This was, without a doubt, one of the worst weeks of my life. I can really only think of one other occasion that really tested the limits of my sanity. And that was the two weeks I spent in Texas at the POTS Clinic.
In my last post I wrote about having done the photo shoot for my book, and how a bad flare up of gastroparesis symptoms was keeping me on a limited liquid diet and I was still in pain. The fact that I’d barely eaten a solid meal in two months and each and every one of my GI medications was failing miserably, we concluded that this must be something more than just your average flare up. And in my last post I explained that we started to think it might be abdominal adhesions (scar tissue) gluing parts of my intestines together or in knots.
As the pain grew more intense and my ability to digest continued to fail, I knew I had to do something. I’d seen my gastroentertologist. I’d been prescribed two tests that I needed to take to discuss getting the gastric pacemaker. I also finally had my botox appointment for my migraines. This week was scheduled out–between doctor appointments, work, and a tasting for my wedding–I knew it was going to be a tight fit to get everything done.
But that’s irrelevant.
Because on Monday morning, after a long night with little relief, my mom told me to pack my things because we were going to Celebration, Florida, where a specialist in abdominal adhesions would be waiting for us.
We took a three hour drive on the turnpike and pulled up to a hospital that looked like a castle. Even though my concierge doctor had spoken with the hospital, he felt the best way to get through the system would be through the emergency room, to get admitted, and then to consult with the doctor the next day.
We checked in quickly. And after triage and a five minute wait we were directed to the exam rooms. See, in my local hospital each exam room is just a little square of a room separated by curtains. At this hospital they were suites. Large screen TV’s and private bathrooms. The glass walls had an option for “fog” and “unfogged.”
Our nurse was great. She quickly took my history and called in a doctor. In under an hour I had an IV, pain medication, and nausea medication. Once I had the pain medication I lost track of time–so even though we spent seven hours in the ER, it felt like no time at all when they rolled me up to a private room.
The couch pulled out into a sofa bed, so for the first night my mom stayed with me. That first night I also got taken down for a petscan and x-ray.
Here’s where things start to get fuzzy. We saw several doctors the next morning. I couldn’t remember their names of faces, what they did or what they recommended. I let them take blood. I let them wheel me around from floor to floor. I moved left when they said to move left. And I made sure I got my pain medicine on time, every time.
The main goal here was for me to clear out my system. They asked me to drink Golightly which, for those unfamiliar with the colonscopy process, is an oversized jug of watery spoiled milk-like fluid that you’re supposed to drink 8 ounces of every hour on the hour.
Continuing to gulp down swallow after swallow of a substance that I knew was supposed to make me violently sick, just made me even more nauseated. I wanted to quit, but my mom kept dutifully handing me glass after glass and I drank and I drank. She looked as miserable as I felt handing as she handed me each drink.
The jug didn’t seem to get any less empty as the hours passed and I just wanted throw up. This wasn’t igniting my stomach. It was just sitting there, glass after glass of spoiled milk and there was nothing I could do but to keep drinking and drinking.
I did as much as I could–and then some. But my stomach didn’t move that night and I fell asleep feeling bloated and exhausted, watching the last few swigs of liquid rock back and forth in the jug.
In the morning, after I was put under anesthesia, the doctor would take a quick look come out and shake his head at my mom. I would need to drink more.
That day they switched me over to a new room on a new floor. I had never stayed in a hospital room like this one. It had a panel on the wall to set different mood lighting, a remote that controlled more than just the standard nurse and TV buttons–but an option to rise or drop the drapes for the floor to ceiling windows.
This room had a full recliner, another pull out couch, a desk and two chairs for writing/working and an infinity sink. It’s private bathroom held a beautifully tiled stone shower, marble counter tops and automatic sink, paper towel holder and soap dispenser.
More morphine. More promethezine.
Later my mom would tell me that I managed to down two more bottle of Magnesium Citrate. These would help–but after another round of anesthesia, they would prove to be another failure according to my doctor.
The whole point of being here was to have this surgery. I was constantly annoyed by the fact that this surgeon wanted more proof. Why couldn’t he just accept my medical records for what they showed? Why couldn’t he see how obvious it was by the fact that all of these medications they were giving me were having no effect? Why did he want to put me through this night after night?
The next time I drank Golightly I wasn’t as willing. I took two–maybe three glasses before putting the jug out of my view and crawling back into my hospital bed. I had bigger problems now.
In the ER, they’d placed a good IV in my left arm. It lasted two days, but eventually infiltrated and left a giant red mark all up and down my arm. It took three more IV’s before we realized that it was the IV antibiotics and IV nausea medicine that was corroding the line. But we didn’t really have a choice about how to administer those drugs if we wanted them to act quickly. So I just held my breath every time they went to inject the next dose.
Clear Liquid (Jello. Juices. Broth. Gatorade. Nothing solid. Nothing dairy) and NPO (No water, no food.)
These were the two stages I was on for my nutritional plan while at the hospital. Eating more would ruin their tests. So for seven days I took my pain medicine and I tried to pretend I wasn’t starving.
The doctors had me up at all hours of the night, drinking fluids, taking tests, checking vitals. Sometimes I could only sleep till 5. I had no idea what time it was most of the time. I focused on trying to sleep as much as possible. There was no part of me that wanted to be in my body at this point.
On my last day in the hospital we met with surgeon. I had been NPO, even when they brought me a tray for breakfast–and for the first time since I’d been there I actually didn’t care. I just wanted to know when the surgery was going to happen. Today? Tomorrow? The quicker we got this over with, the sooner I could eat without pain and consequence. I was ready. More than ready to get this over with.
The surgeon basically talked to us about two things. The first conclusion was that we needed to know more about where specifically the obstruction was taking place. The second conclusion was that, while we may have originally thought we were there for lysis of adhesion surgery, I was actually a potential candidate for four surgical solutions.
1) The Gastric Neurostimulator: to shock my intestines into contractions.
2) Lysis of Adhesions: the surgery that we originally thought I might need, done laprosoprically and removing scar tissue.
3) Colon removal and resecctioning: (I had no clue this was even on the table until my doctor very casually mentioned it.)
5) Lapband Surgery: (which is apparently helpful to GP patients and helps food move more quickly out of the stomach.
And at the end of the day–we couldn’t accomplish anything without more outpatient tests, so we went home.
I felt like I had just survived a period of waterboarding. There was so much anesthesia still left in my system that I was hallucinating conversations and kept waking myself up to respond to something that no one had said.
On top of that, I had taken an entire week off of work–the first time I have ever done that. I can almost always work from home or hospital, but this week I couldn’t even put together a legible email. My team at Global Genes is obviously was incredibly understanding (and incredibly thoughtful!) But I still hate giving up part of what helps to make me independent because of a bad flare up.
The week ended on a better note. I was released from the hospital just a day before my 25th birthday and was able to celebrate at home with R.J, Happy, Mom, Alan and my friends.
I’m calling my doctors non-stop trying to get these tests scheduled as quickly as possible so that I can get some relief, but I’ll admit it…I’ve been more depressed these past few days than I can ever remember. I know things will improve one way or another and even just being out of the hospital made a huge improvement on my mood, but I wouldn’t turn away from any cute puppy pictures or bad “dad’ jokes you might want to leave in the comments.
As always, I am so grateful for my mom who literally dropped everything, packed a bag, threw me in the car and got me to where I needed to be. To R.J who held down the fort, took care of Happy and everything at home so I could jump back into my routine without missing a beat. To Alan who drove back and forth from South Florida to Celebration in a single day. And to all my friends and family who called, texted, emailed, facebook’d, tweeted and basically morse-coded me well wishes from day 1.
I know this depression will pass, it’s just part of the cycle. And being a human pin cushion for seven days (eight, if you count two attempts at an IV today) is bound to make anyone feel their worst.
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