Not the best update but progress

Getting closer to a diagnosis

by Gemita - 2020-06-15 13:55:04

Hello Alejandro,

I have been thinking about your message and how to respond regarding your results.  Exercise testing is not an area that I am really familiar with.  I presume the tilt table test was negative ?  I have to say your doctors are leaving no stone unturned in searching for clues regarding your debilitating symptoms.  I would feel very confident that you will get an answer soon under such a caring team.  

Pictures from the trans oesophageal echo (TEE) will be much clearer I would imagine than from a standard trans thoracic echo because of the proximity of our heart to our oesophagus.  Hopefully they will be able to finally rule in or out any structural heart problems, see how well your heart is pumping, confirm whether there are any valve problems or if there are any blood clots or bacterial infections.  TEE is more invasive than trans thoracic echo but it will be far more detailed.  I have had so many oesophageal tests like these for gastric issues.  They are not particularly pleasant.  They usually knock me out completely if I ask them nicely but in your case this will not be possible because the test will assess how well your heart reacts under stress and you need to be awake for this.  Presumably medication induced stress testing will be given.

I note no signs of ischaemia were seen on your ECG and that you remained in normal sinus rhythm during your recent cardiopulmonary exercise test.  That is really good news. 

The Peripheral Vascular Disease (PVD) workup will be helpful.  Hubby had various PVD tests when he was diagnosed with diabetes but he clearly has lots of circulatory issues going on after several strokes due heart disease, lung disease and arrhythmias, but he is so brave and just won’t give up.  He has just experienced a massive left shoulder muscle tear (we think) and he has a bruise running from his upper arm all the way down to his wrist with swelling.  We had to present to A&E on Saturday and he will need urgent review with orthopaedics within the week but still he keeps up his activities, so be brave Alejandro.  You will get there too.  Treatment for vascular disease involved keeping his blood pressure down, controlling his diabetes, anticoagulation therapy, maintaining good cholesterol/triglyceride levels, considering medication like ACE inhibitors and statins.  He is doing really well now but is so accident prone at 81 years which is becoming a major problem for both of us (!)

You mention the following results during your recent Cardiopulmonary Exercise Tests.  Perhaps other members can throw some light on one or two of these findings or explain the potential significance ??

A faster than expected HR increase with exercise ?

Your blood pressure failed to reach predicted maximum levels during exercise ?

Your 02 pulse (oxygen consumption to HR) did not increase appropriately

Tests recorded showed an abnormal heart rate reserve

There was early achievement of anaerobic threshold seen, suggestive of significant cardiovascular abnormality

We wish you well Alejandro 

Gemita ;-)

by arent80 - 2020-06-15 15:24:34

As always thank you so much for your response! It means a lot. I'm looking forward to getting a final diagnosis. I'm so over all of these tests but at the same time I am thankful I have access to them. And yes the Tilt Table Test was negative. I have a Neurology consult today as well just to check that side off as well. Will keep everyone updated. Thanks again :-)

Sorry to read about your problems...

by _Claire_ - 2020-06-22 20:11:45

Hi there, I'm sorry you're having such a hard time, I can relate to many of your problems.  Looking at some of your posts I relate to your frustration. I have sick sinus syndrome too and was largely asymptomatic (except for waking up choking in the night). They tried to tell me it was acid reflux, which I knew it wasn't. One evening I had a 13+ second pause which felt like I was dying, before I collapsed. I had a loop recorder implanted 2 weeks prior to that by chance, so it caught it. It was awful and I suffer a lot with anxiety after that event. My brother sadly died suddenly 3 months prior to my sinus node arrest, from heart failure. He was also largely asymptomatic and didn't know he had a heart problem either. I'm awaiting some genetic testing. I have experienced a lot of problems post pacemaker also. I haven't really gotten to the bottom of my problems but have been in A&E multiple nights also, had lots of ectopic beats, racing heart episodes (usually at night), diziness, breathlessness on exercise, many of which I suspect are a combination of anxiety and blood pressure issues but I can't be sure. I had an exercise stress test at the hospital which felt easy, but when I'm cycling or trying to jog in real life, my heart can't seem to cope. I haven't been offered any more tests. My heart rate often gets down to 43 on rest, which makes me feel nausea and then I have a type of panic attack as I relive the moment when my heart stopped and I collapsed. I think anxiety is a very normal response to having a pacemaker and all the worry and concern for the future that goes with it, especially when you feel that there is more to diagnose. It seems like there may be more to yours (hopefully nothing serious) I'm sure you will get to the bottom of it in the end! I now have a pounding heartbeat in my neck which I need checking out, but due to COVID has been difficult. My GP (I'm in the UK) completely dismissed the symptom without any examination. She actually said to me "you look young and healthy" I was so frustrated by that comment it made me cry :/ so I have very little faith in our healthcare system, although my emergency treatment (pacemaker) was excellent. At least it seems like you have gotten all the tests to rule many possible causes out. I hope that gives you some reassurance at least, it sounds like you are in good hands there and receiving great care. Something I did want to ask, did they offer you a leadless pacemaker like the medtronic micra that I have? Just wondered as mine is a single chamber pacer and it seems you have a dual pacer? I don't know too much about pacemakers to be honest. Sometimes I wonder if mine is suitable. The manual says that it is, but I've read a comment on here about the micra and SSS that concerned me a little, indicating it might not be recommended. 

Anyway take care, I hope things look up for you soon :) Claire