Desiree Morrison's Story
Desiree Morrison's Story
I got diagnosed with CVS in January of 2014 at 30 years old, up to that point, my family and I never really understood what was wrong with me. I was frequently hospitalized with nausea, vomiting, and pain. We were always told it was a gastrointestinal virus. Originally, when I got diagnosed, we thought the CVS started when I was about 11, which was my first hospitalization and surgery and around the time of my first menstrual cycle...however, my mom and I were looking through my baby book and got to thinking and realized I was born with it. At one year, old, I wasn't even 17 pounds because I had constant projectile vomiting. My mom had to make a special formula at home for me. Because I grew up extremely poor, we did not really have much healthcare for me when I was a child, so I was always a big mystery. My mom suffered with extreme head migraines and would throw up with them, but she never had abdominal pain. As a little girl, as early as 3 or 4 years old, I constantly was sick. My stomach always hurt, many drinks and or food would make me nauseated and in pain. My system was always very, very sensitive. For instance, at 11 or 12, I was hospitalized for a week with poison ivy...the doctors told my mom had she waited even just a few hours longer, I would have died. I had to have epinephrine injections to get my heart going. I was also hospitalized for about 2 weeks once in the middle of grad school at 26 years old because I had a cold sore that turned into shingles and then the shingles went internally and nearly ate completely through my esophagus and stomach, which resulted in a dx of herpetic esophagitis. I also always had really bad GERD which at 12 years old they put me on Nexium for and I also had tachycardia...even resting my pulse was around 120-180. I did have a few healthy months here and there. For instance, in 2011, I could donate a kidney for my pastor's wife there at Methodist Hospital in Houston. So, fast forward...what led to my dx of CVS was my second pregnancy. In 2011, I had earned my master's degree in social work and my state license to practice, making me an LMSW. By 2012, I was working in healthcare and was also working as a drug counsellor. My husband and I decided to have a second child. By the time, I was 9 weeks pregnant, I was on bedrest. By 12 weeks pregnant I was hospitalized for severe nausea and vomiting and abdominal pain. I ended up nearly dying several times during that pregnancy as well as nearly losing our baby. I was hospitalized 8 times from 3 months pregnant to 8 months pregnant. I was diagnosed with Hyperemesis Gravidarum (HG), which we now know was a misdiagnosis, it was really CVS all along (according to a former CVS physician), and also dx with gastroparesis which was correct. They thought after I had the baby, the vomiting would stop, but it didn't. I had our daughter April of 2013, and by November of that year I was hospitalized for the nausea, vomiting, and pain yet again, this time for 10 days. I ended up having to have 3 psyche evaluations-which really showed nothing. My doctor asked if possibly I had heard of CVS, and I really hadn't heard much about it but had heard of it. I found a CVSA registered doctor in my town. So, in Jan. 2014, I made an appointment with him and I got my dx of CVS. So, here's where it all fell apart, and this is important because I hope to save someone's life with this part of my story. That doctor got my CVS under control! For the first time in my life, I could eat, drink, nearly anything I wanted without too much discomfort! I was on 32 pills a day including vitamins, but it was working! So, from January 2014 to September 2015, I went from 220 pounds to 315 pounds! I was working 46 hours a week, eating on the road whatever I wanted and holding it down. My doctors started really getting onto me about my weight...rightfully so, it was out of control. In August of 2015, I decided to have gastric bypass done in Mexico. Why Mexico? Because it was only 6 thousand dollars there and they would finance it, whereas here it takes months to be approved and my insurance wouldn't cover it and it's 20-40,000 here. I had 7 friends who had went and had it done and they all came back great, living life to the fullest. I THOUGHT I had found my answer. I consulted with my CVS doctor and he thought it would help the GP and likely the CVS. So, September 24, 2015 I had it done. I was home 4 days later and by October 1, I was hospitalized with nausea, vomiting, and severe pain...the pain was probably 100x worse than it ever was before. My doc admitted me with the only thing that in time, would go to show to help the pain and nausea, which was phenergan and dilaudid Q4 IV. Well, eventually they found I had a jejunum stricture, which was opened, twice. The second time was November of 2015, at which I had been hospitalized at least 3 times prior to November but since Oct. 1, and it was a massive surgery. It was 5 hours, left a foot-long scar down my abdomen...the surgeon decided to open the jejunum connection to my stomach, cut some of the stomach away, remove scar tissue, and perform a vagotomy (completely severing my vagus nerve permanently). We thought all my problems were over. By December, I was pretty much being admitted about 3 days after I would be discharged from the previous stay. I was hospitalized a long time in December, they really thought I was going to die. I had been on TPN for a few weeks here and there through my port-a-cath, but it was not making a huge difference. By March of 2016, I was miserable. My doctor had put me on a ton of different medications, but I couldn't hold them down long enough to see if they'd work. He got angry with me, accused me of being dependent on narcotics (even though I went without any narcotics and had clean drug screens the entire month of February and STILL had CVS attacks every week) and I got cut off from my home health, my TPN, and said I was non-compliant. My heart was broke. In the end of March, I went 11 days without a single bite of food (due to severe pain) and vomiting saliva and white foam (one of the surgeries left me without ANY bile anywhere in my body). My family was terrified and forced me to go the ER...I was scared because they had seen me so much at this point, they treated me awful. I ended up being admitted. My potassium, calcium, manganese, magnesium, B12, vitamin D, and iron were all critically low. My albumin was a 1.5 or 1.7, I don't remember. I ended up having another massive 5\6 hour surgery that went down the same foot long incision as last time. It was exploratory. They found my stomach was trapped in my intestines, there were kinks in my intestines, the jejunum was connected to the top of my stomach instead of the bottom, there were adhesions, and lots of scar tissue. The surgeon corrected everything the best he could, what baffled all of us is why none of this, not once, ever showed up on a CT Scan or EGD or anything. Anyhow, I ended up being on TPN for another 3-4 months. The hospitalization was 5 weeks long. The surgeon was so nice, he believed me that I was NOT crazy, was NOT a drug seeker (which I'd proved over and over again with clean drug tests). We thought again, that it was finally over. But yet again it was not. Basically, the jest of it all, is that in 12-14 months I lost around 170 pounds...I went from a size 24\26 to a size 7\8- 9\10. I used to have normal CVS cycles, about once a month to once every couple of months...post gastric bypass, I'm a daily mini-cycle sufferer, however, I still fight off major cycles about once every two weeks. I didn't even think CVS could be that frequent, that daily sufferers didn’t exist until it happened to me. I am stuck in coalescing cycles. The only reason I'm not dead, aside from God’s great mercy and grace, is because I found one medication that allows me to eat, sometimes, and controls the pain, and that is Zanaflex or Tizanidine. If\when I run out, it's literally the worst day of my life. No anti-emetic work at all anymore, not one, except phenergan IV. I just got approval from insurance to try the Sancuso Patch. My second pregnancy, and then bypass surgery, just sent my CVS into hyper drive... the attacks are far, far worse than they ever were before bypass and will come and last days without medical intervention. The hospital and ERs here won't treat me. They don't want anything to do with me because I've been too many times. I've now been admitted over 40 something times, the last time was a couple of months ago when in my sleep I had a 10 minute seizure that the ER doctor thought was related to severe malnutrition and uncontrolled pain. I’ve just been referred to an autonomic neuromuscular disease neurologist because my GI doctor believes I have an autonomic nervous system disease including a form of dysautonomia and peripheral neuropathy. CVS is a nightmare you can’t wake up from, but by God’s grace I’ll fight to the end for healing and or answers for all of us. We are warriors.
The first collage is before bypass and just a few days after bypass when CVS got out of control...the second one is some of my hospitalizations with CVS getting severe and the last picture was about 2 months and 20 pounds ago but the most recent partial body one I have.
Desiree has since passed away. This is now a homage to her and her struggles.
RIP sweetheart we'll miss you.
I got diagnosed with CVS in January of 2014 at 30 years old, up to that point, my family and I never really understood what was wrong with me. I was frequently hospitalized with nausea, vomiting, and pain. We were always told it was a gastrointestinal virus. Originally, when I got diagnosed, we thought the CVS started when I was about 11, which was my first hospitalization and surgery and around the time of my first menstrual cycle...however, my mom and I were looking through my baby book and got to thinking and realized I was born with it. At one year, old, I wasn't even 17 pounds because I had constant projectile vomiting. My mom had to make a special formula at home for me. Because I grew up extremely poor, we did not really have much healthcare for me when I was a child, so I was always a big mystery. My mom suffered with extreme head migraines and would throw up with them, but she never had abdominal pain. As a little girl, as early as 3 or 4 years old, I constantly was sick. My stomach always hurt, many drinks and or food would make me nauseated and in pain. My system was always very, very sensitive. For instance, at 11 or 12, I was hospitalized for a week with poison ivy...the doctors told my mom had she waited even just a few hours longer, I would have died. I had to have epinephrine injections to get my heart going. I was also hospitalized for about 2 weeks once in the middle of grad school at 26 years old because I had a cold sore that turned into shingles and then the shingles went internally and nearly ate completely through my esophagus and stomach, which resulted in a dx of herpetic esophagitis. I also always had really bad GERD which at 12 years old they put me on Nexium for and I also had tachycardia...even resting my pulse was around 120-180. I did have a few healthy months here and there. For instance, in 2011, I could donate a kidney for my pastor's wife there at Methodist Hospital in Houston. So, fast forward...what led to my dx of CVS was my second pregnancy. In 2011, I had earned my master's degree in social work and my state license to practice, making me an LMSW. By 2012, I was working in healthcare and was also working as a drug counsellor. My husband and I decided to have a second child. By the time, I was 9 weeks pregnant, I was on bedrest. By 12 weeks pregnant I was hospitalized for severe nausea and vomiting and abdominal pain. I ended up nearly dying several times during that pregnancy as well as nearly losing our baby. I was hospitalized 8 times from 3 months pregnant to 8 months pregnant. I was diagnosed with Hyperemesis Gravidarum (HG), which we now know was a misdiagnosis, it was really CVS all along (according to a former CVS physician), and also dx with gastroparesis which was correct. They thought after I had the baby, the vomiting would stop, but it didn't. I had our daughter April of 2013, and by November of that year I was hospitalized for the nausea, vomiting, and pain yet again, this time for 10 days. I ended up having to have 3 psyche evaluations-which really showed nothing. My doctor asked if possibly I had heard of CVS, and I really hadn't heard much about it but had heard of it. I found a CVSA registered doctor in my town. So, in Jan. 2014, I made an appointment with him and I got my dx of CVS. So, here's where it all fell apart, and this is important because I hope to save someone's life with this part of my story. That doctor got my CVS under control! For the first time in my life, I could eat, drink, nearly anything I wanted without too much discomfort! I was on 32 pills a day including vitamins, but it was working! So, from January 2014 to September 2015, I went from 220 pounds to 315 pounds! I was working 46 hours a week, eating on the road whatever I wanted and holding it down. My doctors started really getting onto me about my weight...rightfully so, it was out of control. In August of 2015, I decided to have gastric bypass done in Mexico. Why Mexico? Because it was only 6 thousand dollars there and they would finance it, whereas here it takes months to be approved and my insurance wouldn't cover it and it's 20-40,000 here. I had 7 friends who had went and had it done and they all came back great, living life to the fullest. I THOUGHT I had found my answer. I consulted with my CVS doctor and he thought it would help the GP and likely the CVS. So, September 24, 2015 I had it done. I was home 4 days later and by October 1, I was hospitalized with nausea, vomiting, and severe pain...the pain was probably 100x worse than it ever was before. My doc admitted me with the only thing that in time, would go to show to help the pain and nausea, which was phenergan and dilaudid Q4 IV. Well, eventually they found I had a jejunum stricture, which was opened, twice. The second time was November of 2015, at which I had been hospitalized at least 3 times prior to November but since Oct. 1, and it was a massive surgery. It was 5 hours, left a foot-long scar down my abdomen...the surgeon decided to open the jejunum connection to my stomach, cut some of the stomach away, remove scar tissue, and perform a vagotomy (completely severing my vagus nerve permanently). We thought all my problems were over. By December, I was pretty much being admitted about 3 days after I would be discharged from the previous stay. I was hospitalized a long time in December, they really thought I was going to die. I had been on TPN for a few weeks here and there through my port-a-cath, but it was not making a huge difference. By March of 2016, I was miserable. My doctor had put me on a ton of different medications, but I couldn't hold them down long enough to see if they'd work. He got angry with me, accused me of being dependent on narcotics (even though I went without any narcotics and had clean drug screens the entire month of February and STILL had CVS attacks every week) and I got cut off from my home health, my TPN, and said I was non-compliant. My heart was broke. In the end of March, I went 11 days without a single bite of food (due to severe pain) and vomiting saliva and white foam (one of the surgeries left me without ANY bile anywhere in my body). My family was terrified and forced me to go the ER...I was scared because they had seen me so much at this point, they treated me awful. I ended up being admitted. My potassium, calcium, manganese, magnesium, B12, vitamin D, and iron were all critically low. My albumin was a 1.5 or 1.7, I don't remember. I ended up having another massive 5\6 hour surgery that went down the same foot long incision as last time. It was exploratory. They found my stomach was trapped in my intestines, there were kinks in my intestines, the jejunum was connected to the top of my stomach instead of the bottom, there were adhesions, and lots of scar tissue. The surgeon corrected everything the best he could, what baffled all of us is why none of this, not once, ever showed up on a CT Scan or EGD or anything. Anyhow, I ended up being on TPN for another 3-4 months. The hospitalization was 5 weeks long. The surgeon was so nice, he believed me that I was NOT crazy, was NOT a drug seeker (which I'd proved over and over again with clean drug tests). We thought again, that it was finally over. But yet again it was not. Basically, the jest of it all, is that in 12-14 months I lost around 170 pounds...I went from a size 24\26 to a size 7\8- 9\10. I used to have normal CVS cycles, about once a month to once every couple of months...post gastric bypass, I'm a daily mini-cycle sufferer, however, I still fight off major cycles about once every two weeks. I didn't even think CVS could be that frequent, that daily sufferers didn’t exist until it happened to me. I am stuck in coalescing cycles. The only reason I'm not dead, aside from God’s great mercy and grace, is because I found one medication that allows me to eat, sometimes, and controls the pain, and that is Zanaflex or Tizanidine. If\when I run out, it's literally the worst day of my life. No anti-emetic work at all anymore, not one, except phenergan IV. I just got approval from insurance to try the Sancuso Patch. My second pregnancy, and then bypass surgery, just sent my CVS into hyper drive... the attacks are far, far worse than they ever were before bypass and will come and last days without medical intervention. The hospital and ERs here won't treat me. They don't want anything to do with me because I've been too many times. I've now been admitted over 40 something times, the last time was a couple of months ago when in my sleep I had a 10 minute seizure that the ER doctor thought was related to severe malnutrition and uncontrolled pain. I’ve just been referred to an autonomic neuromuscular disease neurologist because my GI doctor believes I have an autonomic nervous system disease including a form of dysautonomia and peripheral neuropathy. CVS is a nightmare you can’t wake up from, but by God’s grace I’ll fight to the end for healing and or answers for all of us. We are warriors.
The first collage is before bypass and just a few days after bypass when CVS got out of control...the second one is some of my hospitalizations with CVS getting severe and the last picture was about 2 months and 20 pounds ago but the most recent partial body one I have.
Desiree has since passed away. This is now a homage to her and her struggles.
RIP sweetheart we'll miss you.
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