Nicole's Medical Bills
Donation protected
The past week has been the hardest of my life. My wife, Nicole Aversa, is currently in a medically induced coma and intubated due to complications following a routine surgery.
For the past 5 days, I have watched her quickly deteriorate. We need help with medical bills, in home treatment after she is released, and help from loss-of-income.
--
The backstory
It seems this all started on Friday September 16, 2016. My wife had several small red bumps on her leg. They were there for over 2 years. At first, she thought they were bug bites. When they didn't go away, she assumed they were cysts. They didn't itch, but if she pressed on them, they hurt.
Her sister, a nurse, demanded she see a dermatologist. She finally gave in. They took a biopsy of one of the bumps and sent it to get analyzed. That night, we went to see Weird Al. My wife wasn't a fan of his, but got us tickets anyway because she knew I was a fan. That night was the last normal night we had.
--
The Call That Changed Our Lives
Several days later, my wife received a call from her dermatologist. The bumps she had on her leg were leiomyoma. This was a symptom of a rare genetic disorder called Reed's Syndrome - also called HLRCC. He suggested she see a genetics doctor to get tested for the FH gene mutation. He also recommended she see an gynecologist to check for fibroids.
--
Reed's Syndrome - HLRCC
Little is known about HLRCC, short for Hereditary Leiomyomatosis and Renal Cell Cancer. 200 families worldwide are affected the disease. It causes large fibroid to grown on the uterus, skin myomas. It also increases the probability for developing kidney cancer. It is hereditary, with a 50/50 chance of passing it on, though HLRCC can start at a single person.
The best way they know to identify HLRCC is by checking the FH gene mutation. What we learned later, however, is you do not necessarily have to have the gene mutation to be diagnosed with HLRCC. This is just the best known method of identifying somebody with HLRCC. There is still much to learn.
After looking at the FH gene and seeing it was hers was not mutated, they decided she still met the clinical diagnosis of HLRCC.
--
Doctors Visits
I took my wife to get a battery of tests in one day. One thing they found was a small cyst on her kidney. It is currently under observation to ensure it does not get larger.
She also saw a gynecologist to get an ultrasound. The ultrasound revealed fibroids on her uterus, one 10cm and one 2cm. Amazingly, they were not causing her any pain and she had no idea they were there. After consulting with a surgeon, they decided the best course of action would be to remove them through an open myomectomy.
It was to be a relatively short 4 hour surgery, followed by a night or two in the hospital. Because we had so many medical bills at this point, we decided the best thing to do would be to operate by the end of the year. Her surgery was scheduled for December 29, 2016.
--
Surgery Goes Well...
Her surgery went off without a hitch. They actually found 3 fibroids on her uterus. The doctor described it as a fruit salad - there was a 10cm grapefruit, a surprise 6cm clementine and a 2cm grape.
The surgery was expected to hurt a lot. Because of the size and location of the fibroids, they could not operate laparoscopically. They ended up having to go in via a c-section incision. They told us it would a painful recovery.
That night, however, she was feeling great. The next morning she left the hospital with no pain. The incision looked great. I remember asking her on her second night home, "If you were cleared to work, when do you think you could go back?" She told me "Next week!"
It was incredible. The incision looked great. She felt great. She was moving around, laughing. You would never know she had surgery just a day before.
We thought the worst was behind us.
--
January 1, 2017
Our new insurance plan takes affect. Thankfully she was able to keep all her same doctors, but the out-of-pocket maximum raised a few thousand dollars.
--
Then it All Goes Wrong...
On January 2nd, my wife started to complain about lower back pain. She thought it was from having to sleep on her back without being able to turn. Over the next day or 2, the pain would get worse. While at work, she asked me to stop and get her a heating pad from the store on my way home. The next night, our world would change.
On January 4th at 3:00PM, while I was at work, my wife was rushed to the hospital. She called her sister and told her something was wrong. Her sister, a nurse, called 911. Thankfully my family lives very close by. They rushed to my house.
She text me the following:
My wife does not take pain pills. The last few nights, she was taking them, as prescribed, to ease her back pain. With how well she was doing, I was thinking it could be anything. A drop in blood sugar, withdraw from the Percocets (which seems silly now).
The last thing on my mind was that she would end up in the ER.
That's exactly what happened.
My wife was suffering from an extremely high temperature. She was shaking violently and uncontrollably. She was conscious and terrified. I rushed to the hospital from my work, over 30 miles away. I nearly beat the ambulance.
All through this, her incision looked good. Her pelvic exam showed no infection. Her body, however, was telling a different story.
The ER took X-Rays, blood cultures and tested her for the flu. They gave her Tylenol. She calmed down and her fever dissipated. Despite knowing she just had surgery, the ER assumed it was the flu. They sent her home.
--
The Next Day
The next day, I had my dad stay with my wife. She was clearly unwell, but with her being off from her surgery, we needed to have at least one income. It killed me to leave her knowing how she was. My dad came down very early to fill her medications, and stay with her until I got home. I was worried but comforted knowing she would not be alone.
It was at 10:40 am when everything changed. She told me her blood cultures came back positive for bacteria, and that she needed to get the the ER immediately. She was suffering from sepsis. They were admitting her.
I rushed home again. She didn't want to go via ambulance. My dad had to stay with our dog. When I got home, she said she was freezing cold. She was shaking uncontrollably. I blasted the heat in the car, put the seat warmers on and got her to the hospital within an hour of the when she called me.
The next few days turned into a blur.
--
January 5th, 2017
We are at the ER. They put her through a litany of tests. They can't control her shaking and her temperature. After what seemed like a lifetime, they got a room ready for her and transported her.
At first, they put her in a standard room. After checking her blood pressure and seeing it was dangerously low at 95/(I honestly don't remember), and hear heart rate was dangerously high, they quickly took her to Step Down on a different floor. Not long after we were moved, the doctors changed her status to ICU. She was in pain, coughing, struggling to breath and shaking uncontrollably.
They put her on oxygen, took her for a CT scan and kept a close eye on her.
The CT showed she had a massive case of pneumonia in her lungs and blood. Both of her lungs were infected by more than 50%.
They came in, increased her oxygen, put a new mask on her to get her more air and fought to keep her stable.
In the middle of the night, in the middle of a snowstorm, they called in a radiologist to conduct an echocardiogram on her heart to see if the infection spread to her valves. As far as the echo showed, they were okay.
Her heartrate was reaching as high as 175. Her respiration rate was 75. She was fighting hard, but the doctors didn't know what to treat her for, so they put her on Vancomycin.
More specific blood cultures take several agonizing days correctly identify the exact bacteria in her blood and lungs.
--
January 6th, 2017
The doctors still could not maintain her oxygen saturation.
That night, they went from a nose cannula at 6L, to a mask at 10L, to a non rebreather at 15L. All of these failed to keep her stable. Her heart rate did not go below 150 bbm for over 24 hours. Her oxygen saturation was around 90. She was struggling and her body was tiring out. Her fever was spiking at over 104. They put ice on her and cold rags. The IV Tylenol was not helping.
Bottle after bottle that night could not bring down her temperature or her help her breathing.
Nicole resting in ICU the first night.
--
Later That Evening
They informed us they knew the type of bacteria that was in her blood and lungs. It was Staphylococcus Aureus.
Bloated from the IV fluids and Vanco, there was a constant struggle to find a vein that wouldn't collapse. They tried using dopplers, ultrasounds, specialists - it was rough.
It was a long night.
--
January 7th, 2017
Eventually they brought in a Bi-Pap machine. She was terrified. The first time they put it on her, she had a panic attack. I had to gently calm her down and tell her it was okay - that this was simply to give her body a break and let the machine do the work for her lungs. She gave it a chance.
Nicole trying to work with the bi-pap machine.
At first, it looked promising. Her saturation was up to 96. Her heart rate was down to 115 bbm. Her temperature seemed to have broke. We both thought we were through the worst of it.
They also told us they figured out what was making her sick. It's a bacteria called Methicillin-Sensative Staphylococcus Aureus. MSSA, for short. It's a
Later that day, she turned again. After they finally were able to get an artery to check her blood/gas levels, they decided the best course of action would be to intubate her. They wanted to do it in a controlled, sterile environment instead of when it was an emergency.
My wife was a wreck. I had to calm her down and tell her this was the best thing for her - something I told her through every new source of oxygen. The last thing she said to be before they knocked her out was, "I'm sorry! I'll see you in a few days. I love you."
It broke my heart. I called her goofy for apologizing to me, I told her I loved her, too, and she would be okay.
--
Intubation
The doctors allowed me to stay while they put her out. I was thankful for that.
They also told me I could stay during the intubation - something I wish I wouldn't have tried. After seeing them use a BVM to get her saturation from 75 to 100, then jam a piece of equipment at an extreme angle down her throat, I had to walk out.
--
January 8th, 2017
That brings us to me writing this. Her numbers are starting to improve. It looks like she may be through the worst, but I'm cautiously optimistic. I've seen her show signs of improvement, only to go 2 steps backwards.
For 5 days straight, I never left her side. For 5 days I had to be strong for my wife, for her family, for my family, to talk to the doctors and my own sanity. For 5 days I watched the love of my life ill before my eyes. All of this from a few small red bumps on her leg.
For fellow Whovians, we always joked that she's my Amy Pond and I'm her Rory. I now have an idea what it's like to be the boy that waited.
We still don't know how or why she contracted MSSA. We may never know. Just when it seemed like everything was going so well after her surgery, this happened.
--
GoFundMe
We have insurance, but the hospital bills are mounting up. With an out-of-pocket maximum of nearly $14,000, plus home care that she will need while continuing IV antibiotic treatments for 2+ weeks after the hospital, on top of the being down an income down for an foreseeable future, this is where you can help.
I am thankful for you just reading our story. I am also thankful for the opportunity that GoFundMe provides. Every little bit helps and it will all go towards the medical bills and making ends meet.
She has a long road to recovery, and I want to make sure this is one less thing we have to worry about.
For the past 5 days, I have watched her quickly deteriorate. We need help with medical bills, in home treatment after she is released, and help from loss-of-income.
--
The backstory
It seems this all started on Friday September 16, 2016. My wife had several small red bumps on her leg. They were there for over 2 years. At first, she thought they were bug bites. When they didn't go away, she assumed they were cysts. They didn't itch, but if she pressed on them, they hurt.
Her sister, a nurse, demanded she see a dermatologist. She finally gave in. They took a biopsy of one of the bumps and sent it to get analyzed. That night, we went to see Weird Al. My wife wasn't a fan of his, but got us tickets anyway because she knew I was a fan. That night was the last normal night we had.
--
The Call That Changed Our Lives
Several days later, my wife received a call from her dermatologist. The bumps she had on her leg were leiomyoma. This was a symptom of a rare genetic disorder called Reed's Syndrome - also called HLRCC. He suggested she see a genetics doctor to get tested for the FH gene mutation. He also recommended she see an gynecologist to check for fibroids.
--
Reed's Syndrome - HLRCC
Little is known about HLRCC, short for Hereditary Leiomyomatosis and Renal Cell Cancer. 200 families worldwide are affected the disease. It causes large fibroid to grown on the uterus, skin myomas. It also increases the probability for developing kidney cancer. It is hereditary, with a 50/50 chance of passing it on, though HLRCC can start at a single person.
The best way they know to identify HLRCC is by checking the FH gene mutation. What we learned later, however, is you do not necessarily have to have the gene mutation to be diagnosed with HLRCC. This is just the best known method of identifying somebody with HLRCC. There is still much to learn.
After looking at the FH gene and seeing it was hers was not mutated, they decided she still met the clinical diagnosis of HLRCC.
--
Doctors Visits
I took my wife to get a battery of tests in one day. One thing they found was a small cyst on her kidney. It is currently under observation to ensure it does not get larger.
She also saw a gynecologist to get an ultrasound. The ultrasound revealed fibroids on her uterus, one 10cm and one 2cm. Amazingly, they were not causing her any pain and she had no idea they were there. After consulting with a surgeon, they decided the best course of action would be to remove them through an open myomectomy.
It was to be a relatively short 4 hour surgery, followed by a night or two in the hospital. Because we had so many medical bills at this point, we decided the best thing to do would be to operate by the end of the year. Her surgery was scheduled for December 29, 2016.
--
Surgery Goes Well...
Her surgery went off without a hitch. They actually found 3 fibroids on her uterus. The doctor described it as a fruit salad - there was a 10cm grapefruit, a surprise 6cm clementine and a 2cm grape.
The surgery was expected to hurt a lot. Because of the size and location of the fibroids, they could not operate laparoscopically. They ended up having to go in via a c-section incision. They told us it would a painful recovery.
That night, however, she was feeling great. The next morning she left the hospital with no pain. The incision looked great. I remember asking her on her second night home, "If you were cleared to work, when do you think you could go back?" She told me "Next week!"
It was incredible. The incision looked great. She felt great. She was moving around, laughing. You would never know she had surgery just a day before.
We thought the worst was behind us.
--
January 1, 2017
Our new insurance plan takes affect. Thankfully she was able to keep all her same doctors, but the out-of-pocket maximum raised a few thousand dollars.
--
Then it All Goes Wrong...
On January 2nd, my wife started to complain about lower back pain. She thought it was from having to sleep on her back without being able to turn. Over the next day or 2, the pain would get worse. While at work, she asked me to stop and get her a heating pad from the store on my way home. The next night, our world would change.
On January 4th at 3:00PM, while I was at work, my wife was rushed to the hospital. She called her sister and told her something was wrong. Her sister, a nurse, called 911. Thankfully my family lives very close by. They rushed to my house.
She text me the following:
My wife does not take pain pills. The last few nights, she was taking them, as prescribed, to ease her back pain. With how well she was doing, I was thinking it could be anything. A drop in blood sugar, withdraw from the Percocets (which seems silly now).
The last thing on my mind was that she would end up in the ER.
That's exactly what happened.
My wife was suffering from an extremely high temperature. She was shaking violently and uncontrollably. She was conscious and terrified. I rushed to the hospital from my work, over 30 miles away. I nearly beat the ambulance.
All through this, her incision looked good. Her pelvic exam showed no infection. Her body, however, was telling a different story.
The ER took X-Rays, blood cultures and tested her for the flu. They gave her Tylenol. She calmed down and her fever dissipated. Despite knowing she just had surgery, the ER assumed it was the flu. They sent her home.
--
The Next Day
The next day, I had my dad stay with my wife. She was clearly unwell, but with her being off from her surgery, we needed to have at least one income. It killed me to leave her knowing how she was. My dad came down very early to fill her medications, and stay with her until I got home. I was worried but comforted knowing she would not be alone.
It was at 10:40 am when everything changed. She told me her blood cultures came back positive for bacteria, and that she needed to get the the ER immediately. She was suffering from sepsis. They were admitting her.
I rushed home again. She didn't want to go via ambulance. My dad had to stay with our dog. When I got home, she said she was freezing cold. She was shaking uncontrollably. I blasted the heat in the car, put the seat warmers on and got her to the hospital within an hour of the when she called me.
The next few days turned into a blur.
--
January 5th, 2017
We are at the ER. They put her through a litany of tests. They can't control her shaking and her temperature. After what seemed like a lifetime, they got a room ready for her and transported her.
At first, they put her in a standard room. After checking her blood pressure and seeing it was dangerously low at 95/(I honestly don't remember), and hear heart rate was dangerously high, they quickly took her to Step Down on a different floor. Not long after we were moved, the doctors changed her status to ICU. She was in pain, coughing, struggling to breath and shaking uncontrollably.
They put her on oxygen, took her for a CT scan and kept a close eye on her.
The CT showed she had a massive case of pneumonia in her lungs and blood. Both of her lungs were infected by more than 50%.
They came in, increased her oxygen, put a new mask on her to get her more air and fought to keep her stable.
In the middle of the night, in the middle of a snowstorm, they called in a radiologist to conduct an echocardiogram on her heart to see if the infection spread to her valves. As far as the echo showed, they were okay.
Her heartrate was reaching as high as 175. Her respiration rate was 75. She was fighting hard, but the doctors didn't know what to treat her for, so they put her on Vancomycin.
More specific blood cultures take several agonizing days correctly identify the exact bacteria in her blood and lungs.
--
January 6th, 2017
The doctors still could not maintain her oxygen saturation.
That night, they went from a nose cannula at 6L, to a mask at 10L, to a non rebreather at 15L. All of these failed to keep her stable. Her heart rate did not go below 150 bbm for over 24 hours. Her oxygen saturation was around 90. She was struggling and her body was tiring out. Her fever was spiking at over 104. They put ice on her and cold rags. The IV Tylenol was not helping.
Bottle after bottle that night could not bring down her temperature or her help her breathing.
Nicole resting in ICU the first night.--
Later That Evening
They informed us they knew the type of bacteria that was in her blood and lungs. It was Staphylococcus Aureus.
Bloated from the IV fluids and Vanco, there was a constant struggle to find a vein that wouldn't collapse. They tried using dopplers, ultrasounds, specialists - it was rough.
It was a long night.
--
January 7th, 2017
Eventually they brought in a Bi-Pap machine. She was terrified. The first time they put it on her, she had a panic attack. I had to gently calm her down and tell her it was okay - that this was simply to give her body a break and let the machine do the work for her lungs. She gave it a chance.
Nicole trying to work with the bi-pap machine.At first, it looked promising. Her saturation was up to 96. Her heart rate was down to 115 bbm. Her temperature seemed to have broke. We both thought we were through the worst of it.
They also told us they figured out what was making her sick. It's a bacteria called Methicillin-Sensative Staphylococcus Aureus. MSSA, for short. It's a
Later that day, she turned again. After they finally were able to get an artery to check her blood/gas levels, they decided the best course of action would be to intubate her. They wanted to do it in a controlled, sterile environment instead of when it was an emergency.
My wife was a wreck. I had to calm her down and tell her this was the best thing for her - something I told her through every new source of oxygen. The last thing she said to be before they knocked her out was, "I'm sorry! I'll see you in a few days. I love you."
It broke my heart. I called her goofy for apologizing to me, I told her I loved her, too, and she would be okay.
--
Intubation
The doctors allowed me to stay while they put her out. I was thankful for that.
They also told me I could stay during the intubation - something I wish I wouldn't have tried. After seeing them use a BVM to get her saturation from 75 to 100, then jam a piece of equipment at an extreme angle down her throat, I had to walk out.
--
January 8th, 2017
That brings us to me writing this. Her numbers are starting to improve. It looks like she may be through the worst, but I'm cautiously optimistic. I've seen her show signs of improvement, only to go 2 steps backwards.
For 5 days straight, I never left her side. For 5 days I had to be strong for my wife, for her family, for my family, to talk to the doctors and my own sanity. For 5 days I watched the love of my life ill before my eyes. All of this from a few small red bumps on her leg.
For fellow Whovians, we always joked that she's my Amy Pond and I'm her Rory. I now have an idea what it's like to be the boy that waited.
We still don't know how or why she contracted MSSA. We may never know. Just when it seemed like everything was going so well after her surgery, this happened.
--
GoFundMe
We have insurance, but the hospital bills are mounting up. With an out-of-pocket maximum of nearly $14,000, plus home care that she will need while continuing IV antibiotic treatments for 2+ weeks after the hospital, on top of the being down an income down for an foreseeable future, this is where you can help.
I am thankful for you just reading our story. I am also thankful for the opportunity that GoFundMe provides. Every little bit helps and it will all go towards the medical bills and making ends meet.
She has a long road to recovery, and I want to make sure this is one less thing we have to worry about.
Organizer
Salvatore Aversa
Organizer
Stowe Township, PA
