For months I pleaded for people take my symptoms seriously. Sadly they just kept getting brushed of as being all in my head. Finally Dr. Trisch, my new GI doctor insisted that my mom take me to Mass General Hospital. I had gone an entire month and a half of surviving on basically no nutrition. Dr. Trisch flat out told my mom that if she didn’t get me to Mass General Hospital I was going to die.
My mom hadn’t even begun to realize how sick I actually was. She had thought the triage nurse at the ER at Mass General Hospital, would take my vitals and stick me in the waiting room to wait for the more critical patients to get seen first and then hours later they would take me in and give me some fluids and send me home.
Instead, the triage nurse rushed me to one of the high acuity rooms immediately where a team of doctors and nurses swooped down on me and began treatment. I was so dehydrated and my veins were so used up that they couldn’t even get a normal IV in me. Not even after four nurses tried. Instead, it took a team of doctors and a big huge ultrasound machine on wheels to get IV access on me.
My heart had been feeling so weird as it was in A-fib which is a rather dangerous rhythm. When your heart is in A-fib the upper chambers of the heart are just quivering instead of pumping blood. This creates inefficient circulation through the body.
Once IV fluids were pouring into my two ultrasound-guided IV lines, my heart did calm down some, just not enough to stop those damn monitors from squawking like crazy. The nurse was in and out of my ER room all afternoon and evening. She would hang more pressure bags to get my depleted fluid volume up, giving IV cardiac meds, giving IV pain and nausea meds, hanging bags of potassium, phosphate, and magnesium, and assessing for edema, and more.
Around 8 PM the doctors came back in. It was the attending and two of the residents that had been working so hard on me to get IV access earlier.
“You’re extremely sick right now and we believe it is due to a flare-up of your gastroparesis as well as a flare-up of some type of dysautonomia or other underlying condition.”
I just nodded, I knew I was really sick. It was a struggle to even stay conscious.
Your case is very complex and we need to get you stabilized. We’re going to be admitting you to an intermediate care floor. ” The attending went on to explain.
“What’s the intermediate care floor?” I asked.
” A hospital floor you go to when you’re too ill for a regular unit, but don’t quite require ICU care,” he explained. “You will probably be with us for a little while, we’re going to have a special team of doctors to cover you. They’re the complex care team. They take care of patients with a lot of co-morbidities and complications.”
“What exactly do they do?” I asked.
Once you’re set up with the complex care team, you’re on it for life. They will get to the bottom of exactly why you’re so sick, and every time you’re admitted here, they’ll be the doctors managing your hospital care. They’ll take care of you no matter what floor you’re admitted to every time you’re in the hospital. They are experts in getting to the bottom of rare, and complex diseases.”
“That sounds really good,” I told them.
“One of those doctors will probably come to see you here in the ER while you’re waiting for a bed on one of our intermediate care units. Then they will see you every day while you are in the hospital.”
“This is just what we need,” my mom agreed.
A couple of hours later I was dozing in and out of a sleepy state when a petite woman with blonde hair who appeared to be in her thirties came into the room.
“Hi, I’m Patricia,” she introduced herself. “I’m the nurse practitioner on the complex care team. I heard you’ve been feeling pretty lousy.”
“Lousy is an understatement,” I told her sighing.
“From the looks of your lab results and EKGs, I agree,” she said. “We know that you have gastroparesis, but I’ve been studying your chart and see that you present multiple dysautonomia symptoms as well.”
“My urologist, Dr. Metta also thinks I have some form of dysautonomia,” I added in.
“He is probably right on target,” She told me.
“I also had a brain tumor removed in 2012,” I said.
“Yes, and then you had a bleed and have to have emergency surgery to stop the bleeding.”
I nodded again.
“Your chart, labs, testing, and presentation also tell me that you are anemic, have seizures, orthostatic hypotension, tachycardia, A-fib, SVT, GERD, chronic pain, neurogenic bladder, breathing, and lung issues. In addition, you have hypothyroid, diabetes insipidus, anxiety, and PTSD.”
“Is that everything?” she asked.
“Isn’t that enough?” I asked.
She laughed.
Dr. Thomas, my partner, and I are planning on keeping you in the hospital until we determine what’s tying all these symptoms together and formulate a treatment plan to get you feeling better.” she promised me.
“This is an answer to my prayers,” I said.
Mine too,” my mom added, she was starting to come around and realize once again that this was a physiological condition, after watching the team of doctors and nurses swarming around me and hooking me up to every tube and wire under the sun.
“We will be contacting experts at the Mayo Clinic to help run certain tests on you and to get input from a bunch of specialists. We will also have neurology, cardiology, GI, and urology involved in your treatment as well. The plan is to take a whole-body approach so that we can look at your disease not as a bunch of separate little parts, but as a connected system.” Patricia told me.
Patricia gave me a full physical exam.
“Your pupils are very dilated and don’t react normally to light,” she mentioned. “Are you sensitive to bright lights?”
“All the time. They’re really dry too. I can’t wear contact lenses anymore because of it.” I answered.
“Your mouth is really dry too. Your labs show so much dehydration that it’s affecting your kidney function. How much do you drink a day?” she asked me.
“Probably at this point like 4 ounces or less. I just take little sips all day, but I never hold it down.” I explained.
“You’re also showing some serious signs of malnutrition. How much do you eat in a day?” she asked.
“Nothing, she won’t even try,” my mom said.
“When I eat I get severe abdominal pain, and I vomit. It’s gotten to the point where I just feel better if I don’t eat at all. Even nutritional drinks cause pain, bloating, and vomiting.”
“That’s the gastroparesis rearing its ugly head,” Patricia told me. “Do they know why you have gastroparesis? I know you temporarily had type two diabetes (a possible cause of gastroparesis) from the brain tumor, but you were diagnosed with gastroparesis way before that.”
“They just call it idiopathic and half the time no one even acknowledges that I have it. Everyone always wants to say it’s psychological or call me anorexic. I don’t like looking like this. I know I look like I just left a concentration camp, but there’s nothing I can do to change it.” I said.
“You’re right, it’s not your fault. I can see from your gastric emptying scans that you have severe gastroparesis. I also see that it’s progressed so far it’s at the point where you can’t even hold down the radioactive tracer to do another scan.” Patricia reassured me. “We will probably end up placing another NJ tube in the next couple of days. We’ll keep you sedated for the insertion and then start you at a minuscule rate and slowly increase it. If you can tolerate the NJ tube for a trial period and it helps you we’ll probably be talking about placing a more permanent tube.”
“Like a GJ tube?” I asked. Through Facebook, I’d learned that many people suffering from gastroparesis had those placed. A GJ tube was a tube that went in through a surgically placed hole in the abdominal wall and had one part ending in your stomach to constantly drain out your stomach contents. Then it had a second part of the tube end in the middle of the small intestine at the same place the NJ tube ended.
“Yeah, we know that you’ve had gastroparesis for more than half your life, so we need to come up with more permanent solutions,” she explained.
“I agree,” I told her. The idea of getting sorely needed nutrition and having a way to decompress my stomach had been floating around my head with a few other hopes I thought I’d never see realized.
“How many times a day do you self-cath?” Patricia asked me.
“At least five or six. I put out like 5 liters of urine a day even with the desmopressin injections.”
“Can you feel when you have to pee?” she asked me.
“Usually, but not always, and never until I at least have 500 ml in my bladder,” I told her.
Patricia talked to me for a long time about all of my diseases before reassuring me that she would see me the following day along with Dr. Thomas.
“They should have a room available soon,” she assured me.
My mom stayed with me while we waited for hours longer to get a room. Once I was all situated in the room on the the 8th floor of the hospital, my mom gave me a hug, told me she hoped I started feeling better, and headed home.
I wished she could stay with me. But I wasn’t ten years old anymore and I was in the hospital way too much for her to drop everything to be by my side every time I had a medical crisis.