Day 1 EMU

Day 1: July 24^th, 2018 Epilepsy Monitoring Unit, Barnes Hospital

We arrived in our room at 8:30am this morning and the hooking up of his EEG began. We settled in and eventually met the attending Neurologist to find out the plan for the next few days.  Since Barnes is a training hospital, most doctors have Residents and Fellows that accompany them to learn alongside and offer input. We gave our history to them both as well as the nurse practioner (you repeat it a lot, as new nurses and doctors cycle through). We have had two lovely nurses today, who have been attentive and compassionate.

You would think that arriving for a 7 day stay where they induce seizures is bad enough. Ours has already been a little more interesting. To back up, yesterday we spent the morning in the ER as Greg had chest pains and an elevated heart rate. The tests (EKG, blood work and CT scan of the chest) where inconclusive and we went home. These symptoms were concerning at they were the ones that eventually put Greg in the hospital back in February 2017 when he was diagnosed with his Lung Cancer.  (We have a follow up with our oncologist next week after we are out of the EMU, and both his oncologist and the attending ER Dr, said to go ahead with the EMU today.) Since being admitted today his chest pain has continued and he has started to run a mild temperature, battling a fever. No one has any idea why these random symptoms are occurring. We have our plan to go ahead to start decreasing his anti-seizure medicine until a seizure is produced. I don’t know how these other symptoms come into play. What I do know is we are in very capable hands. The neuro team and staff are the best around, top ranked in the country. His oncologist is nearby, and any other medical needs that arise could be taken care of as well. Please continue to pray for the doctors, as well as Greg’s body, that we can get answers and move forward to a stable life, or miraculous healing!

Taking a More Aggressive Approach

Welcome back to the next blog post of Thriving Not Just Surviving.

The rough stretch continued this past week after I experienced another seizure on Sunday, July 15 at 9:20 p.m. After I was brought to the emergency room I experienced two additional seizure episodes which were both severe and extended in duration, resulting in a refracturing of my right shoulder. The total of three episodes forced me to spend the next few days in the hospital. I was discharged from St. Luke’s in Kansas City on Wednesday, July 18.

The biggest point of frustration and concern is that the more we have done in an attempt to remedy the seizures, the worse they have become. Despite increasing/adjusting medicine, diet changes, lifestyle changes, using a CPAP machine, and reducing stress the seizures have increased in frequency, intensity and duration. The most alarming recent development was the seizure that occurred when I was fully awake and walking around. Until now I was fairly confident that I was safe from having seizures during the day. This most recent development changes that.

The continued lack of success has forced us to make some significant changes in our approach to the seizures. A few weeks ago we discussed the possibility of undergoing  comprehensive 24/7 monitoring in attempt to pinpoint the location and cause of the seizures. At the time, our neurologist decided against it based on the risk of monitoring my complex and severe seizures as well as waiting to see if the new medication would work. We now know that the new medication is not working and my neurologist is comfortable with the amount of risk this monitoring will pose.

I am scheduled to be admitted to the Barnes Jewish Epilepsy Monitoring Unit (EMU) on Tuesday, July 24 and may be there for up to seven days. The goal of this monitoring is to learn as much as possible about my seizures and anything abnormal occurring in my brain. The most effective learning method is to induce multiple seizures that are extended in duration in which the neurologists and epileptologists will track using a video EEG. That’s all I know at this point. I expect to learn much more about what to expect over the next few days.

It’s not easy to overlook the risk associated with this approach. It was just a few weeks ago that my neurologist was concerned about broken bones and other complications stemming from induced seizures. At this point I have to put my trust in the doctors and staff at the EMU that they will be able to handle the complex nature of my seizures. Barnes Jewish Hospital does have one of the top epilepsy centers in the country and I’m confident in their ability to have success in monitoring me.

Maureen and I are hoping to do regular posts during my time in the EMU. Stay tuned for much more later this week.  

Staying the Course

Welcome back to the next blog post of Thriving Not Just Surviving. Despite the holiday on  July fourth, its actually been a fairly busy week in terms of medical news. There are no new seizures to report and my shoulder is starting to feel much better. A visit with the orthopedic surgeon on Thursday confirmed that the same part of the shoulder was injured, but the fracture appears to be no worse than it was several months ago. Essentially, the shoulder has been reinjured in the exact same spot, but not nearly as extensive.

If you remember from last week’s blog post, I underwent a 24-hour EEG monitoring session in attempt to detect abnormalities in my brain waves. Many epileptic patients have abnormal brain waves even during periods in which they are not seizing. The EEG usually can detect these and aid the neurologist in diagnosing and treating epilepsy.

The results of my EEG session came back completely normal. This may seem like a good news because it means that either my brain is completely normal during periods of seizure free activity or the abnormalities are so small and deep inside the brain making them undetectable by any type of brain monitoring. However, without any information obtained from the test it makes it very difficult to pinpoint the location and cause of the seizures. This was my third normal EEG test since February and I’ve also undergone several brain MRIs in attempt to detect structural abnormalities that could be inducing the seizures. The MRIs have come back normal as well. 

What Does This Mean?

This means that my seizures/epilepsy will continue to be difficult to treat and diagnose. I am currently not a candidate for brain surgery, due to the normal MRIs. According to my neurologist, the only time in which abnormal brain waves could be detected would be during an actual seizure while hooked up to an EEG. The logical next step would be to be admitted to the Epilepsy Monitoring Unit (EMU) for 24/7 monitoring and halt all medication in order to induce a seizure. Maureen had mentioned this was a possibility in last week’s post and this was the course of action we were hoping for. However, this is not as easy as it sounds and we learned from the neurologist that this is not the best course of action at this time.

Why Not?

I’ve experienced two seizures since starting the medication over the past 5 months. However, they  have decreased in frequency and severity. So the current medication is effective to a certain degree. Obviously we are shooting to be seizure free moving forward, but its not as simple as switching or halting medications. Even though my seizures are less severe they are still violent enough to cause fractures and other complications. Typically, when an epilepsy patient halts medication in order to induce a seizure for monitoring purposes, the seizures increase in severity and frequency; many times, even worse than before the patient started medication. This can be manageable if the patient has minor/manageable seizures, but for me in turns into a life-threatening situation. We were warned that halting medication for inducing a seizure would bring significant risk for grave injury, even paralysis. 

Additionally, even if we were to induce seizures for monitoring there is a likely chance that the only course of action following the monitoring would be to adjust my medication; which we are doing already. At this point, the reward simply does not justify the risk.

What’s Next?

Just because I am not a candidate for monitoring or surgery does not mean it’s not an option in the future. In addition to increasing the dosage of my current medication (Keppra) we are adding a secondary medication at night. We may be doing another brain MRI this week. 

We are hoping and praying that maybe this is the right formula for me. Epilepsy is so hard to treat because the magic formula for seizure free life is different for everyone and not always attainable for everyone. If I continue to have seizures we will likely continue EEG monitoring and brain MRIs on an as needed basis. Its possible that in the future something may be detected that could provide more information leading to a more specific course of action.

I plan to stay in St. Louis for the next week as I adjust to my new medication. I’ve been warned to take things slower than before as the secondary medication (valium) may bring additional side effects and result in a longer adjustment period.  Hopefully I can return to Kansas City sometime in the next 1-2 weeks.

At a Crossroads

Welcome back to the next blog post of Thriving Not Just Surviving. 

This one is written by Maureen so it may take on a different tone of writing but I will try to do what I can to keep with Greg’s impeccable writing. 

Catching Up

Monday, June 25^th around 10:25pm Greg had another seizure, despite the CPAP machine. We knew that the machine most likely wouldn’t completely eliminate the seizures, but we were hoping that it would help. Despite the seizure Monday, being on the CPAP machine for 10 days now, Greg has seen an improvement in quality of sleep.

This seizure makes episode number 4 and was much like the other ones with one main difference. I was told to take the CPAP machine off if he started to seize (it was more of a guess on their part, I think, as Greg is a special case). In doing this, Greg stopped breathing without the aid of the machine and his lips turned blue. As you can imagine, not only watching your husband have a seizure but now stop breathing and turn blue was a lot to handle. Thankfully, he started breathing on his own again and we waited out his post-seizure state until he was conscious again and I took him to the ER as we suspected he fractured his shoulder again. This was confirmed at the ER. He has an appointment with an orthopedic surgeon in St. Louis later this week to find next steps to care for that.

Instead of driving to STL right away, we stayed in KC for a few days (thank you so much to the friends who assisted in this!) We learned our neurologist was on vacation so we wouldn’t be able to get an appointment until the following week (this coming week). Wednesday night we did receive a phone call from our neurologist (a very kind man to take time of vacation) and we drove to STL Thursday for tests.

This test consisted of Greg being hooked up to an EEG for 24 hours to monitor the brain waves, and if he had a seizure to give them some information. This is an outpatient EEG you take it home, but you can’t shower for the duration and you look quite interesting, so going out in public isn’t very high on the list of things to do (pictures will accompany this post). After we arrived in town Thursday afternoon, Greg got this hooked up. This is lengthy process takes about an hour. Friday afternoon we went back to the hospital, got the wires removed and, on the drive back to his parents got a call that nothing had recorded for the last 24 hours and we had to come back Saturday morning to try it again. Not what you really want to hear when it’s 100 degrees out, with all of this equipment glued to your head and you can’t do anything or go anywhere for 24 hours. 

Where does that leave us?

Greg’s doctor bumped up his anti-seizure medicine to its maximum dose. There is always an adjustment period with the increase. So far, we are 6 days in to the adjustment and due to the high levels of medicine it has been difficult for Greg to fully adjust this time. He is taking it all in stride, I’m very proud of his perseverance and determination. We are hoping and praying that this week provides some clear paths for us. I don’t think anyone would be surprised that we are at a point where both Greg and I are both frustrated at the lack of “normalcy” in our lives. By the time we get back into a routine of being in KC together, him going into the office, PT, message and Chiropractic appointments scheduled, another seizure happens. When we meet with our neurologist this coming week we will be pushing for more aggressive measures to find some answers. One of these measures would include being admitted to the Epilepsy Monitoring Unit (EMU) at Barnes where Greg would be monitored 24 hours a day for up to 7 days. He would be removed from his medicine and seizures would be provoked to monitor the brain before, during and after the seizures to find answers and possible solutions. While this may sound very unpleasant, we are praying that this can become a reality very quickly. You know both Greg and I aren’t people to remain idle and we want to get to the bottom of this and find a more normal balance. Whether that is achieved by different medication, a combination of medications, or in rare instances, brain surgery to fix the problem.

We grateful for the continuous prayers and support you all provide. Please keep praying to Blessed Fr Solanus Casey for Greg’s complete healing of cancer and seizures.  

Here is the Solanus Casey prayer:

O God, I adore you. I give myself to You. May I be the person You want me to be, and may Your will be done in my life today. I thank You for the gifts you gave to Fr. Solanus. If it is Your will, bless us with the canonization of Fr Solanus, so that others may imitate and carry on Your love to all the poor and suffering in this world. As he joyfully accepted Your divine will, I ask You, according to Your will, to hear my prayer for Greg Fiudo, that he may be fully and completely healed of cancer and seizures through Jesus Christ our Lord.

Amen.

Adjusting to CPAP

Welcome back to the next Thriving not Just Surviving blog post. I’m very pleased to report that I received my CPAP machine and returned to Kansas City last Thursday afternoon. I’ve spent the last few days settling in and adjusting to the CPAP machine at night. So far, it’s going well.

It’s a pretty slick process. The CPAP machine has a hard drive and can transmit data over a cellular network to an app on my phone, which allows me to see different types of advanced sleep statistics. It also transmits data to a sleep therapist who can use the data to make recommendations for adjusting the air pressure and other settings on the machine. My doctor can also see this data and provide recommendations as well.

I’ve now used the machine for three nights and I’ve experienced a significant improvement in my quality of sleep. As you might remember, during the sleep study I was experiencing approximately 36 sleep apnea events per hour. With the CPAP machine that number has dropped to 5-8 events per hour. Although not perfect, I am starting to feel the benefits of an improved quality of sleep.

For the past few months I would normally have to sleep 10-12 hours on both Friday and Saturday nights. Additionally, I would also need to take a 3-4 hour nap on Sunday in order to recover for the upcoming work week. Its still early on, but I don’t feel the need to have that type of sleep regimen now that I’m on CPAP.

Despite the good results, its still weird to be under the age of 30 and be needing a CPAP machine. Apparently sleep apnea can affect anyone at any age. However, similar to lung cancer, most people appear to be at a later stage in life. I laughed as I read through the testimonials of sleep apnea patients using CPAP. According to them, I should now have the energy and confidence to do water aerobics, model trains, and puzzles.

Its great to be back and I’m thankful that my health appears to be much more stable. To be completely honest, its been an overall rough start to 2018. The significant impact of the seizures on my body as well as the unpredictability of their occurrence has definitely taken a toll. I think the toughest part has not been the physical impact, but the mental and emotional impact of being away from home for extended periods of time.

We are nearing the halfway point of 2018 (approximately 26 weeks). To date, I’ve spent 9 weeks total in Kansas City since the start of the year. That’s a staggering amount of time to be away. I was actually hesitant to count up the weeks because I knew it was a lot, but I think it’s a great illustration of what some patients who have to seek medical care in another city are faced with on a daily basis.

Moving forward, we will be working to establish a relationship with a neurologist in Kansas City. This will hopefully create some long-term stability even if the seizures return. However, all my cancer care will continue to be at Siteman Cancer Center in St. Louis.

Maureen and I continue to be blessed with the prayers and support from all the communities in our lives. We cannot thank you all enough.

Waiting For CPAP

Welcome back to the next Thriving not Just Surviving blog post. I decided to take a few weeks off from posting because there hasn’t been much to report. Its been a slow process waiting for the official results of the sleep study that was conducted at the end of May.

Fortunately, I received the results a few days ago and we will be moving forward with acquiring a CPAP machine to treat my severe sleep apnea. The official results reaffirmed what we already knew. It was noted that I average 35.9 sleep apneas every hour; meaning that I stop breathing for at least 10 seconds 35 times in a single hour. The excessive amount of sleep apneas cause my oxygen level to drop below 86% during sleep. Lack of oxygen can lead to a host of other medical problems including: heart attack, stroke, brain damage, and even seizures.

As I stated in my previous post from a few weeks ago, this is good news because it could explain the seizures and at the very least should improve my quality of life. The informal research that I’ve conducted found that there is a reciprocal relationship between sleep apnea and epilepsy. Some epilepsy patients develop sleep apnea from the anti-seizure medication they take. Apparently the medication can over-relax the muscles in the back of the throat and cause the airway to narrow during sleep, resulting in sleep apnea. The sleep apnea then exacerbates the seizures from the reduction in oxygen levels and excessive fatigue. Other research found that many people with primarily nocturnal seizures were able to successfully eliminate them after starting CPAP. Its impossible to know how it will impact my situation, but I hope six months from now we can look back and point to this diagnosis as the key in the elimination of the seizures.

We are currently waiting for the insurance company to approve the purchase of the CPAP machine. Hopefully they call in the next few days and I can receive the machine by the end of the week. If everything goes according to plan, I could be back in Kansas City at this time next week. However, past experiences have prepared me to accept that the process could be a bit slower.

Sleep Apnea

Welcome back to the next Thriving not Just Surviving blog post. It’s been a particularly productive week. On Wednesday, we met with the sleep specialist who fast-tracked the sleep study to Friday night. I didn’t expect the study to happen this quickly, but I’m very glad to have already completed it.

Sleep Study Purpose
The primary diagnosis that a sleep study determines is sleep apnea. Sleep apnea is a condition in which a person’s breathing repeatedly stops and starts. This is attributed to the airways, primarily in the throat, closing or narrowing. Its potentially serious and can trigger other serious issues including: heart attack, stroke, oxygen deprivation, and sometimes even seizures.

I’m not the stereotypical patient for sleep apnea because I am still young and not overweight. However, I have exhibited many of the symptoms including excessive fatigue throughout the day, headaches after waking up, choking when sleeping, and snoring. My neurologist also believes that sleep apnea could be increasing the chances of having seizures, due oxygen deprivation during sleep and the excessive fatigue.

Preparing for the Sleep Study
I arrived at the hospital on Friday evening and met with the sleep technologist who began hooking me up to various sensors. The main component of the sleep study is the polysomnogram which records brain activity, eye movements, heart rate, blood pressure, oxygen levels, body movement, and more. This included a host of electrodes attached to my face, chest, arms, and legs. I also had sensors under my nose and around my mouth to monitor airflow.

Since I’m an epilepsy patient, they also used an electroencephalogram (EEG). This is a test that detects electrical activity in your brain using small, metal discs (electrodes) attached to the scalp. Brain cells communicate via electrical impulses and are active all the time, even when you're asleep. This test is used in a variety of ways to identify brain activity related to seizures.

Beginning the Sleep Study

I went to bed around and 10 p.m. and the sleep technologist began monitoring me on the EEG, polysomnogram, and by video camera. It was hard to fall asleep due to all of the electrodes, but I fell asleep sometime around 11 p.m. At 1 a.m. the sleep technologist woke me up and informed me that I failed the test due to severe sleep apnea and that they were going to start administering Continuous Positive Airway Pressure (CPAP).  This is the primary treatment for severe sleep apnea.

It was difficult to fall asleep as I was trying to adjust to the CPAP mask, but sleep eventually came and I finished the rest of the test. I was awakened at 6 a.m. on Saturday and was informed that I had over 30 sleep apnea occurrences per hour during the first two hours of the test. This means that I stopped breathing for at least 10 seconds 30 times in a single hour. Its standard protocol for the sleep technologist to begin CPAP if the patient has at least 5 sleep apnea occurrences during the first two hours. In summation, I have very severe sleep apnea that is most likely significantly impacting my quality of life and potentially a contributing cause of the seizures.

Next Steps
The results are still considered unofficial and a pulmonologist, neurologist, and sleep specialist will analyze the test results from the EEG and polysomnogram, but it is expected that CPAP will be the treatment recommended for my diagnosis. This is very good news because it could explain the seizures and at the very least should improve my quality of life. If left undiagnosed, it could cause more serious issues later in life.

I still have many questions surrounding the sleep apnea and the relation to the seizures and even lung cancer. I’m hoping that the EEG and polysomnogram can shed some light on these topics. I was told that it could be up to two weeks for the test results to be published. The plan over the next few weeks is to manage the sleep apnea as best I can and hope the results come back soon so I can obtain a CPAP machine as soon as possible. I’ve rambled enough for now so I am going to hold off for at least one more week on the lung cancer discussion. I hope everyone has a great Memorial Day weekend.