Blaire Boydstun's Cushing's Battle
Donation protected
Shortly after graduating from UTMB’s PA school and just at the beginning of her career, facing tens of thousands of dollars in student loans, Blaire was diagnosed with Cushing’s Disease. Blaire began her battle with this disease before her VA medical insurance became active, so her first surgery caused her to again rack up thousands of dollars in debt as many of her medical bills were not covered by her student insurance.
Blaire has never asked anyone for assistance of any kind as she deals with her disease and the overwhelming costs of her treatment. Blaire is my son, Jared’s, girlfriend and has been a part of my life for over 10 years. As someone who loves and cares deeply for Blaire I have created this Go Fund Me campaign in the hopes of alleviating some of the financial burden she has incurred while fighting to be cured from Cushing’s and the costs she will encounter in the future. Below is a summary of Blaire’s journey in her battle with Cushing’s.
A little background: Cushing’s disease is a rare endocrinological disorder caused by a pituitary tumor leading to excessive production of ACTH (adrenocorticotropic hormone). The pituitary gland is essentially in charge of the production and regulation of hormones throughout the body. It produces as many as 8 different types of hormones that travel throughout the body (Endocrine System), directing certain processes and/or stimulating other glands to produce other hormones. Excessive ACTH stimulates the adrenal glands (on top of the kidneys) to produce high levels of cortisol, the body’s “stress hormone” unregulated, causing a disease state. Long exposure to extreme excess amounts of cortisol can lead to decrease in quality of life as well as painful side effects and ultimately deteriorates the body over time. Some of the more severe symptoms and side effects of Cushing’s are high blood pressure, weight gain, anxiety, moon face, fatigue, red stretch marks, insomnia, acne, weak bones, hair loss, swelling, depression, easy bruising, high pulse rate, long term cardiac & kidney issues and a few other less common symptoms. Over the course of the past 4-5 years Blaire has experienced most, if not all of these listed symptoms in which most of them are frequent symptoms that she faces daily while also working full time.
When Blaire was first diagnosed with Cushing’s in 2014 they found a growth on the right side of her Pituitary Gland. Her Cushing’s Team of doctors, which includes a Neurosurgeon, ENT Surgeon, and Endocrinologist, decided to move forward with the common treatment for this specific disease. The procedure, termed transsphenoidal pituitary adenoma resection, is a surgical procedure performed through the nose and sphenoid sinus to remove the growth on the pituitary gland. The surgery in December 2015 was initially considered a success. Her cortisol levels dropped dramatically after the first 24 hours post op which initially showed that the disease had been cured. There were a few complications from this first surgery which Blaire had to overcome, the main one being a 6-week issue of double vision. The postop recovery was also a lengthy and troublesome road in which she had to take off 6 weeks from work. The double vision eventually resolved itself and her lab results continued to show promising numbers for the next several months. During this time Blaire’s Cushing’s symptoms began to subside and she began to regain the quality of life that had eluded her the previous two years. Unfortunately, this did not last. In November 2016, several of these symptoms returned and Blaire became suspicious that a recurrence had occurred. Her Endocrinologist ran tests over the next 5-6 months and the lab results confirmed that the Cushing’s had returned. The news was extremely difficult for Blaire and the symptoms intensified over the next several months as she explored her options for a cure. The CT and MRI imaging showed no obvious growths to support the lab results. Her medical team conferred, and a decision was made to undergo a second transsphenoidal pituitary resection in December of 2017. The Neuro surgeon and Blaire had a conversation in the pre-op room discussing the expectations and a path forward. This was an exploratory surgery, once getting in and observing the area, a decision on a path forward would have to made. During this discussion, they decided that if there was no obvious tumor to remove and knowing that the pituitary was still the source of the overall problem (These tumor cells could be hiding elsewhere throughout the gland without causing a growth), they would just remove the entire half of the side from which the last growth resided in 2015. The hope was that in cutting out a large portion of the gland they would be including the tumor cells causing the overall issues out with it and still preserve as much function of the pituitary gland itself. Blaire once again suffered horrible nights after the second surgery and her blood test results were not as promising. It did not take Blaire long to realize that this 2nd surgery was also ultimately unsuccessful. This realization devastated Blaire as she was now 4 years battling the disease that continued to wreak havoc on her body. After 2 major surgeries with lengthy recoveries, she was back to square one with a lot of doubt of what the next steps would be.
After months of more consultations amongst her medical team, 2 options were recommended. The first to radiate the area where they suspected the tumor cells resided. This option came with its own set of risks some of which were serious and typically do not show positive results until 8-12 months later. The second was an adrenalectomy, which is the removal of the two adrenal glands. These adrenal glands are the source where the cortisol steroid is created but are completely healthy in Blaire’s case. They are simply producing too much as directed by the Pituitary gland. This option also came with some serious risks and side effects with the main one being Blaire would have to supplement synthetic cortisol from the rest of her life, which if missed can be life threatening. She had no idea which option to take and was scared about making the wrong decision. After a few weeks turned into months of researching these options she went in for a checkup MRI and the results a few days later shocked her and her medical team. Another growth had developed on the originally deemed healthy side of her pituitary and her Neuro Surgeon suggested a third and final transsphenoidal hypophysectomy (removing the entire pituitary gland) leaving no room for chance for the tumor to grow back on the gland. This plan would mean from that point forward Blaire would be “Hypo Pit” meaning that of the eight hormones the Pituitary Gland produces most, if not all, would no longer be produced and would have to be supplemented synthetically for the rest of her life. The struggle for deciding which route to take next for Blaire was difficult but as advised by all her doctors, any one of the options she had on the table were better than continuing to live with Cushing’s.
Blaire had her 3rd transsphenoidal hypophysectomy surgery less than 6 months after her 2nd on April 30, 2018. This time around things did not go as smoothly as her first two. Due to several factors including the amount of trauma that area of her sinuses has been through, a CSF leak had developed during her surgery. CSF, or Cerebrospinal Fluid, is a clear, colorless, body fluid found in the brain and spinal cord. CSF acts as a cushion or buffer for the brain, providing basic mechanical and immunological protection to the brain inside the skull. CSF also serves a vital function in cerebral autoregulation of cerebral blood flow. This CSF leak that had developed was unfortunate but was not necessarily an unexpected outcome of the surgery. During the final stages of the procedure the doctor’s closed the pathway used to operate on the Pituitary, where the leak was coming from, and used a fat graft to help seal the leak. To help this closure seal properly they had to relieve pressure from the CSF flow trying to get out from the original leak. A drain was placed at the base of her spinal cord to drain CSF at a specific rate that would decrease the amount of pressure in her brain around where the closure was sealed. This came with some expected side effects and some unexpected complications. The initial side effects were extreme pain to the back and head as there was a tube stabilized in her spinal cord draining CSF for approximately 36 hours and the CSF being drained was not replenishing fast enough to compensate therefore producing extreme head pain as the fluid decreased in and around her brain. The doctors also confirmed that she had developed something they termed “Chemical Meningitis” due to the amount of blood entering the CSF stream. This caused extreme inflammation of the meninges causing even more pain throughout her head and high fevers. This unfortunately had to be treated with a high dose steroid strong enough to penetrate to the meninges and surrounding areas. The treatment using steroids made it difficult for the Endocrinologist to determine her Cortisol levels immediately post op, but the focus shifted to making sure Blaire recovers well from the surgical procedure itself and the developments from it. They would refocus on the Cushing’s case once she overcame these complications. After 4 days in the hospital being carefully monitored, compared to an overnight stay the first two surgeries, Blaire was finally discharged and sent home to begin her second phase of recovery. The inevitable phase of her hormones having to be regulated with supplements is to start after all the medications from the procedure are no longer required. Pathology reports came back on this latest surgery showing tumor cells evident in the sections examined. Therefore, the decision to remove the complete pituitary gland was the right one and we are praying that this will be the start of Blaire’s road to recovery from this devastating disease.
She must do hormone replacement for the rest of her life and the costs for these hormones will also be for the rest of her life, and they are not cheap, even with insurance. Blaire has used up all her vacation since she began working for her medical treatment and will more than likely be required to take time off without pay for part of her recovery. In conjunction with the medical bills over the past 4 years, this most recent surgery and the additional cost she will acquire in the future, Blaire will eventually need to freeze her eggs (Approximately $10,000) and undergo IVF to have children in the future due to the hormones that aren’t being made by the pituitary gland anymore. The IVF itself will cost roughly $20,000-$30,000 in addition to her supplements.
Any donation will be greatly appreciated. If you cannot donate monetarily, prayers for her recovery will also be greatly treasured.
Thank you and God bless.
Nelva Simon
Blaire has never asked anyone for assistance of any kind as she deals with her disease and the overwhelming costs of her treatment. Blaire is my son, Jared’s, girlfriend and has been a part of my life for over 10 years. As someone who loves and cares deeply for Blaire I have created this Go Fund Me campaign in the hopes of alleviating some of the financial burden she has incurred while fighting to be cured from Cushing’s and the costs she will encounter in the future. Below is a summary of Blaire’s journey in her battle with Cushing’s.
A little background: Cushing’s disease is a rare endocrinological disorder caused by a pituitary tumor leading to excessive production of ACTH (adrenocorticotropic hormone). The pituitary gland is essentially in charge of the production and regulation of hormones throughout the body. It produces as many as 8 different types of hormones that travel throughout the body (Endocrine System), directing certain processes and/or stimulating other glands to produce other hormones. Excessive ACTH stimulates the adrenal glands (on top of the kidneys) to produce high levels of cortisol, the body’s “stress hormone” unregulated, causing a disease state. Long exposure to extreme excess amounts of cortisol can lead to decrease in quality of life as well as painful side effects and ultimately deteriorates the body over time. Some of the more severe symptoms and side effects of Cushing’s are high blood pressure, weight gain, anxiety, moon face, fatigue, red stretch marks, insomnia, acne, weak bones, hair loss, swelling, depression, easy bruising, high pulse rate, long term cardiac & kidney issues and a few other less common symptoms. Over the course of the past 4-5 years Blaire has experienced most, if not all of these listed symptoms in which most of them are frequent symptoms that she faces daily while also working full time.
When Blaire was first diagnosed with Cushing’s in 2014 they found a growth on the right side of her Pituitary Gland. Her Cushing’s Team of doctors, which includes a Neurosurgeon, ENT Surgeon, and Endocrinologist, decided to move forward with the common treatment for this specific disease. The procedure, termed transsphenoidal pituitary adenoma resection, is a surgical procedure performed through the nose and sphenoid sinus to remove the growth on the pituitary gland. The surgery in December 2015 was initially considered a success. Her cortisol levels dropped dramatically after the first 24 hours post op which initially showed that the disease had been cured. There were a few complications from this first surgery which Blaire had to overcome, the main one being a 6-week issue of double vision. The postop recovery was also a lengthy and troublesome road in which she had to take off 6 weeks from work. The double vision eventually resolved itself and her lab results continued to show promising numbers for the next several months. During this time Blaire’s Cushing’s symptoms began to subside and she began to regain the quality of life that had eluded her the previous two years. Unfortunately, this did not last. In November 2016, several of these symptoms returned and Blaire became suspicious that a recurrence had occurred. Her Endocrinologist ran tests over the next 5-6 months and the lab results confirmed that the Cushing’s had returned. The news was extremely difficult for Blaire and the symptoms intensified over the next several months as she explored her options for a cure. The CT and MRI imaging showed no obvious growths to support the lab results. Her medical team conferred, and a decision was made to undergo a second transsphenoidal pituitary resection in December of 2017. The Neuro surgeon and Blaire had a conversation in the pre-op room discussing the expectations and a path forward. This was an exploratory surgery, once getting in and observing the area, a decision on a path forward would have to made. During this discussion, they decided that if there was no obvious tumor to remove and knowing that the pituitary was still the source of the overall problem (These tumor cells could be hiding elsewhere throughout the gland without causing a growth), they would just remove the entire half of the side from which the last growth resided in 2015. The hope was that in cutting out a large portion of the gland they would be including the tumor cells causing the overall issues out with it and still preserve as much function of the pituitary gland itself. Blaire once again suffered horrible nights after the second surgery and her blood test results were not as promising. It did not take Blaire long to realize that this 2nd surgery was also ultimately unsuccessful. This realization devastated Blaire as she was now 4 years battling the disease that continued to wreak havoc on her body. After 2 major surgeries with lengthy recoveries, she was back to square one with a lot of doubt of what the next steps would be.
After months of more consultations amongst her medical team, 2 options were recommended. The first to radiate the area where they suspected the tumor cells resided. This option came with its own set of risks some of which were serious and typically do not show positive results until 8-12 months later. The second was an adrenalectomy, which is the removal of the two adrenal glands. These adrenal glands are the source where the cortisol steroid is created but are completely healthy in Blaire’s case. They are simply producing too much as directed by the Pituitary gland. This option also came with some serious risks and side effects with the main one being Blaire would have to supplement synthetic cortisol from the rest of her life, which if missed can be life threatening. She had no idea which option to take and was scared about making the wrong decision. After a few weeks turned into months of researching these options she went in for a checkup MRI and the results a few days later shocked her and her medical team. Another growth had developed on the originally deemed healthy side of her pituitary and her Neuro Surgeon suggested a third and final transsphenoidal hypophysectomy (removing the entire pituitary gland) leaving no room for chance for the tumor to grow back on the gland. This plan would mean from that point forward Blaire would be “Hypo Pit” meaning that of the eight hormones the Pituitary Gland produces most, if not all, would no longer be produced and would have to be supplemented synthetically for the rest of her life. The struggle for deciding which route to take next for Blaire was difficult but as advised by all her doctors, any one of the options she had on the table were better than continuing to live with Cushing’s.
Blaire had her 3rd transsphenoidal hypophysectomy surgery less than 6 months after her 2nd on April 30, 2018. This time around things did not go as smoothly as her first two. Due to several factors including the amount of trauma that area of her sinuses has been through, a CSF leak had developed during her surgery. CSF, or Cerebrospinal Fluid, is a clear, colorless, body fluid found in the brain and spinal cord. CSF acts as a cushion or buffer for the brain, providing basic mechanical and immunological protection to the brain inside the skull. CSF also serves a vital function in cerebral autoregulation of cerebral blood flow. This CSF leak that had developed was unfortunate but was not necessarily an unexpected outcome of the surgery. During the final stages of the procedure the doctor’s closed the pathway used to operate on the Pituitary, where the leak was coming from, and used a fat graft to help seal the leak. To help this closure seal properly they had to relieve pressure from the CSF flow trying to get out from the original leak. A drain was placed at the base of her spinal cord to drain CSF at a specific rate that would decrease the amount of pressure in her brain around where the closure was sealed. This came with some expected side effects and some unexpected complications. The initial side effects were extreme pain to the back and head as there was a tube stabilized in her spinal cord draining CSF for approximately 36 hours and the CSF being drained was not replenishing fast enough to compensate therefore producing extreme head pain as the fluid decreased in and around her brain. The doctors also confirmed that she had developed something they termed “Chemical Meningitis” due to the amount of blood entering the CSF stream. This caused extreme inflammation of the meninges causing even more pain throughout her head and high fevers. This unfortunately had to be treated with a high dose steroid strong enough to penetrate to the meninges and surrounding areas. The treatment using steroids made it difficult for the Endocrinologist to determine her Cortisol levels immediately post op, but the focus shifted to making sure Blaire recovers well from the surgical procedure itself and the developments from it. They would refocus on the Cushing’s case once she overcame these complications. After 4 days in the hospital being carefully monitored, compared to an overnight stay the first two surgeries, Blaire was finally discharged and sent home to begin her second phase of recovery. The inevitable phase of her hormones having to be regulated with supplements is to start after all the medications from the procedure are no longer required. Pathology reports came back on this latest surgery showing tumor cells evident in the sections examined. Therefore, the decision to remove the complete pituitary gland was the right one and we are praying that this will be the start of Blaire’s road to recovery from this devastating disease.
She must do hormone replacement for the rest of her life and the costs for these hormones will also be for the rest of her life, and they are not cheap, even with insurance. Blaire has used up all her vacation since she began working for her medical treatment and will more than likely be required to take time off without pay for part of her recovery. In conjunction with the medical bills over the past 4 years, this most recent surgery and the additional cost she will acquire in the future, Blaire will eventually need to freeze her eggs (Approximately $10,000) and undergo IVF to have children in the future due to the hormones that aren’t being made by the pituitary gland anymore. The IVF itself will cost roughly $20,000-$30,000 in addition to her supplements.
Any donation will be greatly appreciated. If you cannot donate monetarily, prayers for her recovery will also be greatly treasured.
Thank you and God bless.
Nelva Simon
Organizer and beneficiary
Nelva Martinez Simon
Organizer
Missouri City, TX
Blaire Boydstun
Beneficiary
