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Anyone with Long QT Syndrome specifically?

Posted: Sun Jan 08, 2012 11:56 am
by azuritereaction
I realize there is a "disabilities" topic, but I was wondering if anyone specifically had Long QT Syndrome and if the game represented what it was like to have that accurately, as it's the protagonist's condition: figured it might merit a topic of its' own. If not, feel free to delete it, mods.

I have Mitral Valve Prolapse, but my specific condition/outcome with it (heart attack at 7 days old due to a blood clot that has no scientific reason to occur, no surgery/beta blockers/ace inhibitors afterwards ever, not currently taking any medicine, able to do sports etc. currently 26 years old) is apparently unique in the science world, but it's different than Long QT Syndrome in that it's basically almost uncurable at this point, but it's less severe/less risk of sudden death than Long QT Syndrome (which has more of a possibility to be cured than my specific setup).

I'm really interested in playing this game though just to see how it portrays heart disease in general even though I'm not generally into dating sims/novels, but yeah, anyone have Long QT Syndrome? Would be interesting to compare/contrast with my own condition as well.

Re: Anyone with Long QT Syndrome specifically?

Posted: Wed Jan 18, 2012 9:37 am
by panique
Signed up specifically so I could reply to this thread.

I don't have Long QT Syndrome (sorry), but like you, I have Mitral Valve Prolapse (as far as I can tell). I was never specifically told that it was that under that name, just that my mitral valve is leaky and that the blood regurgitates between the two left chambers. I only found out when I was 19, even though I was born with it, but I was told that I'll probably have surgery in the next 10-20 years to repair the valve, once the condition worsens and it's deemed necessary.

I just finished playing Rin's path, and the way Hisao faces his mortality at a few points during that path could be a little bit unnerving at times. I'm glad I don't suffer from something more serious like he does, at least.

Re: Anyone with Long QT Syndrome specifically?

Posted: Wed Jan 18, 2012 1:35 pm
by Char
My heart is rather messed up, no doubt, but I'm not really sure about the reason, it could be stress or heritage. The doc' didn't find anyting when he examined me, and I never went to check for a second opinion, so I was left with no possible explanation. This is just what I have guessed by reading some articles and stuff. From what I can tell though, it should not be too serious. Sure, some times the pain is excruciating, but I have never been knocked out by it, nor taken any medicine, so I guess it shouldn't be life-threatening.

If it's not a bother, I would really like to know how your problems affect you, how they materialize and the consequences. That could give me a better idea of what I might have, and if there is anything in particular that I should do.

Re: Anyone with Long QT Syndrome specifically?

Posted: Wed Jan 18, 2012 8:03 pm
by mtymidgetjr
Well, I'm afraid I also don't fit the bill. I don't have Long QT Syndrome, but I have had Chronic Arrhythmia since birth.

It has been mostly harmless, and remains untreated, but it's still noticeable and always plausible to occur. Unlike Hisao's issues, it's completely unpredictable and remains as a nuisance. What I can clear up a bit, as Long QT causes a fall into arrhythmia, is the way it's portrayed in the act.

The heart attack; Absolutely. In an instance of arrhythmia, a heart attack is fully possible (as it is at all times, really) and you will be at a significantly greater risk of it. A few times I've had to sit down and type 911 into my phone just in case it occurred because I could feel my chest seize up. I've been fortunate enough that the signal pains never started, but yes, it can be a source of that issue.

Hearing Hisao's heartbeat; Yes, the heartbeat can get fairly close to that loud. Though you don't actually 'hear' it, the way that it was portrayed through audio is accurate enough. Just imagine hearing that sound 20+ times over 10 seconds continuing until the issue ends anywhere from 30 seconds onward.

The damage caused will also be greater after exertion. I'm afraid (glad) that I haven't had it occur many times immediately after or during an instance of me pushing my physical boundaries, but the times that it has have been...signifying. They're the reason I've had to stop and worry about whether it will escalate.

As for the things specific to Long QT, such as the medication, triggered occurrence, and otherwise, I'm sorry that I can neither confirm nor deny. However, given the amount of heart and soul put into the work, I'd say that, at the very least, the developers did their research.

Re: Anyone with Long QT Syndrome specifically?

Posted: Fri Jan 20, 2012 6:35 am
by panique
Char wrote:If it's not a bother, I would really like to know how your problems affect you, how they materialize and the consequences. That could give me a better idea of what I might have, and if there is anything in particular that I should do.
I rarely have pain in that area, and if I ever do, it's not hugely debilitating. Just a bit of an "ouch" every so often. I've searched around a little bit, and it may actually be some harmless lung pain, so it's nothing that really ever concerns me.

Growing up I used to complain about feeling my heart 'skip' while I was lying in bed, and I was told that it was normal. It's the same feeling I feel now, and I've pretty much concluded that it's my heart regurgitating the blood. Sometimes certain sleeping positions make it worse. It's not painful, just a little uncomfortable, and I prefer to avoid sleeping in ways that trigger it because it doesn't seem particularly healthy to encourage it.

If you're concerned about your heart, see if you can get to a cardiologist. I went to my GP for a cold that wouldn't go away, and when listening to my heart he heard a murmur, and referred me to a cardiologist to have it checked out.

Re: Anyone with Long QT Syndrome specifically?

Posted: Fri Jan 20, 2012 4:46 pm
by OtakuMage
As with the above responders, I don't have long QT, but I was born with Tetralogy of Fallot, a 4 part birth defect of the heart. Had open heart surgery at 4 years old for most of the problems, but my pulmonary valve will need replacing every 15-20 years or so for my entire life. In fact, I just recently had that first replacement surgery last month, and after a week in the hospital I was going stir-crazy from boredom. I can't imagine how I'd feel after 4 months in the hospital like Hisao was. Like Hisao's condition being bombshelled on him, my need for my repetitive surgeries was dropped on me with no warning, and I've had to miss an entire quarter of school for my recovery. While I don't have the physical limitations that Hisao does, my new valve gives me a highly increased chance of a blood clot for 6 months, so I can sympathize with having the possibilities of something very bad happen hanging over your head all the time.

Re: Anyone with Long QT Syndrome specifically?

Posted: Fri Jan 20, 2012 11:09 pm
by Kanodin
All of my sisters and myself have been diagnosed with Long QT, but my second youngest sister was the only one that has had any problems with it so far. I'm going to share her story with you guys.

December of 2008, my sister Jen had a heart attack and lay dead for five and a half minutes before an Ambulance got to where she was at. After taking her vitals the EMT, described her heart as doing nothing more than quivering. They quickly hooked her up to oxygen, shocked her heart back to a steady rhythm and rushed her to the hospital, where she was in a Coma for 2 1/2 months. After she woke up, the cardiologist ran his tests and determined that she had Long QT syndrome. They immediately did heart surgery and placed a defibrillator implant from med-tronics that connected to her heart and would shock her heart whenever it detected the QT going off of a natural beat.

Three and a half years later, my sister is doing fine from the surgery and after joining a class action lawsuit and getting paid big because of bad leads from med-tronics. She shows barely any signs from someone that was dead for a full five and a half minutes, other than bouts of short term memory loss and such. Long QT is a much more severe form of arrhythmia; while all arrhythmia is dangerous and can kill you, Long QT kills more people simple because of what it does to the heart, one minute you are fine, the next minute your heart goes wacky and you're dead, while there are meds and of course ICDs that can help with Long QT, there is no cure. If anyone has any more questions about Long QT I'll gladly answer.

Re: Anyone with Long QT Syndrome specifically?

Posted: Sun Jan 22, 2012 6:31 am
by panique
Kanodin wrote:If anyone has any more questions about Long QT I'll gladly answer.
Do you take regular medication for your Long QT, or do any of your sisters? If you do, is it anywhere near Hisao's 17 pills a day? My dad had a heart attack in 2009 and takes a few pills every day now (around 5 or 6, I think), so 17 seems huge to me.

Re: Anyone with Long QT Syndrome specifically?

Posted: Sun Jan 22, 2012 11:33 am
by MrJackFrost
panique wrote:
Kanodin wrote:If anyone has any more questions about Long QT I'll gladly answer.
Do you take regular medication for your Long QT, or do any of your sister's? If you do, is it anywhere near Hisao's 17 pills a day? My dad had a heart attack in 2009 and takes a few pills every day now (around 5 or 6, I think), so 17 seems huge to me.
As far as I study (arrhythmia was the topic of class's discussion last week), most form of Long-QT syndrome's (specifically LQT1 and LQT2) medication was only Beta Blocker, not as much as 17 pills a day, I suppose. Well, one thing that makes me relieved since I played Rin's path was the prognosis of people with Long QT Syndrome is overall good and episodes of the dangerous arrhythmia are usually self terminating. :) We didn't discuss it further though, since I study to became a General Practitioner and Long-QT Syndrome's treatment was out of our expected competency (at least in my country).

I am curious though, is Hisao really got a Long QT Syndrome?

Re: Anyone with Long QT Syndrome specifically?

Posted: Sun Jan 22, 2012 2:02 pm
by panique
I was pretty sure it was mentioned specifically in KS, at one point.. but now I'm not 100% sure.

Re: Anyone with Long QT Syndrome specifically?

Posted: Sun Jan 22, 2012 2:56 pm
by Kanodin
panique wrote:
Kanodin wrote:If anyone has any more questions about Long QT I'll gladly answer.
Do you take regular medication for your Long QT, or do any of your sister's? If you do, is it anywhere near Hisao's 17 pills a day? My dad had a heart attack in 2009 and takes a few pills every day now (around 5 or 6, I think), so 17 seems huge to me.


Nah, you don't take that many pills at least not 17 a day, I don't even want to imagine taking 17 a day. I take maybe 8 or 10 a day, max. My sister doesn't have to take any, since they put in the ICD, it auto corrects and shocks her whenever her heartbeat goes erratic. Though she does say it hurts like a bitch to get shocked by it.

Medicines that I take personally include: Beta Blockers: Mexiletine x 2 morning, and afternoon and Propranolol x 2 morning an afternoon and Potassium pills 1 and 1 (I forget to take these quite a bit). The doc says that we can take a fish oil supplement if we want, but that stuff stinks.

Re: Anyone with Long QT Syndrome specifically?

Posted: Sun Jan 22, 2012 2:59 pm
by Kanodin
MrJackFrost wrote:
panique wrote:
Kanodin wrote:If anyone has any more questions about Long QT I'll gladly answer.
Do you take regular medication for your Long QT, or do any of your sister's? If you do, is it anywhere near Hisao's 17 pills a day? My dad had a heart attack in 2009 and takes a few pills every day now (around 5 or 6, I think), so 17 seems huge to me.
As far as I study (arrhythmia was the topic of class's discussion last week), most form of Long-QT syndrome's (specifically LQT1 and LQT2) medication was only Beta Blocker, not as much as 17 pills a day, I suppose. Well, one thing that makes me relieved since I played Rin's path was the prognosis of people with Long QT Syndrome is overall good and episodes of the dangerous arrhythmia are usually self terminating. :) We didn't discuss it further though, since I study to became a General Practitioner and Long-QT Syndrome's treatment was out of our expected competency (at least in my country).

I am curious though, is Hisao really got a Long QT Syndrome?


Just his symptoms alone sounds to me like Long QT, but I could be wrong. But what I don't get is what kind of heart surgery did they do on him, judging from the scare they put in an ICD. Which means unless it was a med-tronic one and very defective, then he should have never had the heart issues without it shocking him.


Nevermind, just did a little research. He doesn't have an ICD, he had this done. Left cardiac sympathetic denervation surgery.

Re: Anyone with Long QT Syndrome specifically?

Posted: Sun Jan 22, 2012 3:21 pm
by panique
Kanodin wrote:Medicines that I take personally include: Beta Blockers: Mexiletine x 2 morning, and afternoon and Propranolol x 2 morning an afternoon and Potassium pills 1 and 1 (I forget to take these quite a bit). The doc says that we can take a fish oil supplement if we want, but that stuff stinks.
Have you ever had an issue after forgetting your meds?

Re: Anyone with Long QT Syndrome specifically?

Posted: Sun Jan 22, 2012 3:35 pm
by Kanodin
panique wrote:
Kanodin wrote:Medicines that I take personally include: Beta Blockers: Mexiletine x 2 morning, and afternoon and Propranolol x 2 morning an afternoon and Potassium pills 1 and 1 (I forget to take these quite a bit). The doc says that we can take a fish oil supplement if we want, but that stuff stinks.
Have you ever had an issue after forgetting your meds?


Nope, can't say that I have, considering I never forget the Mexiletine or the Propranolol. Almost always forget the Potassium though. I do every now and then get some Palpitations, but nothing that's really worrisome. The one thing being diagnosed with Long QT had helped me with was an anger issue, I find that I have become much more zen in my approach to problems.

Re: Anyone with Long QT Syndrome specifically?

Posted: Sun Jan 22, 2012 10:23 pm
by MrJackFrost
Kanodin wrote:
panique wrote:
Kanodin wrote:Medicines that I take personally include: Beta Blockers: Mexiletine x 2 morning, and afternoon and Propranolol x 2 morning an afternoon and Potassium pills 1 and 1 (I forget to take these quite a bit). The doc says that we can take a fish oil supplement if we want, but that stuff stinks.
Have you ever had an issue after forgetting your meds?
Nope, can't say that I have, considering I never forget the Mexiletine or the Propranolol. Almost always forget the Potassium though. I do every now and then get some Palpitations, but nothing that's really worrisome. The one thing being diagnosed with Long QT had helped me with was an anger issue, I find that I have become much more zen in my approach to problems.
Really respect you, Sir. Not many people could face their own self, and here you are, facing your own (sorry for the word) issue with courage. I respect you for that.