I'm still alive, I swear! A lot has happened in my little corner of Sick Girl Land as you'll soon see. Over the next week or so, I'll be catching you up. We have now made it up up to April 10, week two of the Coughlympics.
On Monday, I threw myself into work, hoping for a distraction from how badly I felt. It worked to a point. Around lunch, I called the office where I usually see Dr.Lungs to make an appointment. The office told me he wasn't going to be there for two weeks. The practice he's with has two offices and he was at the other one while on call at the hospital. I made an appointment to see him there the next afternoon., arranged for paratranist and let my boss know what was going on. Not that she needed much warning, my cough gave me away. The next morning, paratransit got me to the new office with plenty of time to spare. I drank my breakfast and finished up a book on my Kindle and then headed up to the appointment.
After checking in, a nurse brought me back to a do a mini Pulmonary Function Test called spirometry. This is the first thing I do at every visit to Dr. Lungs. The nurse puts an oh so attractive nose clip across my nose, and I have to breathe into a device hooked up to a computer. The test measures the amount of air you can inhale and exhale. Asthma is actually a disease that impacts how you exhale,. not inhale, even though it feels like the opposite. The test was particularly hard for me that day. Since last September when I began seeing a pulmonologist, we've known that I can't exhale for the required six seconds of the test. We've chalked that up to my positioning. On this day, I couldn't even do it for the second and a half that is my normal. We did the test three times. In the end the nurse handed me the nose clip and the mouthpiece to hang on to in case the doctor wanted to run the test again. I went back to the exam room and eventually Dr. Lungs came in. We talked for a few minutes, made longer by breaks for coughing. He advised that I start the Azithromocin and give steroids a try. He said that if the steroids didn't help, we might be looking on an admit to the hospital to get straightened out. He gave me the first steroid pill in the office, told me not to go to work that day and to e-mail him the next day with an update. I left the office, waited for paratransit, went to work for about an hour and then went home.
At this point, I started feeling a much more intense type of nausea than what I now think of as my "normal" GP-related nausea. I took a rescue of Zofran, which worked, and made a note to let Dr. Lungs know when I e-mailed him the next day.I tried to be as still and quiet as possible the rest of that day. I took my nightly meds and tried to sleep.
The next morning, Wednesday, I learned something critical about myself. I learned that taking a sick day requires just as much commitment from me as does a normal work day. I learned this after working five hours of what was supposed to be a sick day. I e-mailed Dr. Lungs and gave him an update at some point too. His response solidified my love for this doctor. He signed it with his first name. This guy is super cool! He asked me to bump up the steroid, add a regular liquid cough medicine, and e-mail him the next day. All good, I was still free! I let my boss know I would definitely be out the next day, settled in for the night.
The next morning I woke and immediately knew something was very wrong. I have been very hoarse for a very long time,but on this day, I had exactly no voice. Interesting. As the morning wore on I realized that Hadn't eaten or drank anything since the night before. Weird. Even more weird, I was totally fine with that situation. I also noticed a huge increase in cough. Awesome. I e-mailed Dr. Lungs around lunch. The e-mails first line was "I have no idea what's going on anymore." I then caught him up on what had happened. When I was finished composing this whiny laundry list of symptoms, I cautiously hit send, hoping that I could stay free. Because I'm a realist, I also packed an overnight bag.
Not 20 minutes later, I got a response. He asked which hospital of the two where he has privileges did I want to go to? The choice boiled down to the fact that I could be what's called a "direct admit" at one hospital because Dr. Lungs was on call there. Or, I could be admitted through the ER at the other hospital and have some stranger doctor take care of me. Not much of a choice really. After some back and forth about meds and things, I was ready to spend one more bad night at home, with the prospect of a couple of bad hospital nights creating many good nights at home. I was actually looking forward to the next morning. It would be Friday April 13....
Next Up: Hospital Days 1 and 2: APU,CTs and DVTs,
Wednesday, May 30, 2012
Wednesday, May 16, 2012
Catching Up: Who Let the Dogs Out?
I'm still alive, I swear! A lot has happened in my little corner of Sick Girl Land as you'll soon see. Over the next week or so, I'll be catching you up. We have now made it up up to April 5,the night it all began...
The morning of April 5 dawned clear and bright. I pulled myself to sitting, took a deep breath and suddenly was thrust into a nightmare from which I haven't yet awoken. That deep breath resulted in a deep,barky cough. This is an all-too familiar sound to me. It is the harbinger of impending asthma issues. Or usually it is. I was diligent about doing my asthma regime that morning. I had grown lax about it in recent days in the wake of news that my asthma was well-controlled. I did my inhalers, packed my bag with my liquid lunch and rescue inhaler and headed out to work. The cough hadn't subsided despite being treated. I knew it was going to be a long day. I got to work and turned on my heater/humidifier and slogged through the day. By the end of the day, I had coughed my voice away and my ribs felt like they were being torn out of my chest. By 10:00 that night, I had resigned myself to the fact that I was going to need to see a doctor the next day. This was a Thursday, and I could see the writing on the wall forecasting an ER run over the weekend if I wasn't seen on Friday.I did my nightly med regimen and settled into a restless sleep.
The next morning at 9:00 I called my primary doctor. She is oddly territorial sometimes and I've been chastised before for going to the ER instead of going in to see her. At the same time, now that I am the Queen of Specialists, my primary won't touch me for much. It's just strange. Anyway, all of that was kind of moot since no one answered the phone when I called every five minutes for fifteen minutes. I finally gave up and called Dr. Lungs.I unloaded on the poor receptionist. "Hi, This is Emalie. *bark bark bark* Something's wrong with me *bark bark* and my primary won't answer the *bark bark* phone." Whatever I said convinced her and a few minutes later Dr.Lungs was on the line.
"Emalie? What's going on?" he asked. I had never call with something urgent before and I think it threw him.
"I..don't know. I started coughing yesterday, and usually I wouldn't worry except that it's Friday, and my chest hurts with it." All this was said between breaks to cough.
"Let's up your antihistamine and add a nasal spray to dry up some of that drip into your lungs. I'm also going to call in an antibiotic in case you start to run a fever over the weekend. Give that a hot and call on Monday to let me know how you're doing. Hope you feel better."
So, I slogged through another work day. The blessing of this day was that we were getting early dismissal because it was Good Friday. As soon as I could, I left work, picked up meds at the pharmacy and came home.
Throughout the weekend, I took my meds as directed and continued to cough my head off. Anytime I moved, talked, or ate the coughing would escalate. I was also on the lookout for a fever, the signal to break out the just in case Z-pack that Dr. Lungs had called in. I stayed cool as a cucumber, though. By Sunday night, I realized that the meds weren't working. I still felt awful. I resolved to have Dr. Lungs see me early that week. Little did I know just how much I would be speaking to and seeing Dr.Lungs over the weeks that followed..
To be continued...
Sunday, May 6, 2012
Catching Up: Where Oh Where Could that MRI Be?
I'm still alive, I swear! A lot has happened in my little corner of Sick Girl Land as you'll soon see. Over the next week or so, I'll be catching you up. For now, jump into your time machines with me and travel back to March 26th and 27th. Today, we learn how MRI's can roam the world freely.
The day after my four-hour emptying study, I was scheduled for an MRI of my brain. This is done to make sure that there is no abnormality of the brain that could explain the symptoms of GP. This time I asked my brother to come with me for the scan. I didn't think I had it in me after the emptying scan to face the MRI on my own. It turned out to be a very good thing that he was with me.
I got to Big Academic Medical Center with little time to spare, having come directly from work. My brother was waiting for me already. I went to check in. The woman at the desk rifled through some papers for a minute. Then she told me I wasn't on he schedule. OK...where was I on the schedule? The woman gave me directions to a new location where she said they were waiting for me. I went and told my brother about the snafu, and we set off to find the right location. After some confusion about directions, we made it to our destination, a sleek office building. The security person said that there was an MRI scanner in the basement, and told us how to get to it. We took the elevator down and followed a hallway with a lot of twists and turns. We got to the MRI. I tried to check and the the tech told me that his scanner wasn't a brain scanner, that I must be at the wrong place. Was he kidding? Where the heck was I supposed to go? He gave us directions to a third place and off we went. At this point I had missed my appointment, and I was nervous that they wouldn't scan me.
I finally got to the right place, checked in and filled out paperwork. They finally called me back and promptly led me to a dressing room to change into a gown. Two things were wrong with this sitiation. 1. No way was I completely changing for this scan. This was not my first time at this particular rodeo. I had been smart enough to wear pants that I knew were MRI-safe that day. 2. The dressing room door was so narrow I couldn't fit through. So, after I asked whether I could just take off the things of my outfit that weren't MRI safe, and finding a bathroom I could use to do it in, I was ready,
The tech who would do the scan came to talk to me and seemed to want every last detail of my medical history. After what seemed an eternity, we were ready to get the show on the reoad. The tech looked like he would not have been able to lift me, so with some direction from me, he and my brother hoisted me easily to the table. At which point I started to panic. This MRI didn't have any straps to help me feel more secure on the Scanner Table of Death. I cried and begged to no avail, until I simply closed my eyes and they slid me into the magnet.
Typically techs talk to me before starting every series of images, I heard not a word from this guy. Every time I heard the telltale pinging signaling the beginning of a new set, my overworked startle reflex went a bit crazy and I jumped a foot. Fun. It eventually finished, A new tech and my brother put me back in my chair, I got changed and we left. I was so glad to be done!
A week or so later, my motility specialist called and said that the MRI had come back abnormal and they needed an old one to compare it to. I called Big Academic Medical Center where I used to live and got them to send me a copy of my five-year-old scan that I'd had done there. After some delay due to being admitted to the hospital (a super-fun time, I'll tell you about it in the next series of posts), I dropped the disc off with my motility specialist. She called and said that comparison showed no new changes between this scan and the old. I didn't think there would be. I mean, I have CP, which means my brain is screwed up anyway. Essentially that's all they found. Hooray for being normally abnormal!
Next up:The 2012 Coughlympics Begin.
The day after my four-hour emptying study, I was scheduled for an MRI of my brain. This is done to make sure that there is no abnormality of the brain that could explain the symptoms of GP. This time I asked my brother to come with me for the scan. I didn't think I had it in me after the emptying scan to face the MRI on my own. It turned out to be a very good thing that he was with me.
I got to Big Academic Medical Center with little time to spare, having come directly from work. My brother was waiting for me already. I went to check in. The woman at the desk rifled through some papers for a minute. Then she told me I wasn't on he schedule. OK...where was I on the schedule? The woman gave me directions to a new location where she said they were waiting for me. I went and told my brother about the snafu, and we set off to find the right location. After some confusion about directions, we made it to our destination, a sleek office building. The security person said that there was an MRI scanner in the basement, and told us how to get to it. We took the elevator down and followed a hallway with a lot of twists and turns. We got to the MRI. I tried to check and the the tech told me that his scanner wasn't a brain scanner, that I must be at the wrong place. Was he kidding? Where the heck was I supposed to go? He gave us directions to a third place and off we went. At this point I had missed my appointment, and I was nervous that they wouldn't scan me.
I finally got to the right place, checked in and filled out paperwork. They finally called me back and promptly led me to a dressing room to change into a gown. Two things were wrong with this sitiation. 1. No way was I completely changing for this scan. This was not my first time at this particular rodeo. I had been smart enough to wear pants that I knew were MRI-safe that day. 2. The dressing room door was so narrow I couldn't fit through. So, after I asked whether I could just take off the things of my outfit that weren't MRI safe, and finding a bathroom I could use to do it in, I was ready,
The tech who would do the scan came to talk to me and seemed to want every last detail of my medical history. After what seemed an eternity, we were ready to get the show on the reoad. The tech looked like he would not have been able to lift me, so with some direction from me, he and my brother hoisted me easily to the table. At which point I started to panic. This MRI didn't have any straps to help me feel more secure on the Scanner Table of Death. I cried and begged to no avail, until I simply closed my eyes and they slid me into the magnet.
Typically techs talk to me before starting every series of images, I heard not a word from this guy. Every time I heard the telltale pinging signaling the beginning of a new set, my overworked startle reflex went a bit crazy and I jumped a foot. Fun. It eventually finished, A new tech and my brother put me back in my chair, I got changed and we left. I was so glad to be done!
A week or so later, my motility specialist called and said that the MRI had come back abnormal and they needed an old one to compare it to. I called Big Academic Medical Center where I used to live and got them to send me a copy of my five-year-old scan that I'd had done there. After some delay due to being admitted to the hospital (a super-fun time, I'll tell you about it in the next series of posts), I dropped the disc off with my motility specialist. She called and said that comparison showed no new changes between this scan and the old. I didn't think there would be. I mean, I have CP, which means my brain is screwed up anyway. Essentially that's all they found. Hooray for being normally abnormal!
Next up:The 2012 Coughlympics Begin.
Wednesday, May 2, 2012
Catching Up: Radioactive Eggs Take Two
I'm still alive, I swear! A lot has happened in my little corner of Sick Girl Land as you'll soon see. Over the next week or so, I'll be catching you up. For now, jump into your time machines with me and travel back to March 26th and 27th. We find our intrepid heroine about to take on the evil radioactive eggs once more....
I got to Big Academic Medical Center very early on the morning of my second gastric emptying scan. I checked in and waited for a bit. Then a nurse called me back. She asked if I'd had anything to eat or drink yet that day (I hadn't, as instructed) and if I was allergic to eggs (I'm not, thank God.The alternative food for the scan is usually oatmeal,blech.) This time, I needed blood drawn beforehand, so we got that taken care of. The assumption of most of the medical world when it comes to gastroparesis is gastroparesisis equals diabetes.Not so for me, but I submitted to the blood draw peacefully. After that, the nurse showed me the way to the nuclear medicine suite where the scan would be conducted.
A radiology resident came out of his hidey hole and we chatted about my history and diagnosis. He crept back where he came from just in time for the door behind me to open and for a tech to stick hios head out to ask what kind of jelly I wanted on my sandwich. Uh, JELLY? Whose bright idea was it to put jelly with scrambled eggs. Nasty crap. When the guy wouldn't take "None!" for an answer, I acquiesced and asked for grape. Soon, the tech brought me his magnificent creation. It was then that I saw the signs on the door through which he'd just come. "Staff must wear protective gear at ALL times" read one sign. Several florescent green and red bio hazard symbols were plastered to the door as well. I was supposed to eat something that came from there? Bring it on!
I refused to even acknowledge what I was eating and downed two thirds of the lovely sandwich. I then was transferred to the scanner table and put in my ear buds and closed my eyes. Joshua Radin's soothing voice took me away and the first 90 minutes of the scan sped by.
I was transferred back to my chair for 20 minutes while we waited for the two hour mark. At two hours. I was scanned again and then put back in my chair, this time to wait it out until the four-hour mark. I was still not allowed to eat or drink. I took my Kindle and my phone and hung out in the waiting room for about an hour and a half. Fun times! At four hours, I was scanned again and then left to meet a friend.
Fast forward three weeks. My motility specialist called to tell me the results. She said at two hours my emptying time was nearly normal. I started to think she was going to refute the gastroparesiss diagnosis and that I'd be back to square one in terms of trying to figure out what was going on. Her next sentence put to rest any of that nonsense. "However, at four hours the scan was highly abnormal." OK, good! My answer wasn't changing. I could live with that.
Stay tuned for tales of roving MRIs, excellent doctors and a hospital stay.
I got to Big Academic Medical Center very early on the morning of my second gastric emptying scan. I checked in and waited for a bit. Then a nurse called me back. She asked if I'd had anything to eat or drink yet that day (I hadn't, as instructed) and if I was allergic to eggs (I'm not, thank God.The alternative food for the scan is usually oatmeal,blech.) This time, I needed blood drawn beforehand, so we got that taken care of. The assumption of most of the medical world when it comes to gastroparesis is gastroparesisis equals diabetes.Not so for me, but I submitted to the blood draw peacefully. After that, the nurse showed me the way to the nuclear medicine suite where the scan would be conducted.
A radiology resident came out of his hidey hole and we chatted about my history and diagnosis. He crept back where he came from just in time for the door behind me to open and for a tech to stick hios head out to ask what kind of jelly I wanted on my sandwich. Uh, JELLY? Whose bright idea was it to put jelly with scrambled eggs. Nasty crap. When the guy wouldn't take "None!" for an answer, I acquiesced and asked for grape. Soon, the tech brought me his magnificent creation. It was then that I saw the signs on the door through which he'd just come. "Staff must wear protective gear at ALL times" read one sign. Several florescent green and red bio hazard symbols were plastered to the door as well. I was supposed to eat something that came from there? Bring it on!
I refused to even acknowledge what I was eating and downed two thirds of the lovely sandwich. I then was transferred to the scanner table and put in my ear buds and closed my eyes. Joshua Radin's soothing voice took me away and the first 90 minutes of the scan sped by.
I was transferred back to my chair for 20 minutes while we waited for the two hour mark. At two hours. I was scanned again and then put back in my chair, this time to wait it out until the four-hour mark. I was still not allowed to eat or drink. I took my Kindle and my phone and hung out in the waiting room for about an hour and a half. Fun times! At four hours, I was scanned again and then left to meet a friend.
Fast forward three weeks. My motility specialist called to tell me the results. She said at two hours my emptying time was nearly normal. I started to think she was going to refute the gastroparesiss diagnosis and that I'd be back to square one in terms of trying to figure out what was going on. Her next sentence put to rest any of that nonsense. "However, at four hours the scan was highly abnormal." OK, good! My answer wasn't changing. I could live with that.
Stay tuned for tales of roving MRIs, excellent doctors and a hospital stay.
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