Dear Friends,
We have all experienced moments in which our
life’s journey is forever changed. That day for us was June 1st,
2022, when Mary was diagnosed with a “rare” autoimmune disease, Myasthenia
Gravis (MG) for which there is no cure.
Below is a
timeline starting on April 17th, 2022, of what my amazing rockstar
of a wife has experienced. She has handled her body misbehaving much better
than I have.
All my best,
Sharon
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Around April 17th,
2022, Easter holiday weekend, while visiting friends in New Hampshire, Mary
mentioned her eyelid was drooping.
On May 13th,
2022, Mary had a regularly scheduled appointment with her PCP. The drooping
eyelid was getting worse. Her doctor, having previous experience with patients
who were diagnosed with MG, ordered a blood-work panel specifically for MG. The
doctor also ordered an MRI of the brain to rule out any brain damage that could
display symptoms similar to the ocular version of MG.
On June 1st,
2022, at an appointment with the neuro-ophthalmologist, Mary was positively diagnosed
with MG. Mary’s symptoms included double vision and some eye drooping to start.
It progressed to slurred speech, massive fatigue, and muscular weakness
resulting in the inability to hold her head upright, or extend her arms to
reach above her shoulders, or grasp things such as doorknobs.
On June 21st,
2022, we traveled to NYC to see Dr. Susan Shin, a neurologist, at Mt. Sinai. We
couldn’t get an appointment to see a neurologist here in Albany, NY until
November 28th. The clock was ticking, and she had no medication
prescribed at that point. Her symptoms worsened every single day. While Mary
was at Mt. Sinai, Dr. Shin ordered a CT scan (“to rule out a Thymoma”), and prescription
to start Vyvgart (an intravenous medicine), and an oral medication called Pyridostigmine
(a.k.a. Mestinon).
On July 7th,
2022, Mary was diagnosed with a Thymoma, a “rare” form of cancerous tumor that develops
on the thymus gland and occurs in about 400 MG cases per year. Mary’s tumor was
large and sat precariously close to her heart and left lung. The necessary
removal of this tumor required a high-risk surgery involving cracking open
her chest (due to the size of the tumor), much like open-heart surgery.
On July 11th,
2022, began the first of four weekly infusions done at our home, of a new drug
called Vyvgart for the MG symptoms. (Each infusion cost $6,000 and was covered
by Mary’s insurance, thank God).
On July 14th,
2022, Mary met with her thoracic surgeon who would do the surgery to remove the
Thymoma. He was so patient with us, as we had many questions regarding what was
happening to Mary’s body.
On August1st,
2022, Mary met with Cardiology for a pre-op sign off.
On August 8th,
2002, Mary had a cardio-stress test from the August 1st visit.
On August 10th,
2022, Mary met with a local Neurologist here in Albany for a pre-op sign off.
On August 15th,
2022, Mary had a Myasthenia Crisis (serious breathing issues) in which
she ended up in the Emergency Department at St. Peter’s Hospital. After
spending 18 hours in the ED, Mary was finally transferred to ICU. From there
Mary went to a stepdown unit where she was administered a five-day course of IVIG
(Intravenous Immunoglobulin). This is one of the treatment options for MG. She
was released on August 19th. When she came home, she was like a rag
doll. It was hard to keep her upright. I was so afraid I was going to drop her.
From September
2nd through September 6th, 2022, Mary was administered
IVIG (Intravenous Immunoglobulin) to build her up before surgery. Mary was
given this five-day course at home.
On September 7th,
2022, Mary underwent a 5-hour surgery. It entailed removing the tumor
(which was the size of a baseball), a section of the pericardium which
surrounds the heart, and a piece of her left lung. The tumor also wrapped
itself around the left phrenic nerve, necessitating the severing of that nerve.
The nerve controls that side of the diaphragm that operates the lungs. The
right side of the diaphragm is now having to do double duty to make up for the
left side being dormant.
On September 8th,
2022, Mary was moved out of ICU into a step-down unit where she remained until
her discharge.
On September 13th,
2022, Mary came home. I was so very happy that she made it out of the hospital
in one piece.
On September 15th,
2022, Mary met with the Neurologist here in Albany for a follow-up on her
Myasthenia symptoms since the surgery on the 7th.
On September 20th,
2022, the Visiting Nurse came to our home for a check-in regarding Mary’s
recovery.
On September 26th,
2022, Mary saw her surgeon. He was very pleased with how her body was recovery
from her high-risk surgery.
On October 4th,
2022, Mary met her Oncologist for the first time. He walked us through the
protocol and procedures for her radiation treatments.
On October 11th,
2022, Mary started outpatient physical therapy to address neck and back pain as
part of the effects of the surgery, as well as movement restrictions to protect
the sternum while it healed.
On October 19th,
2022, she saw the Neurologist here in Albany for further follow-up.
On November 1st,
2022, radiation measurements were made, and Mary got her permanent tattoos of five
dots to identify the exact spot to radiate.
On November 2nd,
2022, Mary started 33 radiation treatments. Microscopic cancer cells
were left behind because of their proximity to the heart. As her surgeon said,
if they’d taken that section, “We would have killed her.” We very much
appreciated his wisdom and restraint. In an abundance of caution, the surgeon
referred her to radiation oncology for a course of treatment to get those
little buggers, before they could get organized into another tumor, though that
would be some eight or more years in the making. The radiation treatments were definitely
needed. One of the side effects could be some irritation to the throat since
the radiation would touch the esophagus. Though the sore throats weren’t
constant, liquid Lidocaine was prescribed to help with that symptom.
On November 7th,
2022, Mary had an X-ray and saw her surgeon for another follow-up to see how
her body was handling the healing process.
On November 21st,
2022, Mary saw her PCP for her assessment of progress after Mary’s surgery.
On December 19th,
2022, Mary finished her 33-radiation treatments. During those last five days
the radiation dosage was amped up and concentrated on the key area. Up until
then, Mary had little discomfort or side effects.
On December 21st, 2022, Mary started coughing and
it was intense. Our concern with the upcoming Christmas holiday weekend was
that she’d end up in the ED like she had in August. On Friday, December 23rd,
she had a Tele-med session with the PCP on-call. The doctor suspected bronchitis
or possibly the flu. Mary was advised to take cough syrup and Mucinex. By that
time, Mary ruled out COVID as she had already done two at-home tests. Both were
negative.
On December 27th, 2022, Mary met
with her Cardiologist for the first time since the surgery for her regular
yearly checkup.
On January 2nd, 2023, Mary contacted
the Oncologist on-call for the New Year’s holiday weekend because her cough was
getting worse. His suggestion was to contact her PCP and to continue with what
she was taking.
On January 3rd, 2023, Mary went to
her PCP. The recommendation was to continue with what she was doing with the
cough syrup and Mucinex. There was no fluid in the lungs.
On January 10th, 2023, after rolling
through four bottles of cough syrup and three boxes of Mucinex, Mary’s
Oncologist ordered an X-ray. Up until then, she had been referred to her PCP
for diagnosis. There was no fluid in her lungs, and it was generally thought
that she had bronchitis or something unrelated to the treatments. In another
example of Mary’s medical uniqueness, Mary was diagnosed with a “rare” form of
pneumonia called Radiation Pneumonia.
On January 17th,
2023, Mary had a follow-up with her Oncologist to see how her body was healing with the Prednisone (a
steroid) that was prescribed on January 10th to eliminate her severe
coughing symptoms from the pneumonia that began on December 21st. We
were told her recovery could take an additional six to eight weeks or even
longer.
On January 24th,
2023, Mary had a follow-up with the local Neurologist in Albany. The doctor
listed more possible and serious symptoms from the MG that could happen at any
point and what to watch for. We were stunned. We thought the worst was behind
us.
On January 27th,
2023, Mary had a yearly physical with her PCP. This is the doctor who thought
Mary’s condition might be Myasthenia Gravis in an office visit on May 13th,
2022. Thank goodness the doctor knew the symptoms of MG.
What Mary's future health issues look like is unknown and only time will tell how well her body recovers from
all of this. As mentioned earlier, Myasthenia Gravis is a permanent condition,
there is no cure.
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Maintaining Mary’s
health insurance and our monthly expenses is crucial to help with the financial
situation we are presently in. There is a GoFundMe account started for us by a
Smith Alum friend of mine. Go to GoFundMe and search under my name, Sharon Fagan.
Any help would be greatly appreciated. Thank you.
