"I got chills...they're multiplyin'!" [nearly lethal infection]
It was Memorial Day weekend 2005, my parents had made the long trek back on Route 95 to Schenectady, my boyfriend was away at a dental conference. So my parents were enlisted to come down to our apartment in New York on the train and keep me company. They were only supposed to say for the long weekend but my mother over-packed, and you can't blame her, because look what happened the last time! Eddie had the weekend off and I was kind of excited to see my parents once again. It was a Saturday night. I remember my boyfriend’s brother, and niece were there. The niece was super excited about going so some hip-hop concert at Madison Square Garden that night. My boyfriend's brother would have to pick up his daughter at around two o'clock in the morning, which was so foreign to me, because of my Ambien enhanced 12 hours of sleep a night.
My boyfriend's brother and niece came over pre-concert, which was around 7 p.m. I had a serious case of the chills. I wasn't tired or nauseous, I was just so cold that I had on a cashmere scarf, gloves, and hat, with throw blanket wrapped around me, as I sat on the couch. And I’ll remind you, it was Memorial Day in New York City, my parents were wearing shorts, and the summer weather had already started. My boyfriend’s niece was off to her hip-hop concert with her dad in tow, in about half an hour. By this time, my teeth were chattering, my mother immediately called my boyfriend, and asked him what to do with me. My boyfriend was definitely concerned, but it was the weekend, and none of my doctors were on duty, so I would be subjected to the runaround in the ER. My boyfriend simply said to just keep giving me Bayer aspirin to make my fever go down, and my mother went out and got a case of Gatorade to keep me hydrated.
I went to bed a little after 9:00 p.m. At this point, I basically went to bed with all my clothes on. I switched hats to what my friend Kate called the cashmere helmet; Kate actually designed the ‘helmet’ when she was at Banana Republic. The reason she called it the ‘helmet’ was because it had two big earflaps on both sides, to keep your head incased in cashmere. The helmet kind of works, but it didn't stop my teeth from chattering, and the mercury on my thermometer was on its way up to 103 degrees. My mother ended up sleeping with me in the master bedroom, but for some reason she didn't want to sleep in the king sized bed, where there was more than enough room for her. Instead, she decided to sleep on the ultra suede chaise lounge, which no one had ever sat on, let alone slept on, and was periodically vacuumed by the cleaning lady once a week. There was this throw blanket artfully displayed, by me of course, on the chaise lounge. Even in my fever-induced state, I still was a little disconcerted when my mother opened up the throw blanket to sleep under. (I thought to myself, I'm the only one that can fold that thing the right way!) My temperature rose steadily, as my mother checked it every hour, with little cat naps in between. And at six in the morning, my parents made a decision to take me to the emergency room. I think I remember going to the hospital, I ended up in the emergency room so many times in the last year, that it's all just one big blur!
Most of the contents of this chapter will be either told by my parents, my sister Debbie, or my boyfriend. At least during the first week and a half, I was in a passed-out-coma-like-state, caused by the nearly lethal infection in my TPN tube. Remember that 39cm tube running to my heart, and the computerized sugar water pump, with its very chic Jack Spade messenger bag, that was the problem. And it only made matters worse, that I hooked up the pump right around 7:00 p.m., and it was pumping god-knows-what into my system for 10 hours. Every minute I got that much sicker. Dr. Louie said there would be risks with the TPN; this was his last resort to help me gain weight, although infections were number one on the list. Who knows what caused the infection, I can tell you this, either my boyfriend, or my mother were hooking and/or detaching the pump from me after the stroke. Remember I couldn't dial a phone, let alone program a computerized pump, and I had trouble with instructions, and everything had to be done just right to keep everything sterile.
I should mention the fact that my parents detached me from the pump, before they took me to the emergency room, but the damage was already done. When I got into the ER, I do not remember Dr. Louis being there, to ask me what with today's date, and who the president was. (One word of advice, do not get sick on the weekend, it’s kind of weird, because people's bodies don't work that way, but just don't!) I don't remember if I had my glasses, or if I was wearing my contacts, if I had eaten breakfast, or ingested all my medicine? It wasn't until like two or three weeks after one I was out of the hospital, that my mother told me the entire story. And even then it really didn't sink in. I found this in and other sorts of ways.
For some reason, I had to have a CAT scan of my stomach and liver. (The TPN 39 inch tube that was wreaking havoc all the way up my arm, and the ‘weekend’ doctors ignore that little detail.) If you never had CAT scan with contrast, I'll explain it to you. Before the procedure, you have to drink 1 liter of, what they call, a shake. It's basically like drinking banana flavored Pepto-Bismol, and you can’t drink it all at once. You have to down one 8 ounce glass, every 15 minutes, until the bottle is totally empty. And the nurse was explaining to me, which I had no interest in hearing about, how the 15 minute intervals coat the stomach entirely. My stomach was totally empty, I hadn't eaten a meal since I went to bed the previous evening at eight o'clock. I was starving, and the last thing I wanted to do was down a liter of banana flavored ‘Milk of Magnesia’ in my stomach. So they did a CAT scan, and it was so fast. I had this newfangled GE CAT scan machine, that made no noise, and I was done in five minutes. The reason I'm saying this is because I love the CAT scan experience, it's like you're resting in one of those Japanese sleeping capsule hotels, and they're usually so much longer time wise.
When I went down to the CAT scan, I was still in a stretcher (because I was too weak to walk,) there was some attending guy who wheeled me into the elevator, my mother came along, and when we got into the elevator we were greeted by the elevator operator. Most of the elevator operators are Jamaican, and my mother couldn't understand if he was saying up or down, so they just wheeled me in. The real point of this story is that after I did the CAT scan, they wheeled me back on my stretcher, with my mother, the elevator operator, and the attending guy, who is also Jamaican. I think some other people walked on, as well. My mother was standing right next me, right against the stretcher. All of a sudden, I looked at my mother, and pushed her out of the way (there wasn't much room in that elevator,) but somehow I ejected all the contents of my banana flavored Pepto-Bismol shake against the elevator wall and floor. Completely missing my mother, but I didn't spare her (and all the other people in the elevator,) the scene of banana and bile.
That's really all I remember from the emergency room experience that time. I passed out right after I threw up, because of lack of food, and dehydration. In the early evening, I was finally admitted to the hospital (according to my parents.) Somebody had this great idea to take the TPN tube out of my arm, (after my mother had been pleading with them to take the tube out, feed me, and let me take my medications.) Well first things first, they got the tube out, at around eight o'clock, but then I had to be rushed into the ICU. My temperature had reached 106 degrees (I should have been dead,) so I was packed in ice. In 
actuality, my sister Debbie described it as an air mattress, which went over my whole body, full of cold water. When I was researching this, I found that the nurses would be constantly monitoring the temperature of the water, and making adjustments. So it wasn't like I was just thrown onto a sheet of dry ice, or anything like that. I must've been packed in ice for over a week, because my sister came and visited me the following weekend. I was in a semi-conscious state at that point; I still didn't know where I was, what time it was, or how I got there. When you're in the ICU you can only have two visitors, only for a half-hour at a time. I have no idea what my parents were going through, but they had been there for all of it, so for that one day I got my sister all to myself. I knew Debbie was there, but I didn't open my eyes, I could just tell by the sound of her voice. My teeth were chattering, I'm lucky I came out of there with any enamel left. Debbie decided to make me meditate on the warmest place I could think of. I chose Bermuda because that was the last place me and my boyfriend had been together before I got sick. I don’t really think it actually made me warmer, but it was very relaxing! And what else can you do when you're in an ICU, hooked up to all those machines and being constantly monitored. You never get out of bed; they just slip the bedpan under you. (Here's a picture of me, enjoying the sunshine and crystal blue water of Bermuda in August 2003. Within six months I was diagnosed with liver disease. My body fat was wasting away; I especially noticed this in my face. Previously, I had been cavities free all my life, I never even had braces. Now at 33 years old my teeth were rotting away. X-rays of my mouth taken a month later showed three root canals in my near future and many more after that. Plus, no matter how many crutches I did at the gym I couldn’t get rid of my lipodystrophy gut.)
I forgot to mention one other detail, I was in a straitjacket. I wasn't crazy, I wasn't in a mental ward (that's in the chapter “I'm not myself!?”) and I really wasn't in a straitjacket, it was more like arm restraints. So when my sister Debbie got there a week into the episode, with the air mattress full of cold water and the arm restraints, she was a little taken aback, to say the least. The arm restraints stopped me from trying to pull out my IV’s in my half-comatose state. They had been on me for over a week, but I didn’t know the difference. I didn't know who was feeding me, or how I was going to the bathroom, and to tell you the truth, I didn't want to know. My parents don't even know how long I spent in the ICU; it was a time we all really want to forget. My mom said it was probably about two weeks. The only thing I can remember about the ICU is how awful it was with everyone dying around me, the lack of windows, and the late-night shift “interns”, (which is kind of funny, so I’ll save it for later!)
My boyfriend later told me, that one night he was visiting me in the ICU with his friend Doug, who is also a doctor. I had on the air mattress, the restraints, and I was hooked up to so many machines keeping digital records of my life, or lack thereof. They're both doctors, and went through all the training with all of those machines, so they knew exactly what my body was going through. My boyfriend has seen many of his friends die from AIDS over the years; he might have actually been in an ICU, or hospital, when they ceased to exist. But I was his boyfriend, and we had spent many years living together, and enjoying life together. My heart rate was almost 3 times the speed of an average person, and my blood pressure was all out of whack, and that air mattress full of cold water was only keeping my temperature down, only to 105 degrees. My boyfriend looked at Doug, and said “Maybe this is it; maybe the next time I come and visit him, he might be dead!” I don't think there was a next time, I don't think my boyfriend could stand the sight of me in that state, and how can anyone, except my parents, I guess?
I could never figure out what was going on in terms of space in the ICU, I was positioned in an awkward place facing a large desk which several doctors, and nurses, and Asha, my nutritionist, would be taking notes about my progress. But it seemed like I was out in the middle of the room. To the right of me, there was another woman patient who was visited by her middle-aged daughter. It didn't look too good for this woman, she was in a coma for several weeks and whenever there was a doctor there he’d be asking the daughter if they should pull the plug. Meanwhile, I could only pick this up by sound, I couldn't move my head or my arms, and I never even saw the daughter, she was always behind the curtain when I was awake. As far as I know, there weren't any windows in the ICU, or none that I could see. Maybe that woman patient had a window, and that kind of pissed me off, because she was in a coma, at least I could open my eyes and look out at the East River. One day I woke up and the woman and daughter were gone, I was fuming mad because I thought there was probably a wasted view on the other side of the curtain! I needed a view; I was used to seeing the Empire State building from my apartment!
It was a giant space; across from the large desk was another male patient. He was also in a coma, two of his sisters, or what looked like his sisters, would visit him regularly. The sisters were like in their 80’s, so the guy was probably as old has the hills! That guy took up the other half of the room; he was surrounded by so many contraptions: like heart monitors, respiratory regulators, IV bags, and the machine that goes “ding!” etc., etc. Then I thought, maybe I am hooked up to all those machines as well, I just couldn't see them because of the arm restraints, and the wraparound air mattress. Behind me there was a door, and I think there were either one or two patients in that room. It was closed off because of airborne bacteria or something like that. But all I can remember is the nurses and doctors would be constantly going in and out of that door, and basically walking around me, all day long and through the night, very annoying, to say the least! At one point somebody died in there, I'm not sure if it was a male or female patient. Well, I didn't smell anything, so that was good.
This is the one funny story I have from the ICU, my experience with the interns. It wasn't funny at the time, but it is kind of entertaining. I'm not even sure if they were interns, maybe they were nurses, but they were young, and they were not wearing scrubs with little hearts, or rainbows, or bears printed all over them. God knows what time it was, but I'm assuming it was night. I was woken up from my coma-like state, to two “interns” making out in front of me. It's like I was the ‘really old guy’ in Grey's Anatomy who was in a coma for over a year, and that's where all the interns went to have lunch, or argue, or to take advantage of each other. I just simply stared at them, which is all I could really do, because they had me on so much medication. Maybe they didn't realize I was staring at them, I'm not really sure. Then all the other interns showed up, (they obviously knew about the affair going on between these two interns. They just all sat around the big desk, and chatted. I remember the girl sitting on the guy’s lap, who she was previously making out with. (I DID NOT DREAM THIS!) Nobody was bothering to check on any of the patients, or futzing around with all the machines, or wondering why I was staring at them?! Then they started discussing their summer time plans. Apparently, a lot of them had rented a house on the Jersey Shore (listen, I know some people that are reading this have a great time on the Jersey shore,) but it was the last place I wanted to think of, I just wanted out of the ICU! This went on for like an eternity, or what seems like an eternity. My schedule was all out of whack, most the time during visiting hours I was asleep, and then during the nighttime I was greeted by the cast of “Jersey’s Anatomy!”
All sense of time had been lost for me. Apparently there were a lot more people that visited me in the ICU, Manuel even came back after the post stroke seizure, and Eddie made a guest appearance, as well. Somehow I ended up in what they call a “take-down unit,” I guess the ICU is the “take-up unit,” but nobody calls it that. For me, there was no cause for fanfare, or sense of relief. I'm sure my boyfriend, my family and friends were so grateful to the doctors that I wasn't taken out of the ICU and put into a morgue. But now I was fully awake, and starting to regain my senses, and I realized the take-down unit (even though it had windows) was the same as any other hospital room I had seen. Not only was I the youngest, but I was the only person that spoke English as a first language. I had three male roommates, one from some Eastern Bloc country, one Chinese old man, and of course, a decrepit Orthodox Jew - just to spice things up. Much of the time, the other three roommates were sleeping, I think actually all of them went into the ICU at one point, and I don't know who survived. On the flip side, I was getting much better as time went on. But most of the time, all I could think was how for the last year I was getting ready for a liver transplant (meeting Larry Kramer, going to Cleveland Clinic, doing tests at Columbia-Presbyterian,) and all of a sudden the stroke happened, and then the infection. It totally caught me off guard, and the doctors were just interested in getting me better, and were not discussing the transplant at all. I had based my life around getting a new liver, it felt like I was starting from scratch, and without a direction.
In the take-down unit, we had regular visiting hours, my parents can sit there all day long doing “word finding games,” reading Good Housekeeping, and Readers Digest. The Orthodox Jewish family was very loud, only the wife visited her Eastern Bloc husband, and she slept with him through the night in a very uncomfortable armchair, and the Chinese guy was very quiet and he was eventually taken somewhere during my stay, never to return. There was one added feature; the take-down unit had two nurses punching stuff into computers 24 hours a day, which is actually a plus, if there is a “plus” related to the take-down unit. When you're in a regular room, a nurse might take up to half an hour to get to you, a patient could be dead at that point. I enjoyed this, because I was still wearing my oversized diapers, which had to be cleaned about every hour. I never saw a bill, but can you imagine how much money the hospital spend on poly-blend sheets, just for me.
There was a glimmer of hope, because I was told that I would be moving into a “regular” room. Not only was my bed placed next to the window, but for the first few days I didn't have a roommate at all. I usually like being alone, but there was something unnerving about it now? I couldn't figure out what, but as time went on it got worse. I still had my parents visiting me every day, but they were warning me, that they had been there for over a month and a half since the infection, and they really needed to get back home. For what, I'm not sure, but when my dad has a plan don't screw with it! At the same time I had all these out-of-town visitors, Rex, from Atlanta, in town for a conference, Kirston , from LA, taking her son on a vacation to go to the Mohonk Mountain House in upstate New York, and I even got a visit from Cynthia O'Neal , the President/Facilitator of Friends in Deed , The Crisis Center for Life-Threatening Illness. Cy, as she was called, appeared on the Oprah Winfrey Show, to my mother that makes you better than a celebrity, if you're on Oprah, you’re a GOD!, or goddess, as the case may be.
My parents were assured that I would have a lot of visitors after they left, and they high-tailed it out of there before the first heat wave hit Manhattan at the beginning of June 2005. I was devastated, again, and I counted the days before I got out of that final room, which I think was about two weeks. My mother would call me at least twice a day, checking to see who was going to visit me. Sometimes no one would show up, not even my boyfriend. The hospital was next to a residential tower for doctors and their families. Where I was situated all I could see were children’s bedrooms stacked one on top of the other, obviously the parents had the master bedroom suite facing the East River. Every day during the week there was a maid cleaning the children’s bedroom, one day it would be two floors above me, the next day a different maid would be cleaning another apartment below me, etc. etc. It was kind of like Rear Window but with Puerto Rican maids and no murder.
Entering stage left my new roommate; a very well to do white man in his 70’s, with the big paunch, and broken blood vessels around his nose, from long summers without sunscreen in Nantucket, and/or too many Scotch on-the-rocks at the club. He was very quiet, slept a lot, and snored incessantly. After about two days, my roommate had a visit from his family. He had a wife, significantly younger than him (possibly at one point his secretary,) and a son and a daughter, mothered by the wife. The entire family was dressed up; the wife and daughter both in full length gowns, and the son in black tie, probably going to some charity benefit dinner or something. None of the family members sat down, the wife and daughter firmly held on to their Judith Lieber clutches. It was as if they would get a death threatening illness just being in a hospital. I can get the sense that they had been down this road before, regarding their father's health, that is. The whole visit lasted 20 minutes, with the guy just grunting and groaning his answers, which was the only time I heard him speak, actually. I think the son and daughter came one other time, and apparently they were both involved in the dad’s business. What I couldn't figure out is why he didn't have a private room. (There were several private rooms at the Rusk Center for Rehabilitation; they were like hotel rooms, on the other side of the hall, which faced an atrium with trees; no FDR, and no heliport!) He lasted less than a week and was taken up to the ICU, probably not with good results. Way too much time in the hospital can make you a tad crazy.
So there I was, “...alone again, naturally…” It was just a matter of one or two days, before the doctor signed my release form. There was a problem in getting Eddie to take care of me; he had already started with another patient…which should have been a sign?! I was taken home by a new female visiting nurse who looked like Halle Berry with long hair pulled back into a no nonsense ponytail. I later found out she was also a Virgo…another sign!