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Friday, March 1, 2019

My Gastric Pacemaker Experience

Hey I'm Kayla and March 1, 2018, I received my Gastric Pacemaker/Neurostimulator, so it seems only fitting that I write a post today, in celebration of it's first birthday.



Back in the middle of 2017, I began to lose a ton of weight very very quickly.  Within 5 months, I had lost 1/4th of my body weight.  I was unable to eat without extreme pain or nausea, and I had gotten to the point where I could barely even stomach liquids.  Fortunately, I was able to get proper testing relatively quickly and I was diagnosed with Gastroparesis, which translates to stomach paralysis, for those who don't know.  Basically, the stomach is a muscle that contracts/pumps in order to move food through, and my stomach muscle stopped pumping.  I ended up being referred to a surgeon in the Gastroparesis Institute at USC, and he laid out my options.  I had the option to start treatment less aggressively (ie Botox injections in my stomach, which have a very low success rate), or I could look at my surgical options which included the Gastric Pacer and/or a pyloroplasty (permanently opening up the hole that the food empties through from the stomach to the duodenum).  Due to the rate I was losing weight, I knew that if I attempted Botox and it didn't work, I would end up needing a feeding tube, which was something that I personally wanted to avoid at all costs.  My doctor had told me that he had recently been performing Gastric Pacemaker implantations AND pyloroplasties in the same surgery on some patients, and he had been seeing better results from them than from patients who received only one or the other.  Based on my case (and the fact that I'd rather have one surgery than multiple), we decided to do the Gastric Pacemaker and the pyloroplasty together.  I have never once regretted this decision.



The surgery took a total of 4 hours, and I was in the hospital for 2 days and 2 nights total.  For some, it would have been an outpatient procedure, but due to my ever-growing list of chronic illnesses, we decided it'd be best for me to at least stay for one night.  Those first 48 hours after surgery SUCKED. I mean holy shit the pacemaker was HEAVY (the weight of 2 golf balls) which meant it was painful as hell and super hard to get adjusted to.  Not to mention that when I get anesthesia I can't pee afterwards because my body is ridiculous so I had to beg for 2 catheters (honestly when a hospital makes you beg to pee, they're doin something wrong but I digress).  And in the hospital, I unfortunately broke my 12 year no-vomit record.  I literally hadn't barfed since I was 8 years old then some jackass gave me an anti-inflammatory that my body did NOT like and the record was gone :(



Once, I was stable and released from the hospital, recovery was easy enough.  Lots of resting and netflix, which wasn't out of the ordinary for me.  I became adjusted to the weight of the pacemaker so I don't notice it anymore.  It took about 5 months to get the settings on the pacer adjusted to where I could eat a somewhat normal amount, but I actually started gaining weight back within a month of the surgery.  One year later and I have gained 11 pounds back and am no longer underweight!  In terms of eating I have 2-4 good weeks, and then 2-4 flare weeks, which is to be expected because I still have Gastroparesis.

All in all I am beyond grateful for my pacemaker and everything it has done for me.

1 comment:

  1. Truly amazing that you found something that helped you. Thanks for sharing that there is often other treatment plans for GP rather than just a feeding tube! It's also helpful for those who don't know much about motility disorders and/or pacemakers! I was the latter :) <3

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