Trying to Maintain Normal Vital Signs
My life has never been what you would call easy or simple. Every day was a struggle to even attempt to maintain normal vital signs. Doctors unfamiliar with Small Fiber Autonomic Polyneuropatny 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 could eat nothing by mouth and was on tube feeds 24/7. 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. In addition to the tube feeds I also was on an IV bag with potassium, sodium, vitamins, minerals, sugar, and medication. It ran 24/7 like the tube feeds. Also at the same time, I ran a second bag of IV fluids to keep me hydrated. People with dysautonomia require large volumes of fluids and salt. Small Fiber Autoniomic Polyneuropathy is a form of dysautonomia. Even with my IV fluids I struggled to keep my vital signs normal
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.
A Dad Still in Denial
My dad continued to insist that I was faking all my illnesses. 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.
Doctors repeatedly tried to tell him that I had real positive test results. 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 my awful vital signs on a heart monitor screen, and he would insist it must be reading wrong. 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, I would have thought to myself, well as long as we’re together we can figure this out. Nothing would phase me as long as he was in my life. Even crashing vital signs 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. Despite that, I thought things were finally going to stabilize once I got home from the hospital. My vital signs were still kind of whacky, but nothing 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 a bag of dextrose, salt water, with potassium, vitamins, certain medications, sugar, and trace elements. I was on a three-week course of IV antibiotics now as well, and we needed somewhere to infuse them into.
My arm was so little that I was able to pick out the kid’s PICC line covers and they had awesome patterns like unicorns and pandas and rainbows and tie-dye. It was exciting to go online and pick out fun colors and designs to order.
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 vital signs, even though I was still running the IV antibiotics three times a day.
However, the visiting nurse (Jen) came for her regular visit. Jen 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 vital signs and then shook her head when she wrote the numbers down.
“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 the night Jen had called Dr. Rose about my concerning vital signs, I woke up at 2 AM my heart racing so fast it was hard to breathe, Knowing I couldn’t take all of my vital signs myself, but needed to get some sort of reading of my health status, I picked up my oxygen monitor. We kept it on my bedside table. Quickly I checked my pulse and oxygen saturation. With 2 Liters of oxygen onboard, my O2 level was 89%, but 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. 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.
Unstabilized Vital Signs at Berkshire Medical Center
At the ER, once again, they had people waiting for me in one of the critical care rooms when I got there. They slid me with the sheets from the ambulance stretcher to the ER gurney and hooked me up to the wall oxygen at 3 Liters, my levels had been steadily dropping the whole time we’d been in the ambulance. Luckily, this time they didn’t have to poke me because I had four access points, I had the two lumens from my Port-a-cath (because I had the Y-Site splitter on it), and the two lumens on the PICC lines.
It took four liters of IV fluids to get my blood pressure up. They gave me repeat doses of metoprolol to bring down my heart rate, which then tanked my already low blood pressure (that they had finally gotten back up) to such low levels that they couldn’t believe I was still conscious. To get my blood pressure back up the nurses came in to load me up with pressors. My heart rate finally came down into the 150s.
They told me that 150s was my baseline. I knew this wasn’t true. 120s to low 130s was my baseline.
My Vital Signs Still Aren’t Normal
“Since your heart rate is normal now, we think we can discharge you home. There’s no point in keeping you here if all your vitals are normal.” The doctor informed me as people filtered out of the trauma room and the heart monitor squawking became less frenetic.
“But I just had a heart rate as high as 180 and a blood pressure as low as 64/32,” I said incredulously.
“Well, you did, but it’s resolved now, we have no grounds to admit you, your insurance company wouldn’t pay for a stay in the hospital,” the doctor told me, his fingers tapped the recording device he was holding and he kept looking at his beeper and back over his shoulder. He was itching to get out of the room and go see the next patient.
“But 150 is still a way too high pulse, that’s enough grounds to admit me and look for the cause of why my heart rate is so high,” I tried to get through to him.
“You have dysautonomia, your vital signs aren’t going to be perfect.” The doctor told me. “I have to go, the nurse will get you dressed and bring in your discharge paperwork.”
Too Sick to Go Home
The doctor immediately turned on his heels and power walked out of the room. I sat on the bed in total shock. Once again, my body felt like I’d gotten run over by a truck several times. Almost afraid to see the numbers,I looked at the heart monitor above my bed. My heart was tacking away at 150 beats per minute and my oxygen level was only 91% even though I was on 4 liters of oxygen with a mask, not even a nasal cannula. My blood pressure was only 90/54. These were not normal vital signs by any standard and yet they were about to discharge me.
This scared me a little bit, and I didn’t know what to do.
Just then my phone rang, I was going to ignore it because I just felt so completely drained out that I didn’t really have the energy to talk to anyone, but then I saw that it was Jeff calling, so I answered.
Coming Up With An Emergency Plan
“I saw an ambulance near your house,” he said. “Are you okay?”
“I’m at the ER,” I told him. “But they’re discharging me soon.”
“Oh, thank God,” he said.
“No, it’s not good,” I said.
“What do you mean?” he asked.
“My heart is beating way, way too fast. Like dangerously too fast. My oxygen levels are low even though I’m on 4 liters of oxygen, and my blood pressure is bordering on low. As soon as I pee out all of the fluids they used to get my blood pressure up from 64/32, it will bottom back out again. On top of all that, I feel spacy and far away and out of it,” I explained.
“What are you going to do?” Jeff asked.
“I don’t know what I can do, but I’m really scared,’ I admitted.
“Maybe could you go to a different hospital?” asked Jeff.
“That’s actually a really good idea, but I don’t know how I would get there?”
“You would have to let Berkshire Medical Center discharge you and give you an ambulance ride home, and then you could see if maybe Lauren or Melody could drive you to Baystate Medical Center,” Jeff suggested.
“Do you really think they’d do that for me?” I asked.
“You might have to pay them some money for gas, but if you die, they’re out of a job, so yeah I think they’d probably do that for you,” Jeff told me.
“Okay, let me call them right now.”
Discharging From Berkshire Murder Center
The nurse came in to have me sign the discharge paperwork and then I called and texted Melody over and over until I got a hold of her. Lauren was acting kind of sketchy, something about needing to go visit her boyfriend in New York City.
Melody was outraged that Berkshire Medical Center was being so incompetent and immediately agreed to drive me down. She didn’t even ask for any gas money. I told her I would give her $20 anyway.
The ambulance brought me home and Melody met me at the house.
Prepping to Go to Baystate Medical Center
“You look awful,” she told me.
“Geez, thanks,” I said.
“No I just mean you look really sick,” she clarified.
“I know, I know,” I told her and forced a smile.
We threw together a little hospital go-bag with deodorant, my laptop and charger, my phone and phone charger, a few outfits with socks and underwear, and a couple of Build-a-bears with a couple of extra outfits. We also grabbed my med bag for the ride down, my purse, a coloring book and markers, and my toothbrush and toothpaste.
Then Melody changed over my IV bags and tube feeding bag. While she gave me morning meds through my J tube I pushed my IV meds through my PICC line at the same time, and then she loaded me into her car for the hour-long drive down to Baystate Medical Center.
Racing Down to the Hospital
Melody was trying to talk to me during the ride down but I kept feeling a pull toward darkness. Every once in a while she would have me use my pulse oximeter to check my vital signs. We had brought my portable oxygen concentrator with us, even though normally, I rarely used it. Right then I was using it at 4 liters and my oxygen was only 90%. My pulse was steadily climbing back up like I had been afraid it would.
When we started driving my pulse was 157, when we were halfway there it was 169. By the time we were pulling into the ER entrance of Baystate, it was back in the 170s. and I could feel my heart body-slamming my ribcage like it was in a cage match battle to the death. I was feeling farther away too, it was like I was underwater and everyone else was above the water, and any incoming sound was distorted. My movements were clumsy too, I only had partial control over them.
“I’m going to get them to bring a stretcher out here to wheel you inside,” Melody told me about five times before I comprehended what she was saying.
I nodded and said “okay” but the word came out distorted and distant.
Arriving at The Hospital
My eyes drifted shut until I felt the cool chill of the October air hit me as the passenger side door was opened and someone undid my seatbelt and told me they were going to get me out of the car and into the ER to start getting me feeling better.
Hands grabbed at me and at the IV bags and tube feed bags and bags with the pumps in them and my G tube drainage bag. I was lifted from the car onto the cool white sheets and they hung up all my bags on that tiny little IV pole on the stretcher that didn’t look like it would hold anything.
Then they wheeled me inside to what I recognized as another trauma room. They were asking me a lot of questions about my health history, what brought me there, and how I was feeling.
Trauma Room One at Baystate Medical Center
It was all so overwhelming, and that blackness just wanted to pull me under.
“Ask Melody,” I told them when they asked about my health history. Melody gave them the rundown on my history of my Cushing brain tumor, my Small Fiber Autonomic Polyneuropathy that caused gastroparesis then total digestive tract failure, hypothyroid, anemia, seizures, POTS, kidney malfunction, liver damage, immune deficiency, neurogenic bladder, history of atrial fibrillation, issues with temperature regulation, constantly dilated pupils, low lung volumes, atelectasis, asthma, lack of ability to sweat, history of ventricular tachycardia, diabetes insipidus, and everything else, she even gave them a copy of my medication list that she had printed out before we left for the hospital.
Melody went on to explain how I had been at Berkshire Medical Center for similar symptoms and it had taken hours to stabilize my vital signs and get me in stable enough condition to even stay conscious, but once they did they had decided to discharge me, and how once I got home I just began to get sicker and sicker again.
Getting Permission to Pass Out
“How do you feel now?” the doctor asked me.
“Like total crap,” I told him, but my words came out all slurred and my lips were sticking to my teeth so I was barely understandable.
“Well, we are going to figure out how to get you feeling better and you are definitely going to get admitted no matter what,” the doctor promised me.
His permission was all I needed, I let myself fall into the blackness that had been pulling at me.
Waking up in the ICU
When I woke up, I was no longer in the emergency room, I was in a room in the ICU. I still had my double lumen PICC line in my right arm and my port in my chest, but I also had another central line in my neck, this one was a triple lumen central line, and then I had a special line stitched into the inside of my wrist. There were a million IV bags hanging on a pole next to me.
“That’s an arterial line,” explained the nurse, who had come in the room as soon as she saw that I had woken up. “It’s in an artery in your wrist and we use it to get the most accurate readings of your blood pressure which has been so low you could trip on it, it was also helping us know if we had you on the right ventilator settings when we had the tube in that was breathing for you.”
Weaning off of Life Support
So that explained the gravelly throat and the taste of lubricant in my mouth, they had had me intubated and on life support.
“How long have I been here?” I asked the nurse, almost afraid to hear the answer. One of the most frustrating things that happened to me was when I lost time due to being unconscious on Life Support, it felt like such a waste, especially lately, now that I was getting sicker and the question of how much time I had left was coming up.
‘Three days,” she told me.
“Does anyone know that I’m here?” I asked.
“We called your mom because she’s your health care proxy and I’m sure she told everyone who needs to know where you are, what’s going on.” The nurse assured me.
‘Where’s my phone?” I asked her.
The nurse picked it up off my bedside table.
“It was going off quite a bit, but then I think it died, do you have a charger with you?” she asked.
“Yeah, in my purse,” I told her.
Lucked Out With a Very Sweet Nurse
She went over to a closet, pulled out my Hello Kitty purse, and handed it to me, I ruffled through it and pulled out the charger to hand to the nurse so that she could plug it in. I needed to reach Jeff. Hopefully, my mom had gotten a hold of him and had been giving him updates, but I wasn’t sure. He was probably going out of his mind with worry.
The nurse listened to my lungs, heart, and stomach, adjusted some of the multiple IV bags, and gave me some pain medication, then she said she would leave me alone to make my phone calls.
“He must be one special guy,” she said.
“Oh, he is,” I told her, showing her the home screen on my phone which was a picture of the two of us.
‘I can tell the two of you are completely in love with each other.” She said.
“We were made for each other,” I told her. “God meant for us to be together, I am 100% sure of that.”
“I can see it in your eyes and posture and the way you hold each other,” the nurse agreed. “Let me get my little butt out of here so you can let your honey know you’re okay.”
Contacting Jeff
After the nurse left, I immediately called Jeff.
“You’re awake and talking,” he said with the purest joy in his voice.
“Yeah, thank God I took your advice and went to Baystate. If I waited any longer, I probably wouldn’t be here right now. You saved my life again,” I told him.
“Well, that’s me, Jeff the LifeSaver. My sisters always told me I was a Sour Patch Kid growing up, I knew I was really a LifeSaver.”
I giggled. Jeff was too funny sometimes.
“So did you have a good three-day nap on life support?” he asked me.
“Yeah, I shouldn’t need another nap for a little while. it seems like there’s so much I could have done in three days and I missed out on all of it because I was lying in an ICU bed with a machine breathing for me, a tube peeing for me, and a tube eating for me.”
“At least now you have your whole life in front of you again,” Jeff said.
“Good point, you always help me refocus the right way, I love that about you,” I told Jeff, trying to ignore the lingering voice in the back of my head, asking, but how long is the rest of my whole life going to be?
“Yeah well, now that you had such a long nap there are no excuses for falling asleep during movies and TV shows, I am going to wake your ass up,” Jeff told me. “We have to think about the important things in life, like your movie education.”
After I hung up with Jeff, I called my mom to let her know that I was finally awake. She promised to come down to visit me later that evening.
The Doctor Stopping By
I stayed in the ICU for another few days before being transferred to a regular floor. I stayed on the regular floor for two days, different doctors came by to talk to me.
“We think this was caused by a flare-up of your Small Fiber Autonomic Polyneuropathy. Your illnesses seem to be getting worse fast so we have put some new protocols in place to try and slow it down. We have increased your Fludrocortisone dose and added a fourth dose of Midodrine. We have also have increased the rate of your normal saline and will be ordering you 500 ml bags of normal saline to keep on hand in case your blood pressure starts to drop under 95 systolic or your heart rate goes over 120. Do you feel ready to go home?” he asked me.
“Yeah, I think so,” I told him. “My heart rate has come back down to the 120s which is my normal, my blood pressure has been low 100s over mid-60s which is also my normal. I think I’m just going to have to start wearing the oxygen all of the time though.”
Needing Oxygen 24/7 to Stabilize Vital Signs
“Pulmonology wrote that they want you on 3 Liters continuously 24/7 and that they will update your oxygen prescription. You have something called atelectasis in your left lung. It means the little air sacs that are in charge of exchanging oxygen to breathe are collapsed. You also have diaphragmatic weakness and your left lung is elevated higher than your right lung due to the Small Fiber Autonomic Poluyneuropathy as well, it’s affecting your phrenic nerve. Without oxygen constantly forcing air into your lungs, your lungs aren’t strong enough to breathe for you efficiently enough.” the doctor explained to me.
“I already have the bedside oxygen concentrator and one portable, but it doesn’t last all day, I would like a second portable,” I told her.
“Okay, I will let pulmonology know so that they can write the order for it, and then you can pay for it out of pocket but keep the receipt and the nurse case manager will give you a card that explains step-by-step what to do to get the insurance to reimburse you.”
I thanked the doctor and had the nurse’s aide start helping me pack up my stuff so that I would be ready for when the ambulance got there to discharge me home with my finally almost regulated vital signs.