Feeding through a J port is supposed to help people with gastroparesis get much-needed nutrition that they can’t get by eating orally or by getting fed through a G tube. A person with gastroparesis has a paralyzed stomach so a J tube which goes straight into the Jejunum skips over that paralyzed stomach and goes right into the middle of the small intestine is a way to give the person.
Now that I had the tube feeds and the IV fluids, I was feeling a lot better physically most of the time as I wasn’t actively starving to death, but I would still have breakthrough periods where the pain would get intense, or I’d get nauseous and start vomiting huge volumes of bile and/or tube feed. The tube feed was going into my intestines through my J tube, which was supposed to prevent me from vomiting it up. Still, it didn’t always work for me because, as we learned at Mass General Hospital, my intestines were also severely delayed from my disease, so the tube feed would build up inside me and reflux back up into my stomach, causing me to vomit.
I would also have days where I would put out liters and liters of bile into my G tube bag. Then I would have constipation for weeks at a time, followed by non-stop diarrhea that not even Pepto Bismol or Immodium could control. At night I would have to wear children’s pull-ups to bed because I never knew when my bowels would choose to explode.
Because of all my fluid losses in multiple ways, I would struggle with dehydration. I was initially getting a liter of normal saline with potassium and dextrose a day. When I was consistently ending up in the ER from passing out due to severe dehydration Dr. Green, my kidney doctor who ordered the IV fluids once I was an outpatient, increased me to two liters a day.
With two liters of IV fluid a day, I was passing out less and not getting dehydrated most of the time. However, I was still continuously ending up with critically low potassium levels that were ending me up in the hospital. By the time I’d been home from the hospital for six months, my fluids had gone from running six hours a day to running twelve hours a day.
Therapy with Anne was going well, and I was dealing with my anxiety and emotions in more appropriate ways that didn’t involve perseverating on my negative thoughts and feelings as often. We had also started family therapy with my mom and dad, myself, and my brothers.’
My brothers refused to talk in family therapy even when the therapist directed questions at them. My middle brother was so nervous during therapy that he would have to go to his room and change out of a sweat-drenched shirt every time we came home. My dad tried to steamroll me with arguments of how I wasn’t actually sick and just needed to start eating again so that I could have my “hideous” tubes removed. My mom would try to soften the blows but wouldn’t outrightly stick up for me. I stopped talking about how I felt because anything I said, my dad disagreed with me.
We went to about three months of family therapy but stopped after that because we were tired of the three-ring circus routine it caused.
Returning to school was a welcoming escape that got me out of the house a good portion of the day. In my first semester home, I took Creative Writing for the Theater, The Art of Short Story, and Creative Nonfiction. My classes were so much fun, and I’d also started a personal writing project, which was a novel in prose and verse.
Unfortunately, due to my health issues, I was still in and out of the hospital a lot, but I was able to make up missing work from my hospital bed and submit it online so that I wouldn’t fall behind. Every time I went to the hospital, my dad would try to get my tubes removed, but each time I went, I was found to be sicker and have more damage from the Autoimmune Small Fiber Autonomic Polyneuropathy. The doctors would try to explain to all of us that I was just going to need more and more medical technology as time went on.
Also, around the six-month mark of being home, I had my first appointment with Dr. Hurrowitz, the nerve injury neurologist. He explained that my skin biopsy that had shown my Autoimmune SFN had demonstrated that I had a very severe case with extensive nerve damage. At that appointment, he also explained that my inflammatory marker blood tests, like my c-reactive protein and Sed rate, were getting higher and higher as time went on.
“I think that you have so much vomiting, G-tube output, and diarrhea due to the tube feed not being tolerated because your intestines just keep slowing down and so you’re not tolerating your tube feed. At some point, you’re probably going to need TPN, which is IV nutrition, and we’re going to have to stop the tube feeds and just use your J port for medication, but we’re going to try and stave that off for as long as we can.”
“Ok, I understand,” I agreed.
“What I want to do is to start you on IVIG to slow the progression of your disease.”
“Let’s do that then,” I piped up.
“Well, it’s a little complicated because it affects your electrolyte levels and your hydration levels, and even on a significant amount of IV fluid every day, you’re still struggling to maintain those levels. Once we have you on the right amount of IV fluids and you’re maintaining your electrolytes without need for multiple hospital admissions a month, then we can start building a case for IVIG with the insurance company. At that point, we’ll work on figuring out the logistics over what hospital it will be at and who will be managing it if you do it locally.” He explained.
“That makes sense,” my mom and I agreed, but I felt disappointed that we couldn’t start the best treatment for my disease sooner.
“IVIG is very intensive and can cause multiple severe side effects like aseptic meningitis, especially if you’re dehydrated, so we need to tread cautiously,” he explained, sensing my disappointment.
We made an appointment to see him back in six months to reconsider and have time for Dr. Green, GI, and endocrinology to help stabilize my levels.
In the next six months, I continued to have issues with electrolytes, dehydration, passing out, urinary tract infections, increasing weakness and muscle atrophy, headaches, abdominal pain, and nausea with vomiting. I was repeatedly hospitalized for all of those issues. I was also admitted for clogs in my J tube, causing me to need the GJ to be replaced in interventional radiology (a procedure that was much simpler than the original placement and didn’t cause anywhere near as much pain as the original placement. It took about half an hour, was done with Fentanyl and Versed for sedation, and there was minimal pain the day of and no pain the next day).
About a month and a half before my next appointment with Dr. Hurrowitz, I ended up going to the ER for severe abdominal pain and severe constipation. In the emergency room, I got a CAT scan of my abdomen and an abdominal x-ray. They both demonstrated that I had a bowel obstruction. It hadn’t perforated at that point, but they were worried it could, so they admitted me to the hospital and began infusing Go Lytely, the stuff they use for bowel prep into my J tube. They hooked my G tube up to suction. They made me completely NPO (no intake by mouth), and they stopped my tube feedings. It took two and a half days of bowel prep before I started having explosive diarrhea and cleared the obstruction.
Once the blockage cleared up, I was still having intense abdominal pain that they couldn’t explain, so they decided to keep me longer for observation. They put me on 1mg of Dilaudid IV push every four hours, and somehow I was still getting breakthrough pain. When they offered to increase the dose of Dilaudid, as bad as the pain was, I still refused because I was scared of getting hooked on it. As it was, I needed it around the clock every four hours because the pain was that unbearable. I would even wake up in the middle of the night, out of a dead sleep, due to the intense pain.
At that point I’d been using the oxygen only overnight at two liters, but then new issues occurred. Even though my respiratory rate was still normal, demonstrating that it was not the opioids affecting my breathing, my oxygen levels were dropping. My oxygen dipped as low as 80%. Once it got that low they had no choice but to put me on two liters of oxygen during the day as well.
A chest X-ray showed that my lung volumes had decreased and that I had atelectasis which meant that the little air sacs in my lungs weren’t inflating all the way to exchange air to oxygenate my body and that small portions at the bottom of my lungs were collapsed. Even more, testing showed that I had an increasing amount of diaphragmatic weakness and scarring on my lungs as well.
Worried that the pain medicine was the cause of my breathing issues they stopped all of my pain meds except for Tylenol and rechecked everything, Without the pain medicine it hurt to even try to breathe and my testing showed worsening of my conditions. I was in so much pain I couldn’t stand it, I screamed and cried all day, spiked my blood pressure and heart rate to dangerous levels even blacked out at points. After two days of hell, they determined that the breathing issues weren’t caused by the Dilaudid and they put me back on it. What a relief.
Because I had suddenly acquired even more complications I was told that I would need to stay in the hospital at least a few more days to figure out exactly what was going on and what the action plan was going to be.
The next complication was that after about two weeks in the hospital I had fallen at least five times trying to transfer into my wheelchair. PT was called in and a physical rehab doctor to evaluate me. The two of them checked me out and conferred with the neuromuscular doctors. They concluded that my inability to transfer or walk safely was due to a combination of muscle atrophy from disuse, blood vessel issues, as well as a disconnect between my nerves and my muscles as a result of my Autoimmune Small Fiber Autonomic Polyneuropathy.
They recommended that I restart physical therapy and remain on bed rest until I had undergone enough PT sessions to safely transfer with a two person assist (with two people, one on either side of me supporting me as I got out of bed and into my wheelchair or onto the commode) and then we’d go from there. If I needed to use the bathroom I was forced to use the bedpan. I would straight cath myself in bed and then give the nurses the bags. If I needed to go to a test I had to be lifted by the sheets underneath me to the stretcher and then lifted back into bed when I returned. After a lot of begging and pleading, they allowed me to sit in the recliner chair for several hours at a time a day but I had to be lifted in and out of it.
Weeks turned into a month and I was not improving, I was getting worse. I was having grand mal seizures, I was vomiting up tube feed and tube feed was refluxing back up into my G tube bag. Almost daily they had to replace one electrolyte or another. All my inflammation labs were still sky-high.
One month turned into two then three. Finally going into my third month I was stable enough to leave the hospital but I had been in bed for three months. I couldn’t even sit up on my own, let alone stand and pivot to transfer into my wheelchair. As much as I begged and pleaded to go home, in the back of my head, I logically knew there was no way it would work out.
The case manager came in to talk to my mom and me about sending me to rehab for what would probably likely be at least a couple of months with the condition I was in. She explained that because I was so medically complex and fragile that it would be hard to find a nursing home or rehab that would take me. For a week she updated us every day on all the nursing homes/rehabs that turned me down because I was too complex and medically fragile. Finally, at the end of the week, she said that there was a nursing home in the Berkshires, called Hillcrest Commons and that they said they would take me on their intensive medical/ventilator unit. My mom and I went on their website and looked at pictures and it looked like a nice place, so we agreed to it. Our only other options were a local long-term acute care hospital that my mom had visited that was dingy and filthy or other long-term acute care hospitals with the closest one to home being over an hour and forty-five minutes away. We should have been more suspicious as to why Hillcrest Commons would take me when the only other facilities that would agree to take me were long-term acute care hospitals (which are basically ICUs that you can remain in for longer-term treatment).
Two days after the case manager had told us about Hillcrest Commons, she came back and told me that an ambulance would be coming to bring me there in four hours and to have the nursing assistant help me pack up all of my stuff and get me ready. As much as I had been dying to get out of the hospital I had never been a patient at rehab before. This was all new territory. I would be an hour away from home. I wouldn’t know anybody there. I had never even seen the place. My heart was doing jumping jacks in my throat. Taking a deep breath I thanked the case manager for letting me know, hugged my build a bear Haley, and called my mom to let her know that today was moving day.
Later on that morning one of the nursing assistants helped me gather up three months’ worth of belongings that were scattered around my hospital room. It was July 1, the day before my 24th birthday. Some of the nurses had already given me birthday presents. They had become like family to me by then. We made sure to pack up all of the presents and everything.
The ambulance was late, as usual, and I was a bag of nerves. When they finally arrived an hour and forty-five minutes late my body was limp and sweaty but I was relieved that the anxiety-filled wait was over. An EMT and a paramedic came for me. From then on I would have IV fluids running most of the day so I would always have to have at least one paramedic take me for hospital transfers. EMTs weren’t qualified enough to run the pumps for the IV fluids. They didn’t have the training and schooling paramedics have. I would later pick up the lingo and learn that an ambulance with just EMTs in it was called a BLS truck or a Basic truck. They could only transport me if I had my own pumps running and could tell them I was self-managing my IV pumps, and they could only do that if their ambulance company allowed patients to self-manage. An ambulance with at least one paramedic in it was called an ALS truck or an Advanced Life Support truck. If I was going to be transferred and I wasn’t going to be using my own IV pumps then the Advanced Life support truck with a paramedic would be the way to go. The paramedic would have to put me on his or her pumps and ride in the back with me.
The paramedic that was taking me to Hillcrest Commons came in and introduced himself to me first. Then the EMT. The paramedic switched me back over from the hospital’s feeding tube pump to my own smaller, easier to manage Infinity feeding pump. We had charged it up in preparation for the transfer. Then he switched my IV fluids over to his IV pump.
“I have to put you on the heart monitor for the trip down there because you have potassium running and it’s company policy,” he explained to me. This became typical for Advanced Life Support rides because of the potassium content in my fluids and eventually when I was started on it, my TPN.
“After we slide you over onto the stretcher I’m going to put a sticker on each arm and each leg, a blood pressure cuff on whichever arm you choose, and an oxygen monitor on whichever finger you choose,” he told me.
“Okay,” I told him. I was used to this deal by now. I had lost track of how many times I had had my vitals taken and heart monitored in the last 13 almost 14 years.
The EMT picked up my G tube drainage bag that was hanging on the side of the bed and laid it on top of me.
“I’m just going to put that there so it doesn’t get pulled when we transfer you over to the stretcher,” he explained.
He also handed me some of the slack of the IV line. “I want you to hold onto this while we slide you over and give yourself a nice big hug. I will temporarily disconnect you from the oxygen and then as soon as we get you over to our stretcher we’ll hook you back up to our tank on the back. Two liters right?”
I nodded, grabbed the line, and hugged myself. Suddenly I was completely airborne and then I landed on the stretcher. The last time I was weighed I’d been 66 pounds, I was used to going flying when I was boosted. I was pretty much at my lowest adult weight ever because of all the vomiting of tube feed. It scared me.
Once I was all settled in the stretcher and strapped in with the two teddy bears that hadn’t been packed in ‘patient belongings bags’, my Hello Kitty comforter my mom had brought from home, all the medical equipment and all of my stuff piled on the back with the heart monitor and some stuff at my feet, we started rolling out of the room and down the hall. All the nurses and CNAs were calling out their goodbyes and good lucks to me as I rolled by, I called out my goodbyes and thank yous back to them until we were all completely out of sight and earshot. Then it was real. Then it was sinking in that after three months of knowing exactly how every day was going to play out, I was heading into a big unknown. I got a sour taste in my mouth, my stomach hurt, my heart pounded.