Got Bad News :(

01-03-2007, 05:46 PM

Well, my cardiologist called me back FINALLY. He is on vacation, but has reviewed the strip of the event monitor whre I had the Accelerated Idioventricular Arrhythmia. He STRONGLY thinks that the electrophisiologist will do some invasive procedures, but said it was not his call. He told me not be freak out, but I have "RIGHT VENTRICULAR DYSPLASIA". Yes, I am very fearful, and feel very surreal. I of course looked this up and it sounds pretty darned grim. Hubby is more upset than me. Ihave no emotions right now. i took xanax after I talked tothe dr. and I feel numb. If you look up this condition, it is generally hereditary, and the MAJOR CAUSE of sudden cardiac death amoung young athletes. It also says it gets progressively worse over time, and it can move to the LEFT ventricle and it is considered a DISEASE OF THE HEART. ( wow bet our ins. wil drop us for sure now...we are self empoyed and I have that to worry about now) I didn't find any good news at all about this condition. I do know that the cardiologist was "preparing me" very gently for soem INVASIVE testing. Told me that they woul dprobably want to do a heart cathetar..or angiogram..whatever.. i know it is to see how much damage I have and if I have any major blockages. He also said they would also probablywant to do an EP study on me. But again.. it wouldn't be "his call".. I suppose depression would be putting it extremely mild of my current state. Why can't I cry? Why do I feel as though I am made of stone? I know I have a long road of testing ahead of me. I need prayers from any of you that pray. PLEASE??? Thanks.. I wish I didn't have towait until next wed. to see the electro doc. You know, I asked the cardiologist if this woul dkill me, and he said that thsi in itself, wouldn't, but with the right ventricle dysplasia, we need to get to the bottomthings,. I PRAY I DON'T HAVE TO BE PUT ON ANTI ARRHYMIA DRUGS. My electrophysiologist has even toldme before all this..when I was having all the pvc's , that these drugs could someitmnes CAUSE a deadly arrhythmia. The things I have read also say that this is a DISEASE.. ALREADY TOLD YA THAT..SORRY.. AND IT GETS WORSE OVER TIME. It even mentioned in extreme cases, heart transplant. I want to curl up in my bed and not get out untill the dr. sees me. Thanks for reaading this. I am just tooo numb. Mimi..p.s. thanks in advance to ANY ONE who responds to this. I really need to hear from you all...

01-03-2007, 08:01 PM

Hi Mimi,

Please try not to worry too much. I know how hard it is, somehow being on the same boat as you are, but worrying is only going to make things worse. I am trying to tell myself everyday that no matter what, we can only influence things some ways, some we cannot and we have to accept our lives the way they are. Most important is to live our lives, to try to enjoy life. You did all you could have possible done, you’ve been insistent and got a diagnostic, now let’s hope for the best.
I have my appointment tomorrow and I’ll let you know how it went. Thanks so much for your reply!
Good luck!

01-03-2007, 08:20 PM

I am trying to stay calm until I see the electrophisiologist. I pray you have a god report tomorrow. God is good, and wilnot put more on us than we can handle. I don't want to push my Christianity on anyone, but it what I do. Pray. So Iwill pray for you. Please let us know what you find out. Thank you for the encouraging words. Mimi...48 and falling apart in Texas!!

01-03-2007, 08:37 PM

Hi Mimi,

Please try not to let this freak you out so much. I just have PVC's, and I know when I was first diagnosed w/ them, I felt the same way you do, as you also see that in people w/ heart disease, PVC's are also indicated in sudden cardiac death (per internet medical articles). When I first looked and found this I thought I was going to have a heart attack just from fear, but after more tests, etc., I learned it was not the death sentence I first thought after looking it up on the internet. I would be surprised if your doc. can diagnose you for certain just based on the monitor alone. I also often hear of people being given a preliminary diagnosis only to find out later it is something else, often something harmless. Having the angio is also a normally safe, not too difficult procedure, and it you have it, you will know much more certainly what is really wrong (or not wrong).

So, yes, pray, and don't jump to conclusions just yet. Whatever the outcome, you are right, God will see you through it. I have gone through testing for 2 what could have been life threatening conditions in the last year, and both times I was POSITIVE I was going to die. Every time I researched the conditions I was more sure I was going to die, but later when it turned out to be nothing serious, I realized I also had symptoms of benign issues just as much.

I pray you will be fine, and that you will have a peace of mind very soon.

Take care!

KG

01-03-2007, 09:13 PM

Hello fellow Texan! Thank you for your kind words and encouragement. i just need to quit reading and googeling this. It's so hard NOT TO THOUGH! I have read that with Right ventricular Dysplasia, there is NO REAL cure, but they try more to focus on the arrhythmias from the ventricles. I think I will be coming down your way to the Tx. Heart Institute for a second opinion, no matter what is todl to me Wed. I have family in Houston, and I have been tothis facility before. Thank you SO MUCH for posting. I really do need the support and you all will never really know how much I depend on this site.

01-04-2007, 04:11 AM

Mimi,

Did the cardio only give you a heart monitor? No EKG or ECG? Everything I read on the internet says that an event monitor is not the only way to tell if you have Dysplasia. Maybe the other tests he does will rule out that you do have this disease.
If you do have the disease, at least you found out now so you can take the necessary precautions and steps to keep on living.
Plus medicine and technology is ever changing that they may actually find a cure.
I think the reason why it is the leading dealth of young athletes is because most don't even get an EKG when they are younger so heart disease is not found early.
I would be freaking out also if I were you, but remember that someone "upstairs" is watching you and I am sure that he will keep you safe.

thoughts and prayers for you,
Lyl

01-04-2007, 06:46 AM

I'm confused about how your doctor diagnosed this only by seeing your event monitor.

01-04-2007, 07:43 AM

Sorry you are going through Hell, mimi.

Like the others have said, that diagnosis of ARVD (arrythmogenic right ventricular dysplasia) may have been by the seat of his pants. Let's see what the electrophysiologist has to say.
You will probably need an MRI also to determine the degree of any fatty infiltrate into the right ventricle.

Wait til you have confirmation of the two related conditions. Odds really are good that the first doctor's estimate was not correct.

We'll talk more after you get that catheter exam...it's not TOO invasive.

In the event the first cardiologist is correct:
Sotalol is a good drug...daily aspirin VERY wise...electro ablation often works pretty well...and a pacemaker can be used to keep rhythm safe in the most serious cases.

Good luck.
<Psst, that's why they invented Xanax!>

01-04-2007, 12:29 PM

Belive me, I am taking my Xanax as prescribed. But..I am still so numb. I am scared about the cathetar/abgiogram, and the EP study the cardiologist seems to think I will be having. Also, today when hubby called him AGAIN! he was told that I would 90% have a defibulator implanted. I just cannot get hold and get my mind to absorb all this right now. All I ant to do is sleep. I cannot think of anything or eat anything. I am WAY to depressed for my own good. I mean, as I statd before.. Dysplasia of the ventricle is a grim diagnosis. I DO have faith. I am putting this is God's hands. The map of my life is already set. I will do as HE wishes. I am so SCARED guys! there is just no happy future for me right now. I just pray that I don't have the dysplasia. I wil end up an invalid. I KNOW i sound like I am the bigest whiner in the world. Just over look me .. mimi

01-04-2007, 12:29 PM

Belive me, I am taking my Xanax as prescribed. But..I am still so numb. I am scared about the cathetar/abgiogram, and the EP study the cardiologist seems to think I will be having. Also, today when hubby called him AGAIN! he was told that I would 90% have a defibulator implanted. I just cannot get hold and get my mind to absorb all this right now. All I ant to do is sleep. I cannot think of anything or eat anything. I am WAY to depressed for my own good. I mean, as I statd before.. Dysplasia of the ventricle is a grim diagnosis. I DO have faith. I am putting this is God's hands. The map of my life is already set. I will do as HE wishes. I am so SCARED guys! there is just no happy future for me right now. I just pray that I don't have the dysplasia. I wil end up an invalid. I KNOW i sound like I am the bigest whiner in the world. Just over look me .. mimi

01-04-2007, 12:29 PM

Belive me, I am taking my Xanax as prescribed. But..I am still so numb. I am scared about the cathetar/abgiogram, and the EP study the cardiologist seems to think I will be having. Also, today when hubby called him AGAIN! he was told that I would 90% have a defibulator implanted. I just cannot get hold and get my mind to absorb all this right now. All I ant to do is sleep. I cannot think of anything or eat anything. I am WAY to depressed for my own good. I mean, as I statd before.. Dysplasia of the ventricle is a grim diagnosis. I DO have faith. I am putting this is God's hands. The map of my life is already set. I will do as HE wishes. I am so SCARED guys! there is just no happy future for me right now. I just pray that I don't have the dysplasia. I wil end up an invalid. I KNOW i sound like I am the bigest whiner in the world. Just over look me .. mimi

01-04-2007, 12:40 PM

Will/am keeping you in my prayers and DO understand the total fear you must be going through but as someone just told me, I need to trust in God, the Dr. and thank God for the technology now available. Hugs and prayers and please keep us posted or if you just need to talk, alot of people here for you.

01-04-2007, 02:41 PM

I'd be scared too, mimi, but don't assume the worst until you've had tests that can definitively diagnose you.

01-04-2007, 02:42 PM

You are ALL WONDERFUL!! Thanks you from the bottom of my lil ole heart. I will definitely keep you al posted. i will not see electro doc until next wed. bummed about that! I'm trying my hardest to stay focused on the POSITIVE. i am reading a book my precious daughter bought me last night. It is THE BIG BOOK OF SMALL STUFF, by The author of DON'T SWEAT THE SMALL STUFF. although we know this isn't small stuff. it is helping to read and get encouragement. I have a hard time keeping focused. Thank you again.

01-04-2007, 03:07 PM

Hi I have a friend of mine, She is 24 years of age. and following are the findings which from the test which she had from the Echo Test.

FINDINGS
Mitral valve leaflets are slightly coarse and show wide excursion.
Both leaflets show systolic prolapse.
Grade II mitral regurgitation. Diastolic flows are normal.
Tricuspid, aortic and pulmonary valves show normal texture,
opening and flows.
Normotensive tricuspid regurgitation.
Normal LV size, wall thickness and function parameters, EF=60 %
No regional wall motion abnormality.
LA, RA and RV are normal.
Cardiac septae are intact.
ECHO DIAGNOSIS:
MITRAL VALVE PROLAPSE.
II MITRAL REGURGITATION.
NORMAL LV SYSTOLIC AND DIASTOLIC FUNCTION, EF=60 %
NO EVIDENCE OF THROMBI/PERICARDIAL EFFUSION/VEGETATIONS.
PULMONARY HYPERTENSION.
DR. N. G. KARANDIKAR
CARDIOLOGIST .
Could u please provide your comments on this. Is there any harm to her. How normal is she and. Can she acquire problems after marriage. Pls feel free to provide your comments. Waiting for your true comments desperately.
Thanks and Regards
Farooq

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