5/20/18 - Puerto Rico
Last night and this morning was rough for me, to say the least. Too prefix this blog, remember that I have been on opioids my entire life so far. That's what happens to hospitalized babies, children, people...they use an some type of prescription opioid to help "us" cope with our situations. For me, I have had Morphine and/or Fetanyl my entire life in different dosages. I came into this world pretty rough and they used Morphine to keep me calm and somewhat sedated. I got it thru an IV drip. When I got a little better, off ECMO and changed hospitals, then the doctors weaned me off the Morphine some. I had some pretty hard days of withdraws coming off the drip. I still have those hard days and they give me a small dose of Morphine to get me thru my episodes and keep me calm. My heart needs me to be calm. I have also had other opioids several times as well thru-out my hospital stay. They have been an important type of drug used in my care; helping to keep me stable. I was using something else as of late, called Methadone. This has kept me in the condition you see me in today. It keeps me calm and collected..keeping my heart rate within an acceptable range and to be frank, protects me from myself. This situation I am in is not fun. I have very real struggles, day-to-day. I get mad. I cry & scream (with no sound) because I am upset. I don't want to lay still all day, have tubes and cords hanging all over the place or stare at the same heating element above my bed and yellow walls all day. Even though, I know no different, because I am just little...I still need these drugs to get me thru. Opioids are used for what the hospital staff call "maintainence therapy" for patients like me.
"Patients could experience "critical shortages" of key pharmaceuticals, the U.S. Food and Drug Administration is warning after Hurricane Maria brought Puerto Rico's drug manufacturing industry to a standstill..." [USA Today; Sept. 2017; https://www.usatoday.com/story/money/2017/09/26/fda-drug-shortages-hurricane-maria-puerto-rico/703071001/)]
"A national drug shortage crisis is affecting the care received every day for thousands of patients...more than 98 percent of respondents noted that they now regularly experience drug shortages at their institutions and more than 95 percent of respondents said the shortages impact the way they treat their patients. Shortages of injectable opioids and local anesthetics are affecting many anesthesiology practices, public, private and academic throughout the country. Multiple causes have been cited including...reliance on a production facility in Puerto Rico that was damaged during Hurricane Maria....Historically, drug shortages occur cyclically throughout the years, but the current crisis appears to be more significant..." [News Medical Life Sciences; April 2018; https://www.news-medical.net/news/20180425/ASA-survey-Drug-shortages-impact-care-for-patients-undergoing-anesthesia.aspx]
Opioids work by attaching to receptors in your brain, they block pain signals sent from the brain to the body and they release large amounts of dopamine throughout the body. Dopamine is a chemical your body makes (a neaurotransmitter). Dopamine works like a messenger in your body. It widens your blood vessels; in your kidneys, it increases how much you pee; in your pancreas, it reduces insulin production; in your digestive system, it makes you constipated; and in your immune system, it reduces the activity of lymphocytes. Being on opioids is not a good thing by any means, but it is getting me thru.
So, I had a difficult time because there are opioid shortages that cause changes to be made in my care here. When my hospital can only get so much of a certain drug, they have to give that to the people in need and they do their best to ration it out. They run out and have to make changes. So, when they ran out of their current supply of Methadone (or are running very low), the care team here has had to make decisions to change my medication. I have been getting a different drug now and we think this is the reason for my "withdraw" symptoms, if you will. Possibly the reason for why I have been so fussy over the weekend as well. A theory. Anyhow, if you would please pray for Puerto Rico to get stronger tonight and for the manufacturing companies to get back on their feet, a lot of people would appreciate that. Pray for the hospital to have access to the supplies they need to care for me. Pray for my body to accept changes with less hostility. Pray for me to get comfortable again and stay in stable condition thru infections, drug changes and all of the adversities ahead. Pray that my heart gift to arrive soon. Pray for my family and my someday donors family, too. Thank you. Good Night.