Not Your “Textbook” Patient: Kayla Dewberry’s Story
At FindMeCure we believe that the best purpose you can find for your pain is to turn it into a reason to keep going and reach out to other people who share your experience. This is exactly what Kayla decided to do after receiving her myasthenia gravis diagnosis. Today we share her story in the hope she can inspire you and make you feel a little less alone in your struggle.
There might be people out there somewhere that could relate to what I am going through. Even if I only help one person, then I have done something good.
Kayla wants to teach her two boys resilience by sharing the story of her hardships.
I want them to know that I never gave up and that they were two of my main reasons for never giving up, along with their Daddy. I also want them to know that no matter how hard life gets, to never stop praying and never lose faith.
Kayla Dewberry (29) received her MG diagnosis after her second pregnancy – for many women pregnancy can trigger underlying autoimmune disease. During her postpartum, she began experiencing the scary symptoms of myasthenia gravis: not being able to chew and swallow her food, having a constant droopy eye, slurred speech, not being able to smile. At first, her OBGYN who she visited for her six-week postpartum checkup thought Kayla had a stroke but when the necessary tests did not confirm that, she referred her to a neurologist. This is how the MG diagnosis was reached. Kayla’s next step was to find a neurologist who specialised in MG – that’s how Dr O’Neal became a trusted member of her treatment team.
He explained that some patients with MG have a tumour on their thymus gland called a thymoma. If there is a thymoma then it must be removed. I went and had the test done to check my thymus gland and the next day Dr O’Neal called me himself with the results. Dr O’Neal informed me that I did have a thymoma.
A cardiothoracic surgeon in Birmingham, Dr. John Richardson told Kayla that her thymoma had to be removed.
He explained the different ways that he could surgically remove it and all the pros and cons to each way. My mom and I had no idea which option was the best. My mom looked at Dr Richardson and said, “if this was your daughter, what option would you do?” Dr Richardson sat there for a minute and he looked at us and said, “if it were my daughter, I would crack her chest open to be 100% sure that I got everything out.” So that is what we did.
On August 11, 2015, Kayla underwent a thymectomy but unlike many of the cases cited in the studies, she did not improve as expected even though initially, it seemed like her symptoms were about to decrease.
I remember waking up with tubes coming out of my stomach and in severe pain. I had never hurt so bad before and no matter how I moved or tried to lay, it hurt. My family was there standing around me. I stayed in the hospital for five days. I also took Intravenous Immunoglobulin (IVIG). IVIG is a blood product that comes from between 1,000 and 15,000 donors per batch. It is a treatment choice for people with antibody deficiencies. (…) Needless to say, I could chew, swallow, talk, and smile much better by the time I was discharged to go home.
Soon Kayla had two neurologists who “talked back and forth on different options” as she still needed treatment to keep her symptoms at bay.
They both decided that they wanted me to try taking IVIG infusions regularly like I had previously taken in the hospital. The medications that I was taking daily were helping, but just not enough anymore. Also, I was trying to do everything that I could to avoid taking steroids every day.
After one issue had been handled, however, another one appeared: Kayla began experiencing gynaecological problems.
I was constantly having cysts on my ovaries. I had a few minor surgeries to remove cysts; however, the cysts continued coming back. On February 19, 2016, Dr Nelson, my OBGYN, did an ablation, dilation and curettage (D&C) and removed my tubes hoping it would help with the cysts. Unfortunately, this did not help.
After reporting her stomach pain to her doctor, Kayla had a HIDA scan (an imaging test to view the liver, gallbladder or small intestine) on suspicion that her gallbladder was malfunctioning.
The next day I got a call from Dr Ard’s nurse that my gallbladder was functioning 0%. (…) On July 27, 2016, I had my gallbladder removed.
Once this health issue was taken care of, another one appeared: her regular infusions for the MG got harder as the nurse who administered them could hardly find the vein and so she recommended getting a MediPort.
On August 31, 2016, Dr Tartt did a small surgery and placed a MediPort in my chest for my infusions. The port is not fashionable and it makes finding clothes more difficult because I like to keep it covered. The port is definitely a blessing when I get my infusions though.
In the meantime, the ovarian cysts kept causing trouble. Kayla was about to make another difficult health decision.
Dr O’Neal referred me to an OBGYN in Birmingham just to get another opinion on the cysts. He set me up to see Dr Robert Goolsby. Again, here I go to see yet another doctor. I went to see Dr Goolsby for my first visit in September of 2016. He did his own tests and compared his measurements of my cysts to some of my previous tests. He wanted to see if the cysts were growing and if they were growing, he wanted to see how fast and how much.
Unfortunately, two cysts had grown together. Dr Goolsby explained that he believed that a complete hysterectomy was the best option for me. At this time, I was 26 years old and no matter your age or situation this is hard to hear. I knew that Chase and I were blessed with two healthy little boys and we were fine with that, so I agreed to have the hysterectomy.
After the surgery things seemed to have calmed down for Kayla. She kept receiving her usual infusions for MG and she kept in touch with her treatment team. Everything shifted again soon when one of Kayla’s doctors, Dr Claussen was killed in a car accident. The health issues kept coming, this time probably triggered by the stress of the sudden loss. At first, it was a minor issue with Kayla’s wisdom teeth. Then, her vision started worsening.
I went to see my local Optometrist, Dr Lee Johnson, for my eyes. I knew things were more blurry than normal and I just could not see road signs like I normally could see them. I had been wearing contacts since I was in high school but I knew something more was going on. Dr Johnson did a thorough exam on my eyes and explained that I had cataracts. Now, this was hard to hear at 28 years old. Cataracts? He explained that they were likely medicine induced cataracts from some of the medications that I took daily for my MG. Again, this was another hard thing to hear from yet another doctor. He referred me to an Ophthalmologist in Meridian, Mississippi. (…) He did many tests of his own this week. He explained the needed cataract surgery in detail to me. He explained that he did one eye one week and a week later he did the other eye. On August 29, 2018, I had the cataract surgery done on my left eye. The surgery itself went really well. I went back the next morning for a checkup. Dr Marascalco said the eye looked great; however, my eye was still blurry.
After the second surgery, Kayla’s blurry vision was still not improving. At first, both she and her doctor weren’t worried about it as it could take some time for things to improve. Dr Marascalco eventually became concerned when no change manifested.
Dr Marascalco sent me to another Ophthalmologist in Birmingham to get his opinion. I went to my appointment with Dr Michael Vaphiades (Dr V) to get his opinion on October 1, 2018. (…) After a long day, Dr V came in and said that I had something called Paracentral Acute Middle Maculopathy (PAMM). Again, this is another very rare problem. (…) From what I can understand, the retina is not getting enough blood flow. (…) Dr V wanted me to see a Retina Specialist located in his building. Luckily, since I live three hours away, Dr V was able to get me in the next morning.
When this new doctor told her there was nothing he could do for her, Kayla was referred to yet another specialist.
He said there is a blood test that he wanted to do. He explained that since I had MG which was an autoimmune disease that he wanted to check to see if I had this particular rare eye autoimmune disease called Autoimmune Retinopathy. (…) I was so nervous to hear the results. Dr Tieu explained that my blood work was positive for Autoimmune Retinopathy. Not only was this completely new to me, it was new for Dr Tieu as well. We were going to learn together. Autoimmune Retinopathy is a rare disease in which the immune system attacks proteins in the retina, leading to loss of eyesight. Loss of eyesight? Really? How could I call my husband and tell him this? How could I call any of my family and tell them this? How could I explain this to my oldest son?
After all the stress she experienced, Kayla had an MG flareup and had to stay at St. Vincent Hospital for IVIG infusions. While in the hospital, she began looking for a second neurologist to add to her treatment team.
On March 25, 2019, I go see Dr Kenkichi Nozaki at Kirklin Clinic at UAB. (…) He mentioned two other different options. The first was a plasma exchange and the second was a new infusion for MG called Soliris. He was more favourable to the Soliris. He just explained the cost was extremely high, way higher than the IVIG.
While Kayla was considering the treatment her new doctor suggested, another crisis was brewing up. After a routine checkup of her thymus gland, the hospital called her and asked her back to the ER urgently.
The doctor came in and told me that I had air in my chest wall. He said I likely had a hole in my lung or oesophagus and that I needed to be taken to Birmingham by ambulance right then. (…) The next morning, Dr Richardson came in to see me. He explained to me that this was not uncommon to have that extra air in your chest wall. My prayers had been answered. It was so good to hear some good news.
Kayla’s health issues were far from solved, however, as her eyes were still causing her anxiety and the scary diagnosis she had received did not help matters.
Dr Tieu suggested that I go to the Bascom Palmer Eye Institute in Miami, Florida to see what they said about my eyes. (…) On May 8, 2019, Chase and I fly to Miami. I have never flown before, so this was yet another new experience for me. The next morning, we go to the Bascom Palmer Eye Institute to see Dr Janet Davis. (…) She explained that I did have the positive blood tests for Autoimmune Retinopathy but that she did not believe it was “active” at the time. She did continue to say that I did have PAMM that I had been diagnosed with previously. This was a little relief to hear; however, I was still worried because it was my eyes and my eyesight on the line.
Another test suggested to her finally put her worries to rest when it was confirmed that her AR was indeed not active. Soon after that, Kayla began taking Soliris (she had to get the mandatory Meningitis shots two weeks prior to the first infusion):
So currently I take both IVIG and Soliris every two weeks at my home. It takes most of the day to take both treatments. I have to take both Tylenol and Benadryl before both infusions.
Kayla feels good for about a week and a half after receiving her new treatment. As she’s about to celebrate her 30th birthday, she reflects on her struggles so far.
So much has happened to me over the last couple of years, but through a lot of prayer, tears, caring doctors, my family, and friends, I made it through all the storms. I have always been told that God does not give a person more than they can handle, and I truly believe that with all my heart. I am not going to lie, there have been many times where I wondered how much more I could take, but I never lost my faith.
After 12 years of marriage, she and her husband recently renewed their wedding vows surrounded by family.
There are many days where I do not want to get out of bed or have no energy to do anything, but I have three reasons to make myself get up and do what needs to be done: Chase, Caysen, and Stephen. Those three get me through the bad days and the good days.
I cannot say enough how blessed I have been to have found the best doctors through the last several years. Each one of them holds a special place in my heart. These special doctors include Dr Virginia Nelson, Dr David O’Neal, the late Dr Gwen Claussen, Dr Don Marascalco, Dr Lee Johnson, Dr Brian Tieu, Dr Ching Chen, Dr Kenkichi Nozaki, Dr Michael Ard, Dr Stephen Tartt, Dr John Richardson, and my infusion nurse, Renee Barker. Each of these doctors and my nurse have always been on top of things with my health.
Through all the hardships she faces in living with a chronic illness Kayla derives strength from her family and her treatment team. Having a strong ‘why’ is the key to keep going forward, however hard the battle gets.
You can get in touch with Kayla at:
Instagram: Kayla Goodin Dewberry