when things goes to sh#t

I’ve been suffering with PVCs for two months. They are progressively getting worst and just typing something negatively or if I thinking something negatively, my iwatch immediately gets an tachycardia alert.

I had a two day ekg monitor and I have a 43% PVC burden along with occasional unifocal VPBs (form 47- LBBB pattern transition V3-V4 inferior axis, frequency trident, bigeminy, 3 couplets and 3 triplets. Plus one episode of 4 beats of NSVT at 138 (pacemaker is set at 70).

This holtor was done during my best two days with no symptoms. I felt great. Best 2 days in months . I’m a lot worst now. I speculate my burden is worst since my symptoms returned.

Today I was told to see an EP. She insisted on a pvc ablation and due to my burden, it can be done on the 27th.

I had PVCs after each of my first two ablations. I was cured by taking brand Tenormin. Atenolol doesn’t help. I’m sensitive to drugs.

So I became an aggressive self advocate and jumped through the bureaucracy and got an approval from the ministry of health for importing (I live abroad) Brand Tenormin. I was denied at first but I persuaded and was successful after calling the ministry. It will take 6 weeks. I have 3.5 weeks left before I can start Tenormin.

In the meantime the EP is pushing I get an ablation and she never heard drugs would be as successful as her projected 90% success rate.

She doesn’t know how iatrogenic I become. She doesn’t use anesthesia because she found it could suppress PVCs and she wants a good mapping while I’m awake (and screaming I speculate).

I don’t think I can stand an ablation without anesthesia. She replied they use linocaine at the groin sites. Who cares about that. I talked to a patient in the waiting room and she couldn’t bear the pain.

I won’t use clinic because this is a learning hospital. I’ll pay for private so no students practices on me.

I’m in full force self advocate mode first. I’m insisting on Sotalol first. I got my admission for 48 hours on Sotalol to monitor my QT.

I’m camping outside the chief EP of this hospital waiting for his surgery to be finish to speak to him. He explained everything and his reasoning why his patients are awake so not to suppress the PVCs so he gets a good mapping.

Today is my birthday. I have been so weak I’m surprised I made it. My PVCs were having a crack party.

It is my second worst birthday ever.

Just venting.

PS
I googled LBBB. It’s likely my left ventricle that’s firing. The EP wants to start on the right side.

PVCs become more of a concern if they occur frequently, especially if they account for more than 10% to 15% of a person's heartbeats in a 24-hour period. The more PVCs that occur, the greater the potential for developing cardiomyopathy, a weakened heart muscle.

I read left ventricular ablations comes with some mortality risks.

Question: why when I had AF it didn’t stop when I was asleep but with my PVCs they stop after I take a sleeping pill and go to a deep sleep? Is this typical?

It makes sense then the EP wants me awake so not to supress the PVCs during the mapping. It could frighten me into getting my second heart attack.

Happy Birthday, Susan! I wish I could help with all the sh#t you're going through but I can't even answer any of your questions. Just know we here are thinking of you and hoping you get answers and a respite from all your problems.

Susan, you MUST convince your brain/self that you CAN go through an ablation mostly alert, but certainly conscious. I had an angiogram and was offered sedation, but I declined. It was, without a word of a lie, a breeze. THEY TAKE CARE OF YOU!!! Honestly, don't sweat it. BTW, and this is TMI, but I watched my own vasectomy propped up on my elbows. I wanted to see exactly what the pretty nurse was watching. >< Maybe I'm weird that way.

Seriously, I urge you to submit to the EP who intends you no harm, but who knows HOW TO do this procedure for the best outcome for you. Your only fear is to be fearful, and you needn't be. I won't say it won't feel weird, maybe a bit painful for seconds here and there, but there is no pain enervation in the heart...you won't feel anything. The groin incision is like any minor skin surgery you have had, say to remove a lipoma or to excise a Spitz-Nevis skin lesion, both of which I watched as much as I could, but where I only felt a wee bit of 'tugging' when the sutures were being installed. They use local anesthetic which are highly effective.

I am thankful, for your sake, that you have handy and quick access to the experts. Here in Canada, the first order of business is to pray for an early visit to a specialist, say four months if things go well. If you're not a prayer, well...maybe the secular gods will help you.

Happy Birthday, Sue. Virtual warm and long hug around you until I feel you relax and heave a sigh. That's what I do to my wife every night when I tuck her into bed. I don't leave until she sighs and relaxes.

I’ve had 20 (or is it 21?) surgeries. I’m a veteran at this. All of my surgeries I arrived at admission smiling with zero fear. This time is different.

It’s different here because I’m among people who do not speak English. It makes me feel dependent to whatever they do/or not do without having a voice.

I’m did have a type 2 MI. I was being seen by an ER doctor who asked about my allergies. I mentioned adenosine. He insisted he was going to administer it for my flutter. I refused and he dismissed my refusal and he instructed the staff to prepare the adenosine. I immediately emailed Dr Natale’s NP at midnight and she called the ER doctor so I heard the conversation. The NP insisted not to administer adenosine. His reply was he didn’t take orders from a NP. This ER doctor administered adenosine three times. I had a heart attack on the spot and was sent to ICU.

So fright can give me a MI and being powerless can feel like an assault. That’s with people speaking English.

The two RNs in the room, as witnesses, filed a complaint (unknown to me at the time), and the ER doctor lost his attending privileges.

I need a voice. Not to micromanage but to be in the loop. Not knowing the language will make me nervous on the table if I’m awake. I am going to go through it nevertheless if sotalol doesn’t help and after waiting 3 more weeks to get Tenormin (always cured the pvcs), because it’s effective twice already-but that was while I was calm, not in a war. I just don’t want another heart attack. I have already daily stress.

I can get cardiomyopathy if I wait too long but I want to wait a month to see if the drugs can help. I am getting the required pre-op mri Wednesday. They want to test for amyloidosis disease. Dr N thought I have it. My current heart failure cardiologist suspected it. Dr N’s last ablation he was just doing a LAA and he mapped me and I lit up like a Christmas tree. He was surprised and said amyloidosis could do that. If positive by the mri, idk how an ablation can be successful. I don’t have much options.

[www.sciencedirect.com]

We will keep you in our prayers.

I'm profoundly sorry for all that you've been through and all that you're still going through. I'm hoping there's something in this two-page PDF that can either help you or your doctors as you try to rule in or out Cardiac Amyloidosis:

[www.asecho.org]

Though I think an Endomyocardial Biopsy is still the gold standard for diagnosing CA, I might also suggest, as a possible resource, Dr. Martha Grogan, at the Mayo Clinic:

[www.mayoclinic.org]

One of the best names in the business. If your local cardiologists don't have expertise in evaluating your echo as part of this process, it may be possible to get your echo images to Mayo and have them provide a second opinion.

Strain echocardiography also has a significant role here. It's one of many reasons that I think strain echocardiography should be the default (where available) for a workup of any afib patient.

Best of luck to you.

I attached my echo images. I am not fond of echos that are not digital and I only get a strip of images on glossy paper. I don't see how it will be clear enough because one cannot zoom in. I don't know if any EP will bother to look for specks. I showed this echo paper to the surgeon and she didn't bother looking and asked for the report. I should had gone to an imaging center where it is digital with a CD, but they wanted weeks to get an appointment and I needed something soon so I can get the MRI in two days.

Dr. Natale suspected it. My heart failure cardiologist wants to rule it out. Hopefully by Wednesday the MRI will give an answer and I'll wait two weeks to get the results. I am pacemaker dependent [AV Node ablation nuke] so they ordered a pacemaker technician to turn my pacemaker to MRI setting. I hope they know their job. Getting MRIs are my only concern [other than faulty battery life] of having a pacemaker.

thank you NBeener for your links. I think if there wasn't a language barrier I could manage this better. I got accepted as a disabled person and qualified for a caregiver. She is supposed to translate for me. She speaks for 4-5 minutes with someone and replies to me in a few words of a scanty summary what was said....then my PVCS act up out of sheer frustration because even with a caregiver, I am clueless what is said in my behalf.

I have invisible stress. I decided to take an Iwatch reading. It looked like artifact so I did some breathing exercises and took a shower to relax, did biofeedback, listened to ocean sounds from YouTube, and tried again. It is amazing how stressed I am. It is not artifact. I am wound up, stiff as a board. see attachment. Unless you are in a situation of not knowing the language and having to hear sirens and air traffic noises of fighter jet and helos, you would not understand. Add to that our passports expired so there is a waiting list to leave to do some R&R..



Edited 1 time(s). Last edit at 12/16/2024 08:28AM by susan.d.

I am so very sorry for all you are going through. I can imagine it would be extra stressful to deal with medical care outside of one's home country, on top of all the other concerns. I think I read that yoga is good for reducing a-fib occurrence, but despite having read that I haven't been able to make it a habit. But I imagine it might reduce stress. Anyway, nothing good to offer here but I'm very sorry and will be watching your posts for news, hopefully good news!