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I think you're asking the wrong people

by crustyg - 2020-11-02 16:00:06

Pardon me for being blunt, but I think you need to have a proper conversation with your EP doc, because you want/need to know about *your* heart condition.

There's a wealth of experience and expertise here about a huge range of heart conditions.  But I think what really matters here is the patho-physiology of your heart.  Could be you have LV remodelling from prolonged RV-apical pacing (which is a lot more common than 1%), could be you have a cardiomyopathy (for which there are *lots* of causes), or both.  And I agree, it would be nice to know that your %LVEF is increasing.

In your position I would write a firm and polite letter to my EP doc asking for this information.  At the same time, get a referral from your GP to the great person's outpatient clinic so that you can ask the questions in person.  Finally I would make a formal request to the hospital's Disclosures team for a copy of ALL my heart-related records, under the Access to Health Records Act 1990.  They can take a while to come through - supposedly a maximum of 45days (IIRC) but more likely 3months at the moment.  You may as well get this process started.

Then you will be able to have a proper discussion, armed with real information, and able to ask good questions.  Knowledge doesn't necessarily bring contentment, but, in general, understanding usually helps with acceptance - good or bad.

Best wishes.

The cloud of un-knowing will lift

by Gotrhythm - 2020-11-02 16:21:41

I've lived with a pacemaker for 9 years now, but I still remember the helpless, tied hand and foot frustration I felt in the early days, because it seemed so hard to get any useful information. I could tell something wan't exactly right, and that worried me, but I didn't know enough to know what I should be asking. And instead of telling me anything, professionals just wanted to reassure/placate me.

If I'm reading you right, you're uncertain about the future because you're not sure you understand your heart condition or what's reasonable to expect. And it's the not-knowing that really worries you.

The cure for not-knowing is information, pure and simple. Trust me, all us knowledgable people did not arrive at TPC with our pockets stuffed with nuggets of wisdom. I didn't. I was so hungry for information that for the first six months, I read every post, whether it seemed to apply to me or not. When people used terms I didn't understand, I looked them up, praise Google! And I read every single comment. From time to time, when I could formulate a specific question, I would post it. Someone, ususally several someones always answered. 

I haven't personally dealt with your diagnosis, so I don't have specifics to offer you. But I've gotten pretty good at finding information. I'll help where I can.

You can do this. You're going to find out what you need to know. And we're here to help.

PS,

Part of why the learning curve seems so steep is that before you can get information, you have to learn the System. Crustyg managed to slip his answer in ahead of mine--and happily for you, he knows the UK system.

His answer is right on. I don't know about the UK, but every health care/hospital system here has what's called a patient portal. A website where one can access all of one's test results. Having the results to hand makes asking specific questions much easier.

Information required

by Aberdeen - 2020-11-02 17:47:33

Thank you CrustyG and Gotrhythm. I had LV remodelling from RV-apical pacing. I don’t think I have cardiomyopathy. The LVSD was caused by my first pacemaker which I had for four months.

I have taken all your information on board and will write to the EP doctor and also ask for a copy of my heart related records.

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by Aberdeen - 2020-11-02 17:57:02

I forgot to mention that I have spent a great deal of time googling my condition and occasionally frightening and depressing myself!

Access to our records

by Gemita - 2020-11-02 18:16:57

Hello Aberdeen,

Firstly, it is so good to see your profile pic.  Makes such a difference!  

Yes it is all about getting access to our records.  That is the only way we can really learn at our own pace because appointments are often too rushed, leaving us without answers to our many questions.   I agree with you that some Pacemaker Club members seem to have a wealth of knowledge at their fingertips but these seem to be the ones who have been able to access their records, learn about their condition and then have that meaningful conversation with their doctors.  I am still struggling to achieve this but I am not giving up and am learning a lot along the way.

I am so glad you feel very well and I honestly believe this is a very good sign and probably the reason why your doctors are saying little at this stage.  The results of CRT are clearly working well for you and it will probably take time for your doctors to get a clear idea of how your heart is responding.  Over time they will be in a much better position to give you a more reliable assessment of where you are.  Hopefully this will mean a steady improvement in your EF and all your other test results.

I know what you mean about the uncertainty leading to worry and I appreciate how much “knowing what is going on” can help us to feel more secure.  I recently asked for access to my pacemaker records and was told due to COVID-19 there would be up to a 3 month wait.  I too have been struggling to get answers over the last few years which has not been forthcoming from my doctors, but I have been able to get access to my Reveal Linq implant loop recorder records over 3+ years so I have been able to study the results over a long period and have gathered a lot of information about the nature of my arrhythmias.  I also requested copies of several echocardiograms over the last few years and have been able to compare the results.  

Try not to worry.  You are doing well and feeling well which is what counts. Learn in your own time and enjoy 😊 it.  

And that's why we are here for you...

by crustyg - 2020-11-02 18:54:35

Information without context can be very frightening - I know that from personal experience.

What none of the websites and few of the textbooks get across is how common a particular condition is, and what the natural history usually is.  And that's where experience makes a huge difference and why a good medical advisor will take the time to explain and reassure when appropriate.  But there does need to be a transmission of information from them to you, and both a desire for that information and some understanding for the process to move forwards. Not all patients wish to know more (head-in-sand, the 'ostrich position'), but many - perhaps these days, most - do.  Be careful about reading up on conditions without bearing that in mind, because the worry that it *can* cause may be almost as bad as the primary problem (see some of the other recent posts).

Best wishes.

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by Aberdeen - 2020-11-03 03:55:17

Thank you Gemita.CrustyG and Gotrhythm for your detailed and very helpful replies. The pacemaker club is so reassuring,especially for someone like me Two pacemaker operations in 4 months. (In January and May this year) Hopefully 2021 will be a better year for everyone!