Fighting for Julie: An Autoimmune Battle
Donation protected
Julie Zimmer McCann is one of the strongest, most caring, generous, and resilient people I know. These traits are among the many reasons she’s my best friend. Most people have no idea about the perpetual health struggles Julie has dealt with her whole life. In the past two years, she has been forced to start being a bit more open about her health as it has become increasingly poor and affected her life more and more. She’s gone through 10 long, agonizing bouts of pancreatitis and is currently recovering from the most recent one. During her most recent hospital stay, doctors discovered a blood clot in her portal vein.
These, in combination with other health issues, have caused her a huge amount of financial stress. She spends more on medical care each month than all her other expenses combined. From payment plans for astronomical bills to others that remain untouched in combination with the (often expensive) prescriptions she has to take and regular doctor’s copays, it is completely draining her, both financially and emotionally.
Here’s a rough timeline of Julie’s health struggles
1990s
When Julie was 16, she was diagnosed with Crohn’s Disease, two days before she was due to start a year abroad. Six months into it, she was forced to return home in order to get the level of medical care she needed. Upon return, she began a myriad of treatment regimens that proved overall ineffective. She started her senior year at 118 pounds and graduated at 90 pounds.
A few days after she graduated, she had an ileocolic resection. They removed 3 1/2 feet of her small intestine that was ravaged by Crohn’s, contrary to the belief going in that it would be a mere 10 inches. It was barely caught in time before sepsis would have killed her.
Six short months later, Julie woke up one morning and her whole body hurt; she could barely move. She would soon find out that the Chohn’s had manifested in her joints, cause severe Rheumatoid Arthritis. She could barely lift a couple pounds at once and her joints continued to deteriorate and the worst of her flare ups would leave her essentially paralyzed.
Eventually, she was referred to Dr Stephen Hanauer at the University of Chicago- where he was both a professor and doctor specializing in gastroenterology and hepatology. Even he and his team of specialists were able to do very little to improve her condition.
2000-2010
One morning, she woke up one morning and realized nothing hurt. While initially concerned by the lack of pain, it proved turned out to be a reprieve from the severe and debilitating pain she had lived with since her teenage years.
2010-Present
Julie was taking a medication called 6-MP to treat the symptoms of her Crohn’s and arthritis. She developed a reaction to the medication which caused purple spots on her legs; it was petechiae and indicated an issue with her platelets. Upon seeing her doctor, labs were drawn for a complete blood count. She returned to work only to find out that her doctor was waiting for her at the hospital and she needed blood transfusions immediately. Her labs indicated truly catastrophically, lethally low levels of white cells, platelets, and hemoglobin in her blood. Doctors told her she should have been dead and was likely not to survive. Eventually, though, Julie’s strong will to live kicked in and she was stabilized.
Thereafter, due to her autoimmune issues, her body began to attack itself. She had developed a condition (Idiopathic Thrombocytopenia Purpura) which caused her body to attack her own blood cells.She spent months getting daily blood tests and regular blood transfusions. Fortunately, a spinal tap showed her bone marrow had not been infiltrated and she would not need a marrow transplant. After hundreds of blood and platelet transfusions and 4 rounds of IVIG, her immune system was “tricked” into stop attacking itself, and that nightmare was over.
For a few years, Julie’s health problems had seemed to subside and she was hopeful again. Life finally seemed normal.
Then, starting in 2017, her worst and current nightmare began. Intestinal pain sent Julie to the ER, where she was admitted for pancreatitis. She was put on a clear liquid diet and her pain was so extreme it could only be managed by IV pain medication. She was released after 2 ½ weeks.
Her recovery was short-lived and 9 months later she was readmitted for pancreatitis and this time she stayed a month. She was unable to keep food down and in extreme pain again.
This time, only one month passed before she was back in the hospital. This time, a feeding tube was placed for a week of her stay due to her inability to eat. She was released, and two weeks later returned. This hospital stay stretched on for five weeks and required another feeding tube.
Last year, Julie took drastic measures to get her health under control- changing her lifestyle, her diet, and where she lived. She left the stress of LA behind for Arizona, where she is also able to spend more time with family.
At the end of the 2018, she contracted pancreatitis once again and with this hospital admission, doctors became vigilant in their attempts to determine the cause of these recurring bouts. Answers evaded them. The pain was worse than ever before and complications were on the rise. Fluid had begun to accumulate in her intestines, amplifying the symptoms of pancreatitis. A tube was placed to remove the fluid, and four days later she was released.
Over the past year or so, Julie began seeing a pancreatic specialist. At the end of February, the pain began again and at the beginning of March she was hospitalized. Her pain had become so extreme that she had a patient controlled pump for her IV pain medicine, something rarely seen outside of cancer patients. She wasn’t able to eat or drink, so fluids were given intravenously. A catheter was inserted to allow her to urinate. She was on oxygen because her lungs weren’t functioning properly. Her intestines retained 20 lbs of fluid and she looked 9 months pregnant. She developed gastroparesis and the already agonizing pain became even worse. Attempts to reintroduce fluids to her diet were unsuccessful which led to another feeding tube. One month later, she was released from the hospital and went home with a feeding tube, which she vomited up a week later, landing her in the hospital for 3 days. Several attempts to place a feeding tube landed her in the hospital for a few days and Julie had had enough. She decided not to try again. It took a couple of weeks, but slowly she worked her way back onto solid food.
The search for answers led to the scheduling of an Endoscopic Ultrasound, which allows doctors to more effectively evaluate the pancreas. It would be performed the first week of August.
Pancreatitis returned at the end of May but was caught early enough that she only needed to be hospitalized for four days. The pain never fully subsided and by the end of June it was increasing, but this was a different type of pain.
At the end of July, she contracted pancreatitis once again. She was hospitalized for the seventh time with her 10th occurence of pancreatitis. When a CT scan was done, a large blood clot in her portal vein was discovered. It was caused by her pancreas. Her IV site got infected which gave her cellulitis and resulted in an internal staph infection. This also caused another blood clot, running from her wrist (the site of the IV) to her elbow. The EUS was performed while she was in the hospital and revealed chronic changes and significant damage to her pancreas. While this procedure did not determine the cause, the knowledge it provided will lead to better monitoring and hopefully earlier intervention to keep her from ending up in the hospital again.
Why the fund?
Since the issues with her pancreas began, Julie has faced increasingly astronomical medical bills. From doctors visits to hospitalizations to procedures to expensive medications, the bills keep coming. Her medical bills are by far the largest monthly expense she has. It breaks my heart to see her fight this uphill battle and the stress of it only serves to trigger her autoimmune issues, starting the cycle once again. Julie is an amazing person- she has dedicated her life’s work to helping those with mental illness and addiction issues get well. She herself, however, is not well and deserves to receive some of the same kindness and generosity she so willingly offers anyone anyone in need.
As long as these financial issues plague her, the stress will continue to trigger her illnesses and she doesn’t have a fair shot at recovery. I came from Florida to do everything I can to help her recover but what I can do is limited, that’s why I decided to create this fund. Julie has fought for herself and her health for so long, this is what I can do to help fight for her. So please, if you can donate anything- no matter the amount- please do. And if you cannot afford to, please share this and help spread the word so we can give back to Julie what she has given to so many of us.
These, in combination with other health issues, have caused her a huge amount of financial stress. She spends more on medical care each month than all her other expenses combined. From payment plans for astronomical bills to others that remain untouched in combination with the (often expensive) prescriptions she has to take and regular doctor’s copays, it is completely draining her, both financially and emotionally.
Here’s a rough timeline of Julie’s health struggles
1990s
When Julie was 16, she was diagnosed with Crohn’s Disease, two days before she was due to start a year abroad. Six months into it, she was forced to return home in order to get the level of medical care she needed. Upon return, she began a myriad of treatment regimens that proved overall ineffective. She started her senior year at 118 pounds and graduated at 90 pounds.
A few days after she graduated, she had an ileocolic resection. They removed 3 1/2 feet of her small intestine that was ravaged by Crohn’s, contrary to the belief going in that it would be a mere 10 inches. It was barely caught in time before sepsis would have killed her.
Six short months later, Julie woke up one morning and her whole body hurt; she could barely move. She would soon find out that the Chohn’s had manifested in her joints, cause severe Rheumatoid Arthritis. She could barely lift a couple pounds at once and her joints continued to deteriorate and the worst of her flare ups would leave her essentially paralyzed.
Eventually, she was referred to Dr Stephen Hanauer at the University of Chicago- where he was both a professor and doctor specializing in gastroenterology and hepatology. Even he and his team of specialists were able to do very little to improve her condition.
2000-2010
One morning, she woke up one morning and realized nothing hurt. While initially concerned by the lack of pain, it proved turned out to be a reprieve from the severe and debilitating pain she had lived with since her teenage years.
2010-Present
Julie was taking a medication called 6-MP to treat the symptoms of her Crohn’s and arthritis. She developed a reaction to the medication which caused purple spots on her legs; it was petechiae and indicated an issue with her platelets. Upon seeing her doctor, labs were drawn for a complete blood count. She returned to work only to find out that her doctor was waiting for her at the hospital and she needed blood transfusions immediately. Her labs indicated truly catastrophically, lethally low levels of white cells, platelets, and hemoglobin in her blood. Doctors told her she should have been dead and was likely not to survive. Eventually, though, Julie’s strong will to live kicked in and she was stabilized.
Thereafter, due to her autoimmune issues, her body began to attack itself. She had developed a condition (Idiopathic Thrombocytopenia Purpura) which caused her body to attack her own blood cells.She spent months getting daily blood tests and regular blood transfusions. Fortunately, a spinal tap showed her bone marrow had not been infiltrated and she would not need a marrow transplant. After hundreds of blood and platelet transfusions and 4 rounds of IVIG, her immune system was “tricked” into stop attacking itself, and that nightmare was over.
For a few years, Julie’s health problems had seemed to subside and she was hopeful again. Life finally seemed normal.
Then, starting in 2017, her worst and current nightmare began. Intestinal pain sent Julie to the ER, where she was admitted for pancreatitis. She was put on a clear liquid diet and her pain was so extreme it could only be managed by IV pain medication. She was released after 2 ½ weeks.
Her recovery was short-lived and 9 months later she was readmitted for pancreatitis and this time she stayed a month. She was unable to keep food down and in extreme pain again.
This time, only one month passed before she was back in the hospital. This time, a feeding tube was placed for a week of her stay due to her inability to eat. She was released, and two weeks later returned. This hospital stay stretched on for five weeks and required another feeding tube.
Last year, Julie took drastic measures to get her health under control- changing her lifestyle, her diet, and where she lived. She left the stress of LA behind for Arizona, where she is also able to spend more time with family.
At the end of the 2018, she contracted pancreatitis once again and with this hospital admission, doctors became vigilant in their attempts to determine the cause of these recurring bouts. Answers evaded them. The pain was worse than ever before and complications were on the rise. Fluid had begun to accumulate in her intestines, amplifying the symptoms of pancreatitis. A tube was placed to remove the fluid, and four days later she was released.
Over the past year or so, Julie began seeing a pancreatic specialist. At the end of February, the pain began again and at the beginning of March she was hospitalized. Her pain had become so extreme that she had a patient controlled pump for her IV pain medicine, something rarely seen outside of cancer patients. She wasn’t able to eat or drink, so fluids were given intravenously. A catheter was inserted to allow her to urinate. She was on oxygen because her lungs weren’t functioning properly. Her intestines retained 20 lbs of fluid and she looked 9 months pregnant. She developed gastroparesis and the already agonizing pain became even worse. Attempts to reintroduce fluids to her diet were unsuccessful which led to another feeding tube. One month later, she was released from the hospital and went home with a feeding tube, which she vomited up a week later, landing her in the hospital for 3 days. Several attempts to place a feeding tube landed her in the hospital for a few days and Julie had had enough. She decided not to try again. It took a couple of weeks, but slowly she worked her way back onto solid food.
The search for answers led to the scheduling of an Endoscopic Ultrasound, which allows doctors to more effectively evaluate the pancreas. It would be performed the first week of August.
Pancreatitis returned at the end of May but was caught early enough that she only needed to be hospitalized for four days. The pain never fully subsided and by the end of June it was increasing, but this was a different type of pain.
At the end of July, she contracted pancreatitis once again. She was hospitalized for the seventh time with her 10th occurence of pancreatitis. When a CT scan was done, a large blood clot in her portal vein was discovered. It was caused by her pancreas. Her IV site got infected which gave her cellulitis and resulted in an internal staph infection. This also caused another blood clot, running from her wrist (the site of the IV) to her elbow. The EUS was performed while she was in the hospital and revealed chronic changes and significant damage to her pancreas. While this procedure did not determine the cause, the knowledge it provided will lead to better monitoring and hopefully earlier intervention to keep her from ending up in the hospital again.
Why the fund?
Since the issues with her pancreas began, Julie has faced increasingly astronomical medical bills. From doctors visits to hospitalizations to procedures to expensive medications, the bills keep coming. Her medical bills are by far the largest monthly expense she has. It breaks my heart to see her fight this uphill battle and the stress of it only serves to trigger her autoimmune issues, starting the cycle once again. Julie is an amazing person- she has dedicated her life’s work to helping those with mental illness and addiction issues get well. She herself, however, is not well and deserves to receive some of the same kindness and generosity she so willingly offers anyone anyone in need.
As long as these financial issues plague her, the stress will continue to trigger her illnesses and she doesn’t have a fair shot at recovery. I came from Florida to do everything I can to help her recover but what I can do is limited, that’s why I decided to create this fund. Julie has fought for herself and her health for so long, this is what I can do to help fight for her. So please, if you can donate anything- no matter the amount- please do. And if you cannot afford to, please share this and help spread the word so we can give back to Julie what she has given to so many of us.
Organizer and beneficiary
Alice Waters
Organizer
West Palm Beach, FL
Julie Zimmer McCann
Beneficiary