General Surgery Consult
Since I started Ketamine treatments, my eating has improved a bit. (Un)fortunately, so has my exercise regimen. The more I work out, the more calories I burn that I can’t make up for. Without losing my conditioning, I need to put on more weight. I made a consultation with Dr. Kellie McFarlen to talk about a gastric pacemaker…again.
I considered this treatment almost immediately after I was diagnosed with gastroparesis in 2012. It was a new, but promising, option for idiopathic and diabetic GP. Dr. McFarlin wanted a tissue biopsy of my gastric wall (muscle) to see the extent of neuropathy. I didn’t have one at the time, and decided on a feeding tube instead. During that surgery, Dr. Sullivan did an open laparotomy to get a tissue sample for biopsy. Documents in hand, I was fully prepared for the appointment this time around.
Appointment Day
Medtronic GES Information
Luckily, my second consult was at the Lakeside campus so we didn’t have to drive all the way down to the city. I won’t lie, most of the staff was ridiculously rude. But my nurse was a sweetheart and so is Dr. McFarlin.
We went over the details of Enterra II Neurostimulator. It’s the same size and format as the first version with a few improvements. The battery life is more predictable, though it still varies per patient. The higher you need to dial up the settings, the more battery power it will require. The more battery power you use, the sooner it will need to be replaced. Some patients need the battery replaced within one year, others can last up to eight years. It’s main function is to use nerve stimulation to help the gastric muscles pass food into the small intestine. Enterra is primarily designed to reduce nausea and vomiting. This treatment will not improve motility from the small intestine to sigmoid colon, only the stomach. My GI tract has different levels of paralysis, which isn’t unusual with my comorbidities. There’s no guarantee Enterra will help me at all, just like everything else.
I asked Dr. McFarlin to put in the paperwork to my insurance for approval. It will likely be denied the first time around and may take up to six months for approval. I’m actually relieved about this time frame because I don’t know if it’s the right choice for me. A surgery requires down time and could set back most of my physical progress. It would help my gastric dysmotility but does nothing for the rest of my GI tract. Also, I put on about five pounds. I’m curious whether or not I’ll need Enterra in the future if I can maintain this weight. I should be able to figure it out within the next six months, though.
Valentine’s Day
I make a big deal out of holidays that celebrate relationships. Michael makes everyday a holiday for me, even during my sickest moments. The ketamine has already rewired my anxiety about gift giving. Typical Jenna would spend weeks searching online for the perfect gift (I could only shop online), wrap it up like Santa himself and gush about him in a hand-crafted card. Valentine’s Day 2018 was different and fulfilling, no anxiety necessary.
We talked about gifts on February 12th and agreed on the unconventional: my gift would be a new tattoo, his gift would be a high-quality truck bed cover. It was a double IOU without the paper. I went out and bought Funfetti cupcake mix with pink swirl frosting (strawberry creme + vanilla mixed), and made a funny computer paper card. He loved it.
It was a low-key day but so good! Michael got home around 8AM from work, so I slept in with him. We lounged around until 11AM when Helena’s opened. I ordered dill pickle and mushroom soups, plus farmer’s cheese pierogis, stuffed cabbage and sweet cheese crepes for Michael. I shit you not, Helena’s crepes are the greatest thing that I have ever “eaten.” Michael hadn’t slept much, so we laid down and watched Goodfellas before he had to leave for work. I spent the rest of the day cleaning the house/refrigerator, exercising and relaxing.
In a life full of chaos and pain, I truly appreciate just being content with my husband…
Chest Pangs
…because that contentment never lasts. Thursday, February 22nd was my first ER trip of the new year. This was officially the longest stretch of time I’ve been out of the hospital (except for surgery), since June 2017. I’d say that’s a new record!
Chest pain woke me up at 3AM from a dead sleep. I’ve had so many types of chest pain in the past: GERD, anxiety attacks, slipped ribs, severe tachycardia. This was unique, presenting as a classical heart attack. I have felt similar chest pain, in short bursts, that resolved itself within seconds. This was an unrelenting heaviness with shooting pains after every heart beat. The ache spread to my upper left arm, down my shoulder blade and up my neck. It got worse when I walked around and quickly fatigued me. I could only take shallow breaths because inhalation was too painful. My pajamas were soaked with cold sweat. My heart rate is always erratic so that wasn’t much of a telltale sign…
I waited it out for nearly four hours, debating if I should call for EMS. I took a bubble bath, put on dry clothes, fed the dog and prayed it would go away. Michael got off a sixteen hour shift around 7AM and rushed me to the ER. I hate our local hospital but the pain was too intense to make it to a good one. I handed my medical history charts to the triage nurse, who snapped at me and said “just tell me, I’m not reading shit.” I would if I could breathe, asshole. Being a smart ass myself, I gave what he asked for in acronyms—EDS, MCAS, POTS, GP. It satisfied me when he was forced look at the charts.
Barking Up the Wrong Tree
They gave me an immediate 12-point EKG (negative), CXR (negative), CT scan (negative) and took blood. I received IV Zofran and morphine so I could breathe a little easier. The morning ER doctor was well versed in EDS and thought it could be the culprit. I cancelled my Botox appointment for the afternoon and called Dr. Dubravec to consult him. He confirmed that MCAS can attack the lining of the heart and mimic or cause infarction. In such cases, EDS creates more work for the heart and amplifies pain. His office contacted the hospital for further instruction.
The afternoon ER doctor was less educated about my condition. They continued the cardiac testing with a stress echo (stress test + echocardiogram). The tech performed an echo after placing me supine for five minutes, then put me on a treadmill with incline. I was only wearing a large hospital gown, panties and grippy socks. A nurse lent me XL scrub pants so I wouldn’t moon the entire hospital wing. She protected my modesty while I was on the treadmill, holding my pants up and my gown closed the entire fifteen minutes. Once the treadmill stopped, I had to leap off and lay back down for an echo immediately. The results showed mitral and tricuspid regurgitation, though that’s typical for me. My heart is functioning probably better than most organs, honestly.
I was pretty proud of myself after the test was done:
- Though my heart rate was in the 200s, I barely broke a sweat during the test. Thanks, NordicTrack, for the incline trainer!
- I didn’t fracture a hip with the transition from the treadmill to the post-test echo. It was pretty chaotic, too.
After the exercise, I realized I hadn’t eaten the entire day. Around 4PM the kitchen delivered chicken and beans–great. Michael brought me Starbucks and a variety of soup to eat. Michael’s sister is a surgical technician and stayed with me for a while after her shift ended. I was getting frustrated because they wouldn’t put in orders for IV antihistamines or steroids. I didn’t care about the pain, just about getting proper treatment. No one ordered any of my daily medications, despite my very detailed chart. Thank God I had enough pills in my purse for the day! I almost cried when my nurse came in with IV Benadryl and Toradol. The chest pain slowly diminished a few hours later. They were going to keep me overnight but the cardiologist discharged me early. Michael & I picked Roscoe up from John & Alex’s house; they were nice enough to puppy-sit. We hung out for a while, I smoked a bowl of weed and had a mild IV-site hemorrhage. My shirt was soaked with blood but thankfully it didn’t destroy any furniture.
Should’ve Known
As of late, I have been getting more frequent and intense allergic reactions. The dermatological effects occur multiple times a day (painful rashes with redness & itching), so I’m used to it. However, daily systemic reactions began a few months back when I first started to expand my diet. I get swelling, itching and pain on my face (nose, eyes, ears, lips) & hands, and it gets harder to breathe. I simply take extra Benadryl and distract myself somehow.
I had a very difficult time with this hospitalization. Being in the ER with pain sucks, so I like to keep it on the DL. I’m in and out of hospitals so much that it becomes more routine than I’d like to admit. I didn’t inform my mom about the situation until she texted me in the evening. She tends to overreact (BPD related), heightening my anxiety in an already tense situation. Once she found out I was in the hospital, she took it out on my brother. She made a few hurtful statements to him about me in response to the news. Sorry not sorry that I stick to solid boundaries for my own mental health’s sake?
The following Friday I was feeling very depressed and sick for a lot of reasons: the boundary issue with my mom, being a mystery patient, having to navigate my own ER treatment plan, taking a few steps back physically. Chronic illness can be so lonely. I spent most of the day crying and having fits of anger. Michael talked me down several times. I had a ketamine booster the day before the ER but it didn’t do much good in that situation. MoodMonitor alerted the infusion nurse to call me. We discussed the chest pain, ignorant doctors, my mom and how I feel so out of control. She set up another ketamine booster to see if it helps get me back on track. I hope it helps something, anything. Fuck.
Randoms This Month
+ Michael & I went to Monster Jam at Ford Field with a group of our friends. It wasn’t nearly as loud as I thought it would be, but I still doubled up on the ear protection (ear plugs + muffs). It was a proud moment for this POTSy.
– Roscoe knocked me down while I was trying to wipe his muddy paws. The fall made me re-injure my tailbone, which I fractured last year. I could barely walk for a week.
+ I joined Michael and his lineman friends for an escape room experience. We hacked the Thomas Edison room (ironic?) and almost beat the record for fastest puzzle solved! If you haven’t yet been to an escape room, you should try it sometime. ♥
{para}sympathy 