Icd

I am new here. I am 45yrs  old and have had a icd for 2 months. What i need to know is when will i start to feel better again? If i must be honest i had felt more better before the implant. Much better in fact!  That being said please pray that God gives my dr a reason to remove my implant. 


11 Comments

Your new ICD

by Gemita - 2020-12-31 05:35:06

Dear Alli,

I think many of us have felt the way you do right now and it is not a nice place to be.  It took me several months to feel better with my new pacemaker and I was beginning to think I and my doctors had made a big mistake to implant one.  

You are young, you have your whole life ahead of you and it will get better.  Two months is still within the healing period and your heart and you have to get used to pacing.  Because you have an ICD, I am assuming you have some significant heart rhythm distrubances that need firm control to keep you safe.  Therefore you obviously need your ICD.

Do not be afraid to speak to your pacemaker clinic for advice if something is troubling you.  At first my heart rhythm was worse until I got used to pacing.  There is a lot they can do to help us overcome any pacing symptoms we might have initially, but they usually like to see how well we manage with the settings they have given us first before they go in and change anything.  Are you on any medication?  Your medication may need reviewing now that you have a pacemaker, for example.  Mine did.

Please try not to get disheartened and I would give it a little more time to settle in but would advise that if you have any significant symptoms like breathlessness, chest pain, dizzy spells, weakness, to contact your doctors.  I wish you well very soon

Feel Better

by Keithwhelpley - 2020-12-31 14:18:23

Alli, I have had a dual chamber PM/ICD for most of 3 years. I had a very long time feeling poorly -- most of three years. So, I know how you feel. But the bottom line is these devices are meant to make us feel MUCH better than before having them and/or simply save your life if the worst happens (that is what the ICD if for). But if the implant went well and the hardware is working, you need more than 2 months to make a determination.

In my experience, it was never the ICD that made me feel poorly. It was the pacemaker. The ICD is simply a guard dog -- there to protect you. While the pacemaker, depending upon what mode you are set for, has continual engagement with your heart so has the potential to make you feel pretty badly, as in my case.

If you have just an ICD, then I would guess it is your condition rather than the device that is making you feel poorly.

Here is what you should SERIOUSLY do while giving this thing inside you enough time to make you feel better. Focus on your diet. This is big. Rebuild your diet to contain, first and foremost nutrients, preferably from whole foods. Chose some supplements that help your heart -- namely magnesium. This is hard for some people, but it is a must for we cardiac patients. What this does, when it's time, it gives you clearer information about what might be ailing you. A crappy diet places undue stresses on our system and throws out symptoms that we always attribute to our heart. 

Then, when it's time start talking with your doctor about specific aches and pains, you won't mistake the three pounds of pasta you ate for problem with your device. And if you do have a pacemaker, it is IMPERATIVE you know everything about it and the settings and modes. Don't leave it exclusively to your doctors to know. Research, research, research. 

Icd

by Alli - 2020-12-31 18:00:52

Yes i did my research, right after it was all over. That was stupid on my part. What gets me is my so called hillbilly dr, thats what i call these low grade Ky drs due to their Toys R Us education, he did Not tell me everything. He did not tell i would take 6-10wks to heal. He did not tell me i would need to recharge my device yearly. He did not tell me i would not be able to use my left arm anymore. There was one other thing i forgot but ..ohhh he did not tell me i'd feel pain everyday. That tells me he is the kind who did this for the money. I can't reach him it seems he is always busy 24/7. Another question is do any of you feel weakness or fatigue? I do most of the time. What a huge mistake this was i sooo miss my other life. I'd rather face cardiac arrest. You know i can still die of a heart attack?  Yes this implanr was done strictly for money. Drs don't have me fooled!

Hillbilly Doctor

by AgentX86 - 2020-12-31 23:56:55

Sometimes doctors do act without regard for their patients but it's not common.  More often they're indifferent and this year, simply burned out.  I'm sure KY has some very good doctors, particularly in the larger cities, like Louisille and Lexingon.  I wouldn't go anywhere but a large, preferably teaching, hospital for anything serious in any case.  Fortunately, there are several nearby me. 

It shouldn't take 6-10 weeks to heal, depending on what you mean by "heal".  Your incision should be fully closed within days and healed over within a week.  Significant pain shouldn't last longer than a week, maybe two.  If it does, it should be taken seriously and not dismissed out of hand, without at least a good explanation.  Anything they do to you should have a good explanation and you should be able to get answers within a reasonable amout of time..  If any of this isn't to your liking, find another EP.

Pacemakers don't need to, and in fact cannot, be recharged.  They must be replaced at the end of their battery lifetime, usually six to fifteen years.  There is ongoing monitoring but that should be expected by anyone.  There is ongoing appointments with primary care physicians, even for perfectly healthy people.

Yes, you should be able to reach your doctor, or at least his nurse (who can relay information).  I can "email" (hospital messaging system) him, as well.  I'm sure someone filters it but I've had very good results for simple requests.

Weakness and fatigue shouldn't be worse after implant than before but perhaps your pacemaker needs some tuning.  Everyone is different and their pacemaker has to be tuned to their needs, and even wants.  Did they change meds?  Meds are far more likely to cause fatigure than a PM, particularly things like beta blockers like metoprolol (anything ending in -olol).  Adjusting or changing meds can help a lot.

You have valid complaints but you'll have to look after yourself. Bottom line: If you're not happy with the way you're being treated, find a medical team you're happy with. If you got an ICD, you needed it.   You say you'd rather die of SCA but I'm not buying it.

You need to find a new doctor you can trust and work with

by Gemita - 2021-01-01 04:29:03

Agent X86 and Keithwhelpley have given excellent advice.

Your response to our messages made me realise that you have absolutely no confidence or respect in your current doctor or ICD team.  When confidence and trust breaks down, sadly it is time to move on.  In your shoes I would not stay with them a moment longer.  Your well being and peace of mind are at stake here.   With the right doctor you will hopefully make progress and come to the right decision about any future care.

I do not accept some of your statements though Alli which I feel have been made in anger.  

"He did not tell me I would not be able to use my left arm anymore".  Not true.  Of course you will be able to use your left arm again.  You may need longer to heal or you may have developed a stiff shoulder (frozen shoulder) from no or limited advice on aftercare, and the need to keep the left arm gently mobilised. Lack of adequate movement in the initial stages can lead to this painful condition which can then take a long time to resolve.  

“He did not tell me I would feel pain everyday”.  Not true.  You may still feel pain now but every day, forever, this would be highly unlikely Alli.

“He did not tell me I would need to recharge my device yearly”.   Not true.  Do you mean “have a yearly check up”, that would be closer to the truth?  

Sorry but you seem to have made a lot of false statements so far Alli.

Weakness and fatigue is something that I can experience daily too and regularly.  But of course weakness and fatigue can have many causes, not necessarily due to implant of ICD.  I usually experience these symptoms when I have heart rhythm problems which causes sudden changes in blood pressure and heart rate.  Yes it is true a pacemaker (without a defibrillator) cannot stop an arrhythmia but your defibrillator is certainly able to stop a dangerous heart rhythm when it detects one.  This protection is vital to keep you safe and is no doubt the reason why you have an ICD?  I am assuming tests you had before your ICD implant confirmed you had a need for an ICD, but a second opinion doctor should be able to confirm your diagnosis when he/she goes over your medical history with you and then hopefully put your mind at rest

 

DEFIBRILLATOR

by Alli - 2021-01-01 08:17:56

Let me set everyone straight here. I have a defibrillator, Not a PM. Ok let me continue. Agentx86, yes there are better drs at Louis. and Lex. However i am 500m from those places. By healing i mean no pain, no worries. My dr upped my med Caradillol (i know that is spelled wrong) but i can't tell a difference and it has been 2 months. As for dying i was ready to go at the discovery of another illlness. And i am not one of those lily-livered cowards afraid of death. I embrace it. Smiles.

DEFIBRILLATOR

by Alli - 2021-01-01 08:32:44

For Gemita, no i cannot respect dumbells. You'd be angry to if you had to suffer like i do. But i tell no lies, my dr didn't mention any of things i said. I know why now...it is because i would've said no to the entire surgery and knocked him out of thousands of dollars. Drs love their money you know. Well which is it, raised arm or not? Now i cannot raise my left arm over my head. Frankly i felt better and was able to exercise/walk before. Now i can't do that without feeling slowed down or breathless and the Thud Thud Thud hurts my chest, which i was never told about either, thanks hillbillies!  I will continue to pray God gets me out of this awful mess-finds another SMART dr.

It will get better

by Gemita - 2021-01-01 11:15:59

Dear Alli,

Perhaps being older has something to do with it, but I have never found the emotion “anger” to be a helpful one for me.  It is very stressful for the body and will have negative affects on our relationship with others.  That doesn’t mean that I don’t understand what you are going through and why you are angry and I apologise if I sound uncaring.  I have been angry with many doctors over my lifetime because of sub optimal care for which I and my husband have suffered, but anger has never helped us to deal with a difficult situation.  Instead a more controlled, forgiving approach has helped us to receive the medical care we deserved.  I feel your emotions may be getting in the way of dealing with this situation.  

Not all doctors are dumbbells.  Not all doctors live just for money.  Most doctors genuinely care about their patients and want to do their very best for them.  There will always be exceptions and perhaps you have been unlucky Alli, but we need to focus now on what we can do to try to help you to recover your peace of mind and to get the medical help you so need for your physical symptoms, that is the priority now rather than focus on why this has happened.  When you are feeling stronger and have found a new doctor to take care of you, if you still feel aggrieved, then perhaps you can take it up with the necessary authorities and report the doctor in question, so that he will have to address your concerns.  But that should ideally wait until you are stronger and fully recovered, in my opinion.

Do you have a general doctor you could talk to about all the implant problems that you have, especially the painful, immobile left arm?  It could be that physiotherapy is now needed to get things moving again.  After 6 weeks I was told I could raise my pacemaker side left arm above my head, for example to wash my hair (in your case your ICD side left arm).  It needs mobilising now.

I am glad you have your beliefs to hold on to.  I hope your God will help you to find a way through your difficulties, but God cannot do the work for you.  You have to find an alternative doctor to take over your care, someone that you can talk to, respect and feel safe with.  This is very important.  I do sincerely wish you well Alli and if you ever need to talk, we are always here if you feel we can help.

Carvedilol is a beta blocker to treat high blood pressure, left ventricular dysfunction and heart failure.  It is a non-selective betablocker which means it can affect many organs and possibly cause more side effects than a selective betablocker like say Bisoprolol.  I would ask your general doctor whether this might be causing any worsening breathlessness (at your higher dose) and whether a lower dose or medication change might help you ?  Might be worth asking about.  There will be an answer, if you can find it.  Heart problems need careful handling, trial and error with meds, procedures and lifestyle changes.  It takes time and patience to overcome our difficulties and of course a forgiving nature.  God is all forgiving and all patient Alli, can you be too?

Carvedilol

by AgentX86 - 2021-01-01 13:07:19

There you go.  As Gemita says, carvedilol is a beta blocker.  Beta blockers are famous for knocking the crap out of people, particularly in larger doses.  Some can't tolerate any amount of some of them.  They have to be balanced for you and if one doesn't work, there are dozens more of them  that you may tolerate better.  If not, there are other alternatives.

Pacemakers (almost all ICDs are pcemakers) are complicated devices and our interaction with them is even more complicated. Your doctors can't know what you're feeling and you should be prepared to talk intelligently about your condition. You really have to be your own advocate.

I think you're exagerating.  The furthest point in Kentucky from Lexington is 300mi, still a long way and from there 200 to Memphis or Nashville (and Paducah is closer), so it is a ways but not 500mi.  Again, not knowing anything about your regional hospitals (learn!) I'd certainly go to any of those places.  I know people travel across the country to see an EP or cardiologist (my brother is one).

To answer your most recent questions: Sure, doctors love their money.  So do I.  Sorry but medicine isn't a charity and neither am I.  You must move your arm, as much as possible, as you normally would from the day of surgery.  The exceptions being reaching above your head, behind your back, or fully extend your arm, for a month.  If you don't use your arm at all, your shoulder will freeze causing untold pain and probably requiring very painful physical therapy.  It sounds like that's where you are.

Your symptoms of being slowed down and shortness of breath probably mean that your pacemaker needs tuning or that your cavedlol is knocking the slats out of you.  Either case is completely soluble.  There is no reason that you shouldn't be able to get back where you were before the PM.  You should be able to do much better.

We're not trying to yell at you or to tell you're you're stupid and your doctors perfect.  We're trying to tell you that there are solutions.  No, I'm not buying that you'd rather die.  Your actions speak otherwise.

ICD

by islandgirl - 2021-01-02 12:28:13

I have had an ICD for just over 4 years and it has saved my life many times with runs of ventricular tachycardia and a full arrest and asystole just over a year ago.  It was originally implanted due to a cardiac arrest.  

I'm not sure why they decided on implanting an ICD, but accept it as a safety device.  Find out why you had to get it implanted.  

I am sorry but I think you need to educate yourself.

by asully - 2021-01-03 12:51:59

If you have an illness that requires you to have an ICD, you need to learn as much as you can about your condition, treatments, and your medications.  I feel that it is an accurate assumption to make that you have some SERIOUS health issues.  I can understand getting frustrated with doctors (believe me I do ALL the time), but you have no ground to stand on if you are not working from an educated (and by this I do not mean reading a few random blog posts that pop up on google) understanding of what is going on.  Also no doctor, will take you seriously if you shout about things that you are clearly wrong about.  Anyways, that's my two cents.  As for taking it out, it is your right to have a "life support" device removed or turned off but it will be hard to find a doctor who will do so, and if it is going to ultimately cause you to die you will likely need to get signed off by at least two psychologists.  Maybe you should start by seeing a psychologist first to get the process moving?

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