Unhappy Cutting!

[PattiJay]

My second pacemaker (replacement) was pretty routine within light-moderate sedation...that is until I had a very rude awakening to the NOT-numbed cutting open of my chest (I hollered and And THEN he asked for Lidocaine!), he didn’t wait for it to take effect or ask me how I was or ASK me if I was numb... commenced to do an excruciatingly PAINFUL Pocket revision and then tell whatever doctor was next to him to push down as hard as he could Omg SO PAINFUL and only then I heard hem ask for Midazolam... This was a horrible awful experience for me. My first time was very painful but not DURING!

Last, they didn’t test the defibrillator. Do any of you know if that is customary?

I hope you all are having a great day!

PJ

[Chapter]

I am sorry that you had to go through that bad time, PJ. How are you doing now?

I got my first Pacemaker in late 2017, it was a very quick process as I was diagnosed with Heart Block and within a week was back home recovering with my new device. I found the surgery quite painful, when asked how I was doing I said “my arm is very sore - it really hurts”. There was no comment, they just continued on. I ended up with a lot of painful swelling and a small puncture in lung, requiring 2 extra days in hospital.

In this past August I had to go back in and get a CRT device (bi-ventricle pacing) because the first one wasn’t helping me anymore. I told the anesthesiologists about my experience the first time and he said he wouldn’t let that happen. This time there was no pain during procedure at all and after a couple of days I was a bit tired but completely different than first time. I do not have defibrillater, so I don’t know about the testing, did you get a CRT-D? Perhaps you have had that done since you posted at your check-up.

Hope you are well,

Chapter🌹

[PattiJay in reply to Chapter]

Hi Chapter!

It's so good to connect with you! Your story sounds intense and horrible! You should not have had all that pain during your surgery either! Both of us had terrible experiences. EP doctors act like it's just fine to continue on with surgery when their patients are suffering and in severe pain that they are causing, and they don't care either that they are causing life long post traumatic stress and memories of pain that makes you afraid of doctors and surgery! If you have Heart Block why didn't they give you a CRT-D right away? Your heart could not in any way beat in a synchronized way when your electrical paths are not connecting! Why make you go through 2 surgeries? Of course your device fired, it was probably confused because of the heart block, and your heart's inability to beat in a synchronized way! You poor thing! This is atrocious! And for that Cardiologist to not know that Lupus and Heart Block and Heart Failure are related is a big red flag and a no-no! How dare he! I'm just in shock that he even has a medical license! I hope that by now you have a new Cardiologist or you are going to the second doctor for your care! I hope you are doing better and seeing a Rheumatologist! I am so sorry for that you have gone through, and the pain that you continue to go through with all of this!

Yes, I did get a CRT-D. My first CRT-D was in 2012 when I was 54. At that time I had heart failure, cardiomyopathy, and LBBB (Left Bundle Branch Block) and Sjogren's Disease, Raynaud's, Undifferentiated Connective Tissue Disease, Peripheral Neuropathy, and Fibromyalgia. My first surgery the EP was excellent. The whole team took my anesthesia concerns 100% seriously and I was 100% knocked out without having general anesthesia. I was in the hospital for almost 4 days for extreme pain because I had been really thin at the time because of my autoimmune disease, and the device pocket was under muscle and just metal on bone...very painful. But after a month or so the recovery went well. I didn't have shocks, but I just felt nauseous and tired for a while. It took me a long time to get used to it. My ejection fraction was 35 when I got the device, but it did go up to 50 after the EP team optimized it 8 mos. later.

Fast forward to 2018 when I got my second CRT-D, I was diagnosed with Lupus and CKD stage III, and I had a different EP team at a different hospital. By then I had had an ablation for syncope episodes and a right heart cath with them and it seemed fine so I didn't think anything would happen. At that time they noticed that I had developed High Grade Heart Block, which is near complete Heart Block. Many people with Lupus are at risk for Heart Block or some form of Conduction Disease or Arrhythmia. Like you said before, you were getting shocks and who knows if it wasn't for all the fluttering you were having... which is definitely an arrhythmia! Your Lupus puts you at Cardiac risk and your Cardiologist should definitely put a flag on you for that! So having said that I was diligent to say to my EP team that my autoimmune diseases puts me at a risk for metabolizing anesthesia improperly, and I worry about waking up during surgery or having spotty numbing or sleeping. The APN nurse manager kind of just blew past me and said "just talk to the anesthesia nurse about it" and then when I talked to him, he seemed just a little bit nonchalant for my liking...almost like I felt an Omen. So when that knife went in my chest and I felt that bloody thing slicing into me with them not so much as missing a beat... I couldn't believe it! And to keep pounding down on it like a CPR maneuver on a 300 lb patient having a Heart Attack in an open wound!

Needless to say, I did get a new EP. My first visit with him was the day after Christmas. I go to the University of Chicago (state of Illinois, USA) and this EP faculty all work together and write research papers together. My Cardiologist at the time (July 2019) was moving to New York City so I took that opportunity to ask him to refer me to another EP. It was his last day here in Chicago, so it was a big favor, and I'm aware that politically the doctors are all friends but I thought what if I have to have another surgery? I went back for my post-surgery follow-up July 2018 and Nov 2018 and then I never went back. My friends said I should get a new EP so when my Cardiologist was leaving UCM I seized the opportunity.

Meanwhile I am fine. I am on disability from my Chicago Public Schools teaching job. I'm 62 now, and I went on disability back when I got my CRT-D, retirement here is 65. I still have pain where my device is from the leads and my left shoulder but I'm used to it. I go to a Cardiac Rehab Program that I pay for, treadmill or walking and they have recumbent bikes too. My husband retired a few years ago. I have 3 kids and 6 grandkids, the youngest little 6 year old girl Emily has Autism, but for 10 years I taught Special Needs so I've been trying my best to help her with her Writing/Reading and her parents and siblings are so wonderful with her...not to mention she is LOVELY and ENCHANTING! My youngest daughter Molly is 32 and she has Sjogrens disease and Raynaud's too, and it knocks her out, and she was born with WPW (Wolff-Parkinson-White) syndrome -Syncope w/arrhythmias and palpitations- so she had to have a 6 hr ablation to burn out her accessory pathways...and she is a dance fitness instructor so it was a hard recovery for her.

I was going to say given that you have Lupus and Heart Block and Carpal Tunnel I wouldn't be surprised is you didn't also have other genetic conditions as well! If you could get your ANA and Connective Tissue Disease test results it might help. The pain in your arm and the Carpal Tunnel could indicate it's Lupus related or you might have elevated Connective Tissue Disease factors. It's worth looking into. All in all, you have gone through so much, all I can hope for is that you are finally happy with your doctors and your heart device! You deserve to have at least that much! Don't be afraid to ask questions of them, they owe you that much. You sound like a very kind person! I'm sorry I didn't answer sooner! I was mostly on the Arrhythmia Alliance Forum, and then I signed up for Pacemakers and I think you are the first person whom I've seen! So cheers to that!

Best wishes and I will be talking to you again!

~PJ ; )