After getting a GJ tube placed for my severe and debilitating gastroparesis I was in a whole lot of pain. It felt like I’d been gutted alive and no matter what position I lay in, I just couldn’t get comfortable. Just when I was finally starting to get semi-okay with pain control, I had to get my Port-a-cath placed.
What is a Port-a-Cath?
A Port-a-cath is a small little plastic reservoir with tubing attached. The reservoir gets placed into a surgically created pocket in the chest and has tubing coming out of it that leads to the big vein that dumps directly into the heart. After the port-a-cath is placed the skin gets glued back over it.
When you need to hook the port-a-cath up to IV fluids you have to “access” it. You do the same thing if you need to do a blood draw, or put medication through it.
To access it you use something called a Huber needle. This is a special needle that is hollow inside and attached to a plastic device and tubing. You have to feel for the port-a-cath under the skin. Then the nurse grips the chest with one hand and punctures the needle through the thin layer of skin into the little plastic reservoir. The tubing from the Huber needle gets hooked up to the tubing of an IV bag and the contents of the IV bag will go through the needle into the plastic reservoir and down into your heart.
Port-a-Cath+GJ Tube+Catheters+Oxygen=Bionic Girl
For the last few months, I’d had a PICC line that I’d been using for IV fluids with electrolytes, vitamins, and sugar. I was also using it for blood draws, and medications. However it had been explained to me that the PICC line was only temporary and that I would need central line access for the rest of my life, so now here I was, about to have a port-a-cath placed. Now, I was starting to feel like a bionic girl.
The procedure to get the port-a-cath put in went much more smoothly than the GJ tube placement had gone. They gave me propofol for anesthesia, which completely knocked me out while it was flowing through my IV line, but it didn’t knock out my breathing, so I didn’t need to get a breathing tube while in surgery.
Waking Up With a Port-a-Cath in my Right Chest
When I woke up, I had a small, very sore bump on my right chest, and surgical glue holding the wound together covered by a dressing they had told me not to touch. Interventional Radiology informed me to allow the steri-strips covering the glue to fall off on their own. They told me not to pick at or peel anything off.
“We will be able to access your port-a-cath for the first time tomorrow morning.” The attending surgeon told me. “It will be very sore for a little while. Once a week we’ll pause your IV fluids, take down the dressing, put on sterile gloves, sterilize the site, and change the old Huber needle out for a new one. Then we’ll put a new dressing on and hook you back up to your fluids.’
“What about the PICC line?” I asked. It was still in my right upper arm.
“An IV nurse will remove the PICC line tomorrow after we access your port-a-cath for the first time.” They told me.
Accessing My Port-a-Cath For the First Time
When the IV nurse came the next morning, she took down the bandage on my port-a-cath and showed me the Huber needle. She put that numbing cream on my site and let it sit for half an hour before she came back and cleaned the site off with chlorhexidine.
When she punctured my thin layer of skin above the septum, It felt sore going in, but I didn’t yelp. Once it was in, it was less sore, but my whole chest ached from the placement of the port-a-cath the day before.
My stomach and chest on the left side were still hurting from the placement of the GJ tube, which, due to my odd anatomy, was right under my left breast at my bra line of all places, and now my right chest throbbed as well.
Upping My Morphine Dose Into the Danger Zone
I brought up the pain to the Complex Care team, and they agreed to temporarily increase my dose of liquid morphine for the next few days while I recovered from the invasive procedures. Because my chest wasn’t as affected by the hyperalgesia I wasn’t anywhere remotely near as sore as I had been with the GJ tube but having both procedures so close together made me more uncomfortable than I would have been otherwise. Especially because they were so close to each other on my body.
The day after the morphine dose increased, I started hearing a voice I didn’t recognize telling me that I could fly. When I looked around the room, no one else was in there. Then I started seeing blood dripping down the walls, but I logically knew that it didn’t make sense. Soon after that, I became convinced that there were cameras in every corner of the room watching and recording me.
Chasing After Hallucinations
Immediately I knew something was mentally wrong. At that point, I was in the room alone and felt scared out of my mind. I could hear my heartbeat throbbing in my ears. Not knowing what else to do, I pressed the call bell and prayed that it would get answered soon.
Then time stood still. I couldn’t figure out how long ago I’d pushed the call bell, it could have been minutes or hours earlier, and I didn’t know. I saw a ball of bouncing light shimmering in front of me and heard a voice telling me to catch it to cure my disease. Reaching forward, I was grabbing for it but wasn’t sure if it was a hallucination or not because I couldn’t grab it physically.
This didn’t stop me from wanting to catch it though, my thoughts were all chopped up in my head, and I couldn’t find where one started and ended so I couldn’t make sense of anything and was just reacting.
The Elusive Ball of Light Hallucination
As if drawn to it by a magnet, I sat up in bed and struggled to catch the ball of light. I felt like I compulsively had to have it, even though I couldn’t understand exactly why.
Once I was sitting up, I took every last bit of strength I had in me and swung my legs over the side of my bed like I had learned in PT with Sarah. The wheelchair wasn’t near my bed, but everything was so odd in my head that I didn’t register this.
I pulled myself into a standing position, and my heart monitor began alarming tachycardia in shrill, panicked tones. For a good 30 seconds, I struggled to stay upright at the side of the bed, but then I felt my knees buckle and my body crumbled to the floor. The whole time I was still reaching for the ball of light that would randomly appear and disappear.
Lost in a Drug Induced Psychosis Post Port-a-Cath and GJ Tube Placement
It took me a whole five or ten minutes to realize that I was helplessly lying on the floor, unable to move from the pain. The bed alarm was screeching in my ears, and the heart monitor was whaling that my heart was beating too fast.
Before I could even yell for help, I was surrounded by nurses and aides
“What happened?” my nurse for the shift asked me.
“There are cameras watching me, blood on the walls, and if I catch the ball of light, everything will be better, so it’s ok.” I babbled.
“Do you know where you are?” my nurse asked me.
“Yes,” I answered immediately. Of course, I knew where I was, I always knew where I was, but when I tried to identify where I was out loud, my mind went blank. I was in a room; there were tubes, I must be in the hospital. That had to be it, I couldn’t place which hospital I was at, but after a long pause, I said aloud, “the hospital.”
“What year is it?” she asked me.
The answer to this question eluded me as well.
Something’s Wrong With My Brain
“How did you end up on the floor?” she asked me. “You need to let us know when you want to get up, it’s not safe for you to try on your own.”
“I need to catch the light,” I insisted again.
“What light?” she asked me.
Pointing in front of me, I tried to show it to her, but she insisted there was nothing there.
“I think something’s wrong with my brain,” I told her, it was the first lucid thought I’d had in about half an hour.
The nurse paged Dr. Thomas, and they ordered a CT scan. They were concerned that I had hit my head when I fell. The CT scan came back negative, but I continued to hallucinate and have confusion over the next few days as well. I would repeatedly forget that I was sick and that I was in the hospital.
Bed Alarms,Restraints, and 1:1s
My memory of that period is fractured into bits and pieces. I do remember that the hallucinations were so powerful. What I also remember is that my thoughts were so blenderized that I would repeatedly try to get out of bed on my own to catch that elusive ball of light. Without fail, I would fall on the floor after about 20 to 40 seconds.
They ended up putting a bed alarm on me that went off every time I tried to get out of bed. At certain points, I remember getting strapped down to my bed by restraints and feeling panicky, trapped, and out of control.
The hospital staff would have to sit with me 1:1 all of the time so that I wouldn’t hurt myself when I kept trying to get up. I would get strapped to a chair or the bed, and people would try to explain to me that I wasn’t supposed to stand up. At one point, I tried to stand up on the bed and fell and pulled my GJ tube partially out.
I Have a Port-a-Cath and GJ Tube, Can I Just Go Home?
They gave me medicine to calm me down in my port; a medication called Haldol. It made me sleepy and out of it, but it stopped the blood dripping down the walls, the cameras disappeared and so did the disembodied voices and the ball of light I was so insistent on catching.
I was sent down to IR to get my GJ tube replaced, but I was so out of it that I don’t remember a thing about it.
Dr. Thomas wanted me to be able to go home soon, as I was now medically more stable, and we had a treatment plan in place, complete with future IVIG treatments, but we didn’t know what the best plan of action would be.
“If you can’t stop trying to get out of bed and falling then we can’t send you home, we may have to send you to rehab first.
At certain points, I was aware enough to comprehend that I didn’t want to go to a nursing home or rehab and that I wanted just to go home, but other times I just felt like I was in a giant blur.
It’s the High Doses of Morphine That Made Me Psychotic
Finally, Dr. Thomas consulted with a psychiatrist who came up to talk to me. I have no clear memories of the psychiatrist, but I know I did talk to him. My mom, Dr. Thomas, and Patricia assured me that this was the case.
It had been about three weeks of insanity, confusion, and suffering before we had an answer. The psychiatrist and Dr. Thomas and Patricia discovered that the high doses of morphine were what was making me go crazy. They switched me to IV Haldol for agitation and J tube Dilaudid for pain instead of the morphine, and my thinking almost immediately cleared after two or three days.
Where Do I Go From Here?
Once I’d been stabilized mentally with the med changes, a psychiatrist came and spoke to me again. He explained that the morphine had caused a drug-induced psychosis. Relief flooded through me now that I knew I wasn’t just going crazy.
The only problem was that we still had no plan for medical treatment going forward. Dr. Thomas and Patricia thought that I should go to rehab. However by then, I’d been in the hospital over four months, and all I wanted was to go home.
My dad was saying that he refused to let me come home with the port and the GJ tube. He kept trying to convince everyone to put me in the psych unit. My drug-induced breakdown was his evidence that I was unstable. He thought the psych unit would remove all of my tubes.
Feeling Suicidal Over a Life Forever Changed
The hazier my future was, the more depressed and anxious I became. Thoughts of suicide began rising up in my head. Detailed plans of how I would do it, flashed through my head at night. I was having a harder and harder time chasing them away.
Now, with this Autonomic SFN diagnosis, everything was changed. It was looking like my plans on finishing nursing school were just pipe dreams. I was wheelchair-bound for the most part at this point and needed oxygen overnight. Sometimes I needed oxygen during the day if my O2 level fell below 92%. I was dependent on catheters, continuous IV fluids, and GJ tube feedings, my illness was going to take my life if I didn’t respond to the IVIG treatment. It was a whole lot to swallow.
Requesting a Medical/Psychiatric Hospitalization
Upon my request, I began meeting with one of the social workers to vent about my situation and fears. For once, maybe my dad was right. Maybe I would benefit from a stay in the medical-psychiatric unit to work through my anxiety and depression.
At our next big team meeting, we decided that I would be going to get psychiatric treatment on Blake 11, the medical psych floor.
“We’ll continue everything we’ve been working on so far,” Dr. Thomas explained. “We will continue to check on you every day and manage your medical care. We’ll have you continue your IV infusions through your port and GJ tube feedings while on Blake 11. We will also continue your PT and try to transition you from using the wheelchair to using the walker. You’ve made so much progress, and you may be able to continue to going forward.”
Making Plans to Move Forward
“Thank you,” I told him hoping I would make more progress going forward.
“You’re one of the most resilient people that we know.” Patricia added.
I thanked her again as well, my face burning bright red with all these compliments.
“Once you’re ready to go home, we’ll get you in-home nursing, in-home PT, and in-home OT. All your medical supplies with be delivered regularly to continue your treatments at home. ” Dr. Thomas explained to us.
“We know how to work the feeding tube pumps and use a feeding tube. However, we’ll need a little training on the IV pumps. That and on hanging IV fluid,” my mom explained to Dr. Thomas.
The visiting nurse will give you all the training you need. She’ll be the one accessing and de-accessing the port-a-cath,” explained Patricia.
“Next we have to have you start IVIG to improve your symptoms. It will help with your pain. IVIG will also up your quality of life,” Dr. Thomas told us.