it was a birth defect. It went off after the angiogram and I had 12 doctors staring at the machine and me, what seems like ages, whilst I sat on a bed pan trying to wee😂

I’m so glad things have changed and hopefully your life will be a lot easier than mine. Thanks so much for sharing. I hope you decided to speak to the nurse if you have questions.

[AspiringVet]

Hi there! I’m really sorry for the trouble you’re going through and seem to have been going through for most of your life. I’m 25, so feel I’m one of the younger ones on here too! I can relate in my own way to a lot of the things you’ve said.

I’ve had two ablations this year for a different type of arrhythmia. I’ve felt so unwell that I’ve had to suspend my time in Uni and haven’t been able to work or go on nights out or any of the other normal “25 year old things”. I’ve even had to move back home and feel I’ve lost all sense of myself. So I completely relate to the feeling that you have too much to deal with at such a young age and a sense of unfairness that you have to struggle to “keep up” with your friends and stay involved in the things they want to do.

I had an ICD put in a week after my first ablation. It was scary but at the same time it felt like a huge relief that I would have a safety net if the worst happened to me. From what you’ve described, it sounds as though they’re hoping your pacemaker will improve a lot of the leftover symptoms after your ablation? I hope you’re able to take solace in the prospect of eventually feeing better once the pacemaker is in there, allowing you to get back to all the fun and active things you’ve been missing out on. I know it’s really hard (and sometimes really annoying) to hear that you should just look on the bright side, but I hope you can do that some of the time and know that over time you’ll probably feel more positive about it.

I also have family members with heart conditions who I’ve been watching for a long time - we’ve had a couple of valve replacements, ablations, and cardioversions over the years. All of those people are in their 60s. I’ve had some minor issues with my heart for the past 5-6 years too but I always thought that because I was looking after myself and taking the meds from an early stage that I wouldn’t have any major problems until much later in life. So it completely took me by surprise this year. I have really struggled to accept what’s happening to me over the past few months and have had a lot of really really low points. I have been seeing a psychologist to try and untangle it all for myself and this is helping a lot. In case you’re not aware - there is a really strong link between having a heart condition and developing depression. I know you said you struggle with your mental health already so hopefully you can aim to be as proactive as possible about looking after it as you go through all this. What you’re experiencing is a huge lifetime challenge that the majority of people get to process when they’ve got a lot more years of experience under their belt than you or I. Please make sure you lean on your support system and expand it, if you need to. You may be able to ask the cardiologist to refer you to their psychologist also!

Anyway, sorry this has been so long and without many nuggets of wisdom. I just hoped that expressing my solidarity would be a tiny help. There is nobody going through exactly what you’re going through but there are a LOT of people who understand significant parts of how you feel. Everybody, young and old struggles with these diagnoses and procedures and recoveries and everything else that comes along with having a heart condition. I hope you can give yourself the time to process everything that’s happening to you and that your recovery goes well. Best of luck with everything!

[Thegamer03 in reply to AspiringVet]

Hay yeah its helped alot thanks because it's so hard like to find groups of people with same/similar heart problems as the groups I have looked into in my area is either those under 18 and been under cardiologist since they was born or the ones for over 18 but most of the people are in their 60s+ and only had the struggle and issues usually since their 40s or 50s so it's been hard because of being so young and haveing this from what is actually believe to be from birth but was never actually caught or I was always just told it was anxiety ect like I kinda feel misplaced and like kinda the odd one out because it's somthing the cardiologist who did my surgery was sorry for and shocked i was never believed and it had never been picked up for only getting worse as I got older which then someone who loved doing sports being active and always on the go haveing to watch all that slowly be taken from me I think has been the hardest part because I was doing all sorts from swim, dance, rugby, kickboxing and basketball but also wayy more seeing and feeling my body just not be able to do it and slowly like giving up has been hard even more so when as I had a dream from like 5yrs old to be in the police force as a dog handler I had planed it out how I was gonna get there and first thing was the cadets when I turned 15 and I got into the cadets and loved it till about a year in they got us to try the fitness test (bleep test) we had to get past levle 5.7 if we was actually to be in the police and so yh all started out well and in the past my highest was 9.2 so ik I had it easily or so I thought it started okay but by level 3 the fast heart beat started and the feeling off but I kept pushing then when I got to level 3.8 I collapsed, I was taken to hospital where they said oh its just ur asthma (I had asthma as a kid but grew out of it and didn't need inhalers after i turned 6) so I was kinda disappointed and just annoyed clearly it has come back, from there I started loosing hope in my dream to be in the police and more this started happening with I started haveing back and joint problems, gastro issues and then yh I rearlised I couldn't have the dream anymore as clearly my body couldn't cope and one thing after another loosing my ability to do most sports ect dispite pushing myself as much as possible over that time heart palputations become worse to then where it was daily skipped beats, breathlessness chest pain, feeling fatigue most days I get home from school and just sleep, I started fainting more ect and the doctors for the most part refused to listen or care but cuz I was adamant it wasnt normal I kept pushing and pushing slowly the diagnosis started happening from gastro issues, ibs, crps, left sided weakness, fnd and then chronic pain, july 2022 was the first ever time I got listened after day leave from hospital cuz mh went down hill and was admitted to general loads (didn't help i was a care kid and had been since I was 5) mh got so bad I then did things that put my life at risk and so then was admitted into general following my worst incident after being told I had bpd which to this day i still don't agree and thankfully mh team are gonna re asses as I don't show as someone with bpd more they think is bipolar, so yh cuz no care placement would take me due to risks but mh units wouldn't take me ip cuz I wasn't risky enough dispite the time in general everyday haveing incident from rather minor to more major and on the edge of life threatening I got leave for a day and come back feeling off but thought is was nothing cuz delt with similar all my life and was told it was nothing to then be told I had svt shortly after told I also had POTS to then feeling so lost as I didnt rly have friends couldn't be in collage cuz of risks and cuz I started haveing seizures due to a incident a few years prior that I was lucky to not be brain dead from but turns out there was some damage which I then was diagnosed with NES I just felt so lost and it just everyday felt like my body was giving up more and more and because I couldn't cope this it I tried stopping my suffering more and more, until 2023 I was put and settled into a somewhat okay placement or so I thought and yh didn't go to well, after turning 18 then discharged from camhs delt with adult mh team but moved to a better placement march this year since dispite the 2023 placement being bad and me not receiving support I just head to learn to adapt found my love more for the medical world especially when I was ip and from finding that love it gave me hope that I can work in health care so I had a dream again that dispite all my issues because all are more controlled now by lots of meds and various other things I rearlised I could work in healthcare dispite my issues because they are more controlled and yh gained more love and hope for life so the incidents lessen so much like 2022-2023 ur talking I had over 50 incidents to where in 2024 I have only had 3 I found my love for helping people so did some volunteering for SPUK but had to stop as waititng for an ankle of to fix my complet ruptured atfl ligament, but joined the nhs advanced cadets which I love and dispite my heart problem being my main issue atm the rest I learned to adapt to and learn my limits in September now I also have an ehcp I been accepted to do leave 2 health and social care which I cant wait for and septemeber 2025 been offered an internship at one the local hospital that is ran through a program specifically for those with learning disabilities, mh struggles and other health issues I am in a much better mental space I fell now dispite haveing my bad days and feeling lost because of my health issues one day maybe taking over again and me loosing everything I have worked endlessly to get and achieve I feel more then ever I have more power and a stronger drive to go where I want and try tackle any issues thrown at me, however this with my heart has been the biggest in a while because the svt being so bad it was covering up another problem they wouldn't of rearlised without the ep study and getting rid of the svt and its like I thought I have the procedure and my life would be wayyy easier again as then after the first svt was caught it seemed to be endless doing simple things like walking up stairs somtimes triggered it and I wouldn't be able to self resolve and have to go hospital and be put in resus like when the surgeon said the ablation was sucessful and they couldn't trigger it again I wanted to cry I was so relieved because I couldn't keep goin this it and nearly landed right back in the darkest place like before so they couldn't of done it at a better time honestly I was so happy thinking finally I can do things again and live and enjoy things and join my mates to go out and live, it was just as I was thinking finally it's over did then he said we found somthing else though more concerning that bascially the svt had been covering up it