About a year ago, after my first emptying scan but before my diagnosis, I joined a support group for those with gastroparesis. I was initally petrified to think that some of those stories could be in my future. Feeding tubes, TPN, central lines, gastric pacemakers. This is the world I would be living in. It was all kind of fascinating in sort of an anthropological sense. I was intrigued to see how some of the people who seemed so desperately ill could find ways to live full lives. There werre many young women who were in college. Many others who worked at least part-time. I began to see how I could find my new normal amid the insanity that is gastroparesis. My view of the disease was two pronged. People were either pretty sick but lived full lives anyways or they were trapped by the illness in their homes doctor's offices or at worst in hospital rooms. The idea of dying from gastroparesis never crossed my mind. How naive I was.
Six months ago I saw a post on the support group announcing the passing of a young man due to gastroparesis. I was saddned by the news in the way that I think most of us are. Every death is tragic, especially when it happens too young. I will admit that news of that first death didn't resonate much with me. Not in the way that others have since, and there have been many. At least 10 that we know of. There have been six in the last two weeks alone.
Each announcement makes me feel a little more vulnerable. I still am relatively healthy in relation to some of my friends. Yes, I have a stimulator now, and it isn't working as well as I had hoped. I am writing this in part to distract myself from the pain from my dinner of a bit of soup and saltines. With each annoucement, I lose a little of that anthropological distance with which I began this journey, and I start to think that it could be me. Not next, not even soon, just someday. Someday tthis insane disease could in fact kill me. That is a bizzare thing to even begin to contemplate.
I try to find some comfort in the fact that no one has ever mentioned more drastic measures like TPN or tubes to me. I know logically that just because I have the stimulatorthat doesn't take the more agressive interventions off my horizon. I can tell my self it won't be me all I want. I never imagined my life would be ruled by such an insidious disease, either.
Sunday, October 21, 2012
Thursday, October 4, 2012
In Which I Become a Cyborg Part One: Getting There
Again I've been seriously lax in updating. Once you read this post I think you'll forgive me. When last I wrote I was fresh out of surgery to fix a rare syndrome. My surgeon wanted me to call his office when we'd reached eight weeks out from that surgery, at which point we'd move on to other surgical options if need be. I am very goal oriented so I went so far as to put a calender entry on my phone for August 16 that read "Call Dr. B." It wasn't that I had no hope that this surgery was going to help. It's because I am a realist. This realism extended to my telling my boss that I would most likely be out for more surgery in the near future.
I struggled through July. Zofran was officially useless to me. I lived off of Jello and juices. My cough was ever-present and bad enough that I was resorting to my nebulizer at least twice a week. I was slowly losing patience , and hope.
As soon as August rolled around, I could see the light at the end of the tunnel. I only needed to hold on a little while longer, then we could make a plan. That optimism lasted about a week. After a morning of such intense cough that I was afraid I'd crack a rib, I gave in and called Dr. B's office. I was so desperate for answers that I also emailed Dr. Lungs and called my GI and left a message. Dr. B. called back himself later that day. He agreed that we should move forward with the gastric nuerostimulator,, We weren't sure how long it'd would take to get insurance approval for the device, but at least we were moving forward. I made it through the day at work and was on my way home when the phone rang. It was my GI. After a long conversation, it was decided that I should see an ENT next. Alright then.
A little over a week later as I was leaving my first ENT appointment, I saw the voicemail icon flash on my phone. It was Dr.B's assistant. I frantically called her back. She told me that my primary insurance had approved me for the stimulator! I could tell by the way she said it that there was a catch. Sure enough, my secondary insurance had declined to fund the device. What had started as such a positive conversation had quickly turned into a near-nightmare scenario. I knew that I needed the device. I also knew that it wasn't going to be easy to afford the 20 per cent that would be my share of the device. Since I was nearby, I ran over to the surgeon's office where they had the diagnostic codes for the device ready for me. In the lobby, I called my insurance company. Here's a tip: crying gets you nowhere fast with insurance companies. Especially this insurance company. They confirmed that they did not in fact cover the device, even when primary insurers did. Fantastic.
After a minor freak out during which I was certain that I would never get the stimulator, I made a plan. I would call the manufacturer and ask them how mush the device cost. Then if all else failed I would call the hospital. The next day, I called the manufacturer and the hospital. Neither entity could tell me anything useful. The manufacterer because the price they charged hospitals wasn't the final price I'd see because of markups by the hospital. The hospital seemed utterly deserted since I couldn't seem to get out of Voice Mail Purgatory the day I called. This was a Friday. Over the weekend I made the decision to schedule surgery on Monday. The rest would work itself out.
So on Monday I scheduled surgery with Dr. B.'s office for September 24. That was just over six weeks away and two days before my twenty-seventh birthday. Yes, that would mean my birthday might not be the most fun day, but I could think of no greater gift I could give myself than the possibility of feeling even halfway normal. I told my bosses the plan, my mom booked tickets to fly down to be there with me and I tried to temper my excitement. It was more difficult than it may seem. Every story I heard or read about someone with a stimulator, it seemed to be the key to turning lives around. Soon that could be me.
I struggled through July. Zofran was officially useless to me. I lived off of Jello and juices. My cough was ever-present and bad enough that I was resorting to my nebulizer at least twice a week. I was slowly losing patience , and hope.
As soon as August rolled around, I could see the light at the end of the tunnel. I only needed to hold on a little while longer, then we could make a plan. That optimism lasted about a week. After a morning of such intense cough that I was afraid I'd crack a rib, I gave in and called Dr. B's office. I was so desperate for answers that I also emailed Dr. Lungs and called my GI and left a message. Dr. B. called back himself later that day. He agreed that we should move forward with the gastric nuerostimulator,, We weren't sure how long it'd would take to get insurance approval for the device, but at least we were moving forward. I made it through the day at work and was on my way home when the phone rang. It was my GI. After a long conversation, it was decided that I should see an ENT next. Alright then.
A little over a week later as I was leaving my first ENT appointment, I saw the voicemail icon flash on my phone. It was Dr.B's assistant. I frantically called her back. She told me that my primary insurance had approved me for the stimulator! I could tell by the way she said it that there was a catch. Sure enough, my secondary insurance had declined to fund the device. What had started as such a positive conversation had quickly turned into a near-nightmare scenario. I knew that I needed the device. I also knew that it wasn't going to be easy to afford the 20 per cent that would be my share of the device. Since I was nearby, I ran over to the surgeon's office where they had the diagnostic codes for the device ready for me. In the lobby, I called my insurance company. Here's a tip: crying gets you nowhere fast with insurance companies. Especially this insurance company. They confirmed that they did not in fact cover the device, even when primary insurers did. Fantastic.
After a minor freak out during which I was certain that I would never get the stimulator, I made a plan. I would call the manufacturer and ask them how mush the device cost. Then if all else failed I would call the hospital. The next day, I called the manufacturer and the hospital. Neither entity could tell me anything useful. The manufacterer because the price they charged hospitals wasn't the final price I'd see because of markups by the hospital. The hospital seemed utterly deserted since I couldn't seem to get out of Voice Mail Purgatory the day I called. This was a Friday. Over the weekend I made the decision to schedule surgery on Monday. The rest would work itself out.
So on Monday I scheduled surgery with Dr. B.'s office for September 24. That was just over six weeks away and two days before my twenty-seventh birthday. Yes, that would mean my birthday might not be the most fun day, but I could think of no greater gift I could give myself than the possibility of feeling even halfway normal. I told my bosses the plan, my mom booked tickets to fly down to be there with me and I tried to temper my excitement. It was more difficult than it may seem. Every story I heard or read about someone with a stimulator, it seemed to be the key to turning lives around. Soon that could be me.
Friday, August 24, 2012
A Tale of Two Surgeries Part Two: Showtime!
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.
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.
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.
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