I started writing again. Nothing impressive, just some character development and a little storyline. Last week I wrote a little bit in McDonalds, which was actually a great place to write. My hand has been cramping up from my bad joints so unfortunately I had to stop. I also started a sort of journal, mostly of doctors appointments and train rides.
My back has been bothering me so everyonce in awhile I pop an oxycodone at night. As I did tonight. The only problem with this is that I become a little loopy yet really clear-headed. And my back stops hurting.
Had an appointment with the kidney doctor yesterday. Lab work shows the damage to my kidneys is being repaired. He told me that the doctors understand that the next 6 months are going to suck for me because of all the medication and I'm going to feel pretty bad most of time. He's hoping after the initial 6 months they can go easier on me, but from what he said I'm going to be on treatment for quite some time.
It's time for my second treatment of cyclophosphamide, which is an IV chemo that is used to treat cancer and autoimmune diseases. My appointment is tuesday at 10 and my mother is coming with me. Yes, Janet is coming to the doctor. That should be a children's book. She really wants to come. The last time I saw her she was convinced I was dying, so I figure it could be good for both of us. First of all, I save money because she's driving in and secondly I don't have to go to the first appointment by myself. I'll be receiving the treatment for 6 hours. But I get a bag lunch. Woo! ;P
Today was a really tired day. I did errands in the morning and by 1pm I took a 2 hour nap. I'm still exhausted and will probably go to bed soon. I'm currently reading 3 books. I should finish one soon.
Thats all for now. I'm sure I'm missing something. Next time, then.
Friday, February 29, 2008
Saturday, February 16, 2008
Bloody knees and old men
I've been thinking that it may be therapeutic for me to update my blog more often. I want to start writing again because as many of you know it is damn near impossible for my ADHD brain to put thoughts on paper. And impossible if I wait too long.
Thursday I had a doctor’s appointment with my primary care, Kevin. Off I go early in the day to kill two birds with one stone. 1) I have the original appointment and 2) I have to get my blood work done at Beth Israel anyway. On the way to catch the bus I manage to slide (literally holding onto the railing) down my stairs and, just when I thought I was fine, slipped on the ice at the bottom. Afraid to miss my train, I leave anyway and try to deal with the blood using my glove. Unfortunately I was wearing khakis and my blood is a little bit thinner than normal, so I continued my day with a bloodbath on my left knee. Needless to say nobody messed with me ;)
One of the side effects of the 60mg of prednisone I take daily is that I eat all the time. It's really annoying and something I have to watch out for. However considering I lost 12lbs in one month not many people seem to be too concerned about it. There is a food court right near Beth Israel and I had been daydreaming about a foot long subway sandwich for days. After getting my sandwich, chips, and some root beer and gaping at the ridiculous price (Almost $10! ARE YOU SERIOUS??) I put half the sandwich away for later and ate lunch. Right as I finished I got a phone call.
It's the lady from social security inquiring about my online disability form. I explained to her that I was going to make an appointment, but she said she only works on these claims Tues and Thurs and next week she would be on vacation. Right now it is! I was on the phone with truly and nice woman, probably around my age for one hour and 13 minutes in a food court answering questions from my ENTIRE 10 years of work history to if I hide money under my mattress. The best thing about this is that I should be getting a packet in the mail that I can sign, send back, and get this process rolling. The bad news is that it normally takes 3-4 months for a medical decision to be made and there is a very good chance of getting denied and having to appeal it. Ugh.
After the phone call ends (and my phone starts to die) I realize I have less than an hour to get my blood taken and get to Back Bay (for anyone who knows where Beth Israel is, this is a little bit of a hike.) Oh, and my knee is killing me from the earlier spill. So I power limp to get my blood taken, give my urine, let the tech ooh and sigh at the state of my bruised veins, and power limp back to the T stop. I got to Downtown Station to switch to the orange line at 3:16. My appointment is at 3:20. I called the doctor’s office to let them know I would be late.
I roll into the office 10 minutes late and am told that I have to call my insurance company because I never officially switched my primary care to Kevin. Apparently Network Health just gave me a random doctor in Worcester because I used my mother's address. So I get on the line and I can't hear the woman, then I go on hold. Well of course at that time my doctor is ready. So I hang up.
This was the first time since I was in the hospital that I got to see my doctor so that was nice. He told me that when he first looked at the chest x-ray from before he hoped my body would bounce back from it. This made me think it was altogether way worse than I thought. He seemed pleased with the way my body was functioning, how everything sounded, and the way I was responding to the meds. He also has been doing a lot of research on the effects of T and lupus and can't find any. Apparently him and the coordinator of the Transgender program at Fenway will be working on an entry for the journal and be presenting it at a conference. I think that's awesome. He sees no reason why we can't continue the hormones but I guess the steroids have a similar structure so he just wants to make sure the steroids and T won't kill me ;P He said we waited this long a few more days won't kill me. He's concerned about the emotional and physical withdrawal of the T. I've been off it for about a month now. He also told me to be careful if I start thinking people are following me or if people on TV are talking to me. Like if Howie Mandel offers a million dollars just to me. Prednisone is creepy shit.
After getting my blood taken for the 2nd time in a few hours (he wanted to check my glucose because I was complaining of sugar level issues due to the prednisone and how they were giving me insulin in the hospital) and getting a shot of vitamin B-12 I get back on the phone with the insurance. Apparently my request went through the first time. Sweet.
It's funny thinking of this as a long weekend because now every weekend is long to me. I went to the library last week and got a library card so I could take out books. I've never been in a situation where I literally have nothing to do. This morning I cleaned the bathroom from top to bottom. My cat didn't know there was water in the tub and, as I was washing off the rubber duckies, he wanted to play and jumped in. I don't think he'll make that mistake again. I'm also having trouble, as mentioned before, with eating everything in sight. Another thing that makes this difficult is that I can't tell if it's all from the prednisone or if I'm eating because I'm bored. I think it's a mix.
I'm also very limited by the amount of physical activity I can do. Yesterday in the AM I walked just under half an hour to the grocery store, shopped, and then walked the same distance back with a backpack filled with food. Back in my normal healthy days that wouldn't have fazed me but it completely knocked me out. In bed by 10. I'm going to have to figure out things that I can do that are low energy, or something I can do outside a few times a week.
And then I think about the monthly doses of cyclaphosamine (essentially a low low dose of chemo for my kidneys.) Because the only one I've had I was in the hospital and literally up all night and hallucinating, I don't know how this is going to affect my energy. I'm very concerned about becoming a shut in and depressed. The only think I miss about UPS is the social atmosphere I had on a daily basis. I know I'm not the most social person in the world, but I really want to work on that. Especially now when my day is built around my cat's eating habits.
The New Hampshire Telegraph has been publishing a series called In Transition on the transgender community on the front page of the Sunday paper. I just read the second installment today and I think they are doing a good job. They have been focusing on male - to - female transfolks and even did a story on a therapy group they have. In my experience it is much harder for an mtf to transition both physically and into society. They also posted an article that focused on why some psychiatrists believe that gender identity disorder is a legitimate mental illness and should be treated as one, that is we should be treated mentally and be taught to be comfortable in the bodies we were born in. It also talked about religious persons saying that God specifically said man and woman and to reject the sex God gave you is to reject God. Well, I've come to terms with the fact that there is no way I would ever be comfortable in a female body. If my doctor told me I could never take T again I would be devastated but I would also be grateful for the time I had and try to live my life as a man as normally as possible. It's not like I'd be like, well I gave that one a try, bring on the dresses!
This is a really long post, so I'm going to stop talking now :)
PS - I just looked at the title of the entry and noticed I forgot to mention the old man. When I was walking to the grocery store yesterday I came across an old man stranded behind some ice on the sidewalk. He asked if I could help him and of course I did. I told him to be careful of the ice. He told me thank you and that he hoped I never got old. It made me smile.
Thursday I had a doctor’s appointment with my primary care, Kevin. Off I go early in the day to kill two birds with one stone. 1) I have the original appointment and 2) I have to get my blood work done at Beth Israel anyway. On the way to catch the bus I manage to slide (literally holding onto the railing) down my stairs and, just when I thought I was fine, slipped on the ice at the bottom. Afraid to miss my train, I leave anyway and try to deal with the blood using my glove. Unfortunately I was wearing khakis and my blood is a little bit thinner than normal, so I continued my day with a bloodbath on my left knee. Needless to say nobody messed with me ;)
One of the side effects of the 60mg of prednisone I take daily is that I eat all the time. It's really annoying and something I have to watch out for. However considering I lost 12lbs in one month not many people seem to be too concerned about it. There is a food court right near Beth Israel and I had been daydreaming about a foot long subway sandwich for days. After getting my sandwich, chips, and some root beer and gaping at the ridiculous price (Almost $10! ARE YOU SERIOUS??) I put half the sandwich away for later and ate lunch. Right as I finished I got a phone call.
It's the lady from social security inquiring about my online disability form. I explained to her that I was going to make an appointment, but she said she only works on these claims Tues and Thurs and next week she would be on vacation. Right now it is! I was on the phone with truly and nice woman, probably around my age for one hour and 13 minutes in a food court answering questions from my ENTIRE 10 years of work history to if I hide money under my mattress. The best thing about this is that I should be getting a packet in the mail that I can sign, send back, and get this process rolling. The bad news is that it normally takes 3-4 months for a medical decision to be made and there is a very good chance of getting denied and having to appeal it. Ugh.
After the phone call ends (and my phone starts to die) I realize I have less than an hour to get my blood taken and get to Back Bay (for anyone who knows where Beth Israel is, this is a little bit of a hike.) Oh, and my knee is killing me from the earlier spill. So I power limp to get my blood taken, give my urine, let the tech ooh and sigh at the state of my bruised veins, and power limp back to the T stop. I got to Downtown Station to switch to the orange line at 3:16. My appointment is at 3:20. I called the doctor’s office to let them know I would be late.
I roll into the office 10 minutes late and am told that I have to call my insurance company because I never officially switched my primary care to Kevin. Apparently Network Health just gave me a random doctor in Worcester because I used my mother's address. So I get on the line and I can't hear the woman, then I go on hold. Well of course at that time my doctor is ready. So I hang up.
This was the first time since I was in the hospital that I got to see my doctor so that was nice. He told me that when he first looked at the chest x-ray from before he hoped my body would bounce back from it. This made me think it was altogether way worse than I thought. He seemed pleased with the way my body was functioning, how everything sounded, and the way I was responding to the meds. He also has been doing a lot of research on the effects of T and lupus and can't find any. Apparently him and the coordinator of the Transgender program at Fenway will be working on an entry for the journal and be presenting it at a conference. I think that's awesome. He sees no reason why we can't continue the hormones but I guess the steroids have a similar structure so he just wants to make sure the steroids and T won't kill me ;P He said we waited this long a few more days won't kill me. He's concerned about the emotional and physical withdrawal of the T. I've been off it for about a month now. He also told me to be careful if I start thinking people are following me or if people on TV are talking to me. Like if Howie Mandel offers a million dollars just to me. Prednisone is creepy shit.
After getting my blood taken for the 2nd time in a few hours (he wanted to check my glucose because I was complaining of sugar level issues due to the prednisone and how they were giving me insulin in the hospital) and getting a shot of vitamin B-12 I get back on the phone with the insurance. Apparently my request went through the first time. Sweet.
It's funny thinking of this as a long weekend because now every weekend is long to me. I went to the library last week and got a library card so I could take out books. I've never been in a situation where I literally have nothing to do. This morning I cleaned the bathroom from top to bottom. My cat didn't know there was water in the tub and, as I was washing off the rubber duckies, he wanted to play and jumped in. I don't think he'll make that mistake again. I'm also having trouble, as mentioned before, with eating everything in sight. Another thing that makes this difficult is that I can't tell if it's all from the prednisone or if I'm eating because I'm bored. I think it's a mix.
I'm also very limited by the amount of physical activity I can do. Yesterday in the AM I walked just under half an hour to the grocery store, shopped, and then walked the same distance back with a backpack filled with food. Back in my normal healthy days that wouldn't have fazed me but it completely knocked me out. In bed by 10. I'm going to have to figure out things that I can do that are low energy, or something I can do outside a few times a week.
And then I think about the monthly doses of cyclaphosamine (essentially a low low dose of chemo for my kidneys.) Because the only one I've had I was in the hospital and literally up all night and hallucinating, I don't know how this is going to affect my energy. I'm very concerned about becoming a shut in and depressed. The only think I miss about UPS is the social atmosphere I had on a daily basis. I know I'm not the most social person in the world, but I really want to work on that. Especially now when my day is built around my cat's eating habits.
The New Hampshire Telegraph has been publishing a series called In Transition on the transgender community on the front page of the Sunday paper. I just read the second installment today and I think they are doing a good job. They have been focusing on male - to - female transfolks and even did a story on a therapy group they have. In my experience it is much harder for an mtf to transition both physically and into society. They also posted an article that focused on why some psychiatrists believe that gender identity disorder is a legitimate mental illness and should be treated as one, that is we should be treated mentally and be taught to be comfortable in the bodies we were born in. It also talked about religious persons saying that God specifically said man and woman and to reject the sex God gave you is to reject God. Well, I've come to terms with the fact that there is no way I would ever be comfortable in a female body. If my doctor told me I could never take T again I would be devastated but I would also be grateful for the time I had and try to live my life as a man as normally as possible. It's not like I'd be like, well I gave that one a try, bring on the dresses!
This is a really long post, so I'm going to stop talking now :)
PS - I just looked at the title of the entry and noticed I forgot to mention the old man. When I was walking to the grocery store yesterday I came across an old man stranded behind some ice on the sidewalk. He asked if I could help him and of course I did. I told him to be careful of the ice. He told me thank you and that he hoped I never got old. It made me smile.
Saturday, February 9, 2008
Sitting and... sitting
I've been out of the hospital for a week and my energy level is improving. I quit my job at UPS because of the health concerns posed by this recent diagnosis. On Wednesday I had an appointment with the Rheumatologist, who is the nicest little Asian man. He essentially just went over my diagnosis and made sure nothing new had popped up. It was actually worse than I was aware, being stage 4 kidney involvement aka kidney failure. I've been told that it is all reversible. I also received the pneumonia vaccine and the flu shot (now that I am immunocompromised and all.)
I'm on a type of extremely aggressive treatment for the kidney damage called cyclophosphamide. It's a low dose of chemotherapy that I get once a month for at least the next 6 months intravenously. One week and two weeks after this is also after to get my blood taken and urinalysis. Having gotten this before I was discharged from the hospital, after my appointment I went to get the labs run. Unfortunately I didn't know about the urine and I had to pee really bad so I got rid of it prematurely.
I think the woman who took my blood came over on a Viking ship. She was a big woman with a very thick, almost Nordic accent. She apologized for her broken English but then started cooing at me like a puppy when she saw how bruised my arms were from prior blood work. Having this woman coo "Oh your poor boo boo!" was the highlight of my day. Well, until I asked her what to do if I couldn't produce any urine. She looked confused and slowly tried to tell me how to pee in the cup. I interrupted her and let her know that I was dry. She told me to try anyway or come back another day. So I left with the cup.
I went to see my therapist on Friday. Because of the nature of my illness and all the drs appointments and treatment it has been advised that I can't work. Great. So now I'm all stressed out because I have 0 income and have to go to the social security office to file for disability. Any normal person could file online, however I never changed the name on my social security card so all my information would be invalid. I'm trying not to worry too much about it. I'll just go on Monday, explain my situation, and see what they say.
The hardest part for me right now is not going crazy from boredom. At some point if it looks like the disability thing is going to go through I need to figure out what I'm going to do with my life without having a job. I can only clean the house so much and my myspace profile can't be updated everyday. Its frustrating feeling like my health has tripped me up once again. But at least this time I know I have to listen to my body or it'll get worse.
The high levels of prednisone I'm on make me really hungry. I can eat and a eat and eat and really never get full. But then I can't tell if I'm hungry or I'm eating because I'm bored. Whine whine whine ;P
Oh yes, and because of the treatment consisting of steroids it's been three weeks since my last shot of testosterone. I need to make an appointment with my doctor so we can sit down and figure out what the best course of action is. According to my therapist (who works with my doctor) he said that my diagnosis is really the best we could have asked for, so that's good.
I guess I'll just see what happens and try not to worry too much.
I'm on a type of extremely aggressive treatment for the kidney damage called cyclophosphamide. It's a low dose of chemotherapy that I get once a month for at least the next 6 months intravenously. One week and two weeks after this is also after to get my blood taken and urinalysis. Having gotten this before I was discharged from the hospital, after my appointment I went to get the labs run. Unfortunately I didn't know about the urine and I had to pee really bad so I got rid of it prematurely.
I think the woman who took my blood came over on a Viking ship. She was a big woman with a very thick, almost Nordic accent. She apologized for her broken English but then started cooing at me like a puppy when she saw how bruised my arms were from prior blood work. Having this woman coo "Oh your poor boo boo!" was the highlight of my day. Well, until I asked her what to do if I couldn't produce any urine. She looked confused and slowly tried to tell me how to pee in the cup. I interrupted her and let her know that I was dry. She told me to try anyway or come back another day. So I left with the cup.
I went to see my therapist on Friday. Because of the nature of my illness and all the drs appointments and treatment it has been advised that I can't work. Great. So now I'm all stressed out because I have 0 income and have to go to the social security office to file for disability. Any normal person could file online, however I never changed the name on my social security card so all my information would be invalid. I'm trying not to worry too much about it. I'll just go on Monday, explain my situation, and see what they say.
The hardest part for me right now is not going crazy from boredom. At some point if it looks like the disability thing is going to go through I need to figure out what I'm going to do with my life without having a job. I can only clean the house so much and my myspace profile can't be updated everyday. Its frustrating feeling like my health has tripped me up once again. But at least this time I know I have to listen to my body or it'll get worse.
The high levels of prednisone I'm on make me really hungry. I can eat and a eat and eat and really never get full. But then I can't tell if I'm hungry or I'm eating because I'm bored. Whine whine whine ;P
Oh yes, and because of the treatment consisting of steroids it's been three weeks since my last shot of testosterone. I need to make an appointment with my doctor so we can sit down and figure out what the best course of action is. According to my therapist (who works with my doctor) he said that my diagnosis is really the best we could have asked for, so that's good.
I guess I'll just see what happens and try not to worry too much.
Tuesday, February 5, 2008
Seanie goes to the Hospital
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.
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.
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