Heart Condition (non bunny)

[jerseygirl]

Apologies in advance for length of post.   Quick!  Bail out now!

I’ve been debating about posting this for a while.  I don’t have a very big social network and BinkyBunny.com is the only forum I’m a member of.  I could go to specific forum for this issue but I like you people better!  Besides, with a membership of 2800 plus, I figure someone is bound to be able to help. Enough dawdling.

My question is –  does anyone here have experience with the heart condition Long QT Syndrome? Or know anyone with it?  I’m on the eve of an appointment which will tell me one way or another whether I have this. I’ve had 2 test so far and hopefully this will be the final one.  My sister was diagnosed some months back and as it is hereditary, family members were encouraged to be tested.  In brief, it’s basically an electrical fault that affects the way the heart returns to normal after a beat.  I’ve read up abit about the medical side but I’d like to gain a bit of perspective on the ‘living with it’ side.  To be better prepared if possible.  Like I said, I could put this question to a related forum but I’m good at avoidance and afraid such places would give too bigger dose of reality!  I’ve been pretty blas’e about it all but now as the appt approaches, I guess some things are hitting home. 

This post is probably more about ‘putting it out there’ rather than having it tumble around my head!  However, I’d appreciate any light anyone can shed.  Thinking positively, and I have good news tomorrow, I’d still like to know more for my sisters sake.

Thanks for listening!

[(dig)x(me)x(now)]

I don’t know anything about it, but I hope all is well! I’ll be thinking about you

[RabbitPam]

I don’t know about it, though heart conditions have been on the top of the list for treatment and research for years now, so I’m sure there’s informed info. out there.

Since you see your Dr. tomorrow, I would advise you to not research ahead of time. The first stop is to ask your doctor to explain it all very thoroughly. Then ask for any written information you could take home with you. (Pamphlets). Then ask him, or his nursing staff, what is a good resource to check for more info., especially on line. That may stear you to accurate info. The only website I trust immediately is JAMA, the Journal of the American Medical Association. Or next, the AMA. But your local hospital may have a division that offers support groups, and they usually have very accurate info. to disseminate.

My suggestions are based on keeping you from getting the wrong info,. or seriously inflamed “worst case” info. that is upsetting and doesn’t apply to your or your sisters.

Hang in there. {{{{{{{{{{{hugs}}}}}}}}}}}}}}}

[GHbun]

I’ve heard about it, and am sending good vibes your way. Keep us posted.

[Lightchick]

You’ll be in my thoughts today…let us know how it goes at the doctor.

(((((hugs)))))

[Kokaneeandkahlua]

Jerseygirl First Big {{VIBES}} for you, healthy ones and calm ones!!

 

I’ve never heard of this but I’m doing some reading for you right now and I have access to huge libraries of Scientific journals online. Here’s some stuff that may help Hopefuly this helps, educating yourself and being your own health advocate is the best course of action with any problem (and we see that time and time again with our bunnies and our vets!)

 

American Heart Journal: Vol 89 Issue 3: The long QT syndrome:

“Beta-blockers, at full blocking dose, represent the therapy of choice and are greatly effective in reducing the mortality (from 73 per cent to 6 per cent).”

 

Current Problems in Cardiology: Volume 33 Issue 11: Long QT Syndrome.

“Risk assessment should consider age–gender interactions, prior syncopal history, QT-interval duration, and genetic factors. Beta-blockers constitute the mainstay therapy for LQTS, while left cardiac sympathetic denervation and implantation of a cardioverter defibrillator should be considered in patients who remain symptomatic despite beta-blocker therapy.”

 

Journal of American College of Cardiology: Volume 51 Issue 24; Long QT syndrome.

“These analyses have consistently indicated that the phenotypic expression of LQTS is time dependent and age specific, warranting continuous risk assessment in affected patients. Furthermore, the biophysical function, type, and location of the ion-channel mutation are currently emerging as important determinants of outcome in genotyped patients”

Pharmocology & Therapeutics: Volume 118 Issue 1

This is very wordy but excellent about different treatment options and narrowing what the problem is to what treatment is chosen.

“Defining the molecular basis of channelopathies can have a profound impact on patient management, particularly in cases in which genotype-specific pharmacotherapy is available….β-blockers remain the first choice of therapy for LQTS irrespective of the genotype…Because it is the most potent blocker of late I_Na, ranolazine is likely to be of therapeutic value in LQT3 as well as in all forms of LQTS….Another class IC sodium channel blocker, flecainide has been reported to be effective in one of the variants of LQT3 with a specific mutation (D1790G) in SCN5A….Compton and co-workers tested this hypothesis in patients with LQT2 and demonstrated that administration of oral potassium to raise plasma concentration by 1.5 mEq/l above the baseline can reduce resting QTc interval by 24%, improve QT-RR relationship towards normal and normalize T wave morphology….It should be kept in mind that the potential role of these potassium channel agonists in the therapeutic management of LQTS is thus far supported only by experimental data…..Calcium channel blocking effect of verapamil should be of particular benefit in LQT8/Timothy syndrome…Enhancing the gap junction by infusion of AAP10 (a gap junction enhancer) significantly reduced the QT interval, TDR and incidence of TdP in this model. Interestingly, the ATX-II-induced increase in QT interval and TDR was associated with an increase in the non-phosphorylated form of connexin-43 while the effects of AAP10 were associated with an increase in the phosphorylated form of connexin-43….LQT3 patients are at highest risk of TdP when heart rate is slow. Accordingly, pacemaker therapy is thought to be most beneficial in patients with LQT3 and less so in LQT1 and LQT2. Pause-dependent TdP is more prevalent in LQT2 patients than in the other forms and hence pacemaker therapy may be of therapeutic value in preventing TdP by suppressing pauses in LQT2 patients.”

 

 

 

Some links on living with lqts

http://www.nhlbi.nih.gov/health/dci/Diseases/qt/qt_livingwith.html

http://nydailynews.healthology.com/heart-health/heart-understanding/article227.htm

And a facebook support group exists as well!

[Sage Cat]

Wow, I have never heard of it.

It’s very brave of you to put it out here! Let us know what happens.

you are in or thoughts. Hugs from Sage, Kay & Winston for you and your sister.

[Beka27]

i am not sure what that is, but i don’t know a whole lot about health conditions. my thoughts are with you. try not to worry about it too much until you know for sure. get some rest. i like Pam’s advice of getting correct info from your doctor. if you don’t understand something, ask again. maybe take a list of some questions. i’m sure a lot of what is online is correct, but some of it might not be and it might just cause unnecessary worry.

don’t feel bad about sharing that here! there’s no reason why we cannot be here for moral support in non-bunny situations if you choose to share.

*HUGS!*

[Kokaneeandkahlua]

^^ Yes and if there is anything we can do, let us know!!

[jerseygirl]

Thank you ALL for your warm wishes and advice. Good advice not to read too much too soon. I just got it too late! Only read your posts early this morn. AFTER I’d done some online reading last night. Ending up having a restless night.

Quick update; I’m no closer to knowing anything but expect phone call tomorrow. I’ll save the links for further reading, to look at a bit later on. It was a stretch but I thought there may have been a BB member with 1st or 2nd hand experience I could chat too. You’ve all made me realise I was getting ahead of myself. So now I’ll endevour to stay calm, wait a bit longer and deal with things as they arise.

Thanks again. *many returned hugs!*

[Cassi&Charlie]

(((Kate)))

Waiting is always so difficult & it’s really hard to stop researching, especially in the age of the internet! When I found out that I had kidney damage from an allergic reaction to medicine I got straight online & researched until I was convinced that I was going to have to have a kidney transplant & I was on the verge of calling my sister to ask her to get blood tests to see if she’s a match…

Then I found out that it’s so mild that unless I binge drink, smoke & do all those silly things, it’s probably never going to get much worse & even if it does, the other kidney will manage.

SO anyway – the long winded moral of that story was – it’s easy to get paranoid when you have access to internet but it’s hardly ever helpful.

Hugs hugs & more hugs!!!

[jerseygirl]

Thanks Cassi, know what you mean about the internet. My sis was in denial when she first was told, so I did bit of reading back then to help get head round it all. Otherwise, I’d been pretty good about ‘ignoring’ it! Distracting myself on BB has been helpful I’ve kinda cruised along pretty sure I’d get negative result and just have a grumble about the expensive of all the tests etc. But every now and then when you’re feeling a bit vulnerable, the doubts creep in. Sadly, this condition can affect more than one family member, I think that is a greater fear for me.

You can only live life and deal with things as they come your way. *shrug*

Glad your kidney issue was not as bad as you first thought. I would still harrass your sister to keep hers nice and healthy. It’ll keep her on the straight and narrow. j/k

[MimzMum]

Kate, let me just say I am keeping you in my prayers.

I have something my doctors have labeled only as ‘premature heartbeat’ which has been going on for about 25 years. It’s where the heart either skips a beat or beats twice in the space of where it should beat once and it feels like a goldfish about the size of a softball is wiggling or fluttering around in my chest. It scared the heck out of me when I first felt it and I thought I’d be a sure candidate for a heart attack. But as long as I keep the caffeine down (almost impossible in my life) and don’t trigger it, it only hits me once in awhile (and usually when I’m resting anyway), so there’s no real cure but there is maintenance. I don’t think they consider it to be life threatening, or I’d be on some kind of medicinal regimen, I’m sure.

I’ve never heard of your condition, but I’m off to read the info posted here. (I could never be a nurse because I faint at the sight of blood, but I just eat up info on medical matters regardless.) I pray your appointment with your doctor shows that all is good and hopefully he can give you the information you seek.

(((((((((((((((((((hugs)))))))))))))))))))))))

[jerseygirl]

Well looks like I don’t have the disorder! A low probability at least (that’s the term the cardio used!)
There a lot unknown about QT and the tests are difficult (in my case) to give a definate Yay or Nay. Cardio suggest I have a genetic test but only if I choose to. I figure if Cardio is letting it go at that, I’m pretty well in the clear.

Thanks for the support!

[Kokaneeandkahlua]

AWESOME!!! That’s so great to hear!! *HUGS*

[jerseygirl]

Thanks! Wow, you were quick, didn’t realise anyone else was online! I’m still somewhat confused about the detail so I might get them to send me result in writing.

[Kokaneeandkahlua]

Definitely! Always good to be your own health coach!!!

As I was reading, it seems it’s an exclusion-diagnosis, meaning they sort of exclude things as they go along and their isn’t a definitive test…It seems very confusing…SO I think that’s a very good idea to get the stuff mailed to you! More comforting that way! My mom actually found out her doctor missed a couple of things and on her osteoporosis and degenerative lung disease….basically it could have improved her quality of life etc. and the doctor missed this stuff…miffs me but she brushes it off….
I
‘m about to jump off my soap box (hehehe) and be my own health opponent…I basically have to go in and demand blood tests (My thyroids been out for 23 years and now I’m experienceing sleep apnea -non related but…and other things) and no one I’ve seen seems to think it’s a big deal…I’m not the kind of person who can stand up for themselves well so its’ going to be a bit scary!!

[jerseygirl]

Ah thyroids – another confusing, hard to pin down area! Maybe you can talk to some people who have similar experiences/issues. That way you can be armed with more specific questions with the docs. Sort of like having the checklist when finding a rabbit savvy vet! I think though, if you demonstrate any medical knowledge, the doctors write you off as a hypochondriac – grrr. Yes Doc, you did 6 years of study, but I can read, and I have a brain and this is my body!!! Don’t worry – you’ll be AWESOME. Just because you are!

[Lightchick]

That’s so great, Jerseygirl! That sounds very positive! Are you going to have the genetic test to be sure? I hope all remains well with you…

[Cassi&Charlie]

Congrats on being prob in the clear Scary stuff health, isn’t it!

K&K, I find it difficult to stand up for myself with doctors, usually I’m fine…really really fine but for some reason doctors make me uneasy.

Good luck! Be firm, don’t try to stare doctors down though, I’ve known many who never seem to blink…

[RabbitPam]

jerseygirl,

That’s great news! Definitely have it in writing, as you may find yourself with a Dr. questioning your heart rate in 20 years and you’ll be able to remember that it’s a possible condition, or related to it.  Meanwhile, your sister is being treated and you have some good sources of med. info. here, as mentioned earlier in this post.

Now go see a good movie and get your mind off it. (Hey, I know. Watch my new video of Samantha Bunnykins in my latest post. It’s so dull you’ll be zzzzzz…..)

[jerseygirl]

I just watched it! Not dull! Has baby bunny in it *sigh*. Thank you once again.

[Beka27]

awesome!

[Hedi]

HI Jerseygirl. Im an RN by trade and actually have been working as a nursing instructor for awhile. Don’t get yourself upset over this potential diagnosis for now. The more you read the more upset you will get and it will get the best of you.

Doctors can be wrong, testing can be wrong even if you have already had a few tests. I see it all the time. Hereditary or not is never a guarantee you will get something. I know you want to be prepared but with the heart small things can be absolutely nothing or even a fluke that shows up on EKGs and other cardiac tests.

Just wait until your last test is interpreted by the cardiologist because you set yourself on having this. If you sister has the condition it will not guarantee it for you. Many times with things that are hereditary if a sibling has it the other siblings may not.

You probably have other conditions in your family history that you “could” inherit but doesnt mean you will ever get them.

[Author]

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