On July 11th the AdventHealth ER in Belleview wanted to admit me to the AdventHealth hospital in Ocala for Acute Kidney Injury. I refused to go because about eight months ago I was in that hospital, admitted through the ER for an MRI, and the hospital refused to treat my chronic pain with the hydrocodone I am prescribed by pain management doctor and would only offer me Tylenol. I was in such excruciating pain that I left the hospital AMA in the middle of the night to go home and take my pain medication.
Over this past week my symptoms got worse so I went to the ER in Ocala. I was admitted with Acute Kidney Injury, Pulmonary Edema, and Anemia. Many of my prescriptions are written for specific brands or specific generics, so I brought my own medications, in the pharmacy bottles, because I knew the hospital might not have the exact ones I need.
Upon admission, no medication reconciliation was performed. Hospital staff took my home medications but refused to give them to me. I was told the ER doctor did not enter my medication orders correctly into the system, and that the ER doctor had left and could not fix the orders. I was told the pharmacy would not "put their labels on them" and I was told that the on-call doctor was not calling back, and when the nurse practitioner arrived, they also would not correct the medication orders. As a result, with the exception of being given Ivabradine and Ambien that evening, my medications were all withheld for 19 hours. In the morning when I realized they were not going to give me my hydrocortisone I had to make a difficult decision. Hydrocortisone is essential for me because I have adrenal insufficiency/HPA axis dysfunction. Missing a morning dose can cause an adrenal crisis--a life-threatening emergency that can cause severe low blood pressure, shock, confusion, vomiting, and even death if not treated promptly with steroids. I had to leave the hospital AMA, so they would return my medications to me, only because I needed to take my hydrocortisone to avoid this potentially fatal complication.
The ER doctor told me he was going to temporarily increase my furosemide overnight to treat the pulmonary edema and difficulty breathing. This medication was also withheld.
Then the cardiologist told me that I needed to stop the furosemide. I told him that I have been stable on this medication for over 20 years and without it I end up in the ER with difficulty breathing. Since my symptoms are new, and I have recently been diagnosed with autonomic dysfunction, it is very unlikely that the furosemide is the cause.
I have documented autonomic dysfunction (diagnosed by abnormal tilt table testing). This affects my blood vessel tone and can cause fluid to shift out of my blood vessels into my tissues (a phenomenon called "third spacing" or capillary leak). Because of this, I can have:
Low blood volume inside my vessels ("dehydrated"): This leads to low blood pressure, dizziness, and can worsen kidney function (as seen with my recent Acute Kidney Injury).
Too much fluid in my tissues ("fluid overloaded"):This causes swelling (edema) and, in my case, even mild pulmonary edema (fluid in the lungs) as seen on my recent chest x-ray.
This means I can be "dehydrated" and "fluid overloaded" at the same time, and standard advice about fluid or diuretic use may not apply. My treatment needs to be individualized and carefully balanced.
My symptoms have not resolved. I still have Pulmonary Edema, Acute Kidney Injury, and Anemia and I'm at home having difficulty breathing. But I cannot return to the hospital because they will again withhold my necessary medications, putting me at risk for even more severe complications and they clearly do not know how to treat Autonomic Dysfunction so their treatment plan could further harm me.
Is this the standard of care that you aim for? If so, I have a suggestion. Since the hospital plays a lullaby over the PA system every time a baby is born, you should also be required to play a funeral dirge over the PA system every time you kill a patient!
I most certainly will be filing complaints with the Florida Agency for Healthcare Administration and The Joint Commission. read more