Becoming the patient!!

“Every day may not be good, but there is something good in every day.” — Unknown

Hello there! It has been a while since I have written in my blog. I have had a wild past few weeks and a lot has changed with my plan of care. The newest update is that I have been fainting 2-3 times a day. Along with fainting I have had a variety of symptoms such as a headache, nausea, vomitting, chest pain, and dizziness. People think that it is a “normal” symptom for POTS patient’s to faint but not everyone does faint with POTS. This was new for me and developed fairly quickly. After having a very scary fainting session, I eventually landed myself a spot in the Emergency Department. After getting 2L of fluids and some IV medications I felt better than ever. After notifying my doctor about all these signs and symptoms, my plan of care has changed to now out patient IV fluid infusions along with IVIG. This was a heavy plan to put on me all the sudden, but after trying 7-8 different cardiac drugs I do believe this is the best thing to do.

Currently my IV infusions will be 2-3 times a week. IV infusions include 0.9 NS which is an isotonic solution that helps bring fluid back into the red blood cells. This helps increase hypotension and blood volumes, therefore bringing up blood pressure. My doctor ordered me to get 2L of this solution. As of right now this is a temporary fix, but typically the day after I feel like my old normal self again. I have never seen my blood pressure numbers this high since even before being diagnosed with POTS! I am hopeful that this can help me and maybe correct me in the long run or be an answer for the future! The next step along with IV infusions is a drug called IVIG. This is a drug that is made up of antibodies. My dysautonomia doctors think that I could have some type of autoimmune disorder in which my body is attacking my own cells. By giving this drug it could combat the cells in my body and prevent them from attacking my own cells. I am very familiar with this drug because I give it to my post kidney transplant patients who are in acute kidney rejection! I have to say that becoming the patient sucks.

After almost 6 years of nursing, I finally know what it feels like to be a full blown patient. While in the ED, all I wanted to do was sleep and curl up in a little ball. Blood sample after blood sample, IV pokes, stickers and wires everywhere, machines blaring when you have a major headache, and having your control taken completely away. It sucks. I definetly have more sympathy for what my in-patient patient’s are going through and it also made me more aware of things I could do better in my practice. Even though I have a heavy schedule ahead of me, I am trying to stay strong and postive. I have such an amazing support group surrounding me and I could not be more thankful. I know that I CAN and I WILL get through this step to improve my health and get me to the next process. Stay tuned to learn how IV fluids and IVIG are hopefully helping improve my condition!