With all my recent health escapades, I completely forgot to write about Mitochondrial Disease Awareness week. So, although this is a wee bit late, here is what my life with Mito was like during Mitochondrial Disease Awareness week.
On Sunday, I drag myself to church. I have just spent four days in the hospital and was discharged home late in the day on Saturday. After having been hospitalized several times and missing church for nearly a month, I yearn to see my church family. Despite my best efforts, the ordeal is too taxing on my body. I have to leave church early because I am absolutely exhausted. I go to bed for the rest of the day.
Monday I learn that my IV antibiotics will not be delivered to my home. I am devastated. I was discharged home from my recent hospitalization without any antibiotics. Despite having antibiotics prescribed from a previous hospitalization, the infusion center has made my prescription null and void. The sorrow which fills my soul overwhelms me. I need antibiotics. I have a multi-drug resistant strain of pseudomonas. How can I overcome a raging infection without antibiotics? Just when I am about to completely collapse from sorrow, I receive a call from my infectious disease doctor. He was informed my prescription was cancelled. He decides to prescribe a new drug.
Tuesday comes and goes. I spend most of the day in bed too sick and too tired to move.
Wednesday, my new IV antibiotic arrives. A few have hours later, my home health nurse shows up to administer the new drug. She takes my vitals and begins the infusion. Very soon, I develop a severe headache. The world starts spinning. I become extremely dizzy. Confusion sets in. I have to lie down. My breathing is becoming severely labored. It is becoming harder and harder to breathe! My tongue swells up. My throat closes up around my trach tube. The nurse asks if I am feeling ok. I use all my energy to attempt to speak. The nurse discerns I am having an anaphylactic reaction to the drug. She consults the drug protocols for administering epinephrine and Benadryl. Slowly, very slowly, my symptoms subside. An ambulance is called. I am taken to the closest hospital.
I spent the next few hours freezing in an emergency department (ED) cubicle. My mom does not want me treated at this hospital. She sternly tells the ED physician I am not to admitted to the hospital; she is going to drive me nearly 400 miles to the medical center in which I have my team of doctors. Thankfully the clinician complies and allows me to be discharged as soon as I am stabilized.
My mom then drives me through the night to the medical center. Just before 2 o’clock in the morning, we arrive at the hospital’s emergency department. Thankfully, the ED is not busy. I am whisked off to triage and subsequently given a room in the ED. Tests are run.
Just before 6 a.m. on Thursday morning, I am rolled up to my room in the intermediate medical unit. A doctor visits me along with a respiratory therapist and other medical personnel. I am grateful when the clock strikes 6:20. The food service phone line is open. After being awake all night, I am starving. I greedily pick up the phone and order breakfast. The rest of Thursday passes without much fanfare. I see several doctors. I am started back on antibiotics. A sputum specimen is collected. I am told nothing else will happen until the culture results come back from the sputum sample.
Friday and Saturday pass. I am bored. I am annoyed to be back in the hospital. I am terribly tired from lack of sleep. I do my best to observe Shabbat. I am grateful my mom visits me. She brings me treats such as McDonald’s iced tea, yogurt, and soft boiled eggs. She travels to another area of the hospital to fill my styrofoam cup with hot water so I can make hot tea. I am overwhelmed with her kindness and her willingness to bring me delicious food and drink.
Well, this is where my week with Mito ends. I am in the hospital again. I am waiting for culture results. I am waiting to be discharged. For what it is worth, I am subsequently discharged home on Monday. And another week with Mito begins all over again. Although every week is always different, of late, every week seems to include a visit to the ED and/or hospital. This is just what it is like to have Mitochindrial Disease. It seems as hard as I try to separate myself from the medical world, I am never able to disentangle myself from its clutches. I long for and look forward to the day when I am truly free from this disease. What a day that would be!
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