Best Wishes Needed: Kailey Poole’s Battle with Myasthenia Gravis Entails Surgery

Back in May, we first published an Inside Pitch from Kailey Poole, a talented softball from Florida whose playing career has been sidetracked with a neuromuscular disease called Myasthenia Gravis.

In July, it looked like things were going in a good direction, but her mother, Melissa, wrote us over the last week to give us an update and the challenges that are arisen including surgery.

We’re asking the softball community to keep Kailey in our collective thoughts and prayers as we root for her to get back on the field playing again.

Here’s the latest per Melissa:

“I wanted to let you know that Kailey unfortunately had a couple flare-ups since July and has been in the hospital twice.”

“It was decided to proceed with surgery.”

“She had surgery Monday (Oct. 21, 2019) to remove her Thymus gland that they think plays a role in Myasthenia Gravis and the auto-immune response. She came home yesterday (Saturday, Oct. 26, 2019) and is doing well but dealing with weakness and surgical pain.”

“This surgery has given many with this disease good results including decreased dependence on medication and, best case scenario, remission. We continue to keep in contact with her travel coach and high school coach on her progress.”

“We hope to slowly start decreasing medications in a few

weeks and she hopes to start doing some light conditioning including throwing a softball in December.  Her goal is to be ready for high school spring season and she has also told me her wish is to go to Japan next year and be in the dugout with the Olympic softball team.”

“She reached out to the Make A Wish Foundation and put in an inquiry about a month ago, but we haven’t heard back. She really admires Aubree Munro and we have watched her for years including her time as a Gator.”

“Thank you again for sharing her story and bringing light to this illness and giving us an outlet.  We hope that others won’t have to go through what she has.”

“P.S. She also celebrated her 16th birthday in August (and started driving when able).  Thankfully had a pretty good day that day!”

*****

UPDATE: Good News in Kailey Poole’s Battle with Myasthenia Gravis

originally published July 11, 2019 on Extra Inning Softball

In mid-May, we published the first-person story of Kailey Poole from Pierson, Florida, a talented high school and club softball player who is battling the neuromuscular disease called Myasthenia Gravis (the original story can be found below).

We received the following update last night from her mother, Melissa Poole, who stated the positive news of Kailey’s treatment in Philadelphia…

“I wanted to let you know that we returned from Philadelphia with good news and renewed hope.”

“She was admitted to the hospital for a few days and the doctors there confirmed her diagnosis and started her on two new oral medications she will take daily, in addition to the one she was already on, as well as Intravenous Immunoglobulin (IV IG) infusions which she will need monthly.”

“They say because of the delay in diagnosis that there is some damage done between the nerves and muscles (neuromuscular junction) but it should start to heal now that she is on the right medications.It could take weeks to start feeling better or even months but they state they have had several patients successfully return to their sports.”

“She will continue with intense physical and occupational therapy for the time being at least but may be ongoing. We didn’t quite reach our fundraising goal but a local raffle helped as well as individual donations from the community. We can still use the softball community’s well wishes and support.”It is still quite a journey ahead but we are optimistic! Thank you!”

We heard from Melissa again yesterday and she let us know that Kailey went back to school on Wednesday, but is using a wheelchair–hopefully for just a few days–until the young athlete gets a little strong.

“(Her) pain is better and she’s walking better but I don’t think we will know if it is helping at least until recovered from surgery.”

“We are asking people to take a pic and post or send to her to help her stay strong. We are using hashtags #myastheniawho, #thymusbegone, #teamkailey. Ty for supporting Kailey!”

*****

The Kailey Poole Story: Dealing with Myasthenia Gravis…  “I Will Fulfill My Dreams”

originally published on May 17, 2019 on Extra Inning Softball

Imagine being a great softball player, with speed and athleticism, and having the dream to play college softball when, suddenly, you start having problems with your vision, muscular control and even ability to breathe.

That is the nightmare situation facing Kailey Poole, a talented sophomore at Taylor High School in Pierson, Florida, who also plays for the Florida Impact travel organization.

Kailey was diagnosed with a rare neuromuscular disease called Myasthenia Gravis that has caused her to lose muscular control to where this season she collapsed while playing and had to be carried off the field.

She even had one scary incident last month where she couldn’t breathe on her own and was rushed by emergency helicopter to a hospital in Orlando.

“This will NOT be permanent!” Kailey insists and her mother, Melissa, says the Impact is “holding a spot for her.”

Right now, however, the Florida high schooler is unable to play and she needs specialty treatments at a Philadelphia hospital with the goal to get her to not only manage her symptoms, but be able to get her back on the field and revive the dream of “playing college softball and, hopefully, beyond.”

Softball community: we need your help!

You’ve come through so many times before in supporting a player needed help; as we enjoy the incredible skills and athleticism of the players in the NCAA softball playoffs and Women’s College World Series, we ask you to go to the GoFundMe page of Team Kailey and help one in our fastpitch family who is being prevented right now because of this awful illness from realizing her dream to play at the college level.

Let’s close the gap that remains in raising funds to help her get the treatment she needs so one day we can all be rooting for the same team: Team Kailey!

— Brentt Eads, Extra Inning Softball

(To make a donation, click HERE)

*****

Here is Kailey’s account of her two-year journey dealing with Myasthenia Gravis and where she is today…

February 2017… little did I know that would be my last normal month.

Before the onset of my symptoms, I was overall healthy. I have asthma but it’s very well controlled and I hadn’t really had any episodes in years. I was strong, energetic, and, boy, did I have a healthy appetite!

My parents used to jokingly call me a human garbage disposal and I bragged about being the “wing eating champion.”

Softball was my life—it’s all I did. The weekdays were team practice, then lessons after practice, practice on days I didn’t have practice, tournaments all weekend, every weekend. So, basically, every day was softball and I couldn’t have been happier!

Softball was one the best part of my days, even when I had a bad day, playing and practicing just made me feel so content and carefree. I was only getting better, stronger and faster.  I was the happiest I had ever been.

That February two years ago I developed a bad case of the flu.   I was hospitalized in a local hospital and then a day later transferred by ambulance to a children’s hospital in Orlando.

I was on a continuous breathing treatment for three days in the stepdown ICU unit. After that, just like any other person getting over the flu, I waited a week or so and just went back to normal activity.

The end of February was getting closer to the playoffs of high school season (this was my 8^th grade year) and I came back and finished really strong with a batting average over .400 as the starting second baseman for the varsity team.

Soon after this my symptoms started.

They first presented with occasional eye drooping.  At the time, we just attributed it to allergies so we just put ice on it and sometimes take allergy meds and it would get better quickly.

The Summer of 2017 was when I started playing, well—I’m not gonna sugar coat it—bad.

I started losing some of the most valuable attributes to me as an athlete like my speed/hustle, strength, and quick reaction time. This has definitely been one of the most frustrating things for me as I play softball pre-dominantly, but I also do weight lifting and volleyball for my high school.

That summer I was playing in bigger tournaments with really great players and competitive teams. Previously, I would have been right there with everyone, but that whole summer I was just a step behind.

I wasn’t playing up to the standards I hold for myself as a competitive player. Meanwhile, my eye drooping started happening more frequently.

This progression of my symptoms only worsened from that summer.

Next high school season rolled around and it still went fairly well as I was the leadoff hitter and starting third baseman for the varsity team. I was still consistent making plays and hitting but that extra bit of power I had was gone.

I would joke with my first base coach about breaking the single-season basehit record. The previous season I was on the verge of home runs.  I was hitting balls to the gaps and off the top of the fence, but now the ball was barely making it out of the infield.  I did still manage to be named Honorable Mention to the All-County Team hitting nearly .500.

Friends and family just started saying that I was just getting to that time in my life where I didn’t care about sports anymore.   They thought I just wanted to be a teenager and have sleepovers and boyfriends. My parents even asked me if I wanted to quit because it had just become obvious that I wasn’t playing like I used to.

That was so extremely hard for me that everyone just thought I didn’t care or lost interest because from the first time I picked up a softball when I was seven-years-old I have been absolutely obsessed with the game. I have always wanted to play in college and the Olympics.

But after my 9th grade high school season, my symptoms again worsened.

That next summer it was becoming harder and harder to make it through a game or even practice. The eye drooping become a regular thing.

I developed a tremor in my hand and generalized fatigue and weakness that only worsened with any kind of physical activity and especially being in the heat. I even had an episode where the drooping didn’t go away so my pediatrician sent me to the hospital.

This is when they first mentioned Myasthenia Gravis (MG).

They ended up sending us home with no answers and I could barely even see.  We saw a lot of specialists after that and my vision gradually got better over a couple weeks.  I was told it was likely MG or some other autoimmune disorder.

My thyroid was also enlarged and the antibodies for this were through the roof, indicating an autoimmune disorder, but they didn’t think this was causing the symptoms I was having.  The blood test for MG came back negative.

We learned later that it is very possible for this test to be negative and still have the disorder—it’s called being seronegative and that it is harder to detect these antibodies in the blood of kids.

We were told it sometimes takes years to get a diagnosis when it comes to autoimmune disorders because when you have one you likely have others and the symptoms overlap.

We traveled everywhere last summer from Georgia to California.  After every game or break, when we would go back to the hotel, I had to stay behind and rest while the rest of the team went sightseeing or had team bonding because I was too tired to do anything other than play one game.

Previously I could play six games a day and be perfectly fine. The whole summer I really struggled playing and this was just devastating to me. Towards the end of the summer I experienced a couple of bad episodes of weakness after camps and clinics where my legs were just like jello and all the while my eye was drooping more and more.

The worst episode, I was so weak that I couldn’t walk and I really struggled to even lift my head and arms.   We went to the hospital when this episode happened and they started me on Mestinon, a medicine to help treat Myasthenia Gravis.

My symptoms improved dramatically within about a day after starting the medication. What the hospital told us would be weeks or months of recovery in a rehab center only took a few days to get back to my “new normal.” For a while it seemed like I had 10 doctor appointments a week with every specialist that you could think of. The

Mestinon was helping my symptoms but I still didn’t feel like I was back to my “old normal.” I ended up taking a break from softball during the fall travel ball season thinking that maybe my body just needed a rest.

It was one of the first breaks I had from playing in my life; it was so upsetting not being able to play but I knew high school season would be just around the corner in a few short months.

I took about a 10-week break, but running from specialist to specialist and physical therapy every week kept me busy. In this time, I went through a couple neurologists, but they told me that I needed to find experts in the problem which has been hard for us to find here in Florida.

Mestinon is a medication that helps patients with MG walk and move better. It has some side effects, though, like twitching, appetite loss/upset stomach, nausea… you name it.

This medicine helps me do everyday things but since I have started taking it I have lost my appetite almost completely.  I lost about 30 pounds when I started taking it.  I looked a lot different and started to worry about even eating enough to keep my strength up.

This past high school season definitely had some of the worst few months of my softball career and my life.  I was hospitalized right at the start of season due to a seemingly unrelated problem but that only seemed to make everything else worse.

I made it through about half the season feeling okay but then I was hospitalized again which I had been getting used to by now.  They started a new treatment called IV IG, which we had read about and thought would be one of the answers to my problem.

A couple weeks later I was feeling better and didn’t have to take my Mestinon so precisely on time.  However, the local neurologist didn’t want to continue as an outpatient much to our surprise.

Then, one practice about two months ago now, I was doing a little bit of conditioning and again my legs just completely gave out on me.   I fell over in the middle of the field.  This was just such a normal thing to me and my team now that they just carried me to the bench and I sat down for a while.

I called my mom who works right across the street from my school and she came. My boyfriend, Trevor, drove his truck out to the softball field and he had to pick me up and carry me to the truck from the dugout.

My mom called my pediatrician.  She, as well, was not too startled by the incident because this has been so normal but just to make sure everything was good, she said to come to the office.

We got about half way there and all of a sudden, I got this weird feeling in my chest, like my chest wasn’t filling up with air like it should be.  I stayed quiet for a minute and tried to stay calm and take deep breaths.

Then it got worse.

The only way I can describe the feeling is that my lungs felt like they wouldn’t inflate or deflate—they were just there doing nothing.

I have never been so scared in my entire life.

My mom told my boyfriend to take me to the ER instead.  I was gasping for air for what seemed like an hour. I don’t remember much once they carried me out of the car and into the emergency room.

The last thing I remember was someone putting a mask over my face. Then I woke up.

What I thought was an hour later, instead was one day later and had a breathing tube in. I didn’t know where I was or what was in my mouth.   I was just so confused.  My memory of my whole hospital stay is unclear.

Since that happened, I have been really struggling just getting through the day and especially have struggled at school.

I walked with a walker for about a week after discharge before returning.

I can’t take the stairs or participate in anything strenuous—even attempting CPR in health class brought on a flare up.  A usual day for me is always being tired and struggling to walk.

By the ending of the day, I’m hobbling around. Sometimes when I get really tired, I have slurred speech, can’t talk at all or I have blurry or double vision.

Not every day is horrible, though; some are better than others. Obviously, as of right now I am unable to play softball.   I missed the end of my high school season and I am not playing over the summer. I really can’t even tell you how many times I have cried about not being able to play.

This will NOT be permanent, though.   I still have every intention of fulfilling my dream of playing college softball and hopefully doing even more. We are still having trouble finding somebody in Florida who can treat me properly so that I can play, however.

So as of now I am just trying to get by minute by minute doing what I can.

This experience has been truly humbling for me as an athlete and a person. No matter what sport you play, every time you step on that playing field don’t take those moments for granted because you never know when it could be your last.

I realized how much I took playing for granted.

I also realized by being a spectator that one error or one bad hit isn’t the absolute end of the world like I used to think and be so hard on myself for.  Those things are inevitable.  You just do the absolute best you can 110 percent of the time and wait for the next opportunity and take full advantage of it.

I also realized how much I took for granted other things in life like breathing, walking, and talking. I realized that those things are precious and that I need to be grateful for it all.

Through this I would also like to thank all of the amazing people in my life who have been so patient, loving and supportive, like my friends and family, my boyfriend, my extended softball family and especially my parents who have taken me to all the doctors and hospitals trying to find answers and who have given me and done whatever I needed to get me through this, even if it was just making my bed for me.

I love you all.  Thank you.

— Kailey Poole (Pierson, Florida)