My "satisfactory" test results...

[Abbanabba]

Well, the results are in and as I expected, there are a few things that are raising questions in my head? if no-one else?s.

Since 2002 my pulmonary regurgitation has gone from "mod-severe" to "severe" and my aortic root has dilated from 3.7cm to 4.0cm. All the other valves have trivial regurg (which is pretty normal) and the tricuspid regurg is trivial-mild, so that?s OK.

My Holter was a little alarming, with up to 241 supraventricular arrhythmias an hour, although this is in the upper heart chambers and even at that rate is not considered too much of an issue (..I?m guessing this is a fancy term for PAC?s..).

More concerning, however, were up to 274 ventricular arrhythmias an hour (PVC?s (??)), which are in the lower chamber and are often a precursor to v-tach. I also recorded:
up to 46 couplets an hour
11 monomorphic triplets
185 polymorphic couplets
65 runs of ventricular bigeminy ? longest: 15 cycles (every 2nd beat is irregular)
68 runs of ventricular trigeminy ? longest: 7 cycles (every 3rd beat is irregular)
Frequent polymorphic ventricular ectopics recorded.
122 atrial couplets
4 atrial triplets

Ventricular tachyarrhythmias are faster than 100 beats per minute by definition.
Monomorphic ventricular tachycardia would appear on an ECG record with a regular rate and rhythm and fixed shape or morphology of the ECG trace. Each beat of the tachycardia would look the same, hence the designation monomorphic.
Polymorphic ventricular tachycardia typically is irregular in rate and rhythm and has varying shapes or morphologies on the ECG. A problem that starts as a monomorphic ventricular tachycardia may deteriorate into polymorphic ventricular tachycardia.

My feelings of SOB and dizziness from climbing stairs, etc, corresponds to sinus tachycardia recorded ? which at least that confirms I?m not going crazy and it?s not just ?all in my head? ? so how they can keep telling me my symptoms aren?t a result of my heart just baffles me!

The other thing that I?m unclear about is that arrhythmias are the heart beating abnormally fast, yet my HR tends to run fairly low (usually around 60bpm with drops below 50bpm), so is my ?normal? HR actually lower than 60bpm and being ?boosted? by the arrhythmias, or what??! I?m not too sure how that works. I know my doctors are reluctant to put me on beta-blockers to address this problem because my underlying HR is already quite low and that could cause further problems.

My exercise test showed my O2 levels dropping to the mid 80?s after 7 minutes. That might be ?normal?, but stage 2 of this test was always pretty much my regular walking pace anyway ? it?s the incline that kills me. Once I got to stage 3 (at 9 minutes) I went down hill almost immediately and had to stop. I know this is within ?normal? parameters, but it was only a fast walk, which is what I find distressing since that sort of pace never used to bother me that much. Anyway, everything else seemed "OK". The only other thing was part of the ECG being ?uninterpretable due to abnormality in baseline?, yet they claim no significant changes in the conclusion (..I remember the techs checking to see if something had come loose as the readout was so erratic..).

I don?t know enough about the lung function test to draw any conclusions, only enough to surmise that the asthma medication they tried made no significant difference.

Overall, it seems (from my own research) that a lot of these things aren?t too much of an issue on their own (..although at what point does severe regurgitation become severe enough to warrant some attention..)?. but it?s the fact that together, all these things seem a little more ominous. It also ticks me off no end that they keep telling me my heart?s not the cause of my symptoms, when clearly there?s sufficient evidence to prove otherwise. It may be that surgery won?t fix these problems, but don?t tell me it?s all my imagination. PUH-LEEEZE!!!!

So that's about it. Sorry to waffle for so long, but I know you guys don?t really mind...

Cheers
Anna : )

 

[gijanet]

Well, you lost me about halfway through..........

Well, you lost me about halfway through..........

but from what I was able to decipher, I would definitely say that your concerns are NOT in your head! So what are they going to do about this? Did they have any suggestions at all? Would it be possible to send your results to another EP and get a second opinion? Just a thought. Hope and pray that you do get some answers/solutions soon. Many hugs.

 

[Nancy]

Gee, Anna-

How could anyone look at these findings and surmise that things are OK with you??? The amount of arrhythmias is pretty alarming, and must be showing some real stress on your heart, since they are all in different areas of your heart.

If they do not think that your heart is at the bottom of these problems, then what do they attribute these to?

You deserve a professional workup at a VERY large medical center which specializes in heart and lung problems. Mucking around any longer and just waiting for things to happen doesn't seem the right way to go.

If you have the equivalent of Cleveland Clinic there, see if you can get in there. Or maybe you should just try to get an online evaluation from Cleveland Clinic directly. I believe it costs somewhere around $600.00 American, and you will need your test results. Anyway you can contact them and they will tell you what you need to provide.

I think you've been much too patient with all of this.

 

[Karlynn]

What ongodsgreenearth are they waiting for? Your heart is obviously stressed and showing signs of stress. It looks to my very uneducated opinion that the aortic area of the heart is the cause. I continued to have more and more arrhythmia as my mitral valve got worse. They replaced my valve and the majority of the arrhythmia went away. All your valves are leaking. I was told that it is common for the tricuspid valve to have a trace leak. I have never been told that it's common for all valves to have a leak. You have a severe regurge problem with your aortic valve. Your aortic root is continuing to dialate. All 3 of your other valves are leaking - most likely due to the stress of the aortic regurge. What are they waiting for???????? It sounds like they are waiting to see more damage to the heart. But why? Did you get a report on the heart size? If it shows enlargement - someone is being way too cautious and to your detriment.

 

[tobagotwo]

You have a treasure trove of arrhythmias, which you can independently tie to symptoms. And you have severe pulmonary valve regurgitation. How can there even be a question about the heart condition's involvement? Doctors work in mysterious ways...

Arrhythmia is a very broad term that includes just about every way your heart's beat can misbehave, excepting only "normal sinus rhythm." As such, it doesn't mean your heart rate is actually faster, although that can be the case, such as in tachycardias. There are also slow beats (brachycardias). Mostly, though, it is misfires (PACs, PVCs, Afib, Vfib, couples, triplets, etc). Sometimes, a beat may include PACs or PVCs that make it seem like the heart has functioned more than once, but they are included as a part of one beat, based on completion of an intake-and-outflow cycle.

What makes more sense is to consider is that most of these arrhythmias cause the heart to pump inefficiently. The heart is not squeezing the right part at the right moment or in the right way to produce maximum throughput. You may be running at 60 beats per minute, but getting the value of 45, due to the inefficiencies of a poorly-timed or misfiring heart. This can be caused by many things, notably including electrical overstimulation and responses to damage, such as asymmetrical cardiac growth and valve misfunctions.

The heart is a wondrous mechanism, responding to an incredible number of stimuli to produce oxygenation on demand to a highly dynamic body system over which it has no direct control. And it's housed in one of the most corrosive environments on the planet. That it works as well as it does is a marvel. That it hiccups and misfires on occasion is exceedingly common and not surprising at all.

On a temporary basis, arrhythmias can cause symptoms like shortness of breath, dizziness, or the unpleasant feeling of palpitations. The long-term problems come when they happen too often or become "stuck" in a rhythm that is too inefficient to feed the body's needs. They can damage the heart over time, encourage thromboses (e.g. persistent atrial fibrillation), or even be a direct cause of death in extreme cases.

I don't understand your doctors' reluctance to acknowledge what appears to be a well-documented history of symptomatic valvular disease. One would think they would want to discuss lifestyle issues with you, things you could do to avoid symptoms or worsening of the situation, and eventual next steps.

Best wishes,

 

[KathyH]

You definately need get another opinion. If your oxygen levels are falling into the 80's while you are exercising your heart definately is not beating effectively, which is not surprising given your irregular heart rhythms. Are you able to get another opinion in your country?, I don't know much about the medical care there.
Kathy H

 

[Gemma]

Hey Anna,
If you've got multiple arrhythmias which coincide with symptoms, an enlarging aortic root, and severe pulmonary regurgitation, but it isn't your heart causing your problems, what do the doctors think it is????? What do your cardio and GP say about this? I know you had one doctor you really liked but can't remember if that was before or after your house move.
I'd guess another reason to avoid beta-blockers might be your low BP - beta-blockers as well as lowering HR also lower BP, and some can exacerbate arrhythmias too.
But really, what's going on with those Aussie docs? Do they need me to come down there and sort them out?!? You need some proper answers from them - otherwise, what's the point of doing all these tests if the results are being ignored?
Happy new year by the way!
Gemma.

 

[bvdr]

Boy, Anna! I don't think your symptoms are all in your head: they ARE
from your heart! You need to continue to aggresively seek out an answer.

 

[ALCapshaw2]

WHO interpreted those results and then declared that you were 'normal'? You REALLY need to get another interpretation, preferably from a cardiologist who specializes in ElectroPhysiology (EP). Is that possible?

I can give you the name of a GREAT Australian Surgeon, Dr. McGiffin. Unfortunately for you, he is now practicing at the University of Alabama Hospital in Birminggam (ALA).

All I can suggest is to keep seeking more opinions until you find someone who can tie all those observations together and come up with a proper diagnosis and hopefully a good treatment plan.

As Nancy says, " Never give up and never give in" (or vice versa).

'AL'

 

[Abbanabba]

Where would I be without you guys saving my sanity?!

Bob -
I always appreciate your comments and research (non professional (of course!)). I did quite a bit of research into this myself and found that supraventricular arrhythmias and monomorphic ectopics are considered pretty benign - even given the amount that I'm having, so that was somewhat of a comfort. The ventricular and polymorphic ectopics - particuarly in conjunction with the other things (PV regurg, RV and AR enlargement) can be far more sinister and should be monitored far more closely than anyone over here seems to be worried about. At the very least, I have to agree with you that even if the irregular beats aren't life-threatening, that surely they have to be decreasing the function of the heart and therefore causing some sort of symptoms.

Karlynn -
Although I have an enlarged aortic root, it's the pumonary valve with the severe regurge - the aortic valve regurg is trivial.... although that's probably not really the point. I do know some people have lived without pulmonary valves for some time (!!), but it seems the heart can cope without this valve as opposed to the others (..don't ask me why!..). Still, even without the PV, once the aortic root and right ventrical start expanding out of normal parameters, it seems this is when surgical intervention is normally required. I also believe it's not uncommon for many people to have trivial regurg in some of their valves, but maybe it's just never mentioned because it's not an issue (?). Like Bob said "the heart is a wondrous mechanism" (..and it's a wonder mine's still ticking along! ..).

Kathy, Al, Nancy, Janet -
I was hoping for more since the cardio I saw is one of a few in Australia specialising in adults with congenital heart issues, but I've been pretty disappointed. I'm going to see if I can find someone else for a second (..or is this about my 4th..) opinion. Regardless of anything else, I found her very difficult to talk to and her lack of explanations and accessibility makes me want to look elsewhere anyway.

Rachel -
It's all about quality of life, isn't it! If I had never been fit, had smoked, and lived on McDonalds all my life, then I wouldn't be getting so upset about my current state of health - but that's not the case. Sure, I might be doing much better than someone of my age with acquired heart disease, or some 90y/o heart patient, but for I'm not doing well for ME - and I think that's the part they forget... or choose to ignore. It's very frustrating.

Betty -
No, it's not my heart. I apparently just need anti-depressants!

Gemma -
COME ON DOWN!! I don't have the energy to kick a** like I used to! I did wonder if they put me on B-B's that even if my HR slowed right down, if they could just put a pacemaker in. It might not be an ideal solution, but gee, maybe I could start feeling better again! As far as the BP, if that were to drop then I could always take sodium tablets... hmmmmmm.... maybe it's all just wishful thinking.


Meanwhile, my next step is to see a PH guy in Melbourne.... just to make sure that's not causing me any problems (..or maybe to confirm that it is!..), then I'll look at seeing if I can find another ACHD cardio either in Melbourne or Sydney.

Thanks for giving me the support and the strength to keep on keeping on! I don't need to tell you how much it means, because I know you all know from your own battles.

Cheers and Happy New Year to you all,
Anna : )

 

[geebee]

Anna,
Someone needs to come and kick some butts of the doctors who say nothing is wrong. They truly have their heads buried. Any one of the irregularities found can cause the symptoms you are having. The combination just compounds things.
I agree with you that it is frustrating when a doctor only looks at documented items to analyze symptoms and ignores the patient telling him that she "doesn't feel right for HER". A change in one's ability to function as in the past is a sure indication that something is amiss. Despite many doctors' opinions, we DON'T make these things up - they are real problems.
I would be dead if I listened to some of the stupid advice I have received from doctors who didn't believe I had problems or were too lazy or incompetant to handle them.
Have you ever considered contacting the Cleveland or Mayo clinics to ask if they have knowledge of good cardios in Australia? Just a thought.
I wish you well in this frustrating effort to get Anna better.
Smiles,
Gina

 

[Abbanabba]

Despite many doctors' opinions, we DON'T make these things up - they are real problems.
I would be dead if I listened to some of the stupid advice I have received from doctors who didn't believe I had problems or were too lazy or incompetant to handle them.
Have you ever considered contacting the Cleveland or Mayo clinics to ask if they have knowledge of good cardios in Australia? Just a thought.
I wish you well in this frustrating effort to get Anna better.
Smiles,
Gina

Gina, I know several people who would be dead if they had listened to their doctors - scary isn't it! At least it's given me the strength to stand by my convictions, rather than thinking "gee, I've seen 3 different cardios now, so surely they must be right". It's also been encouraging reading other stories here where people have seen MULTIPLE cardios before getting appropriate treatment.

As far as contacting Cleveland or Mayo - I hadn't gotten to that stage yet, mainly because I had such high expectations for the clinic in Melbourne. It's a great suggestion though and one I'm seriously considering following up very soon.

Cheers
A : )

 

[Karlynn]

Anna, I realized after I posted that it is your PV, not your AV. Thinking back 13 years, they finally decided to do surgery because my mitral regurge was severe and my aortic valve had begun to leak. My heart had also started to enlarge. A severe regurge causes the heart to have to work much harder, placing stress on all the other valves. This is the reason other valves begin to leak in a person who has severe regurge. My echo last year showed a trivial leak of my tricuspid valve, along with a mild aortic leak (now back down to trivial ). My cardio said that most people have a slight tricuspid leak. That being said, I would not write off all 4 of your valves leaking as something that most people have. I think the fact that all 4 are leaking shows that your heart is under stress. Your rhythm issues also shows that. Presented with any one of your dx's or symptoms, I could see a doctor not getting too concerned (except for the severe regurge of the PV). But presented with all of your data, pictures and symptoms, I'm finding it hard to believe that a doctor isn't aggressively trying to find the best possible treatment.

One of my thoughts is that they are seeing your age, and your vibrant, spunky personality and thinking "Oh, she's doing okay, even if she's complaining she's not." (just a conjecture on my part) I can't tell you how many doctors I had that would look at my tests and data, listen to my symptoms and then say "Oh, you're too young to be having these problems." thus dismissing me. I really don't feel that doctors weigh Quality of Life when treating a young heart patient. I couldn't walk 2 blocks down the street to see my 4 year old son's t-ball game - but I was told I wasn't ready for surgery. I look back now and wished I'd raised holy hell.

 

[gijanet]

I've been thinking..............

I've been thinking..............

dangerous I know - don't want to create another deadly tidal wave. But several of our adult CHDers on here (and my other pediatric heart board) are treated at children's hospitals that specialize in congenital heart defects. Most of the larger pediatric heart centers do NOT charge for a second, third, fourth, etc., opinion. We sought out five for Katie (well, if you consider our local CH as one). I simply e-mailed their head surgeons (at UofM, TXCH, CHOP, CHOBoston) and asked about getting another opininion. All graciously said they would be happy to do so. I just had my PC send our latest echo, cath data and pics, and our then only surgical report to them. They all gave us their opinions at absolutely no cost - no charge to insurance - nothing, zilch, nada.

I am wondering if you can't do the same thing. I know Bryan had his surgery performed by Dr. Jaggers at Duke, who is primarily a pediatric heart surgeon. It certainly wouldn't hurt to e-mail some of these surgeons (in your spare time ) and ask if they would offer their opinion and what exactly they would need to do so. The worst they can do is say no, and I am willing to bet that at least one of them would give you an opinion. I would also add in my post somewhere the difficulty you are having finding someone who is familiar with adults with CHD. I am biased, but I would start with Dr. Bove (UofM) and Dr. Jaggers. Another good one might be Dr. Jonas as he just left Boston to start up a new program in Washington - I don't recall the name, but I could find out for you if you are interested. As many of our CHD children are surviving and becoming adults, most of the large institutions are beginning to expand departments who handle adults with CHD. Well, I have rambled long enough, but please shoot out a few e-mails when you get the chance. WHat can it hurt?

Hoping this was a brainstorm and not a braindrizzle. Many hugs and please do keep us posted.

 

[Alex]

Hi Anna,

I?m new around here. We seem to have some things in common I.E. PV regurg (mine is mod), Asthma, SOB, Active lifestyle and Diet. While I don?t have Arrhythmias (yet), I do have RVH. I didn?t realize how rare PV problems are. I can relate to your frustration regarding how fit you were and where you?re at now. Here?s a link to my story if you?re interested http://www.valvereplacement.com/forums/showthread.php?t=9346

I hope you don?t mind me asking a few questions?
With the severity of the PV regurg, you don?t mention RVH? Any signs of Edema? Is it possible that they are waiting for you do develop RVH before they do anything? How long did it take for you to go from Mod to Mod-Severe and finally Severe? What Asthma medication did they give you?

Alex

 

[Harrybaby666]

Hi Anna,

I?m new around here. We seem to have some things in common I.E. PV regurg (mine is mod), Asthma, SOB, Active lifestyle and Diet. While I don?t have Arrhythmias (yet), I do have RVH. I didn?t realize how rare PV problems are. I can relate to your frustration regarding how fit you were and where you?re at now.


With the severity of the PV regurg, you don?t mention RVH? Any signs of Edema? Is it possible that they are waiting for you do develop RVH before they do anything? How long did it take for you to go from Mod to Mod-Severe and finally Severe? What Asthma medication did they give you?

Alex

Hi Alex, I am Harrybaby, and I just had to respond to this....I am 38 and I also have asthma and leaky valves...I want to ask you...did the doctors check you for possible sleep apnea and Pulmonary Hypertension? The reason I say this is that Right Ventricular Hypertrophy goes right along with Pulmonary Hypertension and PH goes hand in hand with Sleep Apnea. I found this out just recently myself, and I thought it might be of help to you...while I am not at the stage for Valve Replacement as of yet, I do know that eventually it will get to that point, because I also have Congestive Heart Failure...I want to also mention, that I DID make the mistake of telling my parents about my issues, and while my mother is concerned and caring, my father, who absolutely REFUSED to take me or my brothers to the doctors as children, is totally oblivious to the fact that I am sick and just does not give a darn...(Although, what is strange, is he has no problem telling people he needs a heart transplant....No sympathy in return from me...) I guess what I am trying to say is I know you probably would like to be able to talk with your mum about this, but YOU ARE ONLY LOOKING OUT FOR HER HEALTH, AND YOU ARE DOING THE RIGHT THING IN PROTECTING HER HEALTH...I just wanted to add my support..I have stopped telling my parents anything because I don't want my mother to be upset and I don't feel as though my father has a right to know...Anyway, the people on this website are VERY VERY Supportive and there is alot of fun to be had with each and every one of us here at VR.com...I hope I have helped you in some small way...Take Care, and I hope you get through this with all the speed and grace that the man upstairs can deliver. Harrybaby666

 

[Alex]

Hi Harry,

Thanks for the support. I don?t feel like I?m stranded on an island anymore since I found this site.
PH is something I?m going to bring up with the cardio when I have my TEE in 2 weeks. From what I?ve been able to research, PH seems to be a logical possibility, hopefully secondary if it is.
I don?t have any signs or symptoms of Sleep Apnea.
I?m also hoping my SOB is a result of something I caught from the kids and short term. Doc said my lungs were inflamed but not infected and Asthma related. I still feel I can push myself physically like I always have, but am refraining until I find out the cause of all this.
I think I?ll refrain from telling my folks until it?s time to get operated, whenever that may be.

Alex

 

[Nancy]

Just wanted to mention that PH can be discovered with echocardiography, however that is a MOST inaccurate tool for determining with any certainty the right numbers. So it may show and it might be that you do not have it, conversely, it could also show at a very low level, and be there at a truly higher number.

However, once it shows up, it is important that you follow up with a specialist who knows how to measure and treat PH. It is such a rare disease that most doctors and even the disciplines of cardiology or pulmonology do not know how to diagnose it or treat it. They may never see a case of it in all their professional career.

The Right heart Cath. is the test that is used to determine final numbers of PH.

There are many very new, fine treatments for PH. Joe has it and it was severe. His was determined to be Primary. He is now on Tracleer which can only be prescribed by a specialist, and is very carefully monitored by the drug manufacturer and distributor. It saved his life.

With the population of valvers here, PH comes up much more often than it does in the general population.

 

[Abbanabba]

Karlynn -
Yep, I'm one of those people who usually downplays my illnesses - clearly to my detriment (..3 times I've spent several days on a dislocated knee before begrudgingly heading to the doctors (to be severly chastised )..). Even at the cardios I've joked around and made light of things. I guess that's just my way of coping with scary stuff, but clearly doctors don't have much of a sense of humour and obviously have been taking my flippant remarks seriously. I also have to wonder if because I've had these things since I was born if they think "well, you've done fine until now with funky beats and a murmer, so you should do OK for a while longer yet". I don't know....... who knows WHAT is going through their minds.

Janet -
Thanks for your brainstorming! The first cardio I saw was a ped-card, but he admitted he didn't know much about adults living with CHD..... and so the merry-go-round commenced. If you think you could give me a name (or two) I would really appreciate that - please drop me a PM or an email, that would be great.

Alex -
Hi, welcome to the board. I haven't had a chance to check your story out yet, but I'll be sure to do so. About the questions you asked:
Yes, I have right ventricular hypertropy - I have had it all my life and I wonder if this is why they're not really paying it much heed. I've had a murmer all my life which I guess has been from the PV leaking, but it's only recently that it seems to have worsened. In answer to your question about that, the regurge has gone from mod-severe 3 years ago to severe now. I don't know how bad it was prior to 2002 because I hadn't seen a cardio in about 17 years, so I've not really got anything to compare it to (..see what happens when they tell you you're "fixed"!! ..).
As far as I know I don't actually have asthma, although this is something I've been trying to get looked at for years (..I've mentioned to many doctors that I find it hard to breathe sometimes and "could it be asthma?", but none of them ever did anything to follow it up..).
I'm not sure if I've had any edema, or if I've just got my mother's "farm-girl peasant-legs" - complete with chunky thighs and ankles! I know over Christmas my ankles were looking really puffy (more so than normal), but whenever the cardios have checked, they've never noted anything out of the ordinary. Yesterday they didn't look too bad, so I have to wonder if it's just "normal" fluid retention, or something else to keep an eye on.
In the meantime, good luck with your TEE. Let us know how you go.

Harry -
My mother was much like your father. I remember spending 3 days and nights sitting up in a chair because I couldn't lay down due to it being too painful and going to the doctor wasn't even a consideration!! Looking back I guess I was having an episode of pericarditis (?!), and I wonder if this is why now I don't go to the doctor unless I'm practically knocking on death's door. We were "farm kids", so we were tough and you were just expected to "get over it".



A : )