I don’t know what to do anymore

Today I saw my FIFTH EP. It was a new office, new city, new network, I actually had hope. He had great reviews online, the office was fancy, I actually thought this might go somewhere. I printed all of my records, I organized everything, I explained my story in detail to the NP before I saw the doc, etc etc. Then as soon as I made eye contact with my new EP I knew it was over. It took a total of about 5 seconds to destroy it.  I was rushed, I was given no hope, I was told I've had a MEGA WORK-UP and not all doctors have the answers. Oh and he also said my case is quite unique. He just met me and can't diagnose anything, blah blah blah! JUST WOW! Not an I'll do whatever it takes to try to get you better, I'll consult my colleagues, nothing. He simply offered to re-order tests that I've already had but doesn't think it will be any different. I'm sure he'll be quick to send in that $475 consult fee to my insurance though! 

Until I was 39 years old I never really used our healthcare system for more than the flu or a cold. I can now say after all that has happened that I am flaberghasted, disgusted and appalled. I would expect this kind of treatment from a used car dealer over a crappy car that kept breaking down over and over,  not from educated doctors in a profession that cares for your life. I'm stuck within my insurance network, I've exhausted all options at the VA, what does one do? I guess it's time to dip into my savings and either go out of the country or hit a major university with an excellent reputation. Good luck to me doing that! Missing work, exposing myself more to COVID, did I mention I'm planning my wedding, etc etc. Ugh! 

You know, I've read so many things online about all these great doctors who have done all these wonderful things..... Where are they? I want to meet them!! Anyhow thats my rant. I don't expect any replies but thanks for listening. All the best to all of you out there. God bless! 


10 Comments

Afib?

by AgentX86 - 2020-07-27 23:15:42

You talked about Afib before.  I haven't gone back through all your posts but have you actually been diagnosed with AF?  Is it at the root of your probems?  Have you checked out the Afib forum?  Some there have experience getting the VA to move and have gone to one of the best Afib ablationists in the country.

Hello AgentX86!

by arentas80 - 2020-07-28 00:54:41

No sign of AFIB here. I thought one time I had it based on my Apple Watch reading but it ended up being pacing not AFIB. I actually just completed my 4th Zio Patch last month. The findings were as follows. This came directly from my EP:


1. Additional strips 2, 3, and 4 show sinus tachycardia, not atrial pacing.
2. Most episodes of sequential wide complexes are from V pacing with retrograde conduction after transient AV block with programmed AV delay hysteresis.
3. Triggered recording on 5/8/20@06:45 misclassified as "SVE(s)" actually shows 2 runs of non-sustained ventricular tachycardia.
4. 85 patient-triggered recordings with many reported symptoms correlate with brief V pacing with retrograde conduction in some
but also with many episodes of normal sinus rhythm or sinus tachycardia.

I don't know what to do anymore. Any exercise I do I almost pass out 15-20 mins after. Or I feel awful for hours. If I try to climb a small hill or stairs my body goes into this immediate state of stress. I had my rate response on but no help at all. My heart never had trouble going fast with exertion anyways so not sure why they even turned it on. I wake up sometimes and my heart feels like it's going to just stop. My chest feels so weird! I can't even explain it. I walk around feeling like I'm constantly holding my breath under water too long. I don't know how else to put it. I'm so frustrated! Anyhow sorry for the long rant again. I appreciate your comment :-)

 

You do have arrhythmias

by Gemita - 2020-07-28 04:16:39

Dear Alejandro,

Please try to find an EP who will be prepared to recommend implanting a Reveal Linq monitor to try to break this deadlock.  It will give them so much more detail over a longer period to assess your true arrhythmia burden.  It will cost but will be invaluable in finding the best way forward.  When the EP builds up a picture of the nature of your arrhythmias he will be in a better position to "safely" recommend additional treatment.  

I have always felt and even more so now after reading your posts, that you DO in fact have arrhythmias which are impacting on your well being.  Even short runs of tachycardia can play havoc with your body as I well know. It is only through constant monitoring that they will be able to build up a reliable picture of what the underlying problem might be and what might improve or eliminate your symptoms.  This might include an ablation, new medication or stopping/reducing doses of your present medication, pacemaker upgrade or further pacemaker adjustments.  These are the questions I would want answered by a Reveal Linq implant.  I would also want to know more about the significance of "retrograde conduction"  and whether it is pacemaker mediated and/or responsible for many of your symptoms?"  I would want to know how frequently you are getting non sustained VT or whether there are any signs of other (intermittent) arrhythmias like Atrial Fibrillation.  Your doctors may not have seen anything of clinical importance from monitoring so far, but in view of your continuing symptoms, further investigation is completely warranted in my opinion.

In the meantime, keep your chin up and with every rejection you will come back more strongly.  Don't ever stop believing in yourself Alejandro.  You will find someone with the expertise to treat you and with whom you will feel safe. Approach any new doctor with a "gentle" firmness that you believe your problems are due to arrhythmias and that you feel the Reveal Linq implant could help identify the problem by giving more, continuous information over a much longer period to aid proper diagnosis and treatment.  

If they try to suggest that your pacemaker is a permanent, long term monitor, gently suggest that the Reveal Linq is superior as a monitor and will provide and store more detail than could be provided by your pacemaker.  As a matter of fact when I had my pacemaker implant, my Reveal Linq implant was not removed at the same time (because I hadn't authorised its removal) but my EP was glad because he said he could use the info provided by the Reveal Linq to guide any further treatment.  When I suggested "but I have a pacemaker now to monitor me, to guide further treatment?", he said the Reveal Linq monitor was superior and stored more information/detail which did surprise and somewhat disappoint me, but there you are.

I wish you well Alejandro.  Remember as you move forward try to break down your health problems into smaller bits.  Don't take all your symptoms to your doctors at once;  you might overwhelm them.  Go with one, or two at most, of your troublesome symptoms and focus on them alone.  Getting results and appropriate treatment is all about having the best investigations to do the job.  When short, medium term arrhythmia monitoring fails to give satisfactory answers, I would respectfully ask for more permanent (up to three years) of continuous monitoring to get a better evaluation of your overall arrhythmia burden. In my opinion the Reveal Linq is unbeatable and was fundamental in getting me the treatment I most needed.  

 

traveling

by Tracey_E - 2020-07-28 09:29:58

I'm so sorry you feel written off and didn't get any answers or new hope. Have you considered looking into something like Mayo or Cleveland? Duke, Vanderbilt and Hopkins are also excellent for the cases that no one else can figure out.

Gemita :-)

by arentas80 - 2020-07-28 12:00:58

Thank you as always for your wonderful words. The concern I'm having is I've had 4 Zio Patches. Why wouldn't those have shown any arrhythmia's? I pressed the button this last time 85 times when I was having episodes but according to the EP's I was in sinus rhythm and they mentioned the brief V-Pacing along with the retrograde conduction part. I had the Closed Loop Stimulation activated but when I went to review my results he changed it to the accelerometer instead. This setting I felt when driving (annoying) AND it caused much more V-Pacing. I normally pace 25-30% in the atrium and barely 1% in the ventricle. Now with the accelerometer I was V-Pacing 47%. I had them turn off that feature yesterday. My heart rate increases on its own just fine. They turned it on to help me get through my presyncope episodes but I'm not sure I even noticed it helping. 
 

I also inquired about heart failure with preserved ejection fraction and they said highly unlikely. HFwPEF usually comes with high blood pressure, CAD or a high BNP count. I have none of these things. I'm just at a loss with all of this. I'm not a doctor but it feels like I need to become one in order to solve my own problems. This shortness of breath or lack of cardiac output is debilitating. It makes me feel horrible and the worst part is I don't even know if I'm describing what I feel correctly. 

Tracey :-)

by arentas80 - 2020-07-28 12:03:57

Thank you for commenting Tracey! Yes I've looked into the Cleveland Clinic. I was born and raised in Lorain, Ohio which is 30 mins away. I know it very well. I called, started discussing the referral option but never heard back. I got frustrated and didn't follow up. Maybe I should. There is also a CC Affiliate here in California up North which would be closer to me anyways now that I live in Pasadena, CA. Anyhow I know I have work to do and have no choice but to be my own advocate. I feel like an alien! What is wrong with me? Why can't anyone figure it out Lol!!!

We will try again

by Gemita - 2020-07-28 20:02:12

You have described perfectly well to me what you are experiencing and you clearly have rhythm disturbances. 

I do not know what your first three Zio Patches showed (probably more of the same) but your 4th one which you posted has clearly shown “sinus tachycardia”.  It would be interesting to know how fast or for how long these episodes lasted or how frequently you are getting them at rest since this would clearly not be a normal finding.  

I can see you are also very symptomatic from your “Ventricular pacing with retrograde conduction after transient AV block with programmed AV delay hysteresis”.   This area needs to be discussed and better understood to try to alleviate some of your troublesome symptoms.

Your early morning rhythm disturbance on 8th May which was originally classified as supraventricular ectopics was actually confirmed to be 2 runs of non-sustained VT - again this is an arrhythmia and it is more than likely that these events are not isolated events which is why more permanent monitoring I believe is so crucial to get the whole picture, particularly as you are so symptomatic.   By the way, confirmation of non-sustained VT is usually assessed to be a minimum of 3 beats and under 30 seconds duration at a rate of over 120 bpm to qualify.  Not sure how long your two runs were (how many beats) and the ventricular rate recorded.  Non sustained VT may or may not be significant but it can certainly be associated with ischaemic heart disease and other structural problems.  My EP was very concerned to see my episodes interspersed with  supraventricular tachycardia.  My pacemaker recorded 18 supraventricular episodes during one particularly bad day but my Reveal Linq monitor was successfully able to capture simultaneously, non sustained VT.

They state you had 85 patient-triggered recordings with many reported symptoms which correlates with brief ventricular pacing with retrograde conduction in some cases, but also with many episodes of normal sinus rhythm or sinus tachycardia.  So they have clearly acknowledged that you are symptomatic and that you have many episodes of sinus tachycardia.  You may well have been in normal sinus rhythm for much of the time you were monitored but you were also going in and out of normal rhythm a lot of the time too from what you have posted, so don't be so hard on yourself.  Your EP can hardly suggest NSVT or Sinus Tachycardia episodes are of no consequence, especially when at rest and when you are so symptomatic.  Additionally you may be getting a high arrhythmia burden from both atrial and ventricular ectopics which can cause many adverse symptoms and they regard ectopic beats as benign and perfectly normal.  They may be when infrequent, but in excess they will certainly cause problems and lead to worsening rhythm disturbances.

I will think about a plan to help move you forward and will private message you in the next few days with my thoughts..  We need a new approach when you next meet your EP at a different centre because clearly doing the same thing will only bring the same results.  Hopefully the doctors will accept that permanent monitoring may be the only way to go.  It will certainly give your doctors lots of information, information that might not be so readily obtainable from other investigations.

 

 

Sorry you are having issues

by Savannah55 - 2020-07-29 10:44:23

Sorry to hear things are still bad. Like yourself I am still plagued with issues despite having the PM and trialling medication. 

Have you enquired about maybe having and EP study as they can then pinpoint exactly where the issue is coming from within the heart? 

I hope you get some answers soon.

Electrophysiology Study

by Gemita - 2020-07-29 12:17:49

is a good idea but they cannot always trigger the arrhythmia during the study, despite stopping anti arrhythmic medication beforehand and if they don't see the problem, they cannot always fix it "long term" or learn anything meaningful from the study without sight of the arrhythmia.  It can be quite a challenge to trigger an arrhythmia when we want to, even though when we don't want it, it can appear for no apparent reason.

I was in AF during an EP study in early 2017, so they could clearly see the arrhythmia and where it originated, even though I chose on that occasion not to go ahead with an ablation.  They were nonetheless able to adminster IV Flecainide and 3 x cardioversions to stop it but this was only a temporary fix.  Following pacemaker implant in early 2018, my arrhythmias are now better controlled in all respects and I am on minimum medication so I have been extremely lucky and have had an excellent response to my pacemaker therapy.  

But as Savannah says Alejandro, an EP study is another tool in the toolbox we could use to get a better picture of what is going on when you are perhaps sedated, since I note that your symptoms tend to appear when you are rest (the palpitations, breathlessness) and that you have sleep apnea

Completely agree with everyone!

by arentas80 - 2020-07-29 22:49:57

I couldn't agree more with everyone. I just wish the doctors would listen to us more. Believe it or not I've asked for Autonomic Dysfunction Tests because I feel like my body is failing me. I did THREE HALF SQUATS and my body goes into this immediate state of stress in the chest and all over my body. Then I feel dizzy, nauseous and then flu like for like 20 mins. Over THREE squats ? I'm 40 not 80. I'm not 400lbs. I feel like there is more to this then just my heart. Why didn't the patches catch the arrhythmia's when I was pressing the button? My Primary Care said to me yesterday that my physical symptoms have a psychiatric basis and I need to come to terms with that. EXCUSE ME! Are you kidding me? I immediately changed VA locations and hope to never see that clown again. I have anxiety because I'm not better. Not because I have severe PTSD from the war. I was on an aircraft carrier in AC all day. I didn't even see much of anything during my military days. Anyways you all are so awesome! I feel better all the time reading your words!

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