Welcome to Cayley's CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement.
In December of 2018 Cayley began feeling very weak & light-headed when working late hours in the loading dock. After waking up one morning she noticed she had tunnel vision and then blacked out. She then decided to go lay back down but before she was able to make it back to her bed she passed out. She woke to find herself laying on the floor. Although this was new and concerning, Cayley dismissed this and continued on with her day. Later that month her symptoms began to worsen. She found it very difficult to stand, she felt as though she was blacking out after short periods of standing. Another symptom that stood out to Cayley was the dryness of her mouth, no matter how much water she took in throughout the day it didn't seem to be enough to quench her thirst. She continued to dismiss these symptoms due to not being able to obtain medical insurance. Assuring herself that it's alright and that it's probably from the long hours she had been putting in at work.
Come January, Cayley was admitted to Aspiris Ironwood Hospital, simply because she couldn't handle her symptoms any longer. Upon being admitted she discovered she did, in fact, have insurance... Due to the condition she was in when she arrived, they decided that it would be in her best interest to be transferred to Duluth MN. After being transferred to she received several blood transfusions. After being inpatient for nearly a month, Cayley still did not receive the answers she was looking for. Doctors were absolutely baffled as to what could be causing these mysterious symptoms, this then prompted them to send her to the University of Minnesota.
After just one long and very trying day, it was determined that Cayley did, in fact, have Lupus. Right away they placed her on several medications to which they thought would treat her symptoms. After what felt like 3 years, her symptoms began to subside. Unfortunately, her streak of bad luck did not end there. It was found that Cayley had an Alveolar Hemorrhage, which involves damage to the small blood vessels that supply the lungs, causing blood to accumulate in the tiny air sac of the lungs. She was then intubated while they suctioned blood and fluids from her lungs. She was receiving a high dosage of prednisone, causing her to put on nearly 50lbs and making it extremely difficult for her to walk. She then started physical therapy to help gain strength and learn to walk with the additional fluids. This was Cayley's longest hospital stay to date.
After returning home it seemed as though life was going back to normal. Soon she would begin experiencing the same symptoms as before, she was then sent back to the University for further assessments. They decided to try plasmapheresis which is a process in which the liquid part of the blood, or plasma is separated from the blood cells. Typically, the plasma is replaced with another solution such as saline or albumin, or the plasma is treated and then returned to your body. She did this five separate times. They also did an echocardiogram, upper endoscopy, eye imaging, plethysmography due to her experiencing acute respiratory failure. They did a sputum induction, which is a procedure used for patients who have trouble producing sputum spontaneously. The patient inhales nebulized hypertonic saline solution, which liquefies airway secretions, promotes coughing and allows expectoration of respiratory secretions. They then did an additional 5 plasmapheresis, because her body responded to the previous treatment but not to the level needed. Normally five is the most one would receive, after finishing this treatment Cayley was discharged to go home.
From March until early June, Cayley continued to show a substantial amount of symptoms and didn't seem to be getting any better. She had several doctor visits with Oncologists, Rheumatologist, and Hematologist. Although it didn't seem she was responding to any treatments doctors continued to observe her symptoms. During this time Cayley also began chemotherapy to wipe out all the cells that were attacking her body.
Cayley was admitted to the hospital on July 21st, she would stay there for 5 days. During her stay, she was treated for her treatments and sent home without really moving forward with her illness. She was then admitted again to the hospital on September 4th, she remained at the hospital until September 27th. During this stay it was discovered that Cayley had IgA Nephropathy, also known as Berger's disease, it is a kidney disease that occurs when an antibody called immunoglobulin builds up in your kidneys. This results in local inflammation that, over time, can hamper your kidneys' ability to filter waste from your blood. Doctors also came to terms that her body is not responding to any of the treatments she's received up to this point. She was then placed into a medically induced coma to allow her body time to heal, while they suctioned blood from her lungs, during this time she received tube feedings and several medications to help her body recovered from the bruising. She was then pulled out of the coma, was observed for several more days and was then able to return back home.
Her time home once again very short-lived, on the 27th of October Cayley returned to the hospital for another lupus flare and additional symptoms. Cayley will have many more hospital stays to come, but it is our hope that her medical team can find the right treatment/medications to control her lupus flares. We hope to continue updating you as we know more, and we appreciate all of you following along with this journey. Thank you for visiting.
Here is another little piece for you all written by Cayley! When shes impatient and feeling well she enjoys being able to write these for you all, not only to answer your question but to offer you a perspective from her side of it all. So please ask away, because you may not be the only person wondering!
As you all know, I have been in a couple of medically induced comas. Many people have asked me if I hear or dream during these comas. I do not. Being in a coma is quite like a dreamless sleep. I go to sleep and it feels like no time has passed before I wake up but it's really been three days. And let me tell you, it is weird. Having your days just be gone like that. I don't hear anything either. The thing is, the coma is the easy part, it's waking up that's hard. Three days of your body laying there without movement really takes a toll on your physical wellbeing. And just waking up with the epidurals is so confusing and scary, I cry every time. After that wears off comes the pain. I couldn't do anything for myself. I couldn't even stand up anymore. That's just a little insight into what it's like to be in a coma.
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