1/16/2022 - The Day the Real Journey Began

After seeing the Rheumatologist and getting the news about the positive results for Sjogren's, I felt that we finally had the answer to what was going on. I followed up with my internist who was happy that we found, what we thought, was the answer. I continued to follow up with the Hematologist over the next several months, though, because every time I saw her there was a blood count or two that was off. However, I was feeling well, was back to running and was enjoying life.

Fast forward to early January 2022, I follow up with the Hematologist. I entered and had labs drawn that they do immediate results on and sat and waited to see the doctor and review the results. The doctor came in with the results and for the first time in over a year, the results were completely normal. We talked about the results from the Rheumatologist and she explained that this all made sense. She said I could be discharged from her practice, pending some additional labs that needed to be completed. I was elated with all of this news. I even posted a celebratory post on social media with my lab results to celebrate what I thought was a true end of my journey, but little did I know, it was just the beginning.

Later that week I felt really tired - it was the first week back to work after the holidays and half of my team was out with COVID. It was an exceptionally busy week and on top of that, mom responsibilities were in full-force and I was also feeling a bit of the post-holiday blues. By Friday of that week I was exhausted. I sent my girls to their dads for their weekend with him and I vowed to get some rest for myself. I took it easy all weekend - slept in, took time for myself, worked out, and generally just rested. By the end of the weekend I did not feel like I had rested at all, in fact I felt more exhausted. I didn't think much of it and started the next week at work. As the week started I mentioned to a few work colleagues how tired and exhausted I felt, but kept dismissing it, thinking that if I just slept a little more, I would be OK. That Wednesday, I got up to shower before work and felt so weak that I could barely stand and decided to take the day off. I did not really understand what was going on, as I had just had normal lab work the week prior and my primary symptom was the worsening fatigue. I was resting, eating well, drinking plenty of fluid, but nothing seemed to help. The only other symptom that popped up was some swelling in my legs - I noticed that my skin felt tight and my pants fit a little snug. The next day I didn't feel any better and became a little desperate - thinking back to the Sjogren's diagnosis, I thought maybe this was a flare, though I had no idea what a Sjogren's flare really felt like. Unfortunately, my rheumatologist had left and moved to another city. Thankfully, though, there was a new Rheumatologist that I could see that Thursday. I was relieved, hopeful that she would have the answers to help me feel better. I had done an at home COVID test and it was negative to cover my bases.

When I arrived at the Rheumatologist's office, I was taken back for vital signs and weight. I was almost 10 pounds heavier than normal - this was strange. When the doctor came in, I told her about my symptoms and shared with her the diagnosis of Sjogren's in the Spring. She reviewed my records and told me that this did not sound like a Sjogren's flare, but she wanted to do some more lab work. I left her office and went to complete the labs. There was no magic pill to make me feel better, so I went home to rest and wait for the results. She told me she would call when the results came in. I took the rest of the week off from work and that weekend I laid low. My children were a bit worried about me because I had no energy to do anything. On Sunday morning, around 5am, I got up to go to the bathroom. I woke up, super groggy, sometime later. I realized that I had passed out. I had no idea how long I had been out, but got up and literally crawled to my bed. I felt absolutely awful. I had never felt such fatigue in my life and just wanted to sleep. Rather than calling for anyone, I crawled into bed and went to sleep.

I was woken up by my children a little after 8. They told me I did not look good. I told them I had passed out. They told me I needed to call Grammie, my mom. So I did. I told her what happened and she told me I needed to go get checked out. I knew this, but had been so reluctant. We were in the middle of a huge COVID wave, ERs were packed and I knew I would be put in a waiting room for God knows how long. She told me to call one of my doctors I worked with. Reluctantly, I did. My dear doctor colleague was so helpful - he said he would direct admit me and assured me I would be ok. He collected some of my personal information to complete the paperwork and told me when to report to the hospital for the direct admission that day. He was hopeful it was just a simple electrolyte issue or something.

Slowly I got cleaned up and packed for a short hospital stay. I was work just to get up, get dressed and move. Getting down the stairs and to the car felt like running a 5k. I felt so bad. My mom drove me to the hospital and we went into the ER area for the direct admission. I could not sit up and laid on the bench seat, waiting for them to come and get me. Thankfully I did not have to walk across the hospital and they came with a wheelchair to take me to the floor. As I was pushed through the hospital to the Heart and Vascular Institute, I felt relief. I finally felt like I was going to get some help and finally was hopeful that I would feel better. I got to my room and was assisted into the bed. Nurses came in and began taking vital signs and drew some baseline labs. Shortly after my arrival, one of the other physicians I worked with came in and rounded on me. He looked things over, reviewing the initial labs, my vital signs and my EKG. Alot was not normal - my heart rate was very high, my blood pressure very low, and my labs were completely abnormal. Most significantly, my sodium level was at a critically low level. I soon got upgraded from the IMU floor to the ICU due to the findings and was transferred to a new room.

Looking back, much of this was a blur to me, but I still thought very little of it and was just relieved to be in a place that I knew was going to help make me feel better. Shortly after being upgraded to ICU, I was visited by several specialist groups - critical care, Cardiology, Rheumatology, Nephrology, Endocrinology and Hematology. All of them were trying to figure out what was going on. The one thing we knew for sure, was that my sodium level was critically low and it needed to be increased. However, it was explained to me that to raise it, they had to do it safely and slowly, as there could be negative consequences if they did not. In addition to the rounding of the various specialties, I was also sent to CT to do a scan of my head. When I passed out, I "hit" my head on the wall next to me. I really laid my head there, but did have a small mark on my face near my eye that showed I did "hit" it with a little force. The team also was working to start an IV on me and was finding it particularly difficult. I had never been such a difficult stick, but I was now swollen all over and my arms were swollen, making it difficult to obtain a patent IV line. I felt like a pin cushion - I had flash backs to my days as a paramedic and the many difficult stick patients I had encountered. I could now empathize with them.

That first night I felt at ease and not really worried about what the outcome was going to be. Most of all, I felt so much relief and was sure that they were going to find the answer and help me feel better. While I had all of these specialties rounding on me, I had one fellow from Nephrology who spent most of the night in my room. He explained to me that he was pretty sure it was something with my kidneys. I had a hard time believing this since I had never had any issue with my kidneys or any indication that there was something amiss with them. However, he was determined to watch over me as they worked to slowly raise my sodium level. He sat on the floor in my hospital room watching over me as I rested. Little did I know, that evening, that January 16th, 2022, would begin a new part of my health journey. In a few days I would have a definitive diagnosis, but for now, I rested and waited for my testing results to come in.