Sheila Foley's medical expenses

This Go Fund Me is being set up to help Curt and Sheila Foley (my brother and SIL) due to some very complex health issues that have been detected in Sheila over the past five weeks. This is her story.

It all started when I was having visual changes, a headache, and difficulty finding my words. Thankfully I saw my medical provider the next day, and it was thought that I was maybe having a TIA (transient ischemic attack) or mini-stroke. They started running various tests on my brain and heart. Then it happened again three weeks later. My MRI showed that I have clearly had a stroke in the past, but they can’t tell if it was five weeks ago or five years ago, just that there was a previous infarct on the left side of my brain. When my vision and speech problems appeared the second time, they sent me to the ER, where I was admitted. In the meantime however, one of the tests on my heart (echocardiogram) revealed that I also have a congenital birth defect affecting my aortic valve and will need to have a significant heart surgery to replace that.

Over the next several days, I had many doctors, specialists, case managers, social workers etc., involved in my care. Ultimately I was diagnosed with a very rare disease called Moyamoya Syndrome which affects 1 in a million people and is part of the National Organization of Rare Diseases (NORD). Essentially, my carotid artery stops just as it goes into my skull, and tiny capillaries are trying to do the work of what most people have for normal blood vessels and blood flow throughout their brains. Now the decision needed to be made as to which surgery would take a greater priority, brain surgery or heart! Yes, I am in definite need of both. The Neurosurgeon and Cardiologist met to decide which was more critical, and on Tues this week, we met with the Neurosurgeon for a pre-op consult, and my brain surgery will be scheduled within the next two weeks. There was a delay from my hospitalization to scheduling surgery as I needed to be 100% completely free of nicotine for a minimum of 3 weeks before they would do surgery due to the oxygenation and healing that would need to take place. I am so very thankful the doctor put it to me so directly. He said, “you can smoke, or you can speak,” meaning if I don’t quit and don’t have surgery, it will only be a matter of time before I have a major stroke. Not IF I will have one. That's all it took for me to quit cold turkey!! And I have no intention of ever picking up another cigarette again. I hope this can encourage others as well. Sometimes we have to be forced to make what we know are the right decisions.

To say my and Curts' stress levels are at an all-time high is an understatement! Quitting smoking is hard enough, and then you add in 2 major health conditions, one loss of income, being completely overwhelmed with large amounts of new information, and having difficulty understanding and retaining it due to my symptoms and diagnosis......... Taking things "One day at a time" has never been more significant to us.

So, for now, we will do the brain bypass on the left side of my brain, let that heal, and then they will decide if we need to do it on the right side. Once I am stable in my recovery from those, then we will proceed with the CardioThoracic surgeon.

Curt and I want to start a "Gratitude List." The first thing I am grateful for is Curt. I can't imagine what it is like to be a spouse in this situation. He hears everything I do (and probably more) but is also dealing with the fact that this is happening to his wife. He wants to be there for me in every way but now carries the burden of being the sole provider for us financially while needing to take time off to get me to all of my appointments and doing everything else that I can't do right now. I can't imagine my life or this journey without him! My sister-in-law has always felt strongly about the importance of ensuring the caregiver is acknowledged and receives support throughout these crises. Now I understand.

It is difficult for us to ask for help, but we know without a doubt that we need it. Our medical bills alone are piling up, and I will need to be on a leave for an extended period of time. We are so very thankful for each of you and anything you can contribute. There is no better time than this next holiday of Thanksgiving, to remember all that we have to be thankful for.

From the very bottom of our hearts, thank you.

Sheila and Curt

Below is a little information about Moyamoya Disease.

Moyamoya disease is a progressive disorder that affects the blood vessels in the brain (cerebrovascular). It is characterized by the narrowing (stenosis) and/or closing (occlusion) of the carotid artery inside the skull, a major artery that delivers blood to the brain. At the same time, tiny blood vessels at the base of the brain open up in an apparent attempt to supply blood to the brain distal to the blockage. These tiny vessels are the “moyamoya” vessels for which the disease was named. Inadequate blood supply then leads to reduced oxygen delivery to the brain, and this oxygen deprivation causes moyamoya signs. One of the symptoms is typically stroke or temporary loss of neurologic function of body parts or speech (TIA). Other symptoms that may result include headaches, visual disturbances, developmental delay, and seizures.

The causes of moyamoya disease are unknown and may occur at any age, though symptoms most commonly occur between 5 and 10 years of age in children and between 30 and 50 years of age in adults.

In most patients, the diagnosis of moyamoya is made from a careful assessment of an MRI and MRA (angiogram of the brain). Treatment is based on these results combined with patients' symptoms. When surgery is necessary, the surgeon separates (dissects) a muscle in the temple region of your forehead and places it onto the surface of your brain after attaching the scalp artery to the surface of your brain. The muscle helps to hold the artery in place as blood vessels grow into your brain over time. It is similar to bypass surgery of the heart, but instead, they create a bypass in the brain, connecting the temporal artery to the carotid artery in the skull. For more about this, go to: https://moyamoya-foundation.org/