Dr. Thomas and His Nurse Practioner Patricia = Complex Care Team
I could tell that my life was forever altered before even leaving the hospital. After living there for five months the hospital had almost become my home. The Complex Care Team came into my room on the morning I was scheduled to be discharged. The Complex Care Team consisted of Dr. Thomas, the attending, and Patricia and Tanya, the nurse practitioners.
Tanya only worked on Patricia’s days off. They all specialized in taking care of patients with rare and complicated medical conditions.
Now, whenever I went to Massachusetts General Hospital they would be my head doctors. It didn’t matter what floor I was admitted to or when I was admitted, either. They would always be the doctors in charge of my care.
Even today they remain my attending hospital doctors whenever I am admitted to the hospital.
The End of an Era
I had spent two weeks and some change in the medical psych unit. Before that, I had spent four and a half months on the intermediate care floor. The intermediate care floor was a bridge between the ICU and the regular floor. Some of the four and a half months were spent in the ICU as well.
After the Complex Care team came into my room, others followed. In came, Steve, my social worker on the unit, and Dr. Ahmed, my psychiatrist on the unit. They showed up around 9 AM and shut off my TV. The TV had been running all night long for white noise.
Oddly enough, their shutting the TV off is what woke me up.
“Big day today.” Dr. Thomas smiled at me as I rolled over and sat the bed up.
“It’s the end of an era,” Patricia smiled at me.
“I know, I can’t believe I’ve been here over five months,” I agreed.
A Change in Normal
“We’ve started you on some new psychiatric medications here on our unit. You’ve also done some tough work in therapy,” Dr. Ahmad added. “We’re proud of you.”
I had assumed that the social worker was going to be calling my mom or that he had called my mom. What I figured was that she was going to pick me up sometime in the early afternoon. That was what usually happened when I was discharged from the hospital. What I hadn’t thought through was all of my new tubes and bags, my wheelchair-bound status, and everything else along those lines.
Up until then, I hadn’t really processed just how much my life had changed. It never occurred to me how different my life would be once I got home.
Then Steve spoke up.
“You need to be on the IV fluids and on the tube feeds continuously. Because of that, we will have to send you home by ambulance.” Steve, the social worker, explained to me.
Turning My House Into a Hospital
“Besides, with all the stuff you’ve accumulated here with you, we’d need to rent you a U-haul otherwise!” Patricia joked with me. I did giggle.
“The home infusion company already knows you’re coming home today. They will be sending your IV fluids, tube feed, pumps, and all the supplies that go with them. They will basically be sending anything you could possibly need for home infusion care. We sent the scripts a few hours ago, and they confirmed that they got them,” explained Steve.
“But how will I know how to run anything or hook up?” I asked.
“A nurse will be at your house when you get home to train you on running your IV fluids on the pump.”
“Thank God!” I sighed.
Learning from a Visiting Nurse
“From now on, a nurse will come at least once a week,” Steve continued.
“That’s it?” I asked.
“I said, at least. At first, the nurse will come more often to train you on the pumps and everything you need to learn to do for yourself on a daily basis. But she has to at a minimum visit once a week. That’s because she has to draw your blood, de-access your port, re-access your port, and change your dressing. Then you can hook yourself up to IV fluids.” Steve explained.
“What about the GJ tube? I don’t really know how to do anything with it. It’s completely different than my NJ tubes were,” My voice had some panic in it. How was I going to learn all this stuff? I just hoped and prayed that my mom would be with me when the nurse came over. That way she could help me if I forgot how to do part of something.
A Bittersweet Departure: Saying Bye to Every Nurse and Patient
“The nurse will also teach you to use and care for your GJ tube. You will learn how to keep your GJ tube stoma clean and monitor your G tube drainage. Another thing the nurse will teach you is how to watch for granulation tissues, and infection. Every time the nurse visits they will check your vital sounds and troubleshoot any other general nursing issues” Patricia explained to me.
“When will the ambulance be here?” I asked.
“The ambulance will be here in a few hours,” Steve told me. “We’ll have someone help you pack.”
Once I was all packed up, they put everything in bags. We put the bags near the foot of my bed. Then my nurse for the day folded up my wheelchair as small as it would go. After my nurse boosted me up in bed and turned my TV back on, she had people start coming in to say goodbye. All of the nurses and other patients came into my room a few at a time. They said their goodbyes and good lucks to me. It was bittersweet.
“You hang in there,” I told Elsie.
“You too,” Elsie told me.
We gave each other big bony hugs and tried not to crush each other.
Headed Home in an Ambulance
I felt silly when the paramedics got there because it felt like a big fuss over nothing. However, everyone explained to me that it was the only way to do it because I couldn’t maintain my blood sugar, potassium, hydration, or anything for a two-hour drive, and if we hit traffic, forget it.
“This is totally and completely necessary. There is a reason you have all of these tubes. You just spent five months here getting healthy, we don’t want to make it all for nothing,” the paramedic that sat in the back with me explained.
As I said, things had changed a whole lot in just five months.
The closer I got to home, the more and more excited I became.
Calling The Nurse Panic Button
Falling back into life at home, however, wasn’t as easy as I had thought it would be.
Because I couldn’t manage the stairs to my bedroom, I had to sleep on the pull-out couch in the living room. My old feeding tube backpack wasn’t big enough to hold my J tube feeds and my IV fluid. I had to order a new bigger one.
Just like Complex Care (Dr. Thompson and Patricia) had described, a nurse met me at the house. She was waiting on the front porch when the ambulance pulled up.
At first, she came every other day at first to assess me and then to teach me to care for myself. She was always available for troubleshooting any emergency issues that we would run into. At first, I was calling the nurse multiple times a day. I would panic every time the pump beeped funny or I felt a new pain.
Having My Nurse De-access and Then Re-access Me
Eventually, the plan was that the nurse would only come once a week to de-access and re-access my port. This included taking the clear, plastic sticky dressing off. Then she would take the old needle and tubing out of the port in the surgically placed pocket of my chest. After that, she would clean the site with sterile swab sticks and put skin prep on.
Once the skin prep was on the nurse would put the new needle in with the little tubing trailing off it. The last step was to cover the new Huber needle with a new clear plastic sticky dressing and have the nurse sign her initials and the date the dressing was changed on.
Causing a Glitch in the Family Dynamics
I also worked with a nurse aide who had to help me shower, change, brush my hair, do laundry, and help me move around the house with the walker or the wheelchair (whether I used the walker or the wheelchair depended on how strong I felt that day). When the aide wasn’t there, I had to depend on my mom for everything.
My dad refused to look me in the eye because of my tubes and the fact that he thought I didn’t need them. He also acted as though I could walk fine and didn’t need the wheelchair or walker. He refused to hold open doors for me and complained when I asked him to put my walker in the backseat when I got into the front seat of the car.
Whenever I was around my dad, his face looked angry and distracted. If I asked him if he was mad at me, he would just snap at me that he wasn’t. My brothers were grossed out by the tubes as well, and my mom explained that they didn’t like them. It was almost as if she thought there was something I could do about it.
Living in a Toxic Mess
My mom was the only person in the house that would still talk to me. Nevertheless, we had tension in our relationship as well because I always needed her to help me with different activities of daily living. Although she worked from home, she couldn’t be there for me every second like I needed her to be. She would snap at me when I asked her to help with too many different things.
The house was turning as toxic as it had been back when I was ten, and this whole mess had first started.
It was around winter break from school when I had finally come home from the hospital, and my future loomed in front of me like a giant question mark.
Can I Still Be a Nurse?
I’d had a lot of PT and OT while I’d been in the hospital, but as I was still very dependent on the wheelchair and walker to get around, and still needed help from another person when I did use the walker, I couldn’t get medically cleared by my doctor for nursing school.
With all of my additional medical paraphernalia, I would have had too hard of a time navigating the hospital and participating in providing patient care. A nurse can’t function with all those tubes and bags hooked up. This was in addition to the fact that everyone would stare at me and wonder what business someone with all of these medical problems had taking care of other sick patients.
Plus, the head of the nursing school explained to me that I was an infection control risk with all of my open stomas that had tubes in them.
A Crushing Blow To My Dreams of Becoming a Nurse
“You can not return to nursing school until you can walk without a walker, lift ten pounds, and have no tubes that need to be connected to bags and pumps in a backpack. if that can’t happen within ten days you will have to change your major.” The head of the nursing school informed me straight out.
It was unclear whether I would ever be able to walk without a walker again. There was no way in hell I would be able to start walking without a walker and lifting ten pounds within ten days.
After what the Complex Care Team had explained to me, I knew that I had a chronic, incurable illness. I also knew that I was probably going to be reliant on IV fluids through my port, oxygen, and my GJ tube for the rest of my life. That would probably be the case. even with my IVIG treatments helping me, whenever they started. They had also explained to me that the disease was degenerative and that more treatments and interventions would be necessary over time.
With a heavy heart and only one clinical and the NCLEX away from becoming a nurse with an RN BSN, I switched my major from nursing to professional writing studies. Then I fell into a funk.
Realizing I Can Never Be a Nurse
I had always dreamed of being a nurse. My dreams had been of nothing else. Now the dream was being crushed by Autoimmune Small Fiber Autonomic Polyneuropathy. If I looked at the full picture now, it was unclear whether I even had a future.
It was hard getting used to life as a sick person. It was hard to say what the worst part was, the helpless feeling or the staring.
I didn’t mind when kids stared at me. What bothered me was when they stared at me, and then the adults stared at me for a long moment too, before ushering their children away from me. It was like I was contaminated or harmful.
When school finally started back up, I was relieved to get out of the toxic soul-crushing environment that was my house. However, all of the students would look at me with pity and then look away like they were guilty.
Feeling Less Than Human
I felt less than a human with the way people looked at me. They were nice too, they would hold the doors or pay for my coffee. The problem was that I always felt helpless and different. I should have been used to it with the NJ tube stares. Those, however, were nothing compared to the stares I got now.
I used a walker or wheelchair to get around. My right chest had a Port-a-Cath in it that looked like a clear plastic piece protruding from it with tubing coming out of it, coiled up and clipped to my t-shirt with a special “Tubie Clip”. The rest of the tubing let to my backpack.
My Feeding Backpack
Tubing also came out from under my top where my GJ tube is, and the G tube tubing led to a bag that either hooked onto the waistband of my pants when I was using my walker or hooked onto the loop of my seat cushion when I was in the wheelchair. The J tube tubing came out from under my shirt and was clipped with another “tubie clip” to the bottom of my shirt and this tubing led to my backpack as well.
The backpack had a hole in the bottom where the two sets of tubing came out. I also wore oxygen all the time now, and I was only 4’10 and about 73 pounds on top of all that. The stares were inevitable at college.
I’m Not a Nurse, But I’m a Writer
When I was at school, taking writing classes, reading, and work-shopping projects, I felt good about myself. I felt purpose when I was submitting pieces of writing to different publishers or sharing a project with my classmates. It was similar to the feelings I’d had when I’d been taking care of patients like a real nurse in the hospitals, and nursing homes during clinicals. School is what kept me alive in the year after the ultra-long hospital stay that had finally provided me with a diagnosis. Life at home, however, was far from livable.
De-nial is a River That Runs Through My Family
Even with physical therapy, I couldn’t get strong enough to walk without a walker, in fact, I seemed to be getting weaker. It didn’t help that I had to lug along a big heavy backpack filled with medical paraphernalia. My dad insisted that if I just tried harder, I’d be able to walk, eat, drink whatever I wanted, and lead a healthy life.
Because my dad wouldn’t put my walker in the car for me when we went places together, I would have to lean against the car with all of my weight to fold the walker. Then I had to carefully balance myself to put it in the car. This made me fall half of the time. My dad would rarely help me back up. Once the walker was in the car I had to slide my body along the side of the car to slip into the front seat. It was a major project and caused immense physical pain. The problem was that my dad was so convinced that I was faking that he wouldn’t help at all.
I Am Not Disturbing Because I Am Sick
My brothers avoided me and didn’t want anything to do with any of my medical equipment. My mom would get on my case if I left syringes or flushes on the table in the kitchen.
“It disturbs your dad and brothers too much,” she would tell me.
I felt like I was being treated as though my illness was somehow my fault.
My mom wanted me to sit at the table during meals for family time and would encourage me to drink my sugar-free clear liquids while everyone ate. Luckily the liquids would just drain out the G tube port into my G tube drainage bag. My dad would stare me down at meals like he expected me to eat something and would act disappointed when I didn’t.
Trying to Educate My Dad
“If I eat, it won’t get digested; I’ll just throw up. If I eat and don’t throw up the food will just sit in my stomach, rot, and turn into another bezoar or bowel obstruction. I’m not trying to hurt you by not eating, it’s just that eating isn’t safe for me, it’s why I have a feeding tube and IV fluids.” I repeatedly tried to explain to my dad.
No matter how many times I tried to explain this to my dad, he still wouldn’t listen. He had all of my grandparents, aunts, uncles, and cousins, also believing that I wasn’t actually physically sick, that I just wanted to be ill, and had somehow fooled all of the doctors into giving me tubes. My mom was the only one who believed that I was sick, but she wouldn’t stand up to my dad for me.
Seeing a Therapist Again
I felt so alone and misunderstood. It didn’t matter that I’d had extensive testing and a diagnosis, I was still getting treated like I was crazy. Even my own family didn’t believe me.
As the desperation and depression intermingled and intensified with my tumultuous home life, I decided that I would start seeing a therapist again.
I was so nervous before my first appointment with the therapist. My biggest fear was that she would be like the one I had seen when I was ten. That therapist made up a whole story of what was wrong with me. Her story wasn’t even founded in reality. When I was ten, the therapist assumed she knew how I was feeling without even talking to me about anything.
Getting to Know Anne
“What is going on that brought you here?” the therapist, whose name was Ann, asked me at our first appointment. I liked that even though she was looking at me, it didn’t feel like she was staring at me or judging me.
“I’ve been sick since I was eight,” I explained. “I got misdiagnosed with anorexia nervosa when I first got sick and the misdiagnosis nearly killed me. It resulted in major surgery for a bowel obstruction. My whole life has been going in and out of hospitals. This year I finally found out that I have a chronic, degenerative, life-limiting, and life-threatening neurological disorder.”
“That sounds difficult. I’m sorry that you are so sick. Is it the stress of being sick that’s making you feel like you need therapy?” she asked me.
A Home Life Built on Nightmares
“Partly. The main reason I need therapy is to help deal with being sick, but I also need help dealing with my home life. My life at home is built on nightmares. My dad thinks I’m faking sick, and my brothers can’t handle looking at me because my tubes gross them out. Then there’s my mom who won’t stand up for me.”
“That sounds like a terrible situation,” Ann said.
Autonomic SFN Crushed My Dreams of Being a Nurse
“It is,” I agreed. “ I dreamed of being a nurse. I used to be in nursing school, I had a GPA of 3.98 and I rocked at clinicals because of all of my personal experience. Now I can’t do that anymore either. All because of the damn Autoimmune Small Fiber Autonomic Polyneuropathy.”
“Is there any treatment for this disorder?” Ann asked me.
“I’m going to be starting a treatment called IVIG, but I have to meet with the neurologist from the nerve injury clinic first,” I explained. “I just wish I could snap my fingers and just be all better and have a normal life, but I am so far from normal that I don’t even know what normal would look like.”
My Writing Gives Me Purpose
“What do you like to do for fun?” Ann asked me.
“I love art, crafts, writing, reading, collecting Build-a-Bears, and online shopping.”
“What do you do that makes you feel fulfilled?” she asked me.
“Writing,” I answered immediately. “I wrote a book that got published, have published literary journal articles, have two blogs, and I’m getting a bachelor’s degree in professional writing studies.”
“It’s essential to find things in your life that make you feel as though you have a purpose. I’m glad that writing is something that you have found helps you feel fulfilled. I think it’s vital that no matter how sick you feel, you do at least a little bit of writing every day. Your disease may have stolen your nursing dream, but there are always other ways of pulling through, being successful, and having a meaningful life.”
Anne and I met for an hour, and we decided that I would see her once a week for a while and also that we would attempt to get my family into family therapy to make our home life tolerable again. I was afraid to get my hopes up, but talking to Ann made me feel like I had a little control back in my life again.