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[Trinityheart8891]

Hello,
My name is Morgan, I am 20 years old...I found this website because it was mentioned on the ACHA message boards a few times by Niki, and Cort, and Lyn.

I was born with several congenital heart defects, had a VSD repaired in 1988, and a left ventricular outflow tract obstruction myomectomy in 1991. I still have a bicuspid aortic valve with regurg (mild) mitral stenosis (mild) and a borderline coarctation of the aorta. I see my cardiologist every other year right now, and am doing OK.

I was forced to go in earlier than scheduled this february after a few incidents on the treadmill, and some other symptoms that I had been having--I started feeling kind of funny while I was walking pretty fast on the treadmil, I checked and my heart rate had dropped from the 120s down into the 40s (or so I thought). This was the first time I had to go in by myself, and it was an experience.....after a stress test, holter, echo, and a couple EKGs it was determined that the incidents were spells of ventricular bigeminy--every other beat is a PVC, and I only feel the beats in between.... this dumps my cardiac output, nothing too serious, just stop when it happens, thank god I havent passed out yet from them, there have been a few times that I thought I was going to....they have happened a few times during normal daily activities too. They also determined that although I have a normal heart rate response to exersise, my blood pressure doesnt rise very much at all, this apparrently is a result of my mitral and aortic valves.....

my cardiologist dropped the bomb this last visit, I will need valve repairs and or replacements within the next 20 years. He told me I will not be able to train through most of the symptoms I have now, I will have to deal with them, its just the way it is....I am not afraid of this, and have been doing my best to not let this whole thing handle me, as I have been there and done that--no fun!

I have come to the conclusion that I need to have as much fun, and make the most out of life as I can while I am still relatively healthy. I am doing pretty good at this so far, I exersise within my limits (I get really SOB really quickly, and the rhythm issues) and just got accepted to my school of choice for respiratory therapy, I am extremely excited, as I will be doing what I have wanted to do for ever....I truely hate my job right now, and I cant wait to get out of it....

anyways, I have a few questions....does anyone know what the average time it takes for the valves to deteriorate? I have symptoms now with a 4mm/hg mitral gradient, it has increased .5 mm/hg in the last two years, and has gone from no stenosis to 4mmhg in the last like 6 years. does the rate of deterioration accelerate? I realize symptoms are relative to the person and their condition, but I feel like I should have fewer symptoms with the amount of stenosis I have? also, my symptoms seem to have no rhyme or reason, some days I do fine, and can do anything I want, and other days I get out of breath running flights of stairs, or carrying laundry, or I have runs of bigeminy out of no where, or I just have absolutely no energy what so ever...does this sound familiar?

sometimes I just feel overwhelmed, I am a college age kid, and I shouldnt have to deal with this, I should just be able to go and take a run if I want, or whatever I want for that matter.......and even on the good days I usually end up having something remind me that I am not normal, for example, today I met one of my moms friends for the first time, and the first thing he did was take a good long stare at my chest....at first I was creeped out, then I realized that he was staring at my scar, apparrently mom hadnt told him....

anyways, thank you if you have gotten this far, I appreciate it! I look forward to learning lots on here, and hopefully helping alot too!

 

[briansmom]

I'm not sure that I have a lot of info for you, but why is your doc planning to wait as many as 20 years if you are symptomatic?
And, no it is not fair that you cannot live a "normal" life at your age. I think you have to find a positive and a purpose. It sounds like you want to be a respiratory therapist. Think how much better you will understand your patients.
If you find any good tricks to deal with not being "normal" at 20, let me know. I will pass them along to my 16 yr old son.

 

[Phyllis]

Welcome to the forum, Morgan. I think you will find lots of company, good advice and reassurance here. Have you considered having a surgical consult even though your cardio has put a long term window on your condition? I would think that your symptoms would warrant that. Congratulations on your acceptance to school and your new career choice.

 

[Ross]

Yes, if your symptomatic now, I don't understand the reasoning in waiting either.

There is no such thing as an average deterioration, they just do when they feel like it. It could be years, it could be days. No one knows for sure. I'd certainly inquire why we are waiting given what you've expressed here.

 

[afraidofsurgery]

what symptoms?

what symptoms?

Hi, welcome to the forum! I was just slightly older than you when I had 'the bomb' drop on me, I was just finishing grad school, had a job waiting for me in San Diego, and was really freaking out about the whole thing.

Question: Are your ventricular bigeminy symptoms one of the symptoms your cardio is waiting 20 years for to do the surgery, or were they someting unrelated? What did your cardio explain to be the progression of your symptoms/condition and what to watch out for?

My mod-sev regurg aortic valve caused dilation of the left ventricle and ultimately shortness of breath upon exercise due to the overload on the heart, and would have eventually lead to heart failure of not corrected by surgery.

Just asking since at one point I had the Holter monitor but turned out to be no big deal.

Patty

 

[Guest]

Morgan!

What a cool surprise to see you here and posting .

WELCOME!



Cort:33swm."Mr Monte Carlo.Mr Road Trip".pig valve.pacemaker
PICS:lego.HO.model.MCinfo.RT.CHD = http://www.chevyasylum.com/cort
"Welcome me to stay overnight" ... Ingrim Hill ... 'Will I Ever Make It Home?'

 

[ALCapshaw2]

I'm guessing that you need a better understanding of your situation and prognosis before deciding on a course of action.

It sounds like you need to be evaluated by a Top Rated SURGEON, someone who has 'seen it all' and knows what to do, preferably at one of the Major Heart Hospitals, not just a 'good local' hospital. Brigham and Womens Hosp and Mass. General come to mind. Others in NY and of course #1 rated Cleveland Clinic.

Note that Aortic Stenosis can progress VERY RAPIDLY and can be a a cause of Sudden Death (such as basketball players falling dead on the court). Mitral Valve issues tend to progress more slowly and your gradients are still in the normal range. You will need a 'Real Expert' to sort out all of your interacting conditions. To my mind, Surgeons seem to have the upper hand on complex valve issues.

'AL Capshaw'

 

[Marguerite53]

Welcome, Morgan.

What Al just said is good advice. I hope you will hear his cautions and think about them. I hope they don't frighten you.....I sometimes think Al can be a little too blunt, but since he makes very good points, I just hope you will consider the things he says.

Particularly his first sentence... "I'm guessing that you need a better understanding of your situation and prognosis before deciding on a course of action." because I REALLY agree with him there.

WHile you've got this job you hate, and some insurance to go with it...please consider getting a second opinion from another cardiologist. Try to find one with a reputation you can believe in. I do not like the SOB you are experiencing. I sense that there may be an underlying problem that has not been diagnosed.

The PVC's can make you very tired. Very. You can possibly be put on beta blockers to alleviate the recurrence of them. I have found new energy and great relief from beta blockers.

Please come here often and let us support you in any way we can. You are young (all 3 of my children are in college) and it is tough to go through this. I learned of my condition in my late 20's, went on to marry and have 3 very healthy children, and then declined rather rapidly in my mid-50's. It is definitely possible to go a long time with mild valve problems. However, that said....I did not experience any SOB until I was in my 50's. It doesn't sound right to me.

Good luck and keep posting!

Marguerite

 

[WayneGM]

Welcome to the VR community. I echo what's been said. I'm no expert, but if you've already got physical symptoms expecting to wait 20 years for repair/replace seems odd to me. In my case I was asymptomatic, with no history of heart problems, when my long time GP discovered a heart murmur that was not there previously. It was from mitral valve regurg. The regurg progressed so rapidly that within 18 months I had OHS to repair it. All the while, I remained asymptomatic.

 

[Mary]

Welcome to the Forum, Morgan.

I can't offer much advice on your questions, but I'm sure others can, and will!

We're glad to have you with us.

 

[Trinityheart8891]

hi again...

my cardiologist Dr Scott Yeager wants to continue following me regularly at this point, he said within the next 20 years, so I would bet he is talking about sooner than 20 years, just trying to give me a time frame, I guess, but we have been really good with the followups, and he encourages me to call the office any time I need or want to, right now I go in every other year, and more often whenever I need to.

Patty, the PVCs and Bigeminy arent symptoms caused by the valves as far as I know, they are more likely a result of scar tissue from previous surgeries,he told me that if I keep having them he wants me to have a 30 day monitor, I really really am not willing to do that, as my skin is extremely sensitive, and I dont want to end up with scars from the electrodes.( know that sounds pathetic, and ditzy, but honestly, I can barely handle a regular holter)

Marguerite he said that he doesnt like treating these because they are hard to get rid of, and that the meds they use to get rid of them can cause their own arrhythmias.

that said, he told me to call if I have any questions or concerns, anything at all, I have seen him for 20 years now, and although I know I should be seeing an adult congenital cardiologist, it is very hard to make the switch, my mother and I both have so much trust in this man, its not even funny

I have not had a surgical consult lately, and have not gotten one since I had surgery in 1991 (heart wize anyways, I had a laparoscopic nissen fundoplication for severe acid reflux 2/06), I will probably go to the adult congenital heart center at boston childrens when its time as this is where I recieved my care as a child.

sometimes I just want to "forget" about this, or pretend he didnt say what he did, or whatever, some may say Im still in denial, but I dont think I am, I do know that I am not letting this run my life, but its still hard not knowing the future. I am living "no fear" right now sitting here drinking my cup of coffee and contemplating the events of the next few months....

I want so badly to be able to live a normal life, but at the same time, I find when I need to, I am really good at just taking the symptoms in stride, and I am confident in the fact that becoming an RT will help me with this, but I feel that I am not sure when to blow things off, and when to make a deal of them, I have had instances when people have thought of me as a nut because I was having palpitations that werent caught on a holter, or whatever, so I have become very conservative, I am very good at checking my pulse and stuff and knowing in my heart (no pun intended) that things are safe for the moment or not, thankfully I havent really had a situation where I have needed to go into the ER, usually I can stop it in its tracks by sitting down, or doing a valsalva, or whatever, I am just not looking foreward to my symptoms getting worse, and I know that they have to get worse before anything can be done to make them better.

Thank god I have a good GP she is very proactive, and I know I can go to her to get advice any time, its good to have a stepping stone between going to the cardio's, because it usually takes forever to get an appt, and it feels really great when someone vindicates your symptoms, and tells you that you need to go be seen, or tells you that everything is ok, and you dont need to go in, its really great to have the guidance when you are making such a big step in your own care.

anyways I appreciate the advice, and support, I can see now that this site is going to be extremely helpful,

Thanks!

 

[ALCapshaw2]

Hello again Morgan,

Yep, you definitely sound like a Long Time Heart Patient with a well developed aversion to going to the ER! Been there, done that! When I was having 'issues' with arrhythmias, my Doc's and I came to an agreement that if they cleared up overnight I could just 'ride it out' but if they continued to the next morning, I would go in to be evaluated, either at the Heart Center or ER.

BTW, do you have a Stethoscope? I got to where I was able to 'self diagnose' (or lucky GUESS) between PAC's / PVC's and A-Fib. I was told that the only way to differentiate between PAC's and PVC's with an EKG.

Fortunately for me, my Cardiologist believes in using the MINIMUM Dose of medication that controls my symptoms and he worked with me to determine what that level was. For several years, a low dose of the Beta Blocker Toprol XL (25mg) controlled my PAC's (and random PVC's).

With other changes in my heart, I developed exercise induced and caffein (CHOCOLATE!) induced A-Fib which required a more targeted medication, Sotalol (generic form of BetaPace). Again, I was eventually able to wean down to 40 mg (1/2 tablet) which keeps everything under control. Another Cardiologist had told me my dosages were NON-Theraputic BUT, they WORKED for me and my current cardio is satisfied with the result.

I still think it would be wise for you to get a second opinion from someone who has specific knowledge of your issues, and also to consult a surgeon about WHEN to proceed with surgery. ASK if there are any electode pads made for sensitive skin. Letting your skin issues trump your heart issues is probably not wise.

'AL Capshaw' (trying to be a little less blunt

 

[CathyK.]

Welcome Morgan. I am 7 weeks out of an Aortic valve replacement. I am 44 and have known about my condition for 4 years however it was something I was born with. My symptoms were fatigue and some SOB when exercising or carrying laundry upstairs. My symptoms were getting to me so I opted to have the surgery even though my numbers showed that I could still wait a bit. After surgery my surgeon told me that the valve was alot more calsified than they thought. So my suggestion to you would be go by how you are feeling along with the numbers. Don't just rely on the numbers. I am with Al, go talk with a surgeon and see what they have to say.

Good Luck and keep in touch!

 

[Gnusgal]

Hey, Morgan! Welcome to VR. It's nice to "see" you over on this side of cyber-space. I'm sorry to hear you're having issues with arrhythmias. They stink, I know. Has your doc discussed the possiblity of a defibrillator as a precaution? I know ventricular arrhythmias can be dangerous or harmless. I don't have anything more than PVCs (at least, not diagnosed), but because of my ventricular failure I recently got a biventricular defibrillator put in. Hopefully I never need a "big" shock, but it's nice to know it's there if I need it.

Good luck to you!

 

[Trinityheart8891]

hey,
Al, yeah, I have obviously had some experience... I can usually self diagnose also, I typically dont have access to a stethoscope as I am almost never home between school, and stuff, but I do have some medical training, and I can typically tell when things arent ducky, either the irregular pulse, or the symptoms, today it was both....gotta have that love-hate relationship with coffee I started feeling funny, and checked my pulse, you know it-it was irregular, I had a couple of real short runs of bigeminy and some PVCs I felt the blood drain from my face, broke out into a cold sweat, my hands got clammy, and I got really tired, light headded and foggy for about an hour afterwards....I let it go, because it was short, and I felt so much better so quickly.

I have made a promise to myself that I will go to the ER if and when I need to, usually I end up feeling crappy for an hour or two at a time, and it straightens out. any more than a few hours, or if it happens more than a few times in a day, and I dont see it letting up, I will go in and get checked out at the local ER, my cardio, unfortunately is over an hour away, so I wont be seeing him, but thats ok......

Niki, as far as these, they are considered benign, they are probably partially a result of a slightly long QT interval on my EKG, which means that it takes my ventricles a little longer to repolarize and leaves them a little vulnerable to going whacky whenever they want to, also the scar tissue issues, and the dacron VSD patch....

as far as the beta blockade, I will check into this if they get too bad, apparrently they are ok right now, I really dont want to be on any meds right now, as my blood pressure almost runs low, and it doesnt respond well during exersise, which is probably part of the reason why I wasnt offered them in february, I just took my job back at wendys to pick up some extra cash for school, I need to be able to do some moderate activity, and I bet that this result of beta blockers would negatively effect what tolerance I have right now, does this reasoning sound right?

anyways, I really really appreciate the responses, and I look forward to keeping up with the boards
thanks again