Lilyofthevalley
Revived & Revitalized
(If long stories are not your thing read the last two paragraphs and please take it to heart)
It all began on January 29, 2014. I entered my local hospital same-day surgery center to have a simple hernia repair and gallbladder removal. I was planning to stay overnight because it was a large hernia and I had been having gallbladder problems since October.
The surgery went fine albeit a little long since the hernia was quite large and it took a while to get the mesh in place. Gallbladder part of the surgery went very well. My gallbladder, although full of sludge on the inside, looked pretty good from the outside with no visible leaks or breaks.
I stayed in the hospital for two nights. That whole time I was in a lot of pain. I had difficulty getting any food in at all. I was on IV for hydration most of the time. I wasn't able to drink very much at a time. I was surprised on the evening of the second day when the nurse came in to discontinue the IV. She told me since I was able to "drink" The doctor felt I no longer needed it. I explained that I wasn't really "drinking." I was barely sipping and because of my DS, hydration was crucial. Too bad!
I knew my body was not in a good place. The next morning I asked my surgeon if I could stay one more day. I told her my concerns about hydration and my concerns that I was having an unusual struggle with pain. She explained that the insurance wouldn't pay for me to stay another day since I was eating and going to the bathroom just fine.
I was confused. I was barely urinating and I wasn't eating anything by the end of the second day. I wasn't sure where she was getting her information. However, home I went. I had a very difficult weekend. I just existed on Jell-O and what little liquids I could get down the first two days. I couldn't eat anything solid until Sunday night and I had some eggs Monday.
On Sunday morning I had noticed that my right side was very bloated and extended under my arm so that I could not drop my arm straight down. On Monday I called the surgeon to tell her this and she wanted to see me. I called a neighbor to take me in.
As I was getting ready I started to sweat profusely and then I started to have incredible pain in my stomach and back. The pain became more intense and I started to see in white. It was like everything was white washed in bright white light. The pain was over whelming. My friend was doing her best to get me to the surgeon’s clinic which is about 25 minutes from my home. I was crying and moaning and screaming from time to time. It was horrific. A few miles from the clinic I said, “Take me to the hospital.”
To be honest I am not sure what happened for a few hours after that. I remember telling them over and over again my name and birthdate, the meds I was taking, and the surgery I had just had. They put in a pic line and gave me fluids. . I talked to some silly doctor who never examined me, but who for some reason decided that all of my distress was caused by my “straining to poop.” Huh? When had that happened and how did he know? He told me the massive swelling was “normal.” Really? I was stabilized and admitted.
Later that evening my surgeon came to see me. She agreed that the swelling was “not normal” and said she wanted to do a HIDA scan. She did agree however, with the whole straining to poop thing. She thought I was dealing with two separate problems.
That night around 2:00 am I was wheeled down stairs for this procedure. I was groggy and tired and slept through the whole thing. I had a fairly uneventful night. They were giving me stool softeners and some intravenous pain meds. When I woke up I had my first bm in seven days. It was not my normal “soft and fluffy” but it was not difficult.
At 5:30 that morning the nurses came in and took my water and told me I could have nothing by mouth and that my Dr would be in soon to explain. I immediately assumed I was headed for some sort of surgery. I was right. Seems I had a bile duct leak and had to have tubes inserted. The Surgeon was very upset that she had missed a leak. There had been no indicators for one.
At noon I had the procedure. It was very uncomfortable and stressful. I was awake and half in and have out of the cat scan machine. They also used ultra sound. It was painful and took a lot longer than they had hoped. The doctor who did the procedure explained that if he wasn’t able to cap the leak and insert a tube I would have to have open surgery which would be dangerous because of infection which I already had some of. It took 45 minutes to locate the leak and another 40 minutes to get the tube in.
When they finally got it in I had some immediate relief. The thing drained like crazy. Three bags were filled before I left the procedure room and the first hour in my room two more full bags were emptied. I am not sure how much they held. The pain was lessened and I rested well most of the day. I still could hardly swallow anything solid or get much liquid in.
That night my hubby brought in a movie and we watched it together. I was having a lot of pain in my back and stomach but the tube was draining nicely so I was hopeful. My husband left around 1:00 am. I fell asleep after receiving my pain meds, antibiotic, and stool softners.
Suddenly I am jolted wide awake about 2:30. The pain is over whelming. I am sweating, the lights are flashing, I fill like I am going to wet myself, and the room is spinning. I call for help but no one comes so I stand and stager to the bathroom with my IV pole. I manage to get onto the toilet and urinate but the pain is so bad I am sure I am going to pass out. The nurse finally came in. Immediately she assumes I have been straining to poop. I tell her no I was not. It was pain, it started with pain. Hear me please!
This episode is worse than the one on Monday. They call it vasovagal response. They work with me for two hours. There are multiple people in the room. My blood pressure is dangerously low. They perform an EKG, and other tests I can’t even name. People were in and out. Finally the nursing supervisor hospital admin comes in. Her name is Michelle and she is a hoot.
I am breathing deeply, trying to relax and ride out the pain. They will not wash my hot face or cover my freezing feet. They tell me later they want me to be uncomfortable so I won’t pass out. If I pass out they would have more trouble stabilizing my blood pressure and heart rate. It was a nightmare. At one point I asked if I was dying and the nurse told me that if I was I needed to stop it. I asked if I was “crashing” like on tv shows? Michelle answered that if I were they would have out those paddles yelling, “Clear! Clear!” Even I laughed. I felt like I was in a bad medical comedy scene.
At some point my blood pressure started to rise. I wasn’t having a stroke, a heart attack, kidney failure or a baby. It was a” vasovagal response” because I was straining to poop. Only problem with that conclusion? I WAS NOT STRAINING TO FREAKING POOP! I WASN’T EVEN ON THE TOILET WHEN IT STARTED! I fell asleep and slept and cried alternately most of the day.
During all this time I was reaching out to Larra, Diana, & other DS’ers. They were so supportive and kept encouraging me to stand up for myself. I continued to insist that the pain came before the “reaction” and that most of the time there was no “strain.” The Doctor had ordered the staff to stop giving me fluids by midnight, so I was really trying to get a lot of liquids down that day. I drank water, soups, flavored drinks, protein shakes, and ate mounds of gelatin.
My husband came in with another movie that night. We were eating dinner together when suddenly the pain started up again. This time I was ready for it. By staying calm I staved off the "shock" reaction or vasovagal response my body had thrust into hours before. Finding the strength to stay calm and relax as much as possible definitely helped me through it.
The house supervisor Michelle, came on the floor to help them "catch up" and when she saw my name on the list she took me because she had been there in the morning for my last episode. When I explained about the fluids, and other of my DS needs she listened. I was concerned that I was not eating and drinking enough and that the tube had stopped draining now and I was swelling again. First she wiped the pain, by giving me drugs to get my muscles to relax. She then supported me in explaining to my nurse that my liquid intake was not adequate to warrant taking me off IV so they left it in. She also made some other suggestions.
I finally fell asleep after 4:00 am. When I woke up it was after 7:00 am. For the first time since I had been readmitted my assigned nurse came in and talked to me about what was happening. I was able to tell her that all three episodes started with the pain which started before any kind of strain or thoughts of letting gas, or pooping. I had actually had some bm that night with no VVR or pain.
Finally someone listened to me. The pain IS coming first. I may have made a mistake about how I try to relieve it and that brought on the vagal response. I didn't do any straining or anything ex strenuous to fight it last night, so I didn't get the total vagal. I just had the terrible pain and I fought it successfully. She told me she's was going to talk to the doctor. I couldn’t go home until they figured out what the pain is and how to control it. Music to my ears.
Michelle came back Thursday night and started trouble shooting with me. Two episodes had happened while I was eating or right after. However, I also had eaten successfully and had no episodes. I often had overwhelming need to urinate before an episode, but I often felt that way and had no episode. Just before I started getting dressed on Monday I had taken my Percocet for pain. Wednesday morning I had been awakened for vitals and asked for and received pain pills. While I was eating Wednesday night they had brought in my pain meds and I had taken them. All day Thursday I had refused oral pain meds except for Ibuprofen. Bingo!
After checking the timelines in my records and a few blood tests and other medical exams we had an answer. It was determined that after 30 years of occasionally using this drug and even having built up a tolerance to it so that I needed higher doses to relieve pain; I had suddenly and inexplicably developed a severe allergy to it. Because there was so little food in my stomach, it was also getting involved and actually going into spasms, which is what caused the horrible back and stomach pain.
So the conclusion was that I had developed two different problems after my surgery. The Bile duct leak and the allergy/vasovagal/ shock episodes. In both cases it had taken the support of my friends and fellow DS’ers and my own refusal to accept silly illogical conclusions that finally led to factual answers.
We cannot afford to acquiesce to medical personnel just because they are supposed to know what they are doing. All diagnosis is not easy or obvious. These professionals can and do make mistakes. We know our bodies, we know what is normal for us and what is not. We are responsible to advocate for ourselves (with a little help from our friends) and to insist on the “right” answers.
WHAT I HAVE LEARNED FROM THIS
I don’t know everything but I do know a lot.
I am not stupid.
There is no such thing as a simple surgery.
If they aren’t listening repeat, repeat, repeat and then repeat some more.
Don’t let anyone tell you what “your normal” is.
Don’t let anyone force you to take meds in Sprite.
My DS friends are amazing!
Never give up!
It all began on January 29, 2014. I entered my local hospital same-day surgery center to have a simple hernia repair and gallbladder removal. I was planning to stay overnight because it was a large hernia and I had been having gallbladder problems since October.
The surgery went fine albeit a little long since the hernia was quite large and it took a while to get the mesh in place. Gallbladder part of the surgery went very well. My gallbladder, although full of sludge on the inside, looked pretty good from the outside with no visible leaks or breaks.
I stayed in the hospital for two nights. That whole time I was in a lot of pain. I had difficulty getting any food in at all. I was on IV for hydration most of the time. I wasn't able to drink very much at a time. I was surprised on the evening of the second day when the nurse came in to discontinue the IV. She told me since I was able to "drink" The doctor felt I no longer needed it. I explained that I wasn't really "drinking." I was barely sipping and because of my DS, hydration was crucial. Too bad!
I knew my body was not in a good place. The next morning I asked my surgeon if I could stay one more day. I told her my concerns about hydration and my concerns that I was having an unusual struggle with pain. She explained that the insurance wouldn't pay for me to stay another day since I was eating and going to the bathroom just fine.
I was confused. I was barely urinating and I wasn't eating anything by the end of the second day. I wasn't sure where she was getting her information. However, home I went. I had a very difficult weekend. I just existed on Jell-O and what little liquids I could get down the first two days. I couldn't eat anything solid until Sunday night and I had some eggs Monday.
On Sunday morning I had noticed that my right side was very bloated and extended under my arm so that I could not drop my arm straight down. On Monday I called the surgeon to tell her this and she wanted to see me. I called a neighbor to take me in.
As I was getting ready I started to sweat profusely and then I started to have incredible pain in my stomach and back. The pain became more intense and I started to see in white. It was like everything was white washed in bright white light. The pain was over whelming. My friend was doing her best to get me to the surgeon’s clinic which is about 25 minutes from my home. I was crying and moaning and screaming from time to time. It was horrific. A few miles from the clinic I said, “Take me to the hospital.”
To be honest I am not sure what happened for a few hours after that. I remember telling them over and over again my name and birthdate, the meds I was taking, and the surgery I had just had. They put in a pic line and gave me fluids. . I talked to some silly doctor who never examined me, but who for some reason decided that all of my distress was caused by my “straining to poop.” Huh? When had that happened and how did he know? He told me the massive swelling was “normal.” Really? I was stabilized and admitted.
Later that evening my surgeon came to see me. She agreed that the swelling was “not normal” and said she wanted to do a HIDA scan. She did agree however, with the whole straining to poop thing. She thought I was dealing with two separate problems.
That night around 2:00 am I was wheeled down stairs for this procedure. I was groggy and tired and slept through the whole thing. I had a fairly uneventful night. They were giving me stool softeners and some intravenous pain meds. When I woke up I had my first bm in seven days. It was not my normal “soft and fluffy” but it was not difficult.
At 5:30 that morning the nurses came in and took my water and told me I could have nothing by mouth and that my Dr would be in soon to explain. I immediately assumed I was headed for some sort of surgery. I was right. Seems I had a bile duct leak and had to have tubes inserted. The Surgeon was very upset that she had missed a leak. There had been no indicators for one.
At noon I had the procedure. It was very uncomfortable and stressful. I was awake and half in and have out of the cat scan machine. They also used ultra sound. It was painful and took a lot longer than they had hoped. The doctor who did the procedure explained that if he wasn’t able to cap the leak and insert a tube I would have to have open surgery which would be dangerous because of infection which I already had some of. It took 45 minutes to locate the leak and another 40 minutes to get the tube in.
When they finally got it in I had some immediate relief. The thing drained like crazy. Three bags were filled before I left the procedure room and the first hour in my room two more full bags were emptied. I am not sure how much they held. The pain was lessened and I rested well most of the day. I still could hardly swallow anything solid or get much liquid in.
That night my hubby brought in a movie and we watched it together. I was having a lot of pain in my back and stomach but the tube was draining nicely so I was hopeful. My husband left around 1:00 am. I fell asleep after receiving my pain meds, antibiotic, and stool softners.
Suddenly I am jolted wide awake about 2:30. The pain is over whelming. I am sweating, the lights are flashing, I fill like I am going to wet myself, and the room is spinning. I call for help but no one comes so I stand and stager to the bathroom with my IV pole. I manage to get onto the toilet and urinate but the pain is so bad I am sure I am going to pass out. The nurse finally came in. Immediately she assumes I have been straining to poop. I tell her no I was not. It was pain, it started with pain. Hear me please!
This episode is worse than the one on Monday. They call it vasovagal response. They work with me for two hours. There are multiple people in the room. My blood pressure is dangerously low. They perform an EKG, and other tests I can’t even name. People were in and out. Finally the nursing supervisor hospital admin comes in. Her name is Michelle and she is a hoot.
I am breathing deeply, trying to relax and ride out the pain. They will not wash my hot face or cover my freezing feet. They tell me later they want me to be uncomfortable so I won’t pass out. If I pass out they would have more trouble stabilizing my blood pressure and heart rate. It was a nightmare. At one point I asked if I was dying and the nurse told me that if I was I needed to stop it. I asked if I was “crashing” like on tv shows? Michelle answered that if I were they would have out those paddles yelling, “Clear! Clear!” Even I laughed. I felt like I was in a bad medical comedy scene.
At some point my blood pressure started to rise. I wasn’t having a stroke, a heart attack, kidney failure or a baby. It was a” vasovagal response” because I was straining to poop. Only problem with that conclusion? I WAS NOT STRAINING TO FREAKING POOP! I WASN’T EVEN ON THE TOILET WHEN IT STARTED! I fell asleep and slept and cried alternately most of the day.
During all this time I was reaching out to Larra, Diana, & other DS’ers. They were so supportive and kept encouraging me to stand up for myself. I continued to insist that the pain came before the “reaction” and that most of the time there was no “strain.” The Doctor had ordered the staff to stop giving me fluids by midnight, so I was really trying to get a lot of liquids down that day. I drank water, soups, flavored drinks, protein shakes, and ate mounds of gelatin.
My husband came in with another movie that night. We were eating dinner together when suddenly the pain started up again. This time I was ready for it. By staying calm I staved off the "shock" reaction or vasovagal response my body had thrust into hours before. Finding the strength to stay calm and relax as much as possible definitely helped me through it.
The house supervisor Michelle, came on the floor to help them "catch up" and when she saw my name on the list she took me because she had been there in the morning for my last episode. When I explained about the fluids, and other of my DS needs she listened. I was concerned that I was not eating and drinking enough and that the tube had stopped draining now and I was swelling again. First she wiped the pain, by giving me drugs to get my muscles to relax. She then supported me in explaining to my nurse that my liquid intake was not adequate to warrant taking me off IV so they left it in. She also made some other suggestions.
I finally fell asleep after 4:00 am. When I woke up it was after 7:00 am. For the first time since I had been readmitted my assigned nurse came in and talked to me about what was happening. I was able to tell her that all three episodes started with the pain which started before any kind of strain or thoughts of letting gas, or pooping. I had actually had some bm that night with no VVR or pain.
Finally someone listened to me. The pain IS coming first. I may have made a mistake about how I try to relieve it and that brought on the vagal response. I didn't do any straining or anything ex strenuous to fight it last night, so I didn't get the total vagal. I just had the terrible pain and I fought it successfully. She told me she's was going to talk to the doctor. I couldn’t go home until they figured out what the pain is and how to control it. Music to my ears.
Michelle came back Thursday night and started trouble shooting with me. Two episodes had happened while I was eating or right after. However, I also had eaten successfully and had no episodes. I often had overwhelming need to urinate before an episode, but I often felt that way and had no episode. Just before I started getting dressed on Monday I had taken my Percocet for pain. Wednesday morning I had been awakened for vitals and asked for and received pain pills. While I was eating Wednesday night they had brought in my pain meds and I had taken them. All day Thursday I had refused oral pain meds except for Ibuprofen. Bingo!
After checking the timelines in my records and a few blood tests and other medical exams we had an answer. It was determined that after 30 years of occasionally using this drug and even having built up a tolerance to it so that I needed higher doses to relieve pain; I had suddenly and inexplicably developed a severe allergy to it. Because there was so little food in my stomach, it was also getting involved and actually going into spasms, which is what caused the horrible back and stomach pain.
So the conclusion was that I had developed two different problems after my surgery. The Bile duct leak and the allergy/vasovagal/ shock episodes. In both cases it had taken the support of my friends and fellow DS’ers and my own refusal to accept silly illogical conclusions that finally led to factual answers.
We cannot afford to acquiesce to medical personnel just because they are supposed to know what they are doing. All diagnosis is not easy or obvious. These professionals can and do make mistakes. We know our bodies, we know what is normal for us and what is not. We are responsible to advocate for ourselves (with a little help from our friends) and to insist on the “right” answers.
WHAT I HAVE LEARNED FROM THIS
I don’t know everything but I do know a lot.
I am not stupid.
There is no such thing as a simple surgery.
If they aren’t listening repeat, repeat, repeat and then repeat some more.
Don’t let anyone tell you what “your normal” is.
Don’t let anyone force you to take meds in Sprite.
My DS friends are amazing!
Never give up!
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