die another day

tummy trouble  [liver disease]

Now, let’s switch to February 2004. I was still working at Old Navy, where I have been working my way up the ladder for the last eight years. However, I was interviewing at Gap to be the senior designer of men’s accessories. This was a step up in title and a huge jump in salary (which really paid off it the end financially.) I got the job, and started on the first of March. At the same time, I was diagnosed with liver disease.

My doctor immediately took me off of all my HIV/AIDS medications. The meds were highly toxic to my liver and until they could change my meds to something not so toxic, my HIV/AIDS was going to get worse. I had been on HIV/AIDS meds since 1996. It was a catch-22, and my life depended on it. (My meds were finally changed in July 2004.) In addition, I was wasting, that when the fat cells in your body die. So I really wasn’t that attractive at all, and the steroids I was injecting to gain weight I had to stop because they were also toxic to liver. Anyway, this kind of made the interviewing a bit of a challenge. Lots of doctor’s appointments, and tests at the hospital. And I wasn’t feeling so well, so I took a break in between jobs for one week. All I did was sleep for seven days, and if I went out of the apartment, it was to see Dr. Eddie Louie my AIDS/HIV doctor, or Dr. Michael Faust my gastroenterologist. Both doctors are in the same office, which was very convenient.

I was working for the VP of Accessories, Emma. She was a Welsh fashionista who worked hard and played hard. Emma wasn’t really interested in men’s accessories or maybe she just trusted me. She ultimately gave me a lot of freedom. It was my dream job. I am a work-a-holic, if you didn’t know. I would work 14 hours a day, 6 to 7 days a week, traveling to Asia and Europe at least four times a year. When I was at Gap, I went for a liver biopsy on a Thursday (I took the day off.) Before they could do the biopsy they had to drain the ascites (accumulation of serous fluid in peritoneal cavity) caused by the liver disease. The doctors took 6 liters out of me – that’s three bottles of Cherry Coke. I looked like I was pregnant. I went to work on Friday and I came in both Saturday and Sunday. I was scheduled to leave for Hong Kong on the following Saturday. Emma told me I didn’t have to go, and I decided to let Alex go instead. It was his first time to Asia, and I know I really wasn’t up to it. I got the news from my doctors that they thought I should have a liver transplant, which turned into a job in it self. My current job was killing me, literally. I was virtually wasting away, I wasn’t exercising at all and my idea of dinner was a Snapple and a caramel Twix from the vending machine. Unfortunately, I only remained in that job for 4 months, before I went on disability for the liver disease/AIDS.

Leaving Gap was the hardest decision I ever made. It was the dream job that I had always wanted. I asked my parents, my boyfriend, my therapist, and it didn’t sink in until I asked my hairdresser, Madison, about leaving work. When everyone was in Asia, I meet with human resources about going on disability. Gap Inc. had a great disability program, and previously I (with the help of my boyfriend, who is dentist, and knows a lot about insurance) had selected a disability plan that would pay me roughly the same amount I was getting paid while still working until I was 65 years old. And, it would be tax-free. Of course, I’m wouldn’t be getting the bonuses every year (which, if you haven’t been reading the business section Gap Inc. is not doing so well.) I missed the traveling too.  No more fancy trips, flying first class to Asia and Europe. But now I had a new job getting a liver transplant. My last day was officially June 11, 2004, which was a Friday, but I ended up working all weekend. I was designing flip-flops for the Summer 06 line, and having a meeting with my freelancer on Sunday. I WAS INSANE!!!

After being off AIDS meds for the last 6 month the doctor figured out a new and improved “cocktail,” that wasn’t so toxic to my liver. I actually planned to return to work at the beginning of September, this was a short-term leave of absence, or so I thought. I made a calendar (in color) of the summer from June to September on Microsoft Excel (another example of being a control freak!) The calendar was emailed to my boss and my assistant from my AOL account. I would spend the next few months researching all of the best hospitals for liver transplants, and visiting them over the summer. At the end of August, I planned a market research shopping trip to the Garden State Mall, unfortunately I couldn’t make it. I really wasn’t in a shopping mood; in fact, I was in the hospital.

It was a Monday morning August 23, my boyfriend’s day off.  He woke up and found me in a pool of…(let’s just say it was messy.) Somehow, I made it to the bathroom (while my boyfriend cleaned up the bed), turned on the shower and stood there for over an hour staring at the wall. Time was in slow motion. When my boyfriend’s realized what was going on, he kind of freaked out. My boyfriend knew I needed to get to the emergency room as quickly as possible. My boyfriend got me out of the shower, dried me off, and tried to dress me. I couldn’t understand what the hurry was, and I decided to dress myself. My cognitive skills were gone. I couldn’t even put on my underwear, or my socks and I was doing it slow motion, which made my boyfriend even more nervous.

“Encephalopathy,” that’s what I was diagnosed with. I kept calling it “Mr. Snuffleupagus,” you know, like the imaginary friend of Big Bird? No one knew what I was talking about, just like Big Bird, I was the only one who knew who Mr. Snuffleupagus, really was. Dr. Louie kept asking me the same questions every time he saw me: “What's the date?” (which I was never really good at, and because of the fact that I wasn't working, and it was summer, etc.), “What's your name?” (I can get that one right, for now!), and “Who's the president?” (I was in and out of the hospital for several months, and it was right around the time of the election, and I kind of had fun with this! I might have actually been in a hospital for the “hanging chad episode.” Dr. Louie, like myself, wished that Gore had won the election.) Basically, my liver couldn’t digest protein. If I had, by chance, a burger I would act like I was on Special K, or Quaaludes, and I was incontinent to boot . This encephalopathy just starting happening, it was like I developed an allergy.

I was in the NYU Medical Center for five days. A neurologist was treating me in addition to my HIV/AIDS doctor, which I really couldn’t figure out. The neurologist had me do all of these tests (CAT scans, MRI’s, and even a spinal tap .) I was so tired and weak, that my boyfriend had to shower me in the hospital. I was very ashamed of the way that I looked; I was wasting away to nothing. I wouldn’t even let my boyfriend see me naked for the last eight months, ever since I was diagnosed with liver disease. During the week, I meet with my old nutritionist, Asha Bhalla, who I first started going to when I was losing weight in fall 2000. I meet her through my HIV/AIDS doctor, Asha is at NYU Medical Center, as well. Don’t get me wrong, I love Asha, she’s like a second mother to me. It fact, Asha’s very protective of me, and when she found out I needed a new liver she was the first one to offer me part of her liver. They can actually take off ¾ of the liver from the donor, and it will grow back in about a month or two. I have type B+ blood, which will work with type O or B whether it is (+) or (-), Asha has type O. Who knew?!

I still have a memo on my Palm Pilot (boy, that's dating me) about my blood type and a list of the people who were offering me their liver: Debbie B+ (my sister), Kathy B+ (my other sister) and George B- (my therapist.) I told you I was anal.  Asha set up a meal plan with 40 grams of protein over the course of the one day. That’s not a lot of protein at all, and to keep my weight on I had to eat a huge amount of crabs. And I really didn’t get it at first, who knew eggs are protein, and peanut butter has a lot of protein in it as well. Moreover, forget about ever eating at a McDonald’s, one quarter pounder and I’d be back in the hospital again.

I got out of the hospital on Friday, and on Sunday August 29th, I quietly celebrated my birthday with my boyfriend. I turned 34 years old. My parents and my two sisters came down to visit me in my apartment. They were traveling over Labor Day weekend, and because of my being the hospital and my birthday, they all decided to come to New York. My mother made me my favorite birthday cake, angel food with homemade frosting.

We had a nice weekend, and then on early Monday morning I used the bed as a toilet. My boyfriend didn’t even have time to clean up the sheets, he carried me down the stairs (we live in a duplex) at 5:30am, and my sisters, who were sleeping in the living room had no idea what was happening at all. My parents were in the downstairs bedroom with the door closed. They had no idea I was being taken by my boyfriend to the emergency room. The doctors put me through throw the same rounds of tests for five or six days.

“Encephalopathy: Degeneration of brain function, caused by any of various acquired disorders, including metabolic disease, organ failure, inflammation, and chronic infection .” This is the American Heritage Science Dictionary definition, and which I didn’t know at the time. And I was so sick of being in the hospital, and I just wanted to go home. What I knew was I really needed to watch my protein intake diligently. My doctor put me on Lactulose, which basically made me have diarrhea all of the  time, and not only that I was incontinent. So I traded in my 2(x)ist Luxe Cotton Contour Pouch Briefs for Depends.

I was still a fashionista, but because I was 110lbs. pounds, and the fact that I was always changing my protective underwear (diaper), so I switched my look to “just-got-out-of-the-gym" clothes. Even though, I’d wasn’t visiting the Sport Center at Chelsea Piers for like fives months. My friend Kate who has been so supportive during my illness. She took me to Patagonia. I bought tons of coats, mostly on woman’s clothes because the men’s extra-small was too large. It was all about elastic waist pant from now on.

Now I was really scared of going to the hospital again. Before the liver disease, I was injecting steroids to maintain weight, and to look good dancing with my shirt off at the clubs. My liver was “saying stop the ride I want to get off.” But I didn’t have hepatitis B, which is usually the cause of liver disease; my liver disease was unique. Hepatic Encephalopathy, which I was very familiar with, was caused by portal hypertension (let’s translate this into English.) In essence, the AIDS meds and the quarter pounder were not being broken down by the liver at all; they were just hanging out doing things to my brain, which caused me to feel like I was on Special K. At this point, I was seeing five different doctors, who were specialist in their fields. One of them was Dr. Donald Kotler at St. Luke’s/Roosevelt Hospital, and he mentioned he’s only known one other AIDS patient who has the same symptoms.

Anyway, I enjoy the holidays. Spent a lot time on my tree, it was shades of chartreuse with accents of gold. The tree was my ode to global warming, very Al Gore meets Martha Stewart. My boyfriend and I went up to my parents house for Christmas, I told them I was planning a trip to Cincinnati in January 2005.

When I was working at Gap, I meet Marie, an women accessories designer. We both had the same boss, Emma. Marie started at Gap two weeks after I did, so we were very new to the situation. I had been working at Old Navy for over eight years. Now I work on the 4th floor instead of the 5th, but it was like a whole different world. They spoke a whole new idiom at Gap, we jokily called the language GapSpeak. Marie and I became fast friends. When I left work after four months, Marie came over to spend long lunches at my apartment. Marie was a renaissance woman. Before she was working at Gap, she’s was living in the same building as Patrick McMullan, and convinced him to do a retrospective book called So80s of his photographs. Marie wasn’t even an art director, and has never done a book like this.

One afternoon I was on the phone with Marie at the Gap office, I think it was in late August, and she was saying wasn’t there an AIDS activist who had a liver transplant. I responded ‘Larry Kramer?’, but what would a men’s accessories designer for Gap have to do with an Academy Award nominated producer, screen-writer, playwright, and author. Within an hour I had Larry Kramer’s phone number, and I would soon find out.

The first thing about our conversation, which lasted over an hour, I remember Larry Kramer’s denim overalls. Ever since the liver disease, and transplant Larry’s butt “had fallen off.” The only thing he could wear were overalls. (I guess he didn’t think of elastic waist pants.) Anyway, Larry was so intrigued that he was speaking to a former Gap designer, and asked why hadn’t Gap done a whole collection featuring the overalls in various fabrics, and fits. Larry told me one time he took old denim overalls to a tailor, and had a copy done in suede. This was for a dinner party or some fancy event. I guess you can call it Overalls Couture!!! 

Larry Kramer was so sincere, and truly wanted to help me. Larry said you’re in need, and it’s my HIV+ duty to help you. He shared his entire transplant story with me, and I was franticly taking notes on all the doctors, hospitals, and transplant advisors. Who knew there were people whose job was to get you a new liver?

Larry’s transplant was scheduled at the University of Pittsburgh Medical Center, where he and his partner had sublet an apartment for a few months. The liver, from a recently departed male patient, was to be delivered by a medical helicopter. There was a slight glitch, he was scheduled for Tuesday, September 11, 2001. Larry, obviously, did not have the surgery that day, and the liver transplant was fortunately rescheduled in December, when another liver became available.

Larry had the transplant at Pittsburgh Medical Center, the surgeon was Dr. John Fung. Dr. Fung had moved to the Cleveland Clinic, since he did the operation. So Larry gave me his e-mail address, and I communicated with Dr. Fung via e-mail until I finally met with him in Cleveland.

Back in November, I had started doing tests at Columbia-Presbyterian in New York, to get on their liver transplant list, as well. The testing was going to take three months to complete, and then they could start looking for a liver. I was going up to Columbia-Presbyterian at least once or twice a week, and I was very weak so I was taking a car service up West Side Highway to 168th St. It probably cost me $200, just for transportation, and that was before I even saw a doctor.

I left for the Cleveland Clinic on Sunday January 16, 2005. Dr. Fung guaranteed that I would be done with the testing in three days, quite a difference from Columbia-Presbyterian. Then again, I was in Cleveland in January, and I didn't want to be there any longer than I should have. I stayed at the Inter-Continental on the Cleveland Clinic campus. It was a far cry from the Inter-Continental Hong Kong, minus the outdoor hot tub overlooking Hong Kong harbor, where I enjoyed myself in 85° weather in November the previous year. This is one of two hotels; they actually have on the campus. The Cleveland Clinic is more like an airport without the planes, it was all connected by skywalks, you never had to put your foot on the ground. And boy, it was -  10 below zero and overcast, you didn't want to be outside at all. There was an Au Bon Pain the size of the State of Rhode Island, and in another building, there was a Mall of America sized food court. This was all very novel, but I realized I was in the Midwest.

About two days into my testing, I met with a nutritionist. I should have seen this one coming, she said I could up my protein intake to 90 grams, which was double what I was doing previously. And I believed her, the nutritionist represented Dr. John Fung the famed surgeon, who gave Larry Kramer a liver transplant. After my meeting with her, I went directly to Subway, in the food court, and ordered a foot long meetball sub. I didn't have a reaction at all, maybe I could stand the extra protein. But the thing about encephalopathy, is that it takes time to build up in the system. And the last time I was in the hospital was in September of 2004. Ultimately, I wasn't put on the transplant list at Cleveland Clinic. My final meeting was with Dr. Fung, he noted that I didn't have hepatitis B, which Larry Kramer had. I was suffering from a unique situation, which , I have to admit, I really couldn’t understand. Dr. Fung, in theory, could given me a liver transplant, but he didn’t really think it would solve the problem. So I returned to my room via the skywalk, and headed back to my version of reality: New York City. A four-day stay in the Inter-Continental, and thousands of dollars worth of tests, and they didn’t even have a hot tub.

I made an appointment with Dr. Louie the Monday after I got back, to discuss my experience at the Cleveland Clinic, meaning Dr. Fung in person, and the size of that gargantuan Au Bon Pain! I had my bloods drawn, and most importantly, I told Dr. Louie about my increase in protein. Dr. Louie was very skeptical, and said I really should speak to Asha Bhalla, my nutritionist, even before I plan to return to nearest Subway. Asha was not pleased at all. Asha didn't believe that this Midwestern nutritionist had any idea what she was talking about. I was still convinced, so Asha and I made a compromise. I could up my protein intake to 50 grams a day, it was 10 more grams. Well, it wasn't a foot long Italian sub, but reluctantly I agreed to it. I added a few burgers, and some steak tartar at Pastise. After the meeting with Dr. Fung, I felt free, out from under Asha reign over me to eat less protein. Like I said, she really was my second mother, my mother is very annoying in a loving way. The “proteins fest,” ended abruptly on Tuesday morning when I was rushed to the emergency room, yet again.

Like I said, it was kind of like Groundhog’s Day. I meet with Dr. Louie, my AIDS doctor, every day, and my neurologist. She, the neurologist, mentioned to me that they were trying to prevent me from having a stroke. I really couldn’t understand what she was talking about. I was more concerned about that big needle they stuck in my stomach, every time I had ascites.  (That's liquid on the belly, for those of you that don't have a medical dictionary at hand.) I was at Club Med (the hospital), for a week. I was free to go, as long as I kept my protein levels down. And I was very good, I realized I shouldn’t leave Manhattan at all, and that airport/mall/hospital in the heartland was not for me.

Winter was very productive for me. I hired an organizer to redo my pantry, my cupboards, and my closets. I really didn't have a lot of energy, so Elfya (the Danish model/ and part-time organizer), was standing on ladders, and installing brackets to organize brooms and dustbins. I was rummaging around with boxes full of stuff from when I was growing up in Schenectady. Most of it I threw out. Of course, I saved my “wubby.” For those of you who don't know what "wubby" is, I've included a picture of Linus, who I modeled myself after when I was wee lad, with his security blanket (or better known as wubby.)

I did venture out, mainly to meet my trainer, Laurie, at the gym. I started training with Laurie in January 2003, at that time I was still working, but getting sicker by the minute. Laurie had an interesting story, for 17 years her father lived with her, in Manhattan, after he suffered a stroke.  The doctors originally thought that Laurie's father would never walk again in his life, and when home therapy ran out,  Laurie continued to train her father, and she ultimately proved the doctors were wrong.   Not only could he walk, but he lived until he was 80, 16 years after the stroke.  Laurie and I became friends, and little did I know, at the time, I had the best trainer/home-therapist in the world!  Laurie leads a class at the Initiative for Women with Disabilities called Strength & Tone, where all the women have some type of physical disabiliy.  Laurie loves teaching this class. So anyway, I knew she would take it easy on me. My days of being a steroid injecting 175 pounds circuit boy, were over!

In fact, Laurie actually trained me in the hospital, at the end the March, because I had another case of Mr. Snuffleupagus! Instead of using weights, Laurie brought me tension straps, and we worked out in the hallway, tying the tension straps around the handrails. The nurses had no idea what I was doing. I was just so sick of being in and out of the hospital for the last six months, so the last thing I wanted was sitting around watching The View, and getting bedsores.

After I returned home at the end of March, I was having trouble keeping weight on. In fact, I was losing a pound a day. At the doctor’s office, which I visited weekly, I weighed in at 104 pounds. Dr. Louie finally decided to put me on TPN, or Total Parenteral Nutrition. All I know, is that it involved needles, and tubes, and I couldn't go swimming, and I had to take a shower with my arm wrapped up in cellophane. So needless to say, I was not looking forward to it. But in the beginning, I really didn’t know how long I would be on TPN, so I really wasn't that scared.

Okay, here is how TPN works. First they find a large vein running up your arm, and then a tube is put inside the vein from the middle of your forearm, all the way up your shoulder, and ending right before the heart. My tube was 39cm long, and unfortunately I saw it before it was inserted into my vein, because the anesthesia hadn't put me to sleep yet. I'm not sure why it went to my heart, rather than my stomach. But that was the way it was usually done, at this point I wasn't really asking questions.

Wikipedia.com states that "when a person's digestive system cannot absorb nutrients due to chronic disease" the system, along with a computerized pump, can give you "nutrient solution consisting of water, salts, amino acids, vitamins and some times emulsified fats.”

I was actually really into it in the beginning. The computerized pump, and what looked like an IV bag, containing David’s baby food , was housed in this black shoulder bag, which I can wear over my shoulder as a Jack Spade messenger. I hated the ugly logo on the front of the bag, so I just turned it around. I only had to wear the bag at night, from around 7 p.m. to 7 a.m. the next day. So when I went out to the movies, and to the theater, I just looked like I just came from the office. But I was wearing shorts, and I was only 105 pounds, so I'm sure somebody figured it out. First I worked with a home care nurse, who showed me how to use the pump, how to refill the bags, and to clean out the vein with saline. I cleaned out a shelf in the kitchen, and put all my different supplies in bins left over from the Container Store. Elfya would be so proud!

(By the way, this is NOT Leandra. I just thought Erykah Badu would get your attention!) I could have written an entire story about Leandra, my home nurse; it would have been a 1000 page biography! Leandra was originally from Trinidad, her marriage didn't last long, and she raised her children by herself. Leandra’s daughter went to a private all-girls boarding school. When she wasn't at school, she was either traveling in South America, or Europe furthering her studies. All of this was done on Leandra's measly New York City Deparment of Health salary, plus the added income from moonlighting as a home nurse.

And now you need the visual, Leandra had her own unique personal style. Leandra was a large woman, no doubts about that! But she carried it off in such a way, and she was always so put together. Leandra dressed in ethnic African clothing exclusively, and it was totally color-coordinated down to her sunglasses. You can forget about the bags, and shoes, and turbans, those were all color-coordinated as well. Leandra must've had two to three dozen pairs of sunglasses. I had TPN for five months, Leandra came once a week to take a blood sample, and I never saw her wear the same outfit ever. After a while, that was the highlight of my week, seeing what Leandra wore. I think my favorite outfit of hers, was when she did this whole white on white, turban to sandals, ensemble for high summer. Of course, you have to remember I was homebound most the time, so you need to put this into perspective.

I started TPN in April, and I had been on it for about two and a half weeks. My boyfriend had planned the trip to see his mother in Miami Beach for Passover. I really had the whole system down, how to clean out my veins with a saline injection, how to load up the bag through the computerized pump, and how to keep everything sterile with alcohol wipes. I was buying family size containers of wipes, and storing them in my Container Store, labeled "ALCOHOL WIPES” in a sans serif type. Any chance to make it a Martha Stewart moment, and I was there! But for some reason, my boyfriend insisted that my parents come up, while he was away in Miami Beach. Somehow, I think he knew.

I think Easter was early that year, sometime at the end of March. My parents who were in Florida, on the West coast (where the Gentiles are) had already celebrated Easter with the retirees from their RV park. My parents arrived on Thursday afternoon; I was booked solid that day. In the morning I met with a contractor, who was redoing our master bathroom sink, then I had an appointment with a liver transplant specialists from Mount Sinai, then I had to go to New York Hospital to a liver transplants seminar, and my last meeting of the day was with my psycho-pharmacologist on the upper West side. Like I said, it was a full-time job, getting a liver transplant.

I hung out with my parents on Friday, I was in a great mood and I really enjoyed being with them.  I hadn't seen them since I was in Schenectady during Christmas. Saturday my sister Debbie drove down for the day to the city. She's also a little bit of a control freak. Debbie is like a second mother to me, or more like Mommy Dearest (she's 15 years older than I am) but when I had diapers to be changed she called in my middle sister for the dirty work. Growing up for me was having two mothers (my mom & Mommy Dearest) plus my nanny (my sister Kathy.)