A Daily Struggle to Survive

My life has never been what you would call easy or straightforward.  Every day was a struggle to survive despite unstable vital signs. Doctors unfamiliar with Small Fiber Autonomic Polyneuropathy had no idea how to treat me. Over the last few years, I had been losing more and more mobility. At this point, I was wheelchair-bound. I needed one or two people to help me stand and pivot to transfer in and out of my wheelchair.,

Because of my gastroparesis, I couldn’t eat anything by mouth and survived on tube feeds 24/7. I also had a special tube that drained out the contents of my stomach: bile, air, and sugar-free clear liquids. which were the only things I was allowed to take in by mouth.

My body was starting to reject the tube feeds. The problem was, I had such a poor immune system that the doctors were reluctant to start me on TPN (IV nutrition). Because of the high sugar content in TPN, it is a breeding ground for infection.

The IV Bags That Don’t Even Help My Unstable Vital Signs

In addition to the tube feeds, I also required an intravenous bag with potassium, sodium, vitamins, minerals, sugar, and medication. It ran 24/7, just like the tube feeds. Also at the same time, I ran a second bag of intravenous fluids (normal saline – salt water) just to keep me hydrated. These ran in through a port-a-cath I had, that had been surgically inserted a couple of years earlier when I had spent five months at Mass General.

People with dysautonomia require large volumes of fluids and salt. Small Fiber Autonomic Polyneuropathy is a severe form of dysautonomia. But, even with my daily IV fluids I still struggled with unstable vital signs

I had to take all my medications crushed up through my J tube. This always made me incredibly nauseous and we had to chase it down with IV anti-nausea medications through my port-a-cath which was constantly accessed.

A Dad Still in Denial

On top of my complicated medical health issues, my dad continued to insist that I was faking all my illnesses, and my mom had a hard time standing up to him. On other days he told everyone that I had some type of functional neurological disorder. A functional neurological disorder is where you are so mentally and emotionally unstable that your mind creates physical symptoms.

With a functional neurological disorder, there is no underlying physical issue that is wrong with you. If my issue really was a functional neurological issue, I wouldn’t have unstable vital signs. Doctors repeatedly tried to tell him that I had positive test results that couldn’t be faked. They even tried showing him the lab reports, pathology results, and more

No matter how many doctors tried to tell him that they had real positive test results showing my various conditions, he still insisted I was healthy. The nurses could show him the vital signs on a heart monitor screen, and he would insist it must be reading wrong.

Things got even worse from there. After a three-month hospitalization at my local hospital, my parents lied to me. They said the nursing home I was going to was just for rehab. Then, after three months there, they dropped the bomb on me that they would not allow me to come home.

Loving Jeff and a Change in Perspective

Yes, I definitely had a whole lot of complicated issues. However, ever since Jeff and I met at Side By Side Assisted Living where I was now living at age 26, my priorities had changed. This, in a way, had really simplified my life.

Now the way I thought about things was, as long as I had Jeff in my life, then I could handle anything that came my way. He loved and cared for me unconditionally.  The unconditional love I had for Jeff ran so deep that it became all that mattered. You could have told me that the two of us were going to become homeless, and I would have thought to myself, “well as long as we’re together we can figure this ou”t.  Nothing would phase me as long as he was in my life. Even unstable vital signs were nearing incompatibility with life, were not going to be enough to distract me from him.

Slightly Whacky Vital Signs

Jeff and I both felt like we could take on the world as long as we were together. The two of us still always had a lot of severe, life-threatening medical crises popping up.  A week and a half ago I went home from the hospital after a UTI made me go septic. Once I was home, I thought things were finally going to stabilize. I still had unstable vital signs, but nothing else was critically off.

A Double Lumen PICC Line

While I was in the hospital I got a double-lumen PICC line . This was because my port only had one lumen and we already had a Y-site splitter on it. We used one side for a normal saline bag and one side for my souped-up nutrient-infused bag.

The problem was that I was on a three-week course of IV antibiotics now as well, and we needed somewhere to infuse them into.

Ignoring the Unstable Vital Signs

Once I was home from the hospital, I went back to my routine of hanging out with Jeff, Lauren, and Melody.  My mom and I talked to each other on the phone every day.  I worked on writing projects and was editing a full-length novel I had written. The novel was almost ready to start sending out to publishers. I wasn’t thinking about hospitals or my unstable vital signs, even though I was still running the IV antibiotics three times a day.

Jen, my visiting nurse, came twice a week. When she came for her visit in the middle of October, about a week and a half after I had been home from the hospital for sepsis, she was worried about me. She took my pulse, blood pressure, respirations, oxygen level, and temperature and wrote down my unstable vital signs, shaking her head as she recorded them.

“We need to call Dr. Rose,” Jen said.

“Give it some time,” Dr. Rose told her, “Her body is just recovering from a major medical crisis.”

But then, later that night I woke up at 2 AM with my heart racing so fast that I couldn’t catch my breath. I picked up my finger probe oxygen monitor off my bedside table and checked my pulse and 02 Sat. With all 3 L of oxygen onboard, my 02 level was 86% and my heart rate was 178. These vital signs were bad. Even for me. I knew I had to call for an ambulance. There was no safe alternative.

Shocking EMS With My Awful Vital Signs

Once again EMS and firefighters showed up at my apartment.  At first, they didn’t believe me when I told them how high my heart rate was, and my inkling that I had unstable vital signs for everything else as well. Then I pulled out my pulse oximeter and put it on my finger to show them. They had me put it on different fingers and each finger showed that my heart rate was somewhere between 175 and 180.  Because they were still skeptical they took out their own pulse oximeter and stuck it on my finger. What do you know?  It read 178.

Finally, the appropriate amount of concern crossed their faces. They began asking me other questions about my recent health as they carried me and all my IV bags and everything else, from my bed to the stretcher that wouldn’t fit all the way next to my bed.