How I got my Port-A-Cath

You might have noticed that aside from my 2022 Yearly Recap, my blog has been silent recently. Part of this was due to my need to focus on finishing my Master’s Degree, for which I obtained on May 14th, 2022. But a larger part was due to my health becoming more unstable. Once again, I found myself fighting for survival. I alluded to this fight in my 2021 yearly recap, but I never had the energy to expand upon it. Now, I am able to fill in more of the story.

This will be one of my longest blog posts, but I want to finally document how I got my port-a-cath. And trigger warning, this is considered a hard read. It has a happy ending, but it was a scary journey to get there.

The Background

What started out as me receiving one liter of saline weekly in my PCP’s office turned into two liters of saline weekly. This then morphed into multiple liters of saline multiple times a week complete with multiple IV pokes, hypoglycemic crashes, and 100mg solu-cortef injections within her office.

Something was off. Something was different. And whatever it was, it was getting worse.

Thursday, January 20th, 2022 was the start of a particularly bad episode.

Thursday January 20th, 2022

The Community Paramedic

After seven failed attempts to start an IV, my PCP requested that a community paramedic come into her office to see if they could access me. In theory, the community paramedic program is supposed to act as a safety net where highly trained EMT’s are able to respond to pre-qualified patients. The goal is to provide more tailored emergency health care for the individual.

In reality, they seem to only send out their most incompetent and egotistical personnel. I had already met this particular EMT when he came to my house to formally enroll me in the program a few months prior. He made me incredibly uncomfortable and I denied him access to my house for future visits. He wanted to stop by at least once a month to “check in on me” by checking my blood pressure. I told him no.

When my PCP’s office requested a paramedic through the community paramedic program, he was eager to rush to the scene. OF COURSE he could start an IV on me!

He failed. Twice.

On his third attempt, he decided to go for my wrist without any warning and without my consent.

The medical assistant in the room who was observing the situation later described what she witnessed as him harpooning my wrist without following proper sterile protocol.

While I had been hovering very close to an adrenal crisis, his harpooning of my wrist was the final trigger. I started crashing into a full blown adrenal crisis.

The Adrenal Crisis

Suddenly, my PCP was back in the room delivering my emergency solu-cortef injection and the medical assistant was calling 911 for transport to the hospital. Meanwhile, the community paramedic was mansplaining to my PCP that the reason he could not start an IV on me was due to the fact that I take steroids (FALSE). He continued to lecture her about my medical history and how he was going to take good care of me.

My PCP told him to shut-up, leave the room immediately, and by the way, it was her that filled out the original paperwork on my medical history. He didn’t know my medical history, she did. He was wrong in his assessment, and all he had done was made the situation worse.

The First Ambulance Ride

When the ambulance arrived with two new paramedics, they immediately apologized to me for having to deal with “Hot Mess Express Chris.”

Question: If it is well known that an individual is so grossly incompetent to the point of becoming a liability why do you keep him around?

The First Hospital Visit

The ER doctor was able to successfully place an IV via ultrasound in my upper right arm. This was attempt number eleven, and he was the third individual who tried.

Both the ER doctor and my PCP wanted me admitted to the hospital floor for overnight observation, but there was no room due to the COVID wave overwhelming the medical system. As a compromise, I stayed on the ER floor but was officially transferred into the hospital’s domain. I was in this weird limbo purgatory where it felt like I was forgotten about.

Friday January 21st, 2022

The First Hospital Discharge

After a very difficult night’s sleep, I woke up on Friday itching to get out. No one was checking in on me, and my room provided very little privacy. I begged the doctor on the hospital floor to allow me to be discharged. If I was going to be ignored, I might as well be at home with my cats. Plus, I honestly thought I had stabilized and was doing better.

Saturday January 22nd, 2022

On Saturday, I woke up once again not feeling well. I fell into the “Netflix Trap.” I tried to watch a few hours of streaming TV, but instead of feeling better I felt worse and ended up not being able to move. Once again, I needed emergency medical intervention.

The 911 Call

At the urging of my friend Michelle with whom I was texting, I called 911 and requested an ambulance transport. It was difficult for me to communicate, as I was once again crashing towards an adrenal crisis. But I requested that the operator reference the “premise alert” already on file for my property.

Instead, the operator scolded me for crying and told me to “calm down.” When I am crashing towards an adrenal crisis, I cannot just “calm down.” My body is systematically shutting down and I rapidly lose my ability to communicate with the outside world. In-between my strained gasps for breath, I pleaded with the operator to reference the “premise alert.” He confirmed that he saw it, but he would be unable to help me unless I stopped crying and clearly explained the situation to him.

Supposedly, the “premise alert” was set up by “Hot Mess Express Chris” and its goal was to immediately alert 911 operators that the individual living at this property had several medical conditions that might limit their ability to communicate effectively while having a medical emergency. If they dial 911 and request an emergency medical transport, the operator is to not ask questions and immediately dispatch an ambulance because time is of the essence.

Instead, this male operator just kept repeating, “I can’t help you if you’re sobbing. You need to calm down.”

Frustrated and scared, I hung up on him and called my PCP. She immediately sent over the same medical assistant from the day prior to serve as an advocate for me. 911 also called me back, this time with a female operator. I merely screamed “ambulance!” and transferred the call back to my PCP to remain in communication with her.

The Second Ambulance Ride and Hospital Visit

My advocate, the medical assistant, arrived at my house shortly after the ambulance. She was on the phone with my mom, who was across the country in California. We all knew I needed another emergency injection of solu-cortef, but the paramedics refused to deliver it. My advocate injected me, which stabilized me enough for transport.

I arrived at the same hospital that I had been discharged at not even twenty-four hours prior. In fact, the same hospital doctor and the same ER doctor were still working. When the ER doctor saw me again, he immediately transferred my case to the hospital doctor.

The Second Hospital Discharge

The hospital doctor was mad that I was back. She told me that I was fine and that there was absolutely no treatment she could provide me with. I needed to leave. She left the room in a hurry, not realizing that my PCP had been on speaker phone communicating with my advocate.

My PCP requested that my advocate hunt down the ER doctor so that she could speak with him in order to discuss my care. Unfortunately, because I was out of his domain, he had no authority to do anything. The next thing I knew, a nurse came barging into my room yelling at me because I was still there. Apparently I had been discharged 30 minutes prior and it was selfish for me to keep the room. She forcibly ripped the IV that had been successfully placed earlier that day out of my arm and without my consent.

This was incredibly traumatic for me. If I didn’t have that advocate with me from my PCP’s office, things would have been so much worse.

The Third Hospital Visit

As my advocate and I sat in the parking lot in her vehicle with my PCP still on the phone, we tried to determine the next best step. I was clearly unstable but this hospital system had proven it was not safe for me. It was decided that I would be driven across town to another hospital system to seek additional care.

In triage in that new ER, I crashed bad towards another adrenal crisis. My PCP remained in constant communication with their medical team and I stabilized once I received another emergency injection of solu-cortef. Unfortunately, this hospital system was also overwhelmed by the COVID surge. I sat in the waiting room with my advocate for an additional four hours until an ER bed opened up.

Around 9PM, they found an ER bed for me. I also required another emergency injection at that time, as it seemed they were only stabilizing me for 3-4 hours. They agreed that I needed to be further monitored.

Sunday January 23rd, 2022

Around 3AM on that Sunday, a nurse came into my room and told me that they had found a bed for me on one of the hospital floors. It was on a COVID floor, but I would be placed in the non-COVID wing. My mom also was set to arrive around 3PM that day. She was able to drop everything and get across the country to me in under twenty-four hours. And for that, I am so thankful.

I met with the new hospital doctor and retold my story. She agreed that it was wise to keep me under medical observation, as I was still dealing with unstable blood sugar in the form of hypoglycemic episodes.

Monday January 24th, 2022

The Potential Third Hospital Discharge

On that Monday, the hospital doctor suggested a discharge. I pleaded with her to not release me without a plan in place for continuing care. This was not sustainable. I was not sure if I could survive another episode similar to the last several days. I needed a PICC line, or something.

She heard me. But she also told me that I was not a good candidate for a PICC line. I was distraught when she left the room.

A few hours later, a new doctor entered my room. She was a surgeon and she informed me that I was on the schedule for an in-patient surgery to place a port-a-cath early Tuesday morning.

Tuesday January 25th, 2022

A Surgery with the Third Hospital Discharge

The surgery went well, but it did take longer than expected. I was released that Tuesday afternoon to continue to recover from home, with my mom by my side. I was unsure of what the future looked like, but at least I did not have to fear losing IV access.

Thoughts, One Year Later

Seeking Medical Treatment During the Worst COVID Surge

One of the scariest things about this whole ordeal was the lack of capacity at the medical facilities. My PCP wanted me hospitalized that Thursday. Yet, it wasn’t until 3AM on that Sunday until they found a spot for me. We knew it was due to the COVID surge, but it wasn’t until several months later that we could comprehend just how bad of a surge it was.

Do you see that massive spike in the chart below? That was when I was hospitalized.

It was scary to hear “CODE BLUE” on the intercom and then learn that the patient only a few doors down from me did not survive. The nurses often used my room as a respite, as I was COVID free and a unique case. I also got to experience one “CODE SUNSHINE,” in which a long-term COVID patient is discharged. My nurse told me that those are rare, but always celebrated.

What Caused it?

We have a few theories to explain WTF happened to me. One of them involves my tonsils, which I got removed in August of 2022. We are not sure how long they were infected, but it might go back all the way to January 2020 and that unexplained illness that was not COVID. Untreated infections make adrenal insufficiency much more brittle.

The other theory is that my body does not properly process and retain electrolytes. My endo believes that I have a “not medically described disease.” He believes he has identified what is “broken” in my pathway that has been causing all the issues such as my broken adrenal glands, my broken parathyroid, my volume depletion syndrome, my cerebral salt wasting, and my inability to hold onto both sodium and potassium, to name a few. It’s more complex than just Addison’s Disease. We’ve been exploring other treatments and I will say that my health appears to have become more stable.

Final Thoughts

There are three events in my life that were beyond terrifying and I wasn’t sure if I would survive.

The first was my Nightmare Crisis of 2013, which opened up the door for my cortisol pump. The second was my divorce from my abuser in 2017. I escaped him, and I am quite proud of the life that I rebuilt after he tried to utterly destroy me. The third was this episode.

However, good came from this adventure. I have a port now. This port has opened up many doors for me. It’s not perfect and it definitely has some drawbacks. But it has given me back some of my quality of life.

One year ago, I thought I was going to die. Now, I just got back from exploring Vancouver with my Pilot. I was able to run IV fluids through my port in my hotel room.

It was a scary path to get to where I am today, but I am incredibly thankful for the destination.

I will forever fight to remain Clearly Alive. And I am incredibly thankful for those who fight alongside me. Without the actions of my mom, my friend Michelle, my PCP, and her entire office, I am not sure that I would have survived this.

But I did survive.

I am Clearly Alive.