The day after I left the Hershey ER I woke up feeling that my hearing, which had not been good for years, was suddenly substantially worse. I asked my wife to call audiologist David Kauffman in Greencastle for an appointment to discuss hearing aids. She was quiet for a moment, then she screamed, “How did they give the Lasix?” What do you mean? “Did they give it by mouth or IV?” IV. “How long did the nurse take to push it?” About 15 to 20 seconds. “Gary, if it was 40 mg it has to be given over at least 4 minutes or it can be ototoxic- it can seriously damage your hearing! That’s on every nursing board exam, and it’s standard practice.” Well, not at Hershey. My hearing has still not fully recovered. Later that morning I nearly fainted but managed to sit before doing so; my wife took my blood pressure and it was down to 114/56; so I stopped taking the extra blood pressure medication prescribed by Dr. Wm. D (losartan/hydrochlorothiazide). In the business, this is called iatrogenic medicine – illness caused by medical treatment. Iatrogenic medicine, specifically medical error in hospital is now the third leading cause of death in the U.S.
My condition was not good, I was breathing so hard that I had lost 10 pounds in 10 days. My ribs throbbed in pain by the end of the day. I was tired all the time. On Wednesday 4/17/18 I met with pulmonologist Dr. J and he told me something remarkable. My chest x-ray showed that I likely have a right hemi-diaphragm paralysis. He orders a Sniff Test whereby I sniff briskly in front of a fluoroscope to confirm. He was right; my right phrenic nerve was not working. Summit Radiology had missed this; Hershey Radiology had missed this; Hershey Pulmonology had missed this. My pulmonary function test showed no significant lung disease; the FVC (forced vital capacity) that measures how well I exhale carbon dioxide came in at 2.41; the test was done in the morning; more on this later.
On 4/18/19 I met with Dr. S. chief of the Hershey ALS clinic and his fellow Dr. N; Dr. S does an EMG/NCS (electromyography/nerve conduction study) with needles and electricity on my extremities and on my lung accessory muscles. The accessory muscles are weak. The differential broadens he says; he orders more blood work, including myasthenia testing.
My condition began to wax and wane, but overall I was feeling better with less shortness of breath and less fatigue. I am hoping for Giullaume Barre with a phrenic nerve palsy caused by a viral trigger; this is a demyelinating disease that usually resolves on its own, though it can take months. ALS is progressive and does not really wax and wane per Dr. S though some patients think it does. On 4/22/19 Dr. S informs me that the blood work for myasthenia gravis is positive and that the high dose prednisone that I gave myself may have triggered an exacerbation; prednisone as therapy for MG must be tapered up. Nevertheless, since I am getting better we will just wait to see how things develop. I am still hoping for Guillaume Barre with a false positive MG test as my weight has stabilized and I am about 75% better, but it was not to be. On 4/28/18 the shortness of breath after meals returned, my rib pain at the end of the day returned. I developed new jaw fatigue with chewing. Toward the end of the workday my neck became very tired. On 4/29/19 I could barely hold my neck up after seeing patients in the afternoon; my ribs were throbbing in pain; I got home and took pain medication and immediately fell asleep. In the morning I felt better as is the case with MG, but I called Dr. S and explained the situation. He said I was in crisis and needed to be hospitalized for IV gammaglobulin therapy over 2 days at Hershey. He would arrange for the admission and told me to report to the hospital that night. The IVIG therapy would replace my own dysfunctional antibodies with healthy antibodies.
I arrived at Hershey for my hospitalization around 10:00 pm on 4/30/19, exhausted after a day of work and not realizing that I would not be able to sleep until my discharge due to the way tertiary hospital medicine is practiced. Hershey is not a small community hospital with one nurse and an aide that handle everything; it is a big institution made “efficient” by division of responsibility. So on average about every 2 hours a different person or team entered my room to perform their official function including doctors, nurses, respiratory techs, equipment technicians, housekeeping and Big Brother. The equipment technicians and the housekeepers each came in twice daily. Initially, the nurse came into my room every 2 hours for “neuro checks” as ordered by one of the doctors until I objected and it was changed to every 4 hour neuro checks. But this proved to no avail as 2 hours after the nurse evaluated me in came the respiratory tech who checked my FVC every 4 hours, and somehow could not coordinate with the nurse to give me more than 2 hours alone. Big Sister appeared on a screen in the room at 11:30 pm the first night; she sat at a desk alone in a large room with computer equipment and explained that they were doing remote monitoring; she asked if I could see and hear her; she did not give me her name or title; I expected her the following night but she did not appear. Meals were brought in 3 times a day. Doctors saw me in at least three separate visits daily.
I could not figure out who was writing my orders, and so I did not know to whom to address my objections. Was it Dr. S or his fellow Dr N? Was it the residents? Was it the attending physicians? All of them? Who was coordinating my care? This is not a minor problem – it is a major problem in American medicine. In the military there is a principle called Unity of Command which recognizes that coherent planning and execution require that one man be in charge. Doctors don’t get it, or at least pretend not to get it. A patient is usually admitted to hospital by a hospitalist who then consults various specialists; those specialists then go on to write orders without the permission or even knowledge of the hospitalist; the orders sometimes conflict with those of other specialists, and the right hand does not know what the left hand is doing; this is a formula for iatrogenic medicine. The chaos could be easily remedied by a rule that allows only the hospitalist to write all orders, except in an emergency. That will not happen in America because hospitalists make much less money than specialists and have less weight and prestige in the hospital system. So we have institutionalized bad medicine.
In my case it went like this: someone for some reason wrote for a cardiac diet. Someone wrote for IV fluids because my kidney function (creatinine) was mildly elevated. Mestinon tablets by mouth were ordered on top of IV gammaglobulin as a treatment for Mysathenia even though these tablets could have been started as an outpatient after discharge. Mestinon can cause fecal urgency and explosive diarrhea – and did – while I was tethered to an IV fluids pole making it impossible to get to the toilet in time. I explained that I did not need IV fluid; that my creatinine is always elevated as is the case for muscular men and that I would just drink more water to stay hydrated. No response. Finally, after tearing out my IV for the third time while attempting to get to the toilet, the order was rescinded, or at least nursing gave up on it. I then refused Mestinon until I could play with it at home. The cardiac diet was inedible so my meal trays came into the room full, and they left tasted but otherwise full. Yet no one commented on this. I ate crackers and candy from the machine on the floor.
When I practiced hospital medicine what I wanted to know from the nurse on my rounds was: (1) did the condition of the patient change, (2) how did the patient eat, and (3) how did the patient sleep? Everything else I could get from the record. At Hershey eating and sleeping were apparently not of concern. But in my case sleep proved critical. Myasthenia symptoms improve with sleep. Every 4 hours the respiratory tech had me blow into a machine to check my Forced Vital Capacity (FVC). Remember on my Pulmonary Function Test that was done in the morning it was okay at 2.41. When I came in for admission at night it was around 1.6 and by the morning on the day of discharge with only 3 hours sleep during the whole process my FVC was down to 0.9. My lung muscles were giving out; Dr. N talked to me about intubation; I explained that I just needed to get home to sleep and I would be fine. That did not work, so I replied that I would leave AMA before I let him intubate me. He apparently informed Dr. S who said that since I had been short of breath for a month that I could go home. If I had been intubated in my immune compromised state I likely would have developed a nosocomial (hospital acquired) pneumonia and may have died from it. Iatrogenic medicine. An ordinary patient would have ended up intubated and on a ventilator. I had spiraled down the Inferno and it was a dehumanizing experience.
Before my discharge I got a social visit from Dr. G my daughter’s mentor while at Hershey medical school which I greatly appreciated. It is important to state that the people at Hershey are as a group first class. In most places finding good people is the problem. At Hershey at every level the people treat you with kindness and consideration. They try to do a good job. It is not the quality of the people but rather it is the system; the institution is fundamentally flawed. Hershey is not unique in this regard. It represents what has unfortunately become the standard in American medicine. Hospitals in the U.S. are not public utilities; they are capitalist enterprises that put “efficiency”, that is making money and reducing costs, above the care of the patient despite lip service to the contrary. Hospital administrators make an obscene amount money in the process so things are not going change anytime soon.