News from Doctor today

All in our heads?

by Gemita - 2023-12-15 04:42:32

Janene, great report as always from you.  

Cardiologists deal with life and death situations and become hardened to these events, don't they.  They have to stay calm when dealing with a rhythm disturbance like VF or VT and to act quickly without emotion, to try to keep their patients alive.  

When your echo technologist told you you wouldn’t survive a year without your pacemaker, no doubt she was referring to “both” your low ejection fraction from heart failure that would be helped by a CRT device “and” to your life threatening arrhythmias that would be treated by your ICD while your heart function is so weak.   As I have said, your cardiologist has seen it all before and perhaps it is a good sign that they are not showing concern?   They know that you have a life saving combined device in place which has already proven its worth and that they can do nothing better to help you.

The driving.  Now that they have the “evidence” of a recent shock they want to take you off the road when you have been a potential risk to yourself and to other road users for all this time.  However you have only recently had evidence of a documented ICD shock and they start counting from now, although the evidence of your poor heart function has certainly been around for some time for all to see.

Here in the UK I see that if we receive a shock from our ICD that is correcting a potentially fatal arrhythmia, we must surrender our licence for 6 months.  If we were unconscious whilst we received the shock, the suspension would be two years, which can be reduced to 6 months if our cardiologist takes steps like starting or increasing meds, to prevent any further events requiring a shock, from happening. If we received an unnecessary shock (inappropriate shock), then we would receive a one-month suspension.

Miffed about your doctors not picking up the seriousness of your heart condition earlier?  I was too when my doctors kept telling me that I didn’t have any significant rhythm disturbances, that it was all in my head, or putting it down to simple ectopic beats caused by stress and anxiety.  I had to experience multiple faints and stroke like symptoms before my doctors would give me longer term monitoring which picked up my symptomatic arrhythmias causing syncope, pausing, brady and tachycardias, breathlessness, chest pain, instability and I could go on.

I was then immediately told I had to take an anticoagulant because of the stroke risk.  Well what about the stoke risk for all those years before they finally had some documented evidence?  That is why I also have a hard time relying on my doctors.  If I didn't believe in myself, in what my body was trying to tell me, I would indeed have been lost and probably dead by now from a stroke.

Unfortunately though arrhythmias are like that.  They hide and don’t happen when we want some evidence.  That is the nature of electrical disturbances.   Most of us have to go through some of this nonsense and frustration.   It is therefore vital that we keep up the pressure on our doctors to identify the culprit rhythms before they do lasting harm.  In your case you clearly had documented evidence of poor heart function so it was there for all to see when they tried to put it down to anxiety and stress.  An absolute disgrace, but I wouldn’t spend time and energy going over and over this and getting angry.  Save your strength and energy for what is important.

What I need... is a better ejection fraction you tell us.   Yes I wholeheartedly agree. That would certainly help to prevent a dangerous arrhythmia and improve your symptoms.  Perhaps when you see your technologist for another echo, she will have some better news?   Did your cardiologist change any of your medication or confirm whether the rhythm shocked was VF or VT?  Did your cardiologist confirm the number of shocks you received or exactly what therapy was given?  Essentially has your cardiologist given you confidence that everything is being done that can be done, to help prevent another shock from happening?

Driving etc.

by piglet22 - 2023-12-15 05:45:59

Hello

In the UK, you or your medics have to declare medical conditions that can affect your driving ability and safety, and rightly so.

Once declared, it goes to a panel who assess the risk. Over the age of 70, you have to reapply for your licence and fill out the declaration again.

It's a pain, but it's right. Not just you, but your vehicle gets tested once a year over the age of 3 years. It's the MOT test.

Of course, people go to great lengths to avoid any of this but eventually it catches up. If you are lucky, it's just a blue light stop, but if it goes wrong and someone gets killed because you can't see more than 3 metres or the brakes don't work then you end up in jail with a criminal conviction.

Heart conditions can turn you into a ticking time bomb behind the wheel.

Pacemakers have to be declared and are generally given the green light. In fact, properly managed with medication as appropriate, you will be safer than you were before.

Defibrillation is a different matter because of the unpredictability and presumably speed at which the intervention happens.

If I lost my licence because I was no longer safe to drive, it would make life difficult,, but I would have to accept bit.

Driving here is no fun so maybe I wouldn't miss it. Even cycling is dangerous now.

Figures show that the groups most likely to be involved in accidents are the 17 to early 20's and the over 86's regardless of medical conditions.

Personally, I think that there should be a driving assessment shortly after passing a driving test, then at every 10 years and finally every 3 years.

In the last month nor so, seven young men/teenagers have been killed in two driving incidents with others seriously injured.

Speed, inexperience, bravado possibly all factors. 

Maybe the injustice is that a teenager behind the wheel is more dangerous than you with a defibrillator, but that's the way it is.

Given a choice, I know whose vehicle I wouldn't get into.

Gemita

by R2D2 - 2023-12-15 13:01:13

This is what my doctor's notes say.

Janene M XXXXX is a 58-year-old woman with severe dilated NICM now s/p successful CRT-D implantation 7/2023, who returns to see me earlier than planned follow-up due to an appropriate shock for VF following a failed ATP burst while charging. This occurred on December 4. Average V rate was around 260 bpm, true VF, and responded to 1 attempt at a shock.

What is the difference between VF and VT? What does it mean? 

As for my perceived compitence of my doctors, all I know is that suddenly they are all concerned, as though this hasn't been an issue for a year plus 9 other years of concerning symptoms. Health care in the US is different than everywhere else. It's like they are afraid we might actually know something about our health. I've been researching heart failure since day one, constantly trying to update myself on natural and medical means to prolong my life. My previous cardiologist was not happy that I actually knew what he was talking about and required him to provide answers to my many questions. You're not supposed to know stuff. LOL! 

I spent several years just trying to get diagnosed; in my small community the health care system is really pathetic. The first time I was winded and felt chest pressure, Rob rushed me to the clinic in town. No tests were performed,  and they said it was asthma and gave me a breathing treatment! The next time I went to a different hospital, they said anxiety disorder.... I went to the emergency room several times, same symptoms, still.... anxiety disorder. I have NEVER had an issue with anxiety until my heart got weak. Now it's just part of my package.

Plus, the day I was diagnosed was due to excessive fluid in my lungs, so since it was life threatening,  they gave me an echo. You can't get expensive tests you need in the US unless you have excellent insurance or cash. 

Trust.... that's a valuable concept. One that I don't have in my care team. So far they weren't concerned they gave me C-diff by giving me an antibiotic they weren't supposed to prescribe, they keep pushing drugs on me that I don't want to chance, like Jardiance. And they aren't telling me the seriousness of my condition. If they would have explained everything I needed to hear, I would have gotten my device a year ago. 

Regardless.... today I feel like I'm hanging on by a thread. I need to use all my anti-anxiety tricks to smooth out. 

But hey... how come I'm feeling all kinds of new sensations since they tested my device yesterday? Weird twitches, pacing in different places, and heart rhythms that are new too? And last night it took forever to go to sleep, my heart kept beating at 90+ beats, then the pacemaker would slow it down, it did that for about an hour, making me light headed and weird feeling. Probably anxiety. LOL! 

I think you need some long distance hugs again

by Gemita - 2023-12-15 15:14:49

Dear Janene, thank you for all this information.  

So the diagnosis is severe dilated non ischaemic cardiomyopathy (NICM).  You ask what is the difference between VF and VT?   They are both dangerous arrhythmias since sustained VT can lead to VF, the most lethal of the two arrhythmias.  I give a definition of the two arrhythmias below:-

VF = ventricular fibrillation - The ventricles are fibrillating with this irregular arrhythmia and not pumping so the ventricles cannot fill up with blood between each beat or pump blood to the rest of the body effectively.  VF quickly results in cardiac arrest with loss of consciousness and no pulse.  Ventricular fibrillation is an emergency that requires immediate medical attention. It's the most frequent cause of sudden cardiac death.

VT = ventricular tachycardia - is a regular arrhythmia which starts from the ventricles too (the main pumping chambers of the heart).  Due to the speed of contraction and the origin of the beat, the heart may not have time to fully fill with blood before pumping. If the heart rhythm stays in VT it cannot pump blood effectively around the body which can lead to a drop in blood pressure causing syncope, or leading to cardiac arrest.  VT if left untreated can progress to VF, so both arrhythmias need treating immediately.

Hugs

by Penguin - 2023-12-15 15:32:24

Hi Janene, 

I was reading one of your other posts which said that you couldn't stop thinking about your serious heart condition at a time when you should be thinking about Christmas. 

This is a bit off topic, but as Gemita has mentioned that you sound like you need another set of hugs to get you back on track, I'll post it here. 

I was thinking that Christmas is a time when we give gifts to others and try to spread good will.  Although it may not be immediately obvious, you have been doing just that via these posts that you have accumulated on the forum, by opening up your heart and telling us just how you feel. 

The gift to us has been that we have got to know you (a little) and have all learned so much more about what it is like to live with a defibrillator.  That may sound a little corny, but it it does actually help people who frequent a forum to think more deeply about the people who post and what they may be facing - particularly at this time of year. 

In return, I hope that you now know that you can come here and vent (if you need to) or comfort yourself by surrounding yourself with people who (now) have a better understanding of what you face. 

Please try to concentrate on what you can do to look after yourself this Christmas, and who helps you feel better. As you've already worked out, there are people who will inform you and help you - like your nice echo lady. There's always someone with a good heart somewhere. Stick with them! 

Please take good care of yourself and find some comforting, safe and enjoyable distractions.

Best Wishes. 

The driving thing

by atiras - 2023-12-15 17:00:53

The driving thing is a pain, as I know from experience.

However, no matter how bad heart failure makes us feel, it doesn’t make us black out without warning whereas VF or a shock from an ICD will. It would really have annoyed me if my ICD saved my life only for my car kill me (and others).

How did I get so lucky?

by R2D2 - 2023-12-15 17:05:24

Word for word, I told my doctor yesterday that "The Pacemaker Club talked me down out of a tree." He just looked at me odd and didn't even concieve that I was trying to convey to him. I really don't think he realizes that the mental battle is critical for us, and if we lose that battle, we might as well throw in the towel. 

I can't express it enough how grateful I am for this club, you guys are the best Christmas present! 

So... the only thing I'm really struggling with today is the fact that I was so blindsighted by my episode, thought I was in such a good place. I wasn't over doing anything, or running a marathon. I was in my "safe place." Now... it's not safe anymore. I'm scared every time I get slightly dizzy, or when my heart does that weird roll thing, like you're in a ride at the amusement park. It just did it a minute ago and my mind immediately froze. The sad thing, is it's been doing that for years and I've been so conditioned to ignore it... I'm not sure how to get back on the horse again. But I'm going to try. Today I'm at my daughter's house, having a girl night which always puts me in a better mindset. 

Thanks for the "hugs".... much appreciated and of course right back at all of you! 

Well done, you beat the odds.

by ANDREW75 - 2023-12-15 17:06:41

R2d2,

Well done,

I have been following your threads over the weeks. I am so pleased to see an exact example of someone receiving help. It must be hard to go through issues as you have and have no one to turn too, thank you for exposing your frustration.

You got some good advice from people who have similar experiences, they gave you information and alternate viewpoints. A firing defibrillator surely would get the attention of your doctor, I am sure they were gratified and relieved with you having one.

What a relief you must have felt to write: “You were right…”

You also know the pacemaker works as it should, and trust it in the future.

These threads should be considered a life-saving success story.

We have an R2D2 in our house, it is a countertop oven! Love the name.

Thanks Andrew