The weekend before I had surgery to correct Median Arcuate Ligament Syndrome was an anxious one. You'd think that a surgical veteran like me wouldn't contend with those pre-op jitters. You'd be wrong. Sunday morning I even had a nightmare about the surgery. I'm not even sure what it was about. I just remember waking in a cold sweat absolutely positive that I had narrowly escaped some terrifying fate. tried to think positively. I reminded myself countless times that day that I knew what was coming, that I would be fine. In the end though, a lot was going to be different about this surgery, at least on the surface.
This would be the first time that the decision to have surgery and the signature on the consent form would be all mine. That was just too strange to me. Having all of that responsibility also meant that if anything happened or the procedure didn't go as planned, I would have to live with the consequences. Sometimes, being a grown up is way overrated!
This would also be the first time that my beloved surgeon Dr. M. wouldn't be doing my surgery. Not that he could've, he's a bone guy, a pediatric bone guy. Not so helpful when you're looking to do abdominal surgery. Still, I found myself missing him that day. I liked Dr. B. well enough, but one office visit cannot create the relationship I and my parents built with Dr, M. A relationship made of 20 years of quaterly office visits, clinic visits and of course the surgeries. As a small child, I had surgery almost every summer. That is a lot of time for you to get comfortable with someone. That lack of familarity with Dr. B.threw me a bit on surgery eve. At the end of the day, I knew I was in good hands. Dr. B. is at least nationally if not internationally known as an expert in GP. I also knew that anytime I could nap in the middle of the day should be looked at as a gift!
The morning of June 18, my brother and I braved an especially packed rush-hour train and made it to Big Academic Medical Center just at my "call time" of eight. After waiting for nearly an hour in the waiting room, we were herded up to the pre-op area. He helped me change into a gown and slippers, lifted me onto the gurney, and then we settled in to wait. We talked about the meaning of life. Eventually a nurse came, looked fruitlessly for a good vein to start an IV, and promptly left to find someone known for mining those tiny veins. Soon, the expert came and placed an IV. Dr. B. made an appearance, flipping through my chart, introducing himself to my brother, asking if we had questions. Then he was gone. Next the anesthesiology team came in. We went over my history and when they heard that I had a history of reflux, they brought me a medication that tasted akin to what I imagine turpentine tastes like, with a sour lemon aftertaste. Delightful Next it was time to sign the consent, don a stylish hat and say goodbye to my brother. This was it!
Because of the reflux, they let me sit up until we got into the OR. Once they moved me over to the table, they kept my head elevated with foam. One thing I had forgotten in the time since my last surgery was how cold they keep the OR. Thank goodness for toast warm blankets. The room was a hive of activity. The anesthesiologist worked on positioning me, a nurse strapped boots to my legs to help with my circulation and prevent blood clots. (Those things were amazing! I had never had warm feet until they put them on.) Somewhere in the crowd I spotted Dr B. Then the plastic-smelling mask was over my face and I was asleep.
The next thing I remember was that it hurt to breathe. I cried for meds, and eventually was a bit more comfortable. I saw Dr. B. who promised I would soon be in a room and given clear liquids. Soon ended up being an interminable SIX HOURS later! I was never so happy to see a hospital bed.
By now, I had figured out why it hurt to breathe. I had four small incisions scattered over the upper left part of my stomach. These looked like deep paper cuts. I also had one bigger incison where the "main port" went. This was pretty close to my diaphragm, which is why breathing was so unpleasant. Dr. B. had told me that the first 12 hours would be the most painful. He was right. Over the next three days, PT helped me get into my chair, respiratory did treatments every four hours and I was kept comfortable. Aside from having to bring home a souvenir appliance and the logistics inherent in it, I did really well. I didn't feel better yet but was willing to give it time. Dr. B. had told me that it could take up to three months to notice improvement. I wasn't sure I could wait that long, but promised I'd try to be patient.
Friday, August 24, 2012
Wednesday, August 22, 2012
A Tale of Two Surgeries Part One: A Rarity
I know, I have been less than stellar at keeping up, but that's because A LOT has been going on. If you recall, I'd just been released from the hospital last we met. Let's pick up our story from there. Beware, this is a long chapter in this story!
The morning of Monday, April 23rd, I awoke and eagerly completed my morning ritual. I was excited to get back to work after eight days in the hospital. First though, I was expected at Big Academic Medical Center for yet another scan. This was the last screening I needed before the motility specialist would clear me to see the surgeon to explore surgical options for treating my gastroparesis. I had already had a four-hour emptying scan and a normally abnormal MRI scan of my brain in the weeks before. I and my motility specialist fully expected this last test to come back normal as well.
The test, an ultrasound of the arteries that feed the gut, is done to rule out a very rare syndrome called Median Arcuate Ligament Syndrome. The disorder has symptoms very similar to gastroparesis, but unlike GP, MALS can be corrected with a simple surgery. It rarely causes symptoms which is why we fully expected the scan to be clear. The tech who performed the ultrasound had a bit of trouble seeing what he needed to, but he got the necessary images and sent me on my way.
The rest of Monday and Tuesday passed rather uneventfully aside from some email traffic with Dr. Lungs as we tried to get a handle on the cough. We agreed that I needed to see the motility specialist to get her opinion. I called to make an appointment, but the soonest available date was in July. On Wednesday when he asked, I gladly gave Dr. Lungs her information with the hope that he'd be able to get me in sooner. I worked from home that day, as has become a great strategy to help me conserve energy in the middle of the week. Around five o'clock that night the motility specialst called. She is always very to-the point when she calls and this time was no different. She had checked my chart while disscussing me with the GI fellow who'd seen me in the hospital. She was surprised to find that the results of the ultrasound I'd had were already back. She was even more surprised to find that the ultrasound had come back showing "severe" stenosis or narrowing of the celiac artery. I had Median Arcuate Ligament Syndrome! She said that she was writing an email to the surgeon who could correct the problem and wanted me to let her know how things progressed.
I was ecstatic! There was a possibility that my symptoms stemmed from MALS and not GP! I immediately started planning a comeback tour of all of my favorite restraunts, dreaming of the day when I could start enjoying food again.
Thursday during a work meeting, my cell phone kept vibrating. Twice I ignored it. When it rang the third time, I ducked out of the meeting to answer it. I was shocked to discover that the surgeon's office was calling already. They were so insistent because they could see me that day! I hastily made arrangements at work to take leave that afternoon, and set off for the appointment just a few hours later.
After making my way to the surgical clinic, checking in and waiting an absurd amount of time in the exam room, I finally met Dr. B. and his Fellow. Dr, B. is a kind yet quiet kind of guy. He quickly understood that this was far from my first time at the surgical rodeo and realized that I speak medicalese fairly well. He set about explaining the procedure I would have, even drawing a diagram of what my arteries looked like. Basically, he would go in and unwrap the nerves and other structures (like my diaphragm) that were putting pressure on the celiac artery and causing symproms. He said I would need one more scan to confirm the compression once and for all, but gave the forms to schedule the surgery anyway, as the ultrasound was definitive enough in his book. He sent me off to have pre-op labs drawn, and then to see his assistant to get on the OR schedule.
The blood draw was quick and painless. The scheduling was a little more complicated. My dad really wanted to be here for the surgery despite the fact that it would be my 10th (ish, I think I eventually called it number 12 on tge day of, who knows?) surgical experience. So there was a bit of coordination that had to happen. I left that day with a date that worked for him, pre-op instructions and some excitement tempered by the reality that the surgery would not in fact cure me of the gastroparesis. The surgeon's hope was only that I would see some symptom improvement Maybe even enough that the gastric nuerostimulator wouldn't be necessary. He said that every person he had seen who had MALS fared differently and that improvement wasn't consistent enough that he could give me any odds. He also said that the stimulator would still be an option for me if I didn't get enough relief. There was certainly a lot to consider.
By Friday morning, there were new plans to be made as the date of the surgery was moved. My dad could no longer come, but I enlisted the help of my brother and eagerly awaited the new date, June 18. What a week it had been. Monday, I went to have a scan that everyone assumed was a formality. By Friday I was scheduled for surgery. Yikes!
First I needed that confirmatory scan, an MRA. That is a Magnetic Resonance Angiogram. It's like an MRI, but it uses sensors and contrast dye to get images of the blood vessels. I had that done at the end of May and quickly heard from Dr. B. that it did confirm MALS and we were a go surgery, now just three weeks away.
Next up: Showtime!
The morning of Monday, April 23rd, I awoke and eagerly completed my morning ritual. I was excited to get back to work after eight days in the hospital. First though, I was expected at Big Academic Medical Center for yet another scan. This was the last screening I needed before the motility specialist would clear me to see the surgeon to explore surgical options for treating my gastroparesis. I had already had a four-hour emptying scan and a normally abnormal MRI scan of my brain in the weeks before. I and my motility specialist fully expected this last test to come back normal as well.
The test, an ultrasound of the arteries that feed the gut, is done to rule out a very rare syndrome called Median Arcuate Ligament Syndrome. The disorder has symptoms very similar to gastroparesis, but unlike GP, MALS can be corrected with a simple surgery. It rarely causes symptoms which is why we fully expected the scan to be clear. The tech who performed the ultrasound had a bit of trouble seeing what he needed to, but he got the necessary images and sent me on my way.
The rest of Monday and Tuesday passed rather uneventfully aside from some email traffic with Dr. Lungs as we tried to get a handle on the cough. We agreed that I needed to see the motility specialist to get her opinion. I called to make an appointment, but the soonest available date was in July. On Wednesday when he asked, I gladly gave Dr. Lungs her information with the hope that he'd be able to get me in sooner. I worked from home that day, as has become a great strategy to help me conserve energy in the middle of the week. Around five o'clock that night the motility specialst called. She is always very to-the point when she calls and this time was no different. She had checked my chart while disscussing me with the GI fellow who'd seen me in the hospital. She was surprised to find that the results of the ultrasound I'd had were already back. She was even more surprised to find that the ultrasound had come back showing "severe" stenosis or narrowing of the celiac artery. I had Median Arcuate Ligament Syndrome! She said that she was writing an email to the surgeon who could correct the problem and wanted me to let her know how things progressed.
I was ecstatic! There was a possibility that my symptoms stemmed from MALS and not GP! I immediately started planning a comeback tour of all of my favorite restraunts, dreaming of the day when I could start enjoying food again.
Thursday during a work meeting, my cell phone kept vibrating. Twice I ignored it. When it rang the third time, I ducked out of the meeting to answer it. I was shocked to discover that the surgeon's office was calling already. They were so insistent because they could see me that day! I hastily made arrangements at work to take leave that afternoon, and set off for the appointment just a few hours later.
After making my way to the surgical clinic, checking in and waiting an absurd amount of time in the exam room, I finally met Dr. B. and his Fellow. Dr, B. is a kind yet quiet kind of guy. He quickly understood that this was far from my first time at the surgical rodeo and realized that I speak medicalese fairly well. He set about explaining the procedure I would have, even drawing a diagram of what my arteries looked like. Basically, he would go in and unwrap the nerves and other structures (like my diaphragm) that were putting pressure on the celiac artery and causing symproms. He said I would need one more scan to confirm the compression once and for all, but gave the forms to schedule the surgery anyway, as the ultrasound was definitive enough in his book. He sent me off to have pre-op labs drawn, and then to see his assistant to get on the OR schedule.
The blood draw was quick and painless. The scheduling was a little more complicated. My dad really wanted to be here for the surgery despite the fact that it would be my 10th (ish, I think I eventually called it number 12 on tge day of, who knows?) surgical experience. So there was a bit of coordination that had to happen. I left that day with a date that worked for him, pre-op instructions and some excitement tempered by the reality that the surgery would not in fact cure me of the gastroparesis. The surgeon's hope was only that I would see some symptom improvement Maybe even enough that the gastric nuerostimulator wouldn't be necessary. He said that every person he had seen who had MALS fared differently and that improvement wasn't consistent enough that he could give me any odds. He also said that the stimulator would still be an option for me if I didn't get enough relief. There was certainly a lot to consider.
By Friday morning, there were new plans to be made as the date of the surgery was moved. My dad could no longer come, but I enlisted the help of my brother and eagerly awaited the new date, June 18. What a week it had been. Monday, I went to have a scan that everyone assumed was a formality. By Friday I was scheduled for surgery. Yikes!
First I needed that confirmatory scan, an MRA. That is a Magnetic Resonance Angiogram. It's like an MRI, but it uses sensors and contrast dye to get images of the blood vessels. I had that done at the end of May and quickly heard from Dr. B. that it did confirm MALS and we were a go surgery, now just three weeks away.
Next up: Showtime!
Wednesday, July 25, 2012
Hospital Days Three -Eight:In Which I Realize this Story Could Take Forever
I realized that if I didn't hurry up, I'd still be blogging my last hospital stay for a year! So, I'm going to try to do the rest of the stay in five paragraphs or less. Away we go!
Day three was Sunday. I saw Dr. Lungs early. We agreed to continue with the status quo to try to get the cough under control. He started to talk about involving the GI team to investigate the reflux that was clearly playing a role in the cough. He left me his cell number and I settled in for a long day. At lunch, I refluxed on my Ensure for hours. Eventually I asked the nurse to have the doctor make me NPO, and order a swallow study the next day. I just wanted to make sure that every thing was working as it should. The doctor quickly agreed and I was started on IV fluids.
Monday. Dr. Lungs came in and told me he was going to have GI come talk to me at some point. They came in the afternoon. After some discussion, it was decided that I'd have another edoscopy the next day, followed by more tests if necessary to find answers. Oh, and the swallow study was unclear in terms of aspiration. So, the day dragged on and that was the end of that day.
Tuesday was scope day. I was again NPO. Transport came and fetched me early and we made the trek to the GI lab. While waiting for the procedure, all of the nurses were trying to give me stuff to stop the cough. When I was brought back to the procedure room,. the anesthesiologist was very worried about me. Truthfully, I was worried about me too Before the GI put me under, I tearfully asked her not to send me home without answers. She promised they wouldn't.The scope didn't find anything aside from some mild inflamation in my esophagus. More tests would be ordered for the next day.
Wednesday morning looked a lot like Tuesday morning. I was brought back to the GI lab. A nurse came and we chatted for a minute about my symptoms while she programmed a receiver I would have with me during the test. Then the real fun started. The back of my throat was sprayed numb and a tube was placed in my nose and fed the length of my esophagus. The end of the tube had a sensor that measured the pH of the stuff in my stomach and esophagus. The receiver had buttons for me to push when I had symptoms, changed position or "ate." The most fun part of the test was that since my main symptom was/is a cough, I had to push that button about 1,000 times in the 24 hours I had the probe.
Thursday was really awful. I coughed non-stop. I was sad to learn that the magnificent Dr. Lungs' time on-call was over. I survived having the the probe taken out. Friday was a long day of waiting for discharge orders that were never written. Finally on Saturday morning the train was set in motion and I was discharged. We didn't really know what the story was. Dr. Lungs suspected reflux, but my numbers were not bad enough to concern GI. Story of my life these days!
Day three was Sunday. I saw Dr. Lungs early. We agreed to continue with the status quo to try to get the cough under control. He started to talk about involving the GI team to investigate the reflux that was clearly playing a role in the cough. He left me his cell number and I settled in for a long day. At lunch, I refluxed on my Ensure for hours. Eventually I asked the nurse to have the doctor make me NPO, and order a swallow study the next day. I just wanted to make sure that every thing was working as it should. The doctor quickly agreed and I was started on IV fluids.
Monday. Dr. Lungs came in and told me he was going to have GI come talk to me at some point. They came in the afternoon. After some discussion, it was decided that I'd have another edoscopy the next day, followed by more tests if necessary to find answers. Oh, and the swallow study was unclear in terms of aspiration. So, the day dragged on and that was the end of that day.
Tuesday was scope day. I was again NPO. Transport came and fetched me early and we made the trek to the GI lab. While waiting for the procedure, all of the nurses were trying to give me stuff to stop the cough. When I was brought back to the procedure room,. the anesthesiologist was very worried about me. Truthfully, I was worried about me too Before the GI put me under, I tearfully asked her not to send me home without answers. She promised they wouldn't.The scope didn't find anything aside from some mild inflamation in my esophagus. More tests would be ordered for the next day.
Wednesday morning looked a lot like Tuesday morning. I was brought back to the GI lab. A nurse came and we chatted for a minute about my symptoms while she programmed a receiver I would have with me during the test. Then the real fun started. The back of my throat was sprayed numb and a tube was placed in my nose and fed the length of my esophagus. The end of the tube had a sensor that measured the pH of the stuff in my stomach and esophagus. The receiver had buttons for me to push when I had symptoms, changed position or "ate." The most fun part of the test was that since my main symptom was/is a cough, I had to push that button about 1,000 times in the 24 hours I had the probe.
Thursday was really awful. I coughed non-stop. I was sad to learn that the magnificent Dr. Lungs' time on-call was over. I survived having the the probe taken out. Friday was a long day of waiting for discharge orders that were never written. Finally on Saturday morning the train was set in motion and I was discharged. We didn't really know what the story was. Dr. Lungs suspected reflux, but my numbers were not bad enough to concern GI. Story of my life these days!
Friday, June 15, 2012
Hospital Day Two: CTs and DVTs?
We are up to April 14 in the telling of this saga. It was a Saturday, which I would soon discover is actually a very good day to get things done in hospitals.
Having gotten exactly no sleep the night before, I was anxious to see Dr. Lungs. Luckily, he liked to stop by early and we soon had a plan for the day. I would get some morphine for the pain This was decided after I told him that all the milder pain meds wreck my stomach now. I'd also have a CT of my sinuses at some point.Then I settled in for the long day that was sure to await me. Breakfast came. It was some kind of Jello, and a meal replacement juice. Yummy.
Sometime after breakfast, the nurse came to give me some more drugs Zofran, steroids,and a teeny tiny amount of morphine, only one ML,not even enough to take the edge of. Oh well,I wouldn't have known if I hadn't tried.
About an hour after breakfast, and a half hour after the morphine, I got extremely nauseous. Worse than I could ever remember since the beginning of GP. It got so bad that I asked for a basin. I asked for my next Zofran really early, and swore off morphine.
Around ten o'clock, transport came to take me to CT.My nurse was there to help lift and she was very worried about how I was looking. She almost called to cancel the scan. I managed to pull myself together enough to convince her to let me go.One benefit of feeling so awful was that I hardly had the energy to care that I was precariously perched on a Scanner Table of Death. I just closed my eyes and focused on not throwing up. It worked and soon I was back in my room.
To distract myself from the mind numbing boredom, I called my dad and cough-talked to him while watching some house flipping show on TV. There are way to many of those shows on, I've decided. </p>
Sometime in the mid afternoon, I began experiencing sharp pain in my left leg. I pulled back the sheet to get a better look. Crap! It was swollen and red looking. Those are the hallmarks of a Deep Vein Thrombosis, or a blood clot in the leg. Think Greg House, and you'll understand why those are no fun.
Anyway,I had a visitor,so I tried to put the pain aside. I couldn't, though and eventually called for my tech,who called the nurse, who called the doctor. No one ever came back to tell me what the doctor said, so I figured that he was either totally unconcerned or had ordered more tests. Supposition two was the correct.one. About twenty minutes after I had set the train in motion, transport was back. This time I'd have an ultrasound of my legs.
The journey to get to ultrasound was an Odyssey through the bowels of the hospital, up and down hallways and elevators until we got to the brightly painted pediatric Emergency Room where the scan would be done. The scan itself consisted of the tech spreading icy gel down the length of my legs, using a transducer as she went to ferret out any hidden clots. After what seemed like forever, she was done, and. I was taken back to get my nightly meds and try not to freak out that I might have a clot.
At midnight, my nurse came in to tell me that the doctor had called to let me know that the scan was clean. Hooray for living to fight another day!
Having gotten exactly no sleep the night before, I was anxious to see Dr. Lungs. Luckily, he liked to stop by early and we soon had a plan for the day. I would get some morphine for the pain This was decided after I told him that all the milder pain meds wreck my stomach now. I'd also have a CT of my sinuses at some point.Then I settled in for the long day that was sure to await me. Breakfast came. It was some kind of Jello, and a meal replacement juice. Yummy.
Sometime after breakfast, the nurse came to give me some more drugs Zofran, steroids,and a teeny tiny amount of morphine, only one ML,not even enough to take the edge of. Oh well,I wouldn't have known if I hadn't tried.
About an hour after breakfast, and a half hour after the morphine, I got extremely nauseous. Worse than I could ever remember since the beginning of GP. It got so bad that I asked for a basin. I asked for my next Zofran really early, and swore off morphine.
Around ten o'clock, transport came to take me to CT.My nurse was there to help lift and she was very worried about how I was looking. She almost called to cancel the scan. I managed to pull myself together enough to convince her to let me go.One benefit of feeling so awful was that I hardly had the energy to care that I was precariously perched on a Scanner Table of Death. I just closed my eyes and focused on not throwing up. It worked and soon I was back in my room.
To distract myself from the mind numbing boredom, I called my dad and cough-talked to him while watching some house flipping show on TV. There are way to many of those shows on, I've decided. </p>
Sometime in the mid afternoon, I began experiencing sharp pain in my left leg. I pulled back the sheet to get a better look. Crap! It was swollen and red looking. Those are the hallmarks of a Deep Vein Thrombosis, or a blood clot in the leg. Think Greg House, and you'll understand why those are no fun.
Anyway,I had a visitor,so I tried to put the pain aside. I couldn't, though and eventually called for my tech,who called the nurse, who called the doctor. No one ever came back to tell me what the doctor said, so I figured that he was either totally unconcerned or had ordered more tests. Supposition two was the correct.one. About twenty minutes after I had set the train in motion, transport was back. This time I'd have an ultrasound of my legs.
The journey to get to ultrasound was an Odyssey through the bowels of the hospital, up and down hallways and elevators until we got to the brightly painted pediatric Emergency Room where the scan would be done. The scan itself consisted of the tech spreading icy gel down the length of my legs, using a transducer as she went to ferret out any hidden clots. After what seemed like forever, she was done, and. I was taken back to get my nightly meds and try not to freak out that I might have a clot.
At midnight, my nurse came in to tell me that the doctor had called to let me know that the scan was clean. Hooray for living to fight another day!
Sunday, June 3, 2012
Catching Up: Hospital Day One::APU
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 weeks, I'll be catching you up. In our time machine, it is now April 13.
On the morning of Friday the 13th, I woke at 7:00 got ready, made sure my bag was packed, that all my electronic gadgets had a charge, and waited. I needed to wait for the hospital to call with a bed assignment, and I needed to wait for the cab I had arranged the night before to pick me up . I figured the cab would either get me to the hospital way before they were ready for me, or that the hospital would need to hold the bed for me until I got there. The second scenario ended up being correct. The hospital called around 9:00 and said they were ready for me. The charge nurse started to tell me to stop at registration, but when she realized how truly bad off I was, she changed her mind and told me to go up to the floor instead. "You'll be in room 412 of the Acute Pulmonary Unit. It sounds like you need to be with us. Let me give you my number in case you need anything while on your way."
Wow, Acute Pulmonary Unit, scary stuff. I knew somewhere in my frazzled brain that my doctor was the assistant director of the unit. It made perfect logical sense that that would be where I'd be admitted. Still, the word acute set off tiny alarm bells in my head. I still needed the cab to come. Finally it did. Twenty minutes and twenty-five dollars later, I was at the hospital. I struggled through the front sliding doors, balancing my overnight bag on my knees, my messenger bag around my neck and still managing not to drive my chair into a wall! Eventually, someone relieved me of the overnight bag and we got into the elevator. After what seemed forever, the doors opened on the fourth floor. My rescuer led me down a short hallway and through a set of double doors. This was APU.
Set up like many hospital units I've been on, it had a central nurses' station and hallways that spoked out from there. My room was at the end of a spoke, pretty far away from the nurses' station. This would prove to be both a blessing and a curse. A blessing because in theory, it would be quieter. A curse because conceivably it could take longer to get help when I needed it. . Once I got changed, in a bed, asked for the same information three times. (No, I'm not hard of hearing, I promise!) the tech finally came to put in my IV. This was a crucial step in getting better. since the reason I was there (ostensibly) was to get IV steroids. Notice I said ostensibly, that will prove important later in this saga.The tech found a decent vein pretty quickly. Unfortunately, the vein was in the crook of my right elbow. Essentially, this made my only good arm and hand useless, since I was at very high risk of losing the access if I moved, talked, even breathed wrong. After a couple of hours I asked to have the line moved to my other already useless hand. Everyone thought I was nuts. Who asks for a needle stick? But you do what you have to do.
Dr. Lungs stopped by to give me a rundown of his treatment plan. I'd have a chest x-ray and labs, both to check for sneaky pockets of infection. I'd get nebulizer treatments and IV steroids for the asthma. He and I decided that we'd hold off on injections of blood thinner for the time being. He said he would order a CT of my sinuses for the next day once I felt a little better.He told me to call if I needed anything.and left me his cell number.
Soon the X-ray tech came, shoved a film behind my back and took his pictures. A tech came and drew blood off my IV line, and I acquainted myself with the TV lineup while checking in online thanks to the Internet capabilities of my e-reader. I received the first dose of steroids through my IV, as well as IV Zofran. Around shift change, the nurse also hung a bag of a strong antibiotic called Levaquin, Dr. Lungs apparently holding on to the idea that this was a very quiet infection.
I tried to settle down for the night around 9:00. I'd had my last round of meds, vitals, and had talked to both parents and was exhausted. I found a show on TV worthy of falling asleep to, lowered the bed to a flatter angle and turned out the sun-bright overhead light. I rolled over and tried to sleep. An hour later, I noticed a weird pain in the ribs along my left side. It was a sharp burning pain. I tried to take the pressure off that side by shifting position. It didn't work. In fact the pain grew worse. Every breath sent a hot knife of pain into my chest. What did I do? Why, I ignored it of course. I like my doctor and didn't want to bug him. I know, he was on call, that's what he was there for. By the time the nurse came to give me my midnight Zofran, I decided to ask for help. She was frustrated that I'd waited so long, but moved quickly to help me. She brought me a wet-heat compress that she lay over my ribs, helped prop me off of that side with pillows, and then paged the doctor.She paged him several times before I realized he wouldn't answer and I would need to ride it out until morning.
There is never any good TV on past midnight. That, coupled with the pain, made for a very long night. Thankfully, morning comes early in hospitals.
On the morning of Friday the 13th, I woke at 7:00 got ready, made sure my bag was packed, that all my electronic gadgets had a charge, and waited. I needed to wait for the hospital to call with a bed assignment, and I needed to wait for the cab I had arranged the night before to pick me up . I figured the cab would either get me to the hospital way before they were ready for me, or that the hospital would need to hold the bed for me until I got there. The second scenario ended up being correct. The hospital called around 9:00 and said they were ready for me. The charge nurse started to tell me to stop at registration, but when she realized how truly bad off I was, she changed her mind and told me to go up to the floor instead. "You'll be in room 412 of the Acute Pulmonary Unit. It sounds like you need to be with us. Let me give you my number in case you need anything while on your way."
Wow, Acute Pulmonary Unit, scary stuff. I knew somewhere in my frazzled brain that my doctor was the assistant director of the unit. It made perfect logical sense that that would be where I'd be admitted. Still, the word acute set off tiny alarm bells in my head. I still needed the cab to come. Finally it did. Twenty minutes and twenty-five dollars later, I was at the hospital. I struggled through the front sliding doors, balancing my overnight bag on my knees, my messenger bag around my neck and still managing not to drive my chair into a wall! Eventually, someone relieved me of the overnight bag and we got into the elevator. After what seemed forever, the doors opened on the fourth floor. My rescuer led me down a short hallway and through a set of double doors. This was APU.
Set up like many hospital units I've been on, it had a central nurses' station and hallways that spoked out from there. My room was at the end of a spoke, pretty far away from the nurses' station. This would prove to be both a blessing and a curse. A blessing because in theory, it would be quieter. A curse because conceivably it could take longer to get help when I needed it. . Once I got changed, in a bed, asked for the same information three times. (No, I'm not hard of hearing, I promise!) the tech finally came to put in my IV. This was a crucial step in getting better. since the reason I was there (ostensibly) was to get IV steroids. Notice I said ostensibly, that will prove important later in this saga.The tech found a decent vein pretty quickly. Unfortunately, the vein was in the crook of my right elbow. Essentially, this made my only good arm and hand useless, since I was at very high risk of losing the access if I moved, talked, even breathed wrong. After a couple of hours I asked to have the line moved to my other already useless hand. Everyone thought I was nuts. Who asks for a needle stick? But you do what you have to do.
Dr. Lungs stopped by to give me a rundown of his treatment plan. I'd have a chest x-ray and labs, both to check for sneaky pockets of infection. I'd get nebulizer treatments and IV steroids for the asthma. He and I decided that we'd hold off on injections of blood thinner for the time being. He said he would order a CT of my sinuses for the next day once I felt a little better.He told me to call if I needed anything.and left me his cell number.
Soon the X-ray tech came, shoved a film behind my back and took his pictures. A tech came and drew blood off my IV line, and I acquainted myself with the TV lineup while checking in online thanks to the Internet capabilities of my e-reader. I received the first dose of steroids through my IV, as well as IV Zofran. Around shift change, the nurse also hung a bag of a strong antibiotic called Levaquin, Dr. Lungs apparently holding on to the idea that this was a very quiet infection.
I tried to settle down for the night around 9:00. I'd had my last round of meds, vitals, and had talked to both parents and was exhausted. I found a show on TV worthy of falling asleep to, lowered the bed to a flatter angle and turned out the sun-bright overhead light. I rolled over and tried to sleep. An hour later, I noticed a weird pain in the ribs along my left side. It was a sharp burning pain. I tried to take the pressure off that side by shifting position. It didn't work. In fact the pain grew worse. Every breath sent a hot knife of pain into my chest. What did I do? Why, I ignored it of course. I like my doctor and didn't want to bug him. I know, he was on call, that's what he was there for. By the time the nurse came to give me my midnight Zofran, I decided to ask for help. She was frustrated that I'd waited so long, but moved quickly to help me. She brought me a wet-heat compress that she lay over my ribs, helped prop me off of that side with pillows, and then paged the doctor.She paged him several times before I realized he wouldn't answer and I would need to ride it out until morning.
There is never any good TV on past midnight. That, coupled with the pain, made for a very long night. Thankfully, morning comes early in hospitals.
Wednesday, May 30, 2012
Catching Up: Weird Illness Chronicles
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,
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 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...
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