Anyone that knows me, knows that I have a difficult time determining when symptoms increase to the point that I need to make a special point to contact and inform my home nurse and/or doctor. It's easy for someone else, like family members and friends, to suggest placing a call or sending an email when symptoms have progressed. However, for those living with chronic illnesses, it's not so easy. We deal with symptoms every single day so it becomes a trivial matter. I don't know about others, but for me, I begin second guessing whether or not the symptoms are important enough to ask for medical help or advice. My fear is that I will begin to sound like a whiner, hypochondriac, or nuisance over "minor" things which will make it difficult for others to believe me when something serious is happening. This mentality, though it has great intentions, can be extremely risky for me. There have been numerous occasions where I attempted to "tough it out" too long, resulting in dangerous consequences. It's difficult determining where to draw the line, when does survival actually become denial.
You see, the past couple of weeks my energy and strength has been more depleted than normal. I have been battling increased nausea, frequent lightheaded spells, sporadic discomfort around my PORT, moments of low grade temperatures, and occasional spurts of tachycardia. None of these symptoms are completely uncommon or new for me, so even though my family had been urging me to talk with my medical team, I didn't see the need. I mean, what could they actually say or do that would help? It's not like I was in continuous debilitating pain or completely unable to survive. I was trying to take the harsh moments in stride and hold on until calmer moments returned. I can't possibly reach out to my medical team every time I am feeling rotten. I have to learn to live with pain, discomfort, nausea, and fatigue as in some degree they have become "my normal." Eventually, after days of persuasion, I did break down and call my Home Health nurse to let him know about the off and on again discomfort around my site. I told him that my family was concerned, though I felt like I was alright. I answered a few questions that he had and felt comfortable knowing that he would be out on Friday to de-access my PORT for the weekend. Since all my vitals appeared fine and I was not in any discomfort at the time, we decided that we would monitor the situation over the weekend. During the weekend, I began having more spells of chills and low grade fevers, with my exhaustion levels rising. When Home Health came out on Monday to access my PORT, I was still experiencing chills. Being cold is not uncommon for me, but apparently wearing my favorite sweatpants and sweatshirt while wrapped in a heavy comforter during the summer while everyone else in my house is shirtless or in tank tops is considered odd. Go figure. My nurse did not like the symptoms that I was expressing, even though I reassured him that I would be okay. However, my heart rate being elevated made him think otherwise. While in my driveway he called my GI, who immediately placed an order to draw labs and cultures. It wasn't long before my nurse returned with the supplies to begin my bloodwork. Unfortunately, he was only able to draw peripheral labs (from arm) since we were unable to receive any blood from my PORT. In order to figure out what was going on inside my PORT, I had to visit the VIR (Vascular Intervention Radiology) department Wednesday morning. This visit was rather quick and I returned home feeling rather normal, well MY normal anyway, and felt confident that everything was fine. I firmly believed that I was just experiencing another "flare". To my surprise, I received a phone call around 8:10 Thursday morning from my GI. This was very unexpected and sent my head spinning. He informed me that my peripheral cultures from Monday were negative, however, the PORT culture from the previous day was Gram Positive, indicating an infection. All of a sudden, I was in a whirl of confusion. How could it be possible? I had been feeling rougher than normal, but not to the point that I couldn't handle it. An infection in my PORT??!! I know how dangerous PORT infections can be. I also know that having an infection there can drastically change if it enters the blood stream, placing me at a risk of becoming septic. I did not want that to happen. My GI stated that I would have to be admitted to the hospital for IV antibiotics and that I would most likely have to have my PORT removed. Red flags overwhelmed me as I began worrying about how I would be able to stay hydrated without my PORT. A few minutes later, my GI called back and told me that I would be able to receive IV fluids along with my antibiotics while I was in the hospital. I was then instructed to enter through the emergency department and let them know that he had requested that I come in due to a positive culture in my central line. Emergency Department!!! Ugggh - I did not look forward to this at all. How long would I be stuck in the uncomfortable waiting room. Thankfully, everything went very smoothly. Registering was a breeze, as my GI had already electronically documented my expected arrival and reasoning. Immediately, I was led to a bed, the ED doctor came to speak to me, an assessment was taken, fluids were begun, and an antibiotic - Vancomycin - was started. I was rather impressed at how easy everything was moving along. Prayers were being answered. I was even surprised and more than delighted when I saw who the doctor that was "officially" admitting me was. It was none other than, Dr M, my favorite all-time hospitalist. I had not seen him in over 3 years! He remembered me and my case very well. We spent a little while catching up, discussing new health issues since we had last spoken, and current symptoms that may have been related to the infection. I explained to him how difficult it was to distinguish which symptoms were worth noting and which were just common occurancies, especially being that none of them were truly uncommon. He completely understood my hesitancy in reaching out for help, though also reminded me that I know my body better than anyone else. After our conversation, he promised me that I would be well taken care of, that he would place me in the care of a doctor he thought I would feel comfortable with and a NP that I've become to know well. In addition, he said that he would make a note that I would be in control of my tube feeds and that I would be able to take a break or adjust the rating as I needed. He was the same doctor that I respected and appreciated years ago. Calmness overcame me until........ Craziness overwhelmed me. All of a sudden, not even 10 minutes after my doctor walked away, I began feeling really strange. My heart began thumping really loud in my chest. It was pounding harder and harder as my heart rate steadily rose higher and higher. My head felt like pressure was continuously building, heat radiating from flushing, and according to my mom changing to darker and darker shades of red. It honestly felt like my chest and head were going to explode at any time. As I tried to stand up and walk to the bathroom, my blood pressure dropped and dizziness overcame me. Standing there, depending on my mother and nurse to hold me up, while waiting for someone to grab a wheel chair for me. What was going one? Why was I all of a sudden feeling so awful? Come to find out, I had a reaction to Vancomycin. They call it "Red Man's Syndrome". I had never heard of that before, but learned really quickly that it's something I never wanted to experience again as well as something that the nurse's were fearful of. Apparently, it can be extremely dangerous, even lethal, if the reaction was to continue. After a break from the medicine, we were able to restart it and successfully administer it at a very slow rate. Everything else during my hospital stay was rather uneventful, which I did not mind at all. My PORT was removed on Friday, labs were monitored, tube feeds managed, and IV fluids with Vancomycin were administered. Absolutely everyone that I came in contact with during my stay - doctors, nurses, nursing assistants, etc were extremely helpful and pleasant. I honestly left without having any complaints at all regarding the care I received from the hospital staff. My GI even came by to visit me during my stay, which means a lot. I can't begin to explain just how important and reassuring it is to have a GI that truly cares about me as a person. All in all, I had a positive experience with a situation that could have been much worse. Once again, I was reminded of the amazing support team I have surrounding me. I am truly blessed!
0 Comments
Leave a Reply. |
Trisha BundyA proud mother, educator, Gastroparesis & GI Motility Disorder Advocate, Like my content? Want to thank me with a small token of appreciation? https://www.amazon.com/hz/wishlist/ls/1LH7R639ORBML?ref_=wl_share
Categories
All
More Blog Entries
March 2024
|