Long Term Effects?

Hello All, I hope you are well,

 

It has been a long while since i've been on here, firstly i wanted to wish everyone thanks for their support over my last post, the messages both private and public where lovely. Sadly In april my mum lost her battle at age 38, and passed away, cancer is a horrible horrible disease. 

I mainly wanted to come on here to ask about complications of long term pacing. I have been doing really well lately, physically and mentally, but I stumbled upppn an article about long term RV pacing and heart failure, and I have not been able to stop thinking about it. 

I have been 100% RV  paced for 19 years due to 3rd degree AV heart block, and have had had no structural issues from it. Am i right to assume that after having it for so long with no real issue, I am one of those people who tolerate RV pacing? Or am I right having this constant panic at the moment that one day i'll feel awful and be told I have heart failure?

It is a real worry at the moment as everything seems to be coming together, and now this seemingly horrible complication has come to my knowledge and brought back some awful anxiety that I had worked so hard to take under control. 

Thank you everyone and I hope to speak to you soon,

Hayden 


9 Comments

So nice to hear from you

by Gemita - 2023-01-20 05:20:44

Hayden, I am truly sorry to hear about your dear Mother.  I had been following her progress and did recently see that she had passed away and wondered how you and the family were coping?  You did absolutely everything in your power to help your Mum and you can be very proud of what you achieved.  I send my best wishes to you and to your family and hope that as the days pass you will slowly replace the pain you feel with your happy memories growing up with such a kind and generous Mother.

Cancer is indeed a cruel cruel disease and sometimes there is no explanation for a patient’s illness which makes it even harder to accept.  A family member in Italy is presently fighting lung cancer Hayden.  It is so very difficult to know what to say anymore to his lovely family.  He has never smoked, always lived a healthy lifestyle, is a wonderful father and yet  . . .

Hayden, please try not to concern yourself over RV pacing and the potential to develop heart failure.  Many members are paced in their right ventricle 100% of the time and have been for years and are doing very well.  Your doctors will keep a close eye on you for any fall in your ejection fraction and step in quickly if ever signs of heart failure were to be noticed.  

Remember, it is not a “seemingly horrible complication that has come up” because it hasn’t come up and may never never come up Hayden.  Yes I think you can be reassured that after so long being paced, you are probably one of those lucky patients who tolerates RV pacing very well, since any cardiomyopathy from high burden RV pacing would probably have shown itself by now.  My doctor confirmed that if signs of heart failure were going to happen from pacing induced dyssynchrony, it would likely happen in the first couple of years but after say a period of 3-4 years with no adverse effects noticed from pacing, it probably will never happen.

To help ease your anxiety, you could ask your doctors what the plan would be should you ever develop signs of LV dyssynchrony or cardiomyopathy from RV pacing, whether an upgrade to a CRT pacemaker would be offered at your next battery change, or whether you could be considered for conduction system pacing?  As we age, we can all expect changes in our heart condition, whether or not we have pacemakers, so we all have to look after ourselves and be a step ahead.  Staying well, watching lifestyle and living the best lives we can is a better solution than worrying about what might happen.  It hasn't happened, may never happen and if you ask your EP he can reassure you or tell you what can be done should you ever develop signs of heart failure in the future.  

Hayden it was reassuring to hear from you.  After what you and the family have had to face, I have every confidence that you will do well in the future xx

Gemita, Thank you

by PacerPrice - 2023-01-20 07:09:29

Hello Gemita, it is so lovely to hear from you 

Thank you very much for your kind words, it has been a hard and horrible 9 months, but slowly I am coming to terms with things. My family and I are staying close through these times to help with the loss, 3 such important family members gone in such quick succession. 

I am sorry to hear about your family member, and I wish them, yourself, and your family all of my hope and love. 

Your words on RV pacing have been extremely helpful thank you, and your note on issues developing sooner into initial RV pacing are really reassuring, as as i noted i have been 100% RV paced for 19 years. I think speaking to the doctors from a point of view of anxiety is a really useful idea. I just am worried now that this is a potential issue, and worry that at such a young age I won't have a proper life to fulfill if this is something i need to be constantly worried about. 

I have been tired and dizzy a lot lately, which makes things worse as I am not sure if they are an issue or my anxiety. my anxiety seems to mimic the symptoms of things im worried about, which really doesn't help. If there was some real issue going on would the symptoms be very bad and enough to make you realise it's not just being tired?

 

Thank you so much as always, wishing you all the best,

Hayden x

Tiredness and Dizziness can have many causes

by Gemita - 2023-01-20 07:42:33

Hayden, all I can say is that you have been through so much and all of your symptoms could be due to stress.  Nonetheless, although tiredness is very very common (and so is dizziness), any sudden dizziness should be checked to make sure that there isn’t a problem with pacing or with your heart, like an arrhythmia or even with medication.   I don’t know if you can go along to see your GP one day and explain the symptoms you are getting.  She can do a few checks to see if she can find the cause for your symptoms.  I think that would be best.  And don't forget to drink more water.  Dehydration can cause many symptoms.

I know anxiety can cause many difficult symptoms too.  I can remember when I was diagnosed with cancer many years ago, my fear of what was going on inside my body caused widespread symptoms, far in excess of those expected from my cancer.  I imagined the very worst.  As soon as I received reassurance that something could be done to treat my tumour, I made an astonishing recovery even before the tumour was “actually” removed, so anxiety and stress is most definitely bad for us.

So, as you have been through so much, please go along and have a few checks with your GP, or ask your pacemaker clinic whether you could have a device check?   This is what I did for hubby when he recently had a dizzy spell.  As a result he now has a home monitor since they correlated his dizziness to an atrial fibrillation/non sustained VT episode and to one of his meds.  He is now stable again.

How bad are your symptoms.  Do you lose balance, for example, or do you just feel slightly dizzy?  Think about how your symptoms affect your life and if they do, you need an opinion from your doctor dear Hayden xx

I will get that booked in

by PacerPrice - 2023-01-20 08:34:47

Thank you again,

 

I will make sure to get an appointment booked in with the GP, I think you are right that that is the best course of action. 

The dizziness isn't too bad, more of a light headed feel. And the constant tiredness aswell is also most likely stress and anxiety, but I will speak to the GP about, thank you for that suggestion. 

I really think the major physical manifestations anxiety, stress and even depression can have on your body is something that needs to be spoken about more, it can be extremely frightening,

 

Thank you again as always,

Hayden x

long term pacing

by Tracey_E - 2023-01-20 09:30:57

I've been paced 28 years and see an adult congenital ep, so he sees people like us all day long. He said that if there are no ill effects by 5 years, he very rarely sees it happen later. So we are both well past that window. 

 

Hugs and sigh

by Lavender - 2023-01-20 10:04:27

In reading your story, and your mom's history as well as your sister's, I am thinking it is natural for you to have post traumatic stress disorder. The brain sees and thinks DANGER!  It can be dealt with, though. You have to train your brain that all is well. 
 

Taking walks in nature helps. Quiet moments listening to your favorite music helps. Be good to yourself. It's good to have a doctor check you over but you also might benefit from grief counseling.  
 

You probably have a feeling of impending doom given all that your young self has endured. Your loved ones who have gone on to their reward no longer have any pain or anxiety. They wouldn't want you to be upset. They would want you to live for them. Do something fun. May God bring peacefulness and healing into your world. May your spirit be revived. May joy come. 
 

I am sorry to hear of the passing of your loved ones. May they enjoy paradise and may you feel their comforting spirit. 
 

I am 100% paced in both ventricles. 42%atrial. 

Long-term effects

by Good Dog - 2023-01-20 10:22:48

Hi Hayden,

I am so sorry to hear about your Mom. Life sure can deal us some cruel blows sometimes. It seems like you are a very mature and intelligent young man that has dealt with it very well. About as well as anyone could. It seems like you also have a great family that has helped by providing some much needed support through all of this. I admire your strength!

I certainly agree with everything that Gemita has said. She is wise and I always value her input very highly. I have been AV paced for 36+ years since 2 weeks after my 38th birthday. I am happy to say that like most folks, I did not have any serious problems for that entire time. Most recently (in the last few years), my ejection fraction has begun to drop which indicates that I am now in the early stages of PM induced cardiomyopathy. I am currently asymptomatic and feel pretty good for a 74 year old that has not taken particularly good care of himself for many of those years. As Gemita indicated, if/and/or when my cardiomyopathy get worse in time, a simple solution is to convert my 2 lead dual chamber PM to a 3 lead CRT. My point is; that even in the worst case scenario the latest technology has provided solutions that help to ensure we can continue a full-life well into old age. So as far as worrying about negative long-term effects of pacing: not to worry! Besides, there is a high likelihood (as Tracy said) that you will never any negative impacts from being paced. Many/most people do not!

I don't know what you RV lead placement is, but mine is at the apex which is the worst (most likely to cause HF - remodeling after many, many years of pacing). I tell you this only, because there are other possibilities to learn about that could preclude PM syndrome if you require new leads and/or a lead extraction in the interim. You may already have an optimal lead placement, I don't know. However, if not, you should read-up on HIS Bundle lead placement and the benefits of septal vs. apical lead placement in the RV. The point being; you may have an opportunity in the future to improve your pacing system, and learning about your alternatives may prove to be helpful in enabling you to advocate for yourself. You may already have great care and may never need to be your own best advocate, but it never hurts to be prepared. Learning more is absolutely optional. Most people do not and just leave that up to the doctors. So it is your choice and just a suggestion.

In any case, rest assured that you have a long life ahead of you. I hope you will not spend it worrying about something that may never occur. Instead, as you are doing now, learn what you can to help yourself and then just get out there and enjoy it!

I wish you the very best!

Sincerely,

Dave

Thank you

by PacerPrice - 2023-01-20 14:02:39

Thank you everyone for your reassuring messages, it really means a lot. 

 

Tracey, your message is extremely reassuring, thank you very much for that. 

Lavender, Thank you. It has been extremely difficult but we are l getting through it, i think some grief counselling will do me a lot of good thank you. I will try my best to keep my mental wellness a priority. 

Thank you very much Dave for your insight, it is very reassuring and has helped a lot 

So sorry to hear your news

by FletchP - 2023-02-04 14:20:28

Hi Hayden I am new to the forum, just wanted to say I am so very sorry for you in the loss of your Mother.  Sending love and hugs to you xxx

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