Lots

Advice

by docklock - 2023-05-02 22:25:06

I truly hope someone here can offer some advice.  But honestly, I wouldn't know where to start.  

A difficult post to answer

by Gemita - 2023-05-03 02:28:26

Dear Rose, 

I echo docklock’s gentle, wise thoughts.  

I help moderate the posts that come in here and it always saddens me when we receive posts asking for help to explant a pacemaker.  Unfortunately, and it has to be said, some such posts deliberately set out to disturb members, although the majority of posts like yours are from genuinely distressed members looking for answers and relief from their symptoms.  

The purpose of this Club is to try to help members live a better life with their pacemakers, to help them to understand why they have a pacemaker and to help them to seek appropriate help from a medical professional when something goes wrong.  We are here primarily to “support” members with pacemakers and personally I would find it extremely difficult to give advice on a potential “explant” without first hearing all the facts, from both sides, leading up to a member receiving a pacemaker.

The best advice I can give you is to seek professional help for your difficulties, so that whatever decision you come to in the future will be the right one and a safe one for you.  This might involve seeking the help of both a counsellor as well as a caring expert doctor who you will have confidence in, so that you can talk things through properly.  Unfortunately electrical disturbances of the heart can be so variable but there is usually a confirmed initial diagnosis and need for a pacemaker before one is implanted.  To do otherwise would be highly unusual and unprofessional.  Since electrical disturbances of the heart can change rapidly for the worst, you need expert medical advice before considering the explant route.

I send you my very best wishes for the future and hope that you come to a "safe" decision.

Rose

by piglet22 - 2023-05-03 06:41:01

That sounds like a pretty awful experience and is not the norm.

I do complain on here about access to "after sales" service, but the diagnosis and actual implantations were always good.

So much of how you perceive your cardiology service can be formed in the first few minutes.

It's very easy to detect whether or not you are going to like things or not, and a badly led department can resonate throughout down to the physiologists.

I'm sure they aren't in the business of implanting devices unnecessarily, but by the sounds of it, you need to be able to speak to someone preferably in the cardiology department in a quiet and caring appointment.

Of course accidents can happen and you have every right to take them up on that, but take care not to alienate your medics. There are also many reports of treatments like meshes that do go wrong, so it can happen.

Give them a chance, but if that doesn't work, then take some action.

Most people here will tell you that having a PM has changed their condition and their life for the better, but do get it resolved

Follow up

by The Rose - 2023-05-03 09:06:24

Thank you all so much.  I didn't realize I'd upset others. Are we all so thin skinned these days?   I'm desperately seeking answers.  This device has been a total nightmare and I feel no better and much worse since the implant.  I've had bad experience after bad.  

I'm reasonably sound and in good emotional health.  However, since sadly, no one here walked the journey with me, seeing and understanding isn't possible.  Appreciate, but am offended by recommendations to visit a shrink.  The pain is real as is my body's rejection.  I know the difference.  Now that my brain is clear of drugs, and able to fight back, more is being revealed (like a bad adjustment that caused severe tachycardia and everyone says, it happens...).  I'm your canary in the bad mine.

To all, I so appreciate all your lovely and kind comments.  It's been a horrific journey and I believe I'm having a reaction to something on the pacer and leads.  I shouldn't feel so much pain.  It may take me a while to find the correct doctor.  Though, the new ones seem excellent and compassionate.  They are not addressing the pain issue.  I'm tired of pushing and should have never agreed to this mess.  I'm unique due to lots of chemical allergies, and now, it seems, metal implant allergies.

Regarding putting in a device not needed, I've had similar experiences with doctors.  Worse, this time, they pushed this so hard, and did so many brain twists, I wouldn't be surprised if that did happen.  Worse, I had to refuse things like a venitlator (they earn approximately $40k, for each one)  I walked in under my own steam and breath, but was weakened by a few other factors.  I absolutely did not need a ventilator.  That would have killed me.  

I always turn out correct, and doctors eventually state oh my, you were right., this is so unusual  I don't wish to be correct, but I've suffered tremendously.  I keep recalling someone else's post regarding suffering for a year before everything settled.  Miy body is rejecting this device.  

Thanks for the assistance.  I probably won't post much again as I don't want to inflict any emotional pain on anyone.  People here really need the device and it's helped them greatly.  That's wonderful absolutely wonderful.  It's not an easy adjustment, I'm a tough bird and will find a way to handle this issue.

Blessings and prayers for great health to all.

Rose

by piglet22 - 2023-05-03 09:46:09

Don't worry.

You won't upset anyone here. Most are old hands and have been through worse.

The UK contingent are having to put up with strikes right across the NHS and right now, you would be glad to see anyone.

It's early days and you need to give things a chance to settle in.

If you do take the medics on and prove them wrong, please do let us know how you get on.

Some of us have a good idea of just how difficult it can be to get someone to listen, so any information would be useful.

I, for one, don't get upset. Life's too short.

How to manage.

by Selwyn - 2023-05-03 13:42:57

Thank you for your post, The Rose. Who would not be angry?  What a terrible situation to find yourself in. My sympathy. 

There is no doubt that some health problems are badly managed. No human being can be right 100% of the time. 

Having suffered, and continuing to suffer, on the receiving end, the question is how to manage the future?

I would suggest that you attend or get more than one medical opinion. This reduces your chances of a spurious opinion, and ensures that you get an overall opinion that is supported by the majoriity of good medical practitioners.   The ability to listen and evaluate those opinions is best done with a level head. I would try to obtain a good general medical practitioner, who is not emotionally involved in your distress to bring to you some evaluation of those opinions. The choice of how to procede is then one for your own insight, having had the benefit trying to extract what should be a trend of thought from those opinions. 

I do not know how the USA works. In the UK, you are entitled to a second opinion ( sometimes the specialists themselves organise this, sometimes the general practitioner)  and indeed for more difficult management problems you can get further  opinions and the benefit of multi disciplinary team meetings. 

It would be great if you stayed in contact and let us know how you are getting on. I am sure that no matter what the problem, the fact that you can put a few words down about it means that you are organising your thoughts. This can only be helpful to you, and may be an example to others, as long as there is no personal offence. 

With best wishes.

Lots

by AgentX86 - 2023-05-03 15:13:24

Unfortunately, no one here is likely to be able to help you, since none have been in your shoes.  However, if it's that bad you should get a second opinion or just fire them and start over with a new group.  I'm pretty familliar with Illinois but don't know if you're in a big city or endless corn but there are many excellent hospitals throughout the state. You need help from someone you can trust.

Traumatic Experience

by SeenBetterDays - 2023-05-04 10:09:55

I'm so sorry you've gone through such a terrible experience and can absolutely understand your need to take back control of the situation.  Loss of trust and confidence in those treating you is a difficult and lonely place to find yourself. I am assuming that, in seeking removal of the device, you would need evidence to support your decision. Is it possible for you to get a download of the data from your pacemaker? If this clearly showed that no pacing was taking place, could that be your evidence base. Alternatively, could you get any allergy testing done to determine if you have any intolerances to the materials in your device. From what you have said, you feel that your body is effectively rejecting the pacemaker. Again, if you have testing which supports this theory it may add weight to your argument. Obviously, having the device removed would pose its own risks so this is also something you would need to weigh up. If you can find a medical professional you can trust and who can talk through your options so that you can make a fully informed decision, then that might be your best route. Please let us know how you get on and I really hope you manage to get this horrible situation resolved.

Thank you all so much!

by The Rose - 2023-05-04 15:52:39

I so appreciate your kind words.

I spent yesterday at the dermatologist's office having him scrape off the stitches that poked through my skin from this horror story.  Guess what, they used glue for my top layers of skin.

I'm working through making an appointment for removal.  I just left my information with another doctor and they're evaluating my case.  

I will ask for tests.  I did warn them about the metal issue and they poo pooed it.  I'm betting it is that and the other materials.  I should not have this much pain across, and down my chest, etc.  I have no angina or blocks or other issues.  

Thank you all for your support.  It's most appreciated. 

Started pushing up the excercise as the medicines made me gain weight and I suspect caused part of this issue.  No wonder I was worse off during my hospital stay.  They ignored everything I very clearly conveyed every single day.  Sorry I didn't walk out as I wanted to do.  I trusted those who should not be trusted.  

Prayers to all of you and hopefully, am on a better path.  

More to come.

Blessings.

Glue

by AgentX86 - 2023-05-05 14:10:56

Internal disolving sutures and super-glue are the normal closings for pacemaker implantation. Evidently, your sutures came through the surface  before they were absorbed by the body. I hate it when that happens (it feels like a splinter).

Glue

by The Rose - 2023-05-05 17:24:40

Many thanks AgentX86

Appreciate your comments.  Perfect analogy: a splinter, in my case, several.  Based on all the awfulness during my issue, it's not surprising.

Hope you're well! 

Thanks much!