I'm sure many of you are wondering where my glorious blogs of the meaning of life have been. The best way to tell this winding tale is at the beginning.
Friday, January 25th I had been experiencing chest pains making it difficult to sleep on my back and breathe normally. I went into Boston for a therapist appt and to see my T doctor. My therapist noticed something wasn't right so I told her about the chest pain. She was glad I had an appointment with the doctor and hoped I felt better soon. Went to see my T doctor, Kevin, and told him about the pain. He listened to my chest and sent me to get a chest x-ray. This involves waiting for a cab and if you’re lucky, having the cabbie curse bilingually in English and Russian. I get my x-ray (and was able to keep my shirt on this time so no "tight shirt" issues," and head back to north station. Except I'm in the middle of Brookline and have no idea how to get back and it's cold. I hop the green line going inbound assuming there will be a station I cane change over on. Nope. I ride all the way to the end of line, get off, so across the street to CVS to buy a candy bar just so I can get cash back because, of course, I have no money left on my Charlie card. I finally get back to North Station and wait around for the train. My doctor said he'd call me with the results of the x-ray if all was not well, but it was almost 5 so I assumed everything was fine. I finally get home at around 7:30 because of course my bus was late and I felt awful, considering I started my day 12 hours before. However, the worst came later. I woke up in the middle of the night in the most amazing pain I have ever felt. Because I had gotten in so late I didn't have a chance to fill the pain killers my doctor gave me. So here I am, 4:45 am by myself crying (I haven't cried since June) on the phone because I am in so much pain. I can't actually verbalize it here, so you'll just have to imagine it. I finally get as comfortable as I can in a sitting up position and pass out for a few hours.
Saturday, January 26th this day is pretty uneventful. I am still under the impression that my chest pain is temporary and will go away on its own. I take it easy and go to see my mom on Worcester that night. On the way I get a phone call from my doctor. Apparently the lab didn't page him the results of the x-ray and he had just gotten them. He told me not to panic, but he didn't want me to wait the weekend to get checked out. My x-ray showed fluid surrounding my heart and the heart was slightly swollen and my lungs had some fluid in them as well. I asked if I could wait until the morning and he said that was fine. He wasn't me to go to Beth Israel Deaconess in Boston because it's the hospital he would directly with. I went to dinner and waiting for my mom to get home trying not to panic. Luckily I have filled my oxycodone prescription so that takes the edge off my pain, but it doesn't help that I still have to sleep sitting up.
Sunday, January 27th I decide not to tell my mom about the hospital and I leave early in the morning saying that I have to go to work. Nope, no work. Beelined it for the ER. After getting lost on the wrong campus and stuck at a 10 minute ER, I find the ER and they take me right away. I am told that my vital signs are "crummy" and I have the blood pressure of a 70 year old obese man. Hooked up to the IV and heart monitor I go. Bring in the echocardiogram, the chest x-ray, lets throw in a chest CT scan. And don't forget all the blood cultures and urine tests. At some point in all this I realize that I'm staying the hospital. They have figured out at this point that the fluid around my lungs is probably pericarditis. More on that later. I think it sounds like pterodactyl. Probably around 4-5pm (I got there at 9am) they move me up to the cardio floor. I am given lots of drugs to keep me pain free and here begin my stay in room 319. My highlight of this day is that, who know, you can use call phones in the hospital. So I call my mom and see says she'll be there the next day.
Monday January 28th I call my boss to tell him I won't be into work today, nor do I know when I will be. He tells me to get better soon. I have two tests scheduled for today, an ultrasound of the kidneys and another echo. During all of my tests I have been naked in one way or another, but everyone I interacted with was very good about my personal space and addressing me how I wasn't to be addressed. I even joked with some of the nurses about it. Overall the doctors wanted to learn more about my being Trans and what that was like for me. During the ultrasound of my kidneys another technician was around watching. When my technician got to the bladder the other guy was like, Whoa. Where is his prostrate? So he asked me if I had any surgeries, I said my spleen. and he just looked so befuddled. I never told him ;P At some point the I have an entire team of doctors assembled from cardio, rheumatology, and nephrology. The tests confirm that was lupus is back with vengeance. The doctors can't tell if the pericarditis (heart fluid) caused the lupus to flare or visa versa. The pericarditis makes me a hit on the floor because Beth Israel a teaching hospital for Harvard Medical Students and apparently my condition is one in which they read a lot about but might never hear it. The way it was described to me is that the heart makes two distinct sounds, while mine was making those plus a crunchy sound. They let me listen but I didn't hear it. I had at least 20 students listening to my thumpa crunchy thumpa.
Tuesday January 29th Things get a bit blurry here because in the hospital you don't really sleep all that well. Every night there I sweat like a pig and had to completely change my clothes. It got so bad that the nurses would just start leaving a complete bed change for me. I think Tuesday was the day I finally got to shower. That was amazing because I smelled like a dirty monkey. Later in the day I was eating lunch in walks my grandfather and his girlfriend with a pretty plant and a flower balloon. Hey, they tried ;P They were leaving for a cruise on Friday and my grandfather didn't want to go without seeing me. They were around when the doctors came in and let me know they recommended a kidney biopsy to see what was going on. About 4 years ago I had a doctor want to do one and I basically told him to go fuck himself because I wasn't sick. Well, now I'm sick. Let's do it. The biopsy is scheduled for 10am the next day, giving me plenty of time to freak out. My mom called later and said that she would come up after work whether I liked it or not. Who can argue that? ;P I got a lot of phone calls that day. My therapist called because she had just heard from my doctor, my doctor called to let me know he was keeping an eye on the situation, and a guy from work called because everyone was worried. Also on this night they started me on a giant dose of IV prednisone. This major amount of steroids spiked my blood sugar meaning the rest of my time in the hospital had finger pricks and insulin attached ;P
Wednesday January, 30th Biopsy day! Of course I have to fast all morning so I'm jittery and hungry. The day before a woman came in explaining a research study they were doing on lupus. My blood is gold to them because I was showing an active flare and it's rare for them to get. I say sure and sign off on the paperwork. She says she'll be back in the morning for the blood. Morning comes and in order to do the biopsy they need to take blood to make sure that it's not too thin and I won't bleed everywhere. First nurse comes in, can't get the blood. Stick me like 3 different times. Research lady comes in. She can't get it. Now everyone is in an uproar because if they don't get the blood the biopsy will be delayed. Researcher calls over to her friend in another building. One of the nurses calls upstairs. I think at one point someone else tries. Finally the researcher's friend the phlebotomist comes in an, EUREKA! There will be blood. Now I'm being rushed off to the biopsy room. Can I just say thank god for sedation? The biopsy is done with localized anesthetic so I was awake the entire time. It almost felt like I was permanently at the place right before you completely wake up from a nap. The anesthesiologist was amazing and stayed with me the whole time making sure I was fine. After 30 minutes of recovery I was moved back to my room and couldn't move for 6 hours. Luckily I only had to bedpan it once. By Wednesday night I felt fine. My mom came up and brought sandwiches. The entire time I was in the hospital I only yelled at her once and that's because she was interfering with the doctors trying to talk to me and called me she. I got another dose of the IV prednisone and for some reason this one burned for the entire hour. Not pleasant. I get good news. They will probably be sending me home on the next few days.
Thursday, January 31st Of all the places I thought I would be watching the season premiere of Lost, the hospital was on one of them. Thursday as a day was pretty uneventful. I finally came to terms with not going home until Friday. The doctors came in and told me they wanted to start treating my lupus kidney failure. The best way to do this is to use a really small dose of chemotherapy (like, less than 20x that of normal chemo) IV once a month. This obviously turns into a pain in the ass because the chemo people have to come in and I had to have 4 hours of IV fluid before it and then I had to be hooked up to the chemo and then 3,6,and 9 hours later I had to get some other stuff pumped in. Looking up at the IV thing and seeing all those bags is not fun. The best part of all this is that we still have to do the prednisone IV as well. And I'm only hooked up to one port. I think I was put the IV at like 7pm. The entire process was done at about 10am. Needless to say I didn't get much sleep.
Friday, February 1st Congratulations! You have made it to the end of my sordid tale. I'm sure I've left some things out and I'm positive my memory isn't the greatest. But here you are. Friday afternoon around 2pm they finally let me go home. I slept almost the entire way and woke up to go to CVS and fill my six prescriptions. Even now after typing I'm really exhausted. I'm sure it will take some time to get back to "normal." I quit my job because it's not worth letting my health get this bad to realize I need to change some things. I know things will be rough for awhile but I need to concentrate on getting better.
