Well, it's Thanksgiving-eve here in the States. Thanksgiving was one of my favorite holidays growing up. We went to my grandparents every year, Thanksgiving was one thing that was cool after my parents' divorce. We got twice the turkey! What could be better than that.
My experience of Thanksgiving has changed over the last couple of years. Last year was the first year I wasn't going home for Thanksgiving. It was also my first Thanksgiving with gastroparesis, though I didn't know that for certain. I spent the day with a friend, ate, talked and laughed. Yes, the holiday is food centric, but I managed to find joy in the face of uncertainity. This year I will spend the day with that friewnd, eat, talk and laugh. Even though the uncertainity of awaiting diagnosis has been removed, parts of the road ahead are still obscured by the shadow of the unknown. That's OK though. I have so much to be grateful for.
I am grateful for recently renewed friendships. I make a habit of pushing people away, then being surprised when I find myself alone. I have been shown the value of having people in my corner and I value their friendship more than they will ever know.
I'm grateful to my work family. They support day-to-day so that I can still contribute. The friends there give me a safe place to fall apart when I need to. My supervisor couldn't be more understanding. I truly lucked out.
I am grateful to my awesome team of specialists, While sometimes it can feel like they're groping for answers right along with me, I know that by-and large, they really care and want to give me the highest quality of life possible.
I am grateful for my life. As hard as it is, as fraught with uncertanity as it is, I have a purpose. I don't quite believe that everything happens for a reason, but if anything has brought me closer to beliving that it is this last year and a half.
Yes, Thanksgiving is going to be different this year, but so am I. Just like last year, I will find joy amid the grief.
Happy Thanksgiving!
Wednesday, November 21, 2012
Friday, November 2, 2012
In Which The Other Shoe Drops and I Have "The Talk
OK, remember how I said I was taking solace in the fact that supportive measures for nutrition have never come up? Yeah, that was nice while it lasted.
Today I saw the wonderful GI who diagnosed my GP.. I hadn't seen her in nearly a year . She has kept up pretty well. though with the rest of my team. I could tell by the way she looked at me that she was shocked at the weight loss. I told her that the pacer had worked really really well for the first two weeks. In the last four though, I've lost ground. To the point that I'm back to liquids, and my best days are 700ish calorie days. I told her that, and she said,"You can't do that." Uh, OK clearly I can't anymore. I have been having more and more trouble doing simple things like transfering out of the shower. In the last two months, I have had four or five instances where it has taken me from close to hour to nearly two hours to make the move between my bath chair and my wheelchair. I get light-headed and am weak when this happens. Fun times! We're talking six inches here people, not the Grand Canyon!
After I told her that, she got really quiet for a minute and the look on her face told me she was trying to either make or articulate a difficult choice. What came next were the words I've kept buried in the back of my mind for the last 18 months. I think as my idea of what worst-case scenario could be.
"Did Dr. B. or Motility Specialist. ever talk to you about gastronomy tubes?" (This will always and forever be known as a g-tube.)
"No."
"I think that might be your next step." She proceeded to explain what I knew. A g-tube is a surgically placed tube that would allow a nutritonally complete formula to be fed directly into my stomach. I think there should be a "j" component where the feed goes to the small intestine, skipping the stomach entirely. She said it would be used at night mainly if we go ahead. She was hopeful that supplementing my nutrition this way would help improve my strength and help me begin to move forward. In the meantime, we made some changes medication changes to see if that helps.
So, my worst case scenario is moving closer day-by day. There are definte pros and cons, but they are too many to relate.
Here goes nothing... She is going to get with Dr. B. and make a plan.As long as I feel better, I'd go to a shaman.
Today I saw the wonderful GI who diagnosed my GP.. I hadn't seen her in nearly a year . She has kept up pretty well. though with the rest of my team. I could tell by the way she looked at me that she was shocked at the weight loss. I told her that the pacer had worked really really well for the first two weeks. In the last four though, I've lost ground. To the point that I'm back to liquids, and my best days are 700ish calorie days. I told her that, and she said,"You can't do that." Uh, OK clearly I can't anymore. I have been having more and more trouble doing simple things like transfering out of the shower. In the last two months, I have had four or five instances where it has taken me from close to hour to nearly two hours to make the move between my bath chair and my wheelchair. I get light-headed and am weak when this happens. Fun times! We're talking six inches here people, not the Grand Canyon!
After I told her that, she got really quiet for a minute and the look on her face told me she was trying to either make or articulate a difficult choice. What came next were the words I've kept buried in the back of my mind for the last 18 months. I think as my idea of what worst-case scenario could be.
"Did Dr. B. or Motility Specialist. ever talk to you about gastronomy tubes?" (This will always and forever be known as a g-tube.)
"No."
"I think that might be your next step." She proceeded to explain what I knew. A g-tube is a surgically placed tube that would allow a nutritonally complete formula to be fed directly into my stomach. I think there should be a "j" component where the feed goes to the small intestine, skipping the stomach entirely. She said it would be used at night mainly if we go ahead. She was hopeful that supplementing my nutrition this way would help improve my strength and help me begin to move forward. In the meantime, we made some changes medication changes to see if that helps.
So, my worst case scenario is moving closer day-by day. There are definte pros and cons, but they are too many to relate.
Here goes nothing... She is going to get with Dr. B. and make a plan.As long as I feel better, I'd go to a shaman.
Sunday, October 28, 2012
In Which I Become a Cyborg Part Two: Surgery
I am ready to continue the story of my experience having a gastric nuerostimulator. placed. My mom and I took a cab to Big Academic Medical Center bright and early on the morning of September 24. We got there way ahead of my scheduled arrival time of 7:30, so stopped off in the cafeteria so Mom could grab a cofee. Then we made our way to the surgical waiting room where we installed ourselves in a corner to watch shows on her laptop until it was time to check in. Eventually I was called to register, then we waited a bit longer and were brought to pre-op with several other patients.Mom helped me change into a gown, we transferred me to a gurney, an IV was placed, then we just waited.
Once the IV was placed, Mom mentioned that she had seen on the cover of my chart that they were calling the procedure day surgery. She asked how I would feel about going home right afjter surgery. I was hesitant, but knew that I'd be in good hands with my mom. Soon, Dr. B. came by to look at my chart. While he flipped pages, I asked where he planned to place the external part of the stimulator.
The system has two parts, the generator which is placed right under the skin of the abdomen generally on the left side, since that's where the stomach lives. The second part is the leads that are implanted into the wall of the stomach. The device is used as a treatment for the nausea and vomiting associated with gastroparesis that doesn't respond well invasive therapies like medications. It works by sending counter signals to the nerves of the stomach that would otherwise tell my brain I was nauseated. For some, it's the best tool they've found to help manage symptoms.
Dr. B. told me that he'd place it on the left side. He also told me that he hoped I would be willing to complete a questionaire about my symptoms before and after the surgery for MALS. He is doing a study of who are really good candidates for surgical correction of that syndrome. There was pre-op questionare and a post-op questionarre. Since nothing really had improved from before the surgery, it was easy to fill them both out after the fact. As unique as I am, I've never been part of a study. I'm weirdly excited about that.
Soon after Dr. B.left, the most attractive anesthesiologist I have ever seen came in. Seriously, he was so handsome. Awesome eyes, a beard that fit his face perfectly. He was just very fun to look at. He was impressed by my knowledge of myself. He gave me the awful ant-reflux junk. I told him about my history with Scanner/ OR Tables of Death. That would turn out to be the most important thing I told him. I said goodbye to Mom and don't remember anything until the recovery room. He must have given me something really good. After about three hours, the surgery was over and I woke up in recovery.
The thing I remember most about recovery was the pain. It huirt a lot more than I thought it would, especially in the area where the generator was implanted. In retrospect, they created a pocket where pockets do not naturally exsist, it was bound to hurt. It was also where the largest incision was. I was so glad to have my old friend morphine to keep me company! Afteer only an hour ore so in recovery, I was moved to a room. I got to bring along some oxygen this time as my lungs were trying to go on strike and my saturations were dropping a little.
Once I was in a room, I began the Wait for Pee. I wasn't going to write about this part, but figured it would be good for others to know. General anesthesia paralyzes all the muscles, including the bladder. That's why you'll often have a foley catheter placed during surgery. I discovered in June that my bladder is particularly suseptible to freezing up after having a foley in and then taken out. I ended up being sent home with a foley in place in June because my bladder just wouldn't cooperate. Anyway, this time around I didn't have a foley because I was already at risk of infection because I was having something implanted. It was up to me to break through and go on my own. This proved difficult and involved literally hours of trying. I tried different positions, while drinking, even got out of bed to try on a commode. After hours of trying without success, I let the nurse take care of things for me just so they'd leave me alone. After that and my nightime meds, we sertled down for the night. It was a restless night. I had realized the morphine was making my nausea worse, so I wasn't using it and was in a lot of pain. Morning rounds found me in a lot of pain still but eager to go home for my birthday the next day. I convinced them to let me go. I was still in significant pain, but not as nauseated and was now peeing just fine.
Before I left, I had my mom get me a bagel from the cafeteria. I took a bite and almost cried for the joy of it. It was the first taste of food I'd had in over a year that actually tasted good. I ate about a quarter of it then was full. I was ecstatic. Maybe, just maybe this was the answer I'd been hoping for.
Once the IV was placed, Mom mentioned that she had seen on the cover of my chart that they were calling the procedure day surgery. She asked how I would feel about going home right afjter surgery. I was hesitant, but knew that I'd be in good hands with my mom. Soon, Dr. B. came by to look at my chart. While he flipped pages, I asked where he planned to place the external part of the stimulator.
The system has two parts, the generator which is placed right under the skin of the abdomen generally on the left side, since that's where the stomach lives. The second part is the leads that are implanted into the wall of the stomach. The device is used as a treatment for the nausea and vomiting associated with gastroparesis that doesn't respond well invasive therapies like medications. It works by sending counter signals to the nerves of the stomach that would otherwise tell my brain I was nauseated. For some, it's the best tool they've found to help manage symptoms.
Dr. B. told me that he'd place it on the left side. He also told me that he hoped I would be willing to complete a questionaire about my symptoms before and after the surgery for MALS. He is doing a study of who are really good candidates for surgical correction of that syndrome. There was pre-op questionare and a post-op questionarre. Since nothing really had improved from before the surgery, it was easy to fill them both out after the fact. As unique as I am, I've never been part of a study. I'm weirdly excited about that.
Soon after Dr. B.left, the most attractive anesthesiologist I have ever seen came in. Seriously, he was so handsome. Awesome eyes, a beard that fit his face perfectly. He was just very fun to look at. He was impressed by my knowledge of myself. He gave me the awful ant-reflux junk. I told him about my history with Scanner/ OR Tables of Death. That would turn out to be the most important thing I told him. I said goodbye to Mom and don't remember anything until the recovery room. He must have given me something really good. After about three hours, the surgery was over and I woke up in recovery.
The thing I remember most about recovery was the pain. It huirt a lot more than I thought it would, especially in the area where the generator was implanted. In retrospect, they created a pocket where pockets do not naturally exsist, it was bound to hurt. It was also where the largest incision was. I was so glad to have my old friend morphine to keep me company! Afteer only an hour ore so in recovery, I was moved to a room. I got to bring along some oxygen this time as my lungs were trying to go on strike and my saturations were dropping a little.
Once I was in a room, I began the Wait for Pee. I wasn't going to write about this part, but figured it would be good for others to know. General anesthesia paralyzes all the muscles, including the bladder. That's why you'll often have a foley catheter placed during surgery. I discovered in June that my bladder is particularly suseptible to freezing up after having a foley in and then taken out. I ended up being sent home with a foley in place in June because my bladder just wouldn't cooperate. Anyway, this time around I didn't have a foley because I was already at risk of infection because I was having something implanted. It was up to me to break through and go on my own. This proved difficult and involved literally hours of trying. I tried different positions, while drinking, even got out of bed to try on a commode. After hours of trying without success, I let the nurse take care of things for me just so they'd leave me alone. After that and my nightime meds, we sertled down for the night. It was a restless night. I had realized the morphine was making my nausea worse, so I wasn't using it and was in a lot of pain. Morning rounds found me in a lot of pain still but eager to go home for my birthday the next day. I convinced them to let me go. I was still in significant pain, but not as nauseated and was now peeing just fine.
Before I left, I had my mom get me a bagel from the cafeteria. I took a bite and almost cried for the joy of it. It was the first taste of food I'd had in over a year that actually tasted good. I ate about a quarter of it then was full. I was ecstatic. Maybe, just maybe this was the answer I'd been hoping for.
Sunday, October 21, 2012
Scared....
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.
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.
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!
Subscribe to:
Posts (Atom)