Pacemaker heart failure stress and a war

My tachycardia has not been under control this prior month. I had my routine 8 month pacemaker checkup and the act of walking from the lobby to the office brought on very unbearable pain. I saw an EP at the clinic because of the pain who said my pacemaker was ok and he gave me a written referral to go downstairs to the ER because according to him my complaints were not EP issues. No ekg nothing.

I actually have an experience of all ERs and including this hospital so I wanted to postpone going there. I took an expired nitro, pain eventually in 5 minutes dropped to a 5 and I took a long taxi home. Then the pain returned and I was concerned I was having a heart attack. I called an ambulance (thanks Carey on your advice not to take Ubers/taxis etc when presented with tachycardia or pain) and returned to the hospital.

This occurred about 10 days ago and I laid in a gurney, not hooked up to a monitor nor was seen by a cardiologist. I was complaining of 130 tachycardia, 10/10 angina and so dizzy that i stumbled a lot. Once down some concrete steps four days prior. My pacemaker finally converted me right before they finally took an ekg and then cruelly returned so it was’t recorded and then on and off controlled pacing at 60 with normal Trop. labs. I sat and rotted and after 24 hours in the er (the labs were ok so they thought I wasn’t in imminent danger). I was told I should go home and see my GP.

One dr thought I have heart failure. Interesting fact dr Natale told me too because he couldn’t understand why my ablations failed and my tachycardia and arrhythmia kept returning with a vengeance. I was recommended at tge ER to retake a nuclear medicine pyrophosphate scan out patient because my last in 2021 was grade 1 equivocal. The test is for amyloidosis.

If someone reading this has one unsuccessful ablation after another, I recommend this scan. Natale said my mapping lit up like a Christmas tree. He told me he wasn’t expecting much more than a quick touchup.

I called while in the er to get an EP appointment and was given May or if in cash mid March.

I’ve been hospitalized since 18 months old and was alone the majority of the time growing up in the ped ward playing with other girls Barbie dolls. My experience toughened me to be my own advocate. This time I called daily to see my EP and got a cancellation.

I saw my EP today. He is my California friend and colleague, head of the EP. Highly experienced. He too thinks I have heart failure and wants me see a heart failure specialist. I got an appointment at the end of the month- hopefully enough time to get that scan first. Before the heart failure specialist I have to see a regular cardiologist to control my angina pain. I got an appointment next week.

While at the EP clinic today , he took another PM interrogation and saw my hr was as high as 143 since the ER. He told me to hold onto the chair because my heart may temporarily stop when he changed my settings and he didn’t want me falling.

I’ve had a doctor in 2021 tell me to make my funeral arrangements because my heart was stopping for up to 15 seconds every 5-10 minutes. Between every fainting she asked me if I want to continued to be coded or did I want DNR? That made me fight more. I took the news remarkably well. Same as my aggressive 24% survival rate cancer.

However today, holding onto the chair thinking what if the building’s electricity should blackout due to ..I don’t know..a missile maybe.. I got really worried that the generators wouldn’t kick in on time for him to finish the tweaking.. it maybe one of my scariest moments.

He tweaked my PM so he thinks my hr won’t exceed 95.

I stood up and the room was spinning. It’s 9 hours later and I can’t even scroll fast on my phone without the dizzy nausea feeling that Im going to pass out. At his office I was stumbling bumping into furniture and he told me to be careful and not to fall. I complained the adjustment did something. He doesn’t think so.

So I’m asking if it’s possible me being so sensitive for even a slight adjustment puts me in a tailspin? that once my GP told me I’m so sensitive that someone could blowing on me and it would trigger an iatrogenic issue. All he did was lower the response to 95 instead of 110. Well I’m in PVCs also. the EP saw that on the ekgs so I’m getting a 24 hour holter to measure my PVC burden.

Long thread, sorry. I don’t complain that much. I suck it up knowing that it won’t make a difference but it’s the unknown that frightens me. I’m not ready. I have things I still want to do.

WOW! I don’t know where to begin because I don’t understand most of the technical issues that are happening to you at present. But I do understand your humanity. So, since I dont’t know where to begin let me end. Susan, I am so sorry for all that life is throwing at you. Utter BS to be sure. I hope your upcoming appointments will provide you some answers and will lead to healing treatment. I wish you peace, warmest thoughts and prayers.

One thing for sure, Susan, is that I'll never forget you. I don't know anyone, least myself, who could persevere as long and as hard as you have done. You're a natural fighter. Don't stop now!!

Thanks for your two kind replies. Perhaps I shouldn’t had vented at 2-3 in the morning but I was understandably upset. Today is another day and I’m in the fighting mood, high spirits to fight this to the end and prove them wrong.

Sorry for the long vent.

You are among interested friends, Susan. We know your true worth. I can't really speak for anyone but myself, but I suspect I'm right. Post here anything you need to say in order to reduce the pressure you're facing. Venting is a way of restoring equilibrium in engineering, so.....

And besides that gives me something to read at 2-3 in the morning when I can’t sleep.