radioactive (wo)man!

i had my PET/CT scan yesterday. it was quite the experience. i wasn't allowed to eat that morning or drink anything besides water. after i arrived at the doctor's office and filled out a questionnaire, they hooked me up with a saline IV. the tech warned me i would be injected with radioactive material in order to produce a better picture for the PET scan.

so, the tech left to go get the radioactive material, and when he returned, he was all hazmat-ed up (not quite THAT bad), and was carrying a little lead box that looked like a lunch box. he unlocked the lead box and i peered inside. the lead walls of the box were at least two inches thick. inside the box was a large syringe encased in lead. needless to say, i was a little nervous. all this lead protection exists to protect the carrier of the radioactive material, and they want to inject this inside me??

after i was injected, i was left to sit for an hour. then, the tech returned and took me into the scan room. the PET scan basically involved me laying very still for about 30 minutes while in a small, narrow, enclosed tube (read: lindsay has a slight case of claustrophobia).

it should take a few days for the doctor to get back to me about whether the tumor on my lung has changed shape or size. until then, i get to do my favorite thing: WAIT.

out.

- L

setbacks

i had a setback last week. i'm not exactly sure why, but i woke up one morning vomiting. it continued for about the next three hours, consistently. i threw up at least 30 times that day. i was unable to eat anything or drink much, so i ended up going almost 40 hours with no food or water.

since then, i have been very weak and tired again, almost as bad as it was 6 months ago. i've had the bad pains in my legs again, and a constant feeling of lightheadedness. i basically drive only to and from work, for fear of becoming too lightheaded while driving. i'm not sure if i should just give it time to get better, or make an appointment. given the amount of $ i already owe in health care bills, i'm leaning towards the former :)

out.
- L

good news and bad news

i received the results of my blood test from the pulmonary specialist. the tests were for any traces of a viral, bacterial or fungal infection that would have caused the tumor on my lung. the doctor was expecting that i had valley fever in the past, as it is commonly found in people who live in desert climates (read: my hometown of phoenix, az) and has been known to leave abnormalities on the lungs of the infected. my test results were negative.

good news: tests came back negative, meaning i've never had valley fever or any of the other infections we were testing for.

bad news: that still doesn't explain what the hell this is. i'm due for a pet scan in about a month, so hopefully that will provide more answers.

i also received the results of the blood test my PCP ordered. we did a comprehensive blood panel plus iron and vitamin d.

good news: rbcs are normal, so i'm not anemic. vitamin d is normal again. iron made a huge jump from last time, so i'm not deficient. originally my iron was 3 (extremely low), now its 47.
normal iron for a woman my age is somewhere between 15-250. so, i'm actually normal now. well, at least in terms of iron. ;)

bad news: i still don't feel normal. so, whatever symptoms i'm experiencing that i thought were being caused by iron deficiency anemia, must be the result of something else. i still don't know what.

as a result of having very limited activity over the last 8 months, my muscles are actually starting to atrophy. i am actually physically incapable of doing much these days. i've been trying to increase my physical activity by walking, but even that is too much some days.

out.
- L

mementos

this is me:

as i've told you before, and you can plainly see, my lungs are HUGE.

i was also able to get a copy of my ct scan, where you can see the tumor much better.

those two large black circles are my lungs. the view here is if you had cut off the top of my torso and were looking down at my lungs. the white penny-sized dot on the left black circle is the tumor on my lung. it is at the very top of my left lung, where my collar bone meets my ribs.

kinda cool, huh? except for the whole tumor part.

out.
- L

my, what large LUNGS you have!

had my first appointment with the pulmonary doctor on friday. her first comment to me, after reviewing my xray and CT scan, were how beautiful my lungs are. apparently mine are just HUGE.

the doctor talked to me for a while about what may have caused the tumor on my lung. she asked about my smoking history and family history. she said it could have been caused by an infection that i didn't even know i had, like valley fever. so, to test if that is the cause, she ran some blood tests.

in three months i will have another scan to see if the tumor grew. if it did, my doctor will order a biopsy. that's where they take a needle and stab me in the chest with it to cut out a piece of the tumor. as you might expect, i'm really hoping that is not necessary.

i did get to see the results of my scan on screen. the tumor is on the upper part of my left lung, almost at the tip. it's about the size of a penny.

out.

- L

aren't you supposed to SLEEP during a sleep test??

i had my sleep test this past week. i didn't like it one bit.

i arrived at the sleep center at 9pm. 9pm is my usual bed time these days, so i showed up in my pajamas. there were a few other people there for a sleep test, and only one sleep tech, so it took her a while to get everyone wired up. since i arrived last, i was wired last. i read my book in my little room for about an hour before it was my turn. this was my room:

not much in my room except a bed, a nighstand, a few pictures hanging on the wall, and a mirror. oh, and this:

that's a camera, staring straight at the bed.

so, finally the sleep tech came in and got me all wired up for bed. the whole process took about 30 minutes. when she was done, i had 5 electrode pads on my face, another 6 on my head, 2 on my neck, 2 on my chest, 2 on my legs, 2 straps around my chest, wires in my nose, a breath sensor that sat on my lips, and a pulse reader on my right index finger.

that thing i'm holding in my left hand is the panel with all my wires. that panel was then plugged in near the bed, and i was unable to get out of bed without calling the tech to unhook me.

by the time the tech turned off the lights, it was about 11:30pm. there was no clock in the room, so the only light came from a circle of small red LED lights that surrounded the lens of that camera on the wall....a constant, eerie reminder that someone is always watching.

for the first few minutes i stared at that camera thinking how creepy it was that they were watching me lay in bed. i started to wonder if i was suddenly part of some secret government experiment. i started to imagine i was going to wake up and realize i had no idea where i had been or what had happened for the previous 12 hours.

however, then i started to remember i had electrode pads all over my head, and "they" could be reading my mind. i know you can't read minds through the electrode pads. but because i was extremely tired, in a weird room and wired to a bed, i decided it might be a good idea to think nice thoughts about aliens and government conspiracies, just in case they could read my thoughts.

i would start thinking about how creepy it was that a camera was staring at me while i had wires coming out of everywhere and was supposed to be sleeping. but then i would think, "uh oh. what if they heard me think that? i'm just kidding....it's not at all creepy that a camera is staring at me. and, i'm very comfortable with these wires on my head and in my nose. and, that sleep tech seemed like a wonderful lady. i'm not at all worried that she's going to torture me in my sleep."

eventually i must have fallen asleep, because i had some weird dreams, but i was awake for a good part of the night. finally i summoned the tech to unhook me to go to the bathroom at about 6am, and she took off the electrode pads. some of them had been taped pretty well to my face, so they took a little skin when ripped off.

i certainly hope i don't have to have another one of those soon. not very fun. i do want to mention, however, that the place i went was actually very nice and the people were very helpful. it's just a lame test that would be uncomfortable no matter where i went.

out.
- L

there's nothing disorderly about my sleep!

i had an appointment with the sleep doctor yesterday. my primary physician referred me to the sleep disorder clinic, i suspect, because he is running out of other ideas. i've always really enjoyed my beauty sleep and never had much trouble sleeping, so i was rather surprised. certainly Dog can attest to how great of a sleeper i am.



the doctor thinks my restless leg syndrome (RLS) is keeping me up at night. as i mentioned before, the low iron often causes RLS. my legs often have a tingly, almost painful feeling from the knee and below. the doctor suspects my legs continue to move throughout the night keeping me from getting the deep sleep i need.


so, we scheduled a sleep study test. that means i have to go spend the night at a clinic and get hooked up to machines. seems rather pointless - of course i won't sleep well when people are watching me sleep and monitoring my every move!

the dr. did indicate he thinks low ferritin is a part of the problem, more than my PCP has let on. it was comforting to hear that, since it's what i expected all along.

"if everyone is thinking alike, then someone isn't thinking." - Gen. Patton


- L

no turning into a piggy for me!

i was able to get an h1n1 shot today. i don't usually get flu shots as i'm not sure how much faith i have in them. however, with my current medical problems, i figured getting the flu (pig or otherwise) could be pretty bad for me. the same place i went for my seasonal flu shot called me this morning and asked if i wanted an h1n1 shot. of course i said yes.

i suppose i can stop avoiding pigs now.


i'm interested (and by "interested", i mean nervous) to see how i feel in the next few days. i got a seasonal flu shot last week, and felt rather flu-ish for a few days afterwards.

one less thing to worry about.

out.
- L

i'd like that with a side of mayo....

i tried to get into the mayo clinic because i have had good experiences in the past. i thought maybe they would be able to help me out now, seeing as it's been 5 months, no one still has any idea, and i don't feel much better.

turns out i was actually rejected by mayo. guess maybe i'm not sick enough. i can, however, go see a regular mayo doctor (just not one at the actual clinic), but unfortunately that will likely require i move to arizona for at least a little while.

so, faced with a dilemma. mayo doctors are the best, as proven by my personal experience in the past, and some improvements need to be made soon, as i can't keep feeling like this. but, i don't want to have to move, just to feel normal.

decisions.

- L

iron (wo)man: the sequel

i have been doing a lot of research about iron, specifically ferritin, over the last few weeks. at my last appointment, my doctor made it sound like my ferritin level was almost normal. the "normal" range is 15-290. i'm currently at 11. back in may, right after fainting, i was at 3.

my research has shown that, while 15-290 is indeed the normal "range", ideal is something more along the lines of 100. a ferritin level of 70 is necessary to regrow hair. no wonder i'm losing hair and feeling tired. did i mention my number is eleven?

rather frustrating, and confusing. it seems as if ferritin is a bigger problem than my doctor let on, but is it the ONLY problem? that is the question.

i really wish someone would just figure out what is wrong with me.

out.
- L

well, it's not pizza!

i was kind of hoping the CT scan would show that little spot on my lung was a piece of pizza that got lost on its way down. unfortunately, no such luck.

turns out i have a tumor on my left lung with benign appearances. they're not certain its benign, as no biopsy was performed, but given my age and low risk factors, the doctors feel comfortable waiting 6-12 months to perform another CT scan to see if the tumor is growing.

so, fairly good news. would have been better if it was just a piece of pizza, though.

"Only two things are infinite; the universe and human stupidity. And I'm not sure about the former." - Einstein

- L

blood tests

i forgot to mention in my last post that i did get blood test results back at my doctor's visit this week. everything came back fairly normal. one of my iron numbers, the one that measures that iron in my blood, is completely normal. the other number, my iron storage (ferritin), is still low but almost normal, according to my doctor. he said the normal range is 15-290, and i'm at 11. is it just me, or does that sound like a huge range??

if my iron is almost normal, and i've been told my symptoms were caused by low iron, wouldn't you expect those symptoms to have disappeared by now? unfortunately, they haven't.

i have my CT scan tomorrow, and my doctor referred me to a pulmonary specialist as well as a sleep disorder specialist. i don't think anyone really thinks i have a sleep disorder, i think we're just all out of other ideas.

oh, and results from the stress test, when the techs freaked out that they saw something, came back totally normal. my guess? i think maybe the spike in my heart rate occurred when the techs were talking about the donuts in their break room, since i hadn't eaten in 4 hours at that point. i guess love will do that to your heart.

- L

you think you saw what??

i had my second stress test in one week today. totally lame. this time i had a stress test with echocardiogram, which means they do an ultrasound of my heart before and after exercising.

for a stress test, the technicians have a target heart rate that they need to get you up to in order to make sure your heart is truly "stressed". my target heart rate was 180. that sounds kind of high, given that my normal heart rate sitting is usually about 60. however, as i mentioned earlier, my heart rate increases just upon standing, even if i'm just standing still. when they put me on the treadmill this morning, even before they turned the machine on i was already at 110. so, getting up to 180 was a breeze. i could have continued to run for a while longer (see, i'm not THAT out of shape!) but they stopped once i reached the goal.

immediately after the treadmill stopped the technicians pushed me on a bed and began the echocardiogram. they moved the little stick around my chest and took pictures of my heart. at one point, the technician performing the echo turned to the other tech and said "woah! did you see that??!!" i looked at the screen to see what she was talking about, and all i could tell is that my heart waves had completely dropped off the screen for a few seconds, before coming back and resuming normal wave activity. the tech saw it again a minute or so later, and AGAIN exclaimed "oh my god!! did you SEE that?" when i asked what she saw, she dismissed my question.

don't you wish they taught medical technicians better bedside manners? aren't they trained to keep a straight face??

so, naturally, i've been worried all day since my test this morning. what did they see? is it something bad?? is my heart okay??

out.
- L

apparently i must be stressed....

...because i failed the stress test. had my treadmill stress test yesterday. i thought it went okay, i didn't have any problems running and the test technician didn't mention any problems. however, i got a call from my doctor this morning that i have to do it again. apparently the results showed a postive for something called ischemia. however, ischemia false positives are common in women my age, so the doctor thinks that's what it is. so next week i get to go in for another stress test, this time with an echocardiogram before and after exercising.



on a more exciting note, the beach house here is AWESOME! we're having a great time right on the sands of mission beach. in fact, i've got better things to do than sit here and blog! peace out!

- L

do i have something on my chest?

i was supposed to get the holter monitor put on tomorrow. i called the cardiologist today because, as i mentioned before, i have to have the holter monitor on for 24 hours. my stress test is scheduled for tomorrow, then they were going to put the holter monitor on right afterwards. however, i didn't want to run on a treadmill, put on a monitor and not be able to shower for 24 hours. that seemed like severe punishment for my friends at the beach house and the bf. so, they offered to put the monitor on today and it will come off tomorrow right before my treadmill test. which means....shower tomorrow after the treadmill! hooray!



so, i have all these wires sticking out of my chest. i feel a little like an alien, but not even one of those cool green slimy aliens that sigourney weaver rocks, but instead like one of those goofy aliens will smith is friends with. not quite the same thing.

if you compare that picture above, with the picture from the night i came home from the ER back in may, you can see an obvious difference, and probably understand why i'm a little nervous about the treadmill test tomorrow. someone's a little out of shape. :)

out.
- L

eeeeekg

i saw my primary dr. he took another EKG and scheduled a holter monitor and stress tests for my heart, and another xray to figure out what that thing on my lung is. he thinks it could just me a discolored spot or a calcium deposit, so we need to get a better look.

in the last 4 months i have had 4 EKGs. i really wish people would stop ordering them - if they're coming back normal, maybe we should stop wasting my money!! i bet my insurance company isn't too happy with me. i've already cost them thousands of dollars in the last few months, and unfortunately it looks like its about to get even more expensive.

the stress test is where they hook me up to an EKG and it records my heart activity while i exercise on a treadmill. a holter monitor, unfortunately, is a device i have to wear for 24 hours that records my heart activity through the electrode pads like an EKG. unfortunately the only time i could schedule the heart monitor test is for the weekend when my friends and i have rented the beach house. i'm going to look pretty silly in a bathing suit!!

out.
- L

back in the ER, back in the ER, back in the Eeee Rrrrr!

well, i was back in the ER yesterday. one of the symptoms i have been having over the past few months is accelerated heart rate every time i stand up. when sitting its usually at about 60-70 bpm, which is very normal. but when i stand up, it goes up to about 120. this weekend it went as high as 165. it's a weird feeling when your heart is beating as fast as it would be if you were exercising when you're just standing there.

in addition to the accelerated heart rate, i also had chest pains and shortness of breath all weekend. on monday morning, i called my doctor to try to get an appointment. the receptionist put the nurse on the phone who told me to immediately go to the ER. at the ER, they ran a bunch of tests including an x-ray, an EKG and blood tests.

the doctors couldn't find any reason for the chest pain or shortness of breath. however, the x-ray did reveal that i have a spot on my left lung. i don't know what it is, or what that means, but i don't think that's good news.

out.
- L

happy birthday Dog!

four years ago today, Indiana Jones Gilbert was born. hooray! happy birthday Dog!

out.
- L

holy crap, i'm old.

today is my birthday. my thirtieth birthday. exactly when i turned into an old lady, i'm not quite sure.

my moms flew in for the big day, and i think my sister is driving over. the three of us plus the bf are going to go check out the "bodyworld" exhibit at the museum of history in balboa park. after that, we have dinner reservations at hawthorne's in north park.

i'm not doing much to celebrate today, but some friends and i have rented a house on mission beach in september for a joint 30th celebration. i hope by then i'm back to normal.

i wish i was feeling better and had more energy so i could go out and have a good time (a good enough time to forget about being 30!!), but this is the hand i'm currently holding, so i'll do with it what i can. besides, it could be worse....i could be turning forty!!

out.
- L

do i look like i'm turning into a vampire?

i've been on iron pills for about a month now, but haven't really noticed any improvement. i'm also trying to eat a lot of foods with iron in them. and, i heard Guinness has iron in it.

perhaps i'm just a 24 pack away from being healthy again.

i have, however, expanded the list of symptoms i experience. i don't know if all of these are caused by iron deficiency anemia, or if some have as-of-yet unknown causes. besides the obvious overwhelming fatigue, here are some of my other symptoms:

i have a constant feeling of tingling in my legs, which i've heard referred to as restless leg syndrome. this is actually a well known symptom of iron deficiency.


difficulty concentrating. my head always feels cloudy, and more so than usual.


weakness. my arms and legs always feel like jello. i also tend to have swollen hands and feet. for the first few weeks, i actually had a swollen tongue. that wasn't fun.


hair loss. this one is particularly difficult for me, as i used to have a LOT of THICK hair, and i'm only 29, and, i'm a woman!! i've definately noticed a lot more hair around the house than usual. makes me wonder if i wasn't just going crazy from studying for the bar when i wrote this a year and a half ago.


short term memory loss. it has become very difficult for me to remember the......wait......what was i saying?


difficulty regulating my body temperature. i can go from feeling very cold to very hot in a matter of minutes.


the most interesting symptom by far is craving blood. pica, which means the craving of non-food items, is not unusual in iron deficiency. usually people crave things like ice, dirt, or clay. i, however, crave blood. it started as craving rare bloody meat, which is probably normal for someone who is lacking iron since red meat has a lot of iron. but after a while, it turned more into craving the "bloody", and not so much the "meat". i haven't actually consumed blood, nor do i intend to, but the craving is definitely there. i feel a little like a vampire.


perhaps that could be a new career choice.


out.
- L