08/12/2023
TW: surgery/trauma also…this is gonna be long
So I just want to start out by saying thank you to everyone who has reached out via FB/IG/text/email/phone etc this past week to check on me or let me know you’re thinking about me. It’s really meant a lot and it’s really helped. I can honestly say that my surgery last Friday and the subsequent recovery have probably been the hardest things, physically/mentally/emotionally, that I’ve had to deal with during my heart failure journey the past 8 years.
As some of you may know, the way it works with pacemakers (no matter where in the world you treat) they will not change out the battery until you get the notifier that there is only 3 months left on the battery. When there was 6 months left they began monitoring it. A weird phenomenon that happens with a lot of people (including me) is that when it gets down to the end of the battery life, it becomes very unpredictable and starts depleting faster and its lifespans is unknown. In October I had 6 months left and at the beginning of November I had 3 months left. When my vibration notification in Costco happened, which indicated I had 3 months left of my battery, I called immediately and set up my surgery to take place on December 1. This date was picked because it was soon enough that it would assure my battery wouldn’t die. I also picked it because it was after Thanksgiving but long enough before Christmas so I would have enough time to heal so that I would be able to hold and play with my nephew on both holidays. It also was the most feasible time, considering I live 4.5 hours away from my hospital and needed to arrange places to stay pre and post operatively and I needed my mom to be able to come and be my caretaker. My heart is 99% pacemaker dependent and I can’t risk the battery dying- it is necessary for my heart to pump.
I am very diligent about the management of my disease and everything that comes with it. It is my full time job. I take over 26 different medications and supplements some multiple times a day, some once a week, some only as needed. All of these medications are updated daily in my portal. I have to be super careful about drug reactions and I’m overly cautious and ask a lot of questions when I start a new drug or I’m having a procedure or something done. Prior to my surgery date I had numerous conversations with the nurses, NPs, and clinic regarding my responsibilities. We went over my medication list, when I had to be at the hospital, when I had to stop eating and drinking the night before, etc. I was sent instructions in the mail and via the portal. The week of my surgery, my GP wanted to prescribe prednisone for an unrelated issue and before I even filled the prescription, let alone take it, I called my surgical team and asked if it would interfere with my surgery and I was told no.
My mom and I drove 4.5 hours the day before because I had to be at the hospital at 6 am. The night before I got a call from the hospital and once again confirmed my meds and was reminded what to take and hold the before the surgery. I arrived and met with the nurses, went over all my meds and what I had taken/skipped. Had an IV placed (after a bunch of sticks) and met with the physicians assistant. Then I met with the Fellow, Roberto, who would be doing my surgery. He was pure ✨magic✨ Everything was set to go. The Anesthesiologist came in. He started to ask me a bunch of questions about the last time I took some of my medications-mainly Farxiga and Ozempic which are two relatively new drugs. (I will NOT be entertaining any commentary on my use of this drug nor do I allow my story to be shared to cast negative aspersions on either of these medications) I had taken my Farxiga the day before and Ozempic 5 days before on Sunday as it’s a once a week injection. One of the functions of Ozempic is that it slows gastric emptying. Apparently new research came out in July that stated Ozempic must be stopped 7 days or more prior to sedation or anesthesia or the risk of aspiration is greatly increased. I was incredibly angry. And he was too. He was very frustrated that his staff/the clinic hadn’t told me to stop taking the meds as this protocol had been around since July. I asked him what my options were. He said normally this procedure was done with propofol, fentanyl and versed but those meds would cause my airway and my stomach to be relaxed and increase my risk of aspiration and fatality. He said general anesthesia was an option but that also had a risk of aspiration because you are intubated and it’s super high risk for me because of my heart failure diagnosis and he would not advise this course at all. The other option was to cancel the surgery. At this point I’m pretty sure with my head in my hands I said loudly “are you f*cking kidding me!?” And I went off. I was so angry and frustrated. My battery was about to die. I didn’t have the option to cancel, drive back home and reschedule. All my medications were well known by this hospital and team, they were all in the portal and they were even prescribed by members of THIS HOSPITAL.
At the same time my electrophysiology cardiologist/surgeon happened to be coming into my room and was baptized by fire. He asked the anesthesiologist to step outside to get him up to speed. They came back in and they told me that they thought the best option was to proceed with no anesthesia, pain meds or sedation and if there was an issue, switch to emergency general anesthesia with aspiration protocols. I asked what that meant. They would perform the procedure without any propofol, fentanyl or versed. I would get lidocaine in my chest. I would get a prophylactic antibiotic. And that’s it. My exact words were “I know I’m pretty tough as a heart failure patient but I’m a wuss when it comes to pain. Is this something I’ll be able to handle?” My EP/surgeon grabbed my hand and was like “you got this”. He kept patting my leg and reassuring me. In retrospect he was just hyping me up so I could do it because I had to. There wasn’t really a choice and he knew it. I will be forever grateful to my team for knowing me so well and knowing what I’m capable of, even when I don’t. He knew we were in a really sh*tty situation. I wasn’t in a position to be able to reschedule because I’m pacemaker dependent and my battery was at the end of its life but we also didn’t want to put me in danger with anesthesia. I said I would go forward with it the procedure. As I was being wheeled away my mom said “just get through this. We will kick ass later. Think of Taylor Swift songs”. I said “the angry Reputations Era?” She said “yeah and maybe try to transition into some of the more relaxing stuff” 🤣. And with that I was wheeled to the OR.
In the OR everyone was so kind. The nurses, the Abbott reps, the surgical techs, the surgeons etc. Obviously after finding out the news, Roberto walks in and says “so, since you’re going to be hanging out with us the entire time, what kind of music do you want to listen to?” “Something angry” I said. “Ohh, I didn’t take you for a heavy metal lady” he responded, trying to make me laugh. I was so nervous I just got flustered and said “No, not heavy metal. Whatever music you guys can work best listening to. That’s all that matters”. The nurse who brought me in says loudly from across the room “Her mom was talking about Swift!” “Tay tay it is!” Said Roberto. And they played TS Spotify to try to help me relax. They tried to joke with me and keep my mind off things. I’m sure it was insane for them, too; having their patient awake on the table must have been BIZZARE. My head was covered for the 2 hour surgery but I was awake the entire time. I received multiple lidocaine shots in my left pectoral muscle- some extremely deep in an attempt to keep the pain at bay. These shots were excruciating. But nothing like what was to come. You have to remember, most people have their pacemaker/defibrillator implanted just below their skin, but because of structural/age/cosmetic issues I originally chose to have mine placed underneath the pectoral muscle. That means every time I have to have my battery replaced they have to cut into my pectoral muscle.
I felt something going into my IV and I was concerned because I was told I wouldn’t be getting anything. It was super painful and it also felt like it was leaking and I said out loud under the sheet. “Are you guys putting something into my IV?” The anesthesiology assistant responded “yes that’s just the antibiotic. Normally you would be sedated by now and wouldn’t be able to feel it. Sorry.” I could feel and hear and smell everything. From them cutting me, cauterizing my skin, using retractors to open the space the were working in, their hands inside me, pulling out the old battery covered in scar tissue, shoving the new one one and sewing my many opened layers shut. I laid wide awake on that table with my face covered, silently crying to myself. I could see the monitors so I tried to regulate my respiration and heart rates. Anytime I could feel me tensing my muscles I would consciously have to relax my body. I’m no surgeon, but I couldn’t imagine it was good for anyone involved to cut into a contracting tensed-up muscle. I talked to myself the entire time. And I had to constantly remind myself to breathe. There were a few times I truly thought I was going to have to scream at them to stop. I thought I was going to pass out and/or puke. The anesthesiologist constantly put his head down near mine and told me I was so brave and so strong and he told me I was doing great and reassured me. He was so kind. The surgeon talked to me non stop. He could tell anytime I tightened up or even je**ed a little. The entire OR staff talked about Taylor Swift to me. They looked up her net worth, talked about Travis Kelce and Kanye. One nurse said “this is the longest I’ve ever listened to her.” The surgeon said he didn’t realized he actually liked her music until my surgery 🤣. They talked about artists and described their work to me since I couldn’t see it on the other side of the sheet. I mean these amazing humans did everything in their power to make this horrible situation as un-horrible as it could be. At some points I went to some very dark places to be able to get myself through this. I’m not being dramatic, just real. If anyone in the OR asked how I was, I responded with a quick “I’m fine”. It’s the people pleaser in me. I didn’t want to screw anything up. I also wanted this over as quickly as possible. Roberto graded his stitching as an 8.5 but told me if I ran into him later after I had a chance to view it and thought otherwise, to please let him know if he needed to alter his grading scale. (He never gives himself 10s and was very happy with his work. I am as well). I have stitches internally and externally.
The wheeled me back to recovery. The physicians assistant I saw at the beginning (before everything happened) walked by and not knowing what had just gone down, smiled and jokingly said “just coming down off of that good sedation, huh?” And chuckled. And i immediately burst into tears and started sobbing. Her heart sank and she switched gears in a nanosecond, not even fully knowing what was going on but knowing SOMETHING had gone on. She yelled to nurse to get icepacks, tissues, a lidocaine patch and some Tylenol. She held my hand when I explained what I had just been through and why. She apologized because she had just come right over to me and hadn’t even checked the notes before she checked in on me. She felt terrible. I told her I promised it was okay. Nothing about me or this situation was normal. She basically ran to get my mom thinking she didn’t know what had happened. But Kate was like “oh…I know”. 🤣 They covered me in lidocaine patches and icepacks and turned me into a popsicle while they waited for the doctor because they had no idea how to proceed with a patient who had no sedation or meds like me.
The surgeon and anesthesiologist came in shortly there after. In the middle of my sobs I asked exactly how often someone has this done without anesthesia/pain meds/sedation and they didn’t outright say it but they both looked at each other and then at me and shook their heads as to say “it’s not really done”. I tried to stop crying as much as possible and said “That was the most horrific thing I have ever experienced in my entire life and no one should ever be put in a position where they have to make the choice to have a surgery done with no anesthesia, pain meds or sedation.” They both responded that they had already begun the process of filing complaints and remedying the staff issue regarding patients being told to stop medications like ozempic and I said “well you don’t have to worry, they will be hearing from me too”. At this point the shock was beginning to wear off, and I was in a significant amount of pain but again I was in a position where I had to make a sh*tty choice. If I received pain medication in the hospital I was going to have to stay for an unspecified amount of hours and be watched, or I could be discharged and go pick up pain medication from a local pharmacy and go to my cousins house and be with family and relax. I chose the latter because I could not get out of the hospital fast enough.
The pain has slowly gotten better. I’m still restricted in the use of my arm for 3 more weeks. The stitches look good from what I can tell under the steri strips. A new device was implanted (Abbott Gallant HF)-it’s supposed to be thinner but with a curve and the battery is supposed to last longer and now I’m Bluetooth connected to my phone at all times (full 🤖) but as of right now the battery isn’t laying as flat in my chest as I’d like. Hopefully that changes as the swelling goes down. Mentally/emotionally I’m slowly recovering. It was hard for me to write this…to relive it. That’s why it took so long to post. I am upset with my hospital/clinic. Their oversight caused me immense pain and trauma that was unnecessary and avoidable. But I am not upset with the doctors, surgeons, anesthesiologists, PAs or nurses. Everyone was amazing given the terrible situation. I also have nothing negative to say about these medications-just that education and awareness needs to be spread.
As I said to my mom on the way home from a 2 hour surgery that I was awake and completely unmedicated for- “I always knew that I was tough, anyone with a chronic illness has to be, but I didn’t know I was THAT TOUGH”. And I am. But I would prefer to not have to be that strong ever again.
