So I thought
last weekend was bad. This weekend is a bit better, as I came home from the hospital a few hours ago.
I mentioned a couple of posts ago how bad
AZT was for me about nine years ago. Well, as I also said, Trizivir has AZT in it too. And I’ve been taking it for the last six months. My doctor thought since the dosage was lower and mixed with two other drugs, it would be okay. Turns out it wasn’t.
I said I was sick the other day. I stayed home from work on Wednesday and felt well enough that I planned on going into work on Thursday. In the evening, my stomach felt a bit queasy. I made some broth for dinner. Right as I took the last sip from my cup, I felt nauseous. I stood up and walked quickly to the bathroom in my study. I never made it.
I woke up with my body on the floor of the den and my head in the living room. I’d vomited a bit on the floor, but not enough. I got up, went into the bathroom, continued vomiting, blew my nose, wiped my face down with a cold cloth, and looked for blood (we have no carpets in the new house, all stone tile). Then I went to get TheHusband. I told him what happened, and asked him to look at the back of my head for blood. He saw none. I started worrying. I wetted down another washcloth because I was sweating my ass off suddenly. I felt for bruises. On my right eyebrow was a little lump, a sore spot on the back of my right forearm, and a sore spot on my right-lower hip. I’d obviously tried to protect my head as I fainted. So I went to bed.
The next morning, I still wasn’t feeling right and opted to call in to work again. I asked TheHusband to call our doctor and have an appointment made for me. All set. We were to be there at 10:00 for labs and 11:30 to see the doctor. At 9:00 I poured myself some OJ and took my morning dosage. I am watching the coverage of the London bombings here at my desk. The minute I finished the last sip of OJ, I’m feeling queasy again. It might be six steps from here to my bathroom. I didn’t make it. TheHusband found me a few minutes later face down on the floor, half in this room, half in the bathroom. The first thing I did was crawl to the toilet and puke up the OJ. TheHusband continues to freak out. I look at myself in the mirror for blood on my head. Nothing except a bigger lump on my left eyebrow. Huge. After cleaning my face, I went in to the bedroom to wait until it was time to leave for the doctor’s office and TheHusband brought me some ice in a cloth for my eyebrow.
About 15 minutes later, it was time to go. I yelled out that it was time and walked to the doorway. I was dizzy again, so I leaned up against the door jam. TheHusband asked me if I was dizzy, to which I replied, “Yes”, and he tried to help me sit in a chair. I never made it. At least, I don’t remember sitting down. The next thing I remember, I was laying on the floor with my head resting on my left forearm. He was trying to slip a pillow under my head (remember – stone tiles for floor), and I was asking for a bucket to puke into.
He got me one while he was on the phone with 911.
Suddenly there was a fury of activity and about 12 very nice looking young paramedics in my living room, all of them looking at my silly ass lying on the floor. Too bad I’m not into younger men.
Extremely professional, extremely alert. Amazing how well they all seemed to work together, too. The take my temp, my blood pressure, check to ensure I hadn’t had a heart attack (?!?). All good. Just a bit sweaty from passing out. I apologized to them for that. I also said that it was probably a reaction to one of the drugs I was on for the HIV.
They put me into a stretcher, buckled me in, and rolled me down the sidewalk to the ambulance. Going out the door I reminded TheHusband to grab my meds and my glasses. Inside the ambulance crew, both women, greet me. Where had these two women come from, I wondered. As she told me how my face was quite a bit whiter than the shirt I was wearing, I watched TheHusband follow us in the truck. I saw him calling someone on the phone, and I worried about him using the phone, driving, and worrying about me all at the same time.
With no flashing lights or siren, we arrived within 15 minutes. The admitting nurse asks me a few questions and within another 15 minutes, I’m in an exam room. From there, I wait. And wait some more.
I’m in there for about 12 hours. I get a chest X-ray (?!?) and a CAT scan. The chest X-ray I do not get, but the CAT scan is to rule out any problems from knocking my noggin on the floor two or three times.
As usual, I kept telling everyone that I was anemic because of the AZT in the Trizivir. Everyone. The nurses, the ID doctor on staff, the Internist on staff, everyone. I told them to call my doctors at the VA to confirm. I told them to consult their own hospital records to confirm, as I’d been admitted to THEIR own RIO ward in 1996 with the same symptoms. No one was listening to me. Meanwhile, TheHusband calls the VA himself and gets the prescription changed. He goes there and fills it and brings it back to the ER, where I still am. About 8:00 p.m., I told TheHusband to go home. He needed to check on
OurDog as he’d been there for the entire day by himself.
After he left, the Internist on staff came in. He confirmed that I was anemic (uhm…. DUH!!), that I needed four pints of blood, and they were going to do some more tests on me before letting me go home. I’d probably be in there through the weekend. He said I needed an EEG and a MRI to rule out epilepsy or other causes of seizures. He wondered where all that blood had gone, so I’d probably need an Upper GI and a Colonoscopy to look for the blood anywhere in there.
I immediately objected, as my depression grew. I didn’t need any invasive tests to tell me what was wrong. I KNEW what was wrong. I was TELLING him what was wrong. Why wasn’t he LISTENING to me? If he didn’t want to talk to me, the patient that had been living with this particular disease longer than he’d
even been a doctor then he should have picked up the phone and called my GP, my ID, or spent some time with their own staff ID. After a few minutes he left, resolved to do as he wanted.
TheHusband called me a bit later and could tell right away that I was depressed. He told me not to worry about anything the doctor had said and that he’d be there first thing in the morning before work. Right then, they came to take me to my room. I spent the night getting little sleep. A constant flow of people came into my room to check my blood pressure, take my temperature, check my blood-oxygen level, change my IV, put on another pint of blood. It was making me crazy.
The next morning TheHusband was there around 0730. I related to him what this doctor had said and he told me to tell the doctor no. Just no. No unnecessary and extremely invasive tests—just refuse them. I showed him the first black eye I've had in my life:
Around 10:00 someone came to get me for the EEG. I’ve had one as a child (migraines), so I knew it wasn’t that big a deal. Lay here… let me put these sticky electrodes all over your head… dark room… when I say so, blink your eyes fast and furious, then keep them closed, then lay there perfectly still and try to sleep. Arrived back in my room around noon. Eat lunch and give a stool sample, not necessarily in that order.
Doctor Dufus shows up around 2:30. He starts in again about all these tests. I asked if anything had been found in my chest X-ray, the CAT, the stool sample or the EEG. He said nothing in the first two, but the last two weren’t back yet. I said that since the X-ray was fine, the CAT scan was fine, if the stool sample came back with no blood in it and the EEG came back normal that I would not be submitting myself to any further tests. He goes on and on and on about he knows best and he’s a doctor and I need these tests to rule out epilepsy and seizures and cancer and blah blah blah. I about lost it. I told him I was certainly not going to take any more tests that he ordered and that he could just get used to it. So he asked if that meant I wanted to sign out AMA. I said yes and turned away from him, so he left. I called TheHusband and told him what happened and to come and get me.
About 30 minutes later, my nurse (nice woman, but she had quite an accent that I had a hard time with) brought in her supervisor, a man about my age (or gods forbid, a bit younger).
For the first 15 minutes of the next conversation, all I heard him say was that if I left the hospital AMA that my insurance company would pay for NOTHING. I heard nothing else and shut down. I was disappointed, and agreed to stay. I called TheHusband and told him to forget about coming to get me, that I was staying. He asked why, so I repeated what I’d heard. He said not to worry about it, that he’d be there soon.
Once he got there, I had him find the nurse that had explained everything. He said that I had every right to refuse invasive procedures, but that I shouldn’t leave without having basic tests done. He meant the results of the blood-in-the-stool test and the latest hemoglobin. Well, the stool test came back negative (yeah!!), which meant there was no reason for the Colonoscopy. TheHusband went out to check on OurDog again.
After a bit, the Neurologist came in and said that the CAT scan was perfect and so was the EEG. There was no reason for a MRI. Score another one for me.
Then Doctor Dufus came in to see me again. He said that he was told that I would stay and he was glad I’d changed my mind. I told him that he hadn’t won, that I was aware that all tests that I’d taken so far had come back negative, and I was waiting on one final hemoglobin test that he’d ordered. If that test came back good (anything over 9.0), that I’d be leaving, and I wouldn’t be leaving AMA, nor would I be having any additional tests. I then turned away as if to dismiss him.
He asked why I was being so difficult with him. This may or may not have been the best question for him to ask me. So I said it and I’m glad I did.
“You are the type of doctor that doesn’t listen to his patient. This is not a good thing, especially a patient that has had a disease that you have not specialized in and has had the disease longer than you have been a doctor. I understand your need to be thorough, but sometimes, less is more. There is no need for expensive and unnecessary tests. And mostly, that is what you are ordering and relying on. It does not seem that you’ve consulted with the ID doctor in this hospital that is working with me, nor have you consulted my own GP or ID that actually knows my case.”
I don’t think he said very much as he left the room. The male nurse came back in later and told me that Doctor Dufus has written one last Hemoglobin test into my record and if it came back good, I could sign out. I was to have the test done at 3:00 a.m. and he’d given word that he’d make his rounds by mid-morning. The first thing I said when I heard that was that he’d stretch “mid-morning” to 11:30.
I was sort of right. At 11:30 a different doctor showed up. He said he was “taking Dr. Dufus’ rounds for the day”.
Chicken.
He said my Hemoglobin looked downright good and I needed no further tests. I should check with “my” doctor next week and could go home as soon as the nurses had done the discharge paperwork.
I finally got to check out around 1:00.
Nothing was better than that first smoke when I got to the car.
