pacemaker and valves

Aura

by AgentX86 - 2021-11-13 22:06:59

Are you having a problem with optical migranes?  It's my understanding that they're not dangerous, by themselves.  They certainly weirded me out for a while.  I haven't had one in any years, though.

A high percentage of right ventricular pacing can cause cardiomyopathy (which can then cause heart failure) but it occurs in a fairly low prcentages of cases.  This cardiomyopathy can often be reversed.  A regular echocardiogram once a year would probably be a good idea.

Yes, one of the wires (right ventricular) goes through the tricuspid valve and can hang up on one of the leafs of the valve.  Again, it's not common but stuff happens.

I hope you get some answers quickly

by Gemita - 2021-11-14 05:54:38

Pogerm1,

I am so sorry to hear of your difficulties and diagnoses.  I can understand your concerns about heart failure and worsening symptoms and why you are asking so many questions after 20 years of pacing.  I note you needed a pacemaker due to flat lining (pausing) when an Atrial Fibrillation (AF) episode converted to normal sinus rhythm. I used to get this pausing a lot too and it was one of the reasons for my pacemaker.  I am sure your pacemaker was needed and that your present symptoms are not due to any bad lifestyle habits, since you sound as though you are working hard to stay well.

Your doctor clearly wants to assess you by echocardiogram after you have been on a diuretic med to help relieve fluid retention and symptoms of heart failure.  Have you told your doctor you have stopped the diuretic so that he can find an alternative prior to your echo?  I would want my electrolytes to be checked at start and during any diuretic treatment to ensure electrolytes stay within normal range since if these are out, you can expect worsening AF and other arrhythmias and even migraine headaches, with aura, such as you describe. 

Looking at your history, you have several conditions which can lead to worsening symptoms, AF and Pulmonary Hypertension being major causes, both of which can lead to heart failure.  Personally I would be more concerned about the presence of these two conditions as well as severe triscupid leakage rather than focus on RV pacing percentages at this time.  I would want to know how to treat these three conditions more effectively with medication and/or with surgical procedures like an ablation for AF, valve replacement, inhalers if you have any lung disease.  I would specifically want to know the cause of my pulmonary hypertension so that any treatment will be more effective.  

It seems you need to have an urgent conversation with your doctors.  At that time you could discuss whether right ventricular pacing may have triggered or worsened some of your conditions?  I would want to know what can be done to stop any deterioration in your heart failure symptoms, perhaps even ask whether cardiac resynchronization therapy would be helpful?   Hopefully the echocardiogram will give them a good indication of what is required to keep you stable and to prevent worsening symptoms, although pulmonary hypertension may require a more invasive investigation (right side heart catheterization) to fully assess this condition. This is the only test that directly measures the pressure inside the pulmonary arteries to confirm diagnosis and assess degree of disease.

Pogerm1, I wish you all the very best.

Pacemakers and valves

by TAC - 2021-11-14 12:03:33

I have noticed that many members of this forum, want to do their own medical "research" into their health problems. In most cases, they end up confused and scared. My own approach to my health is:

1- To leave the worries about my health problems to my doctor, not me. After all, he is more objective and he has the expertise to figure out what's going on in my body.

2- To accept the fact that all the organs in our bodies have an expiration date, just like any machine. Depending on our age, those organs will show signs of wear and tear. Medical science cannot stop the aging of our organs. It can only attemp to compesate the effects of the decline. Eventually, that old organ is going to quit working. If it's a vital organ, you die.

3- Life is not infinite. Those who have reached or surpassed our life expectancy, must accept that we can die at anytime and from anything.  After accepting this reality, we can focus in trying to enjoy our lives as much as we can. Once we accept the worse of the outcomes, what else can worry us?

Medical Research

by Gemita - 2021-11-14 12:56:51

TAC, with respect, not all doctors “worry” about our health problems as we might and if we are not pro active in fighting our own corner and raising specific issues, they may remain unanswered and untreated when early intervention might have prevented progress of a condition.  This at least has been my own personal experience.

I agree wholeheartedly though with your points 2 and 3.  Sometimes we have to accept that a condition is not always curable, reversible and will progress whatever we do and acceptance can be very therapeutic, but we are human and we want to survive for as long as possible and not only survive but to enjoy a quality of life.  It is often necessary for us to take control, sometimes even to take the evidence in the form of data to our doctors when we get symptoms.  Often doctors encourage this today with all the advancements in technology.  For example home BP monitors and personal heart monitors like Kardia Mobile are used to record information for our doctors rather than waiting for them to arrange hospital monitoring.  We are equal partners in our care (according to my EP).

I agree, Google searches can lead to confusion and anxiety, imagining the very worse that might happen.  I have been there many times and I am sure you have too.  However, personal experience of a particular condition counts for a lot and with the extra information we may gain from research, we will be in a much better position to have a meaningful conversation with our doctors.

Hope you are doing okay

Medical...

by AgentX86 - 2021-11-14 17:44:34

I agree with you TAC, except your #1. 

 - You can't expect others, professional or not, to be as interested in your life than are you.

- You are responsible for you, no matter what.  The idea of "informed consent" requires information.

- If nothing else, understanding what's going on allows you to ask the right questions and comprehend the answers.

- Generally, doctors will spend more time with you and teach you more if they think you want to know. Many don't (see above) but you can't expect to know what's happening with spending some time learning.  If you won't do anything to educate yourself, the doctor isn't going to force-feed you.

pacemaker and valves

by pogerm1 - 2021-11-14 18:35:30

Agent X Yes they are optical migraines, there must be something in that water pill that triggered my migraine.  

I have a copy of my last echo and it does say that my pacemaker lead is in the right atrium and the right ventricle.  I have read that that can cause severe Tricuspid regurgatation.  I had to get a new pacer because the batteries were low so that was done in 2012,  I thought I was OK with the pacer but looks like I am not.

Pacemaker and valves

by pogerm1 - 2021-11-14 18:43:26

Gemita;

i have been going to U of M hospital in MIchigan, I am going to look around for another doctor that can interrogate my pacer.  Why would they put a pacer lead in the right Ventricle.  Does anybody know of a good heart doctor in Michigan?

I thank everyone for their replies.

U of M

by AgentX86 - 2021-11-14 21:51:19

I don't know anything about U of M specifically but I can't imagine that it could be other than a top notch hospital.  Large teaching hospitals, particularly those attached to large universities, attract the best medical staffs.

The second lead of all two-lead pacemakers goes into the right ventricle.  Its purpose is to pace the RV, so that's where it has to be. The LV wire, in a CRT pacemaker is also threaded into the RV, so that would be two leads through the tricuspid.  Many of us have CRT pacemakers without issue. It's unusual for the lead to damage the tricuspid valve but it does happen.  Apparently you drew the short straw.  It's not the fault of any doctor or medical facility. 

It's never a bad idea to get a second opinion but  doubt that you'll find a better hospital between Cleveland and Rochester.

Leads, heart failure, etc.

by Julros - 2021-11-14 23:50:37

pogerm1,  I am confused when you say you have  tricuspid regurg and pulmonary hypertension (PAH). And then say that RV pacing has caused your heart failure. TR and PAH are not the same as HF. PAH refers to increased pressure within the pulmonary arteries and could lead to TR. There are many causes for PAH and usually requires a right heart catheterization where a specialized catheter is threaded through the right side of the heart and measures pressures in the right atrium, RV, and pulmonary artery. Sometimes medication will be infused to assess response. If you cannot tolerate lasix, there are other diuretics that can be used. PAH is serious and good for you for seeking optimal care.  

 Yes, the second lead of two-lead ( dual chamber) pacers is placed in the right ventricle. Not everyone who is utilizes RV pacing develops heart failure, or a reduced ejection fraction. And for clarification, an LV lead is not inserted into the RV. It is threaded into the coronary sinus, and into a coronary vein that courses across the outside of the LV to the optimal site for pacing.

Best wishes on your journey 

Pacemakers and Valves

by pogerm1 - 2021-11-15 14:37:01

I got a message from my doctor:  and he said that he has gone over my last 2 echos and he said that he believes that the pacer wires have caused my leaking Tricuspid valve.  What do you know, I didn't talk to him about my theory but he confirmed it.  He also said that he didnt want to prescribe any other diuretic in my case.  I believe this doctor is a keeper.  The person that said we shoudn't be reading things that are on the internet is not correct.  It is your health/body read all that you can.

So now you know

by Gotrhythm - 2021-11-18 15:25:47

Glad to know you have a doctor who both listens and tells you how it is. A keeper indeed!

I agree that those of us with heart devices would do well to learn all we can. Even the best doctors are fallible human beings who can't possibly know everything. If they are right, everybody wins, but if they are wrong, or missed something, the person who has the most to lose is me. Even if everything goes right, I'm the one who will have to live with my condition. Therefore it behooves me to know enough to ask good questions.

Personally, I have found videos on Youtube to be invaluable in giving an explanation, understandable to the lay person, of How Things Work. When it comes to understanding how all the chambers and valves of the heart work together, plus where the pacemaker wires go, an animated moving picture is worth much more than 1,000 words.

Just so you know, when the lastest echo showed my tricuspid regurgitation had gone from mild to moderate, I went straigt to the internet and learned all I could about tricuspids and pacemakers.

Is the pacemaker wire causing the problem? Possibly. The echos done 2011 showed normal valves. On the other hand, without the pacemaker and the wire, I'd have died around 10 1/2 years ago. There's a potential downside to every medical intervention. On balance, I'll take the pacemaker.