My mother, Donna, has never been one to shy away from a challenge.
When I was 8, my parents divorced, leaving her in a tough spot with myself and my then 3-year-old brother, Michael. The head coach of both the women’s gymnastics and track & field teams at the local high school at the time, she needed to secure full-time work, as those were both part-time roles.
She heard about the downtown YMCA needing help with its gymnastics program, so she applied. She was hired to coach part-time, but was told that if she worked hard enough she could create her own full-time position.
It wasn’t long before she did just that. She started a daycare, preschool, and eventually 7 different before-and-after school programs in various school districts around Lawrence County, all while continuing to coach track & field at the time, earning her the title of Child Care Director at the Y.
8 years later, she wanted to get into teaching. She had heard of a P.E. teacher who was taking a sabbatical, so she inquired. Since she was on the substitute teacher’s list and still coaching in the district, she was offered the position.
“I knew when that ended I would not have full-time work again. I was taking a big risk.”
At the end of that position, she became aware of a Driver Education opportunity that would soon open up (due to retirement). Requiring a certification, she took 3 college classes up in Erie to secure that role.
This is where the medical rollercoaster begins.
Fast-forward to January, 2008. I was a senior at Penn State (my mother had managed to put both me and my brother through D-1 colleges on her own) and home for winter break. All of a sudden, she felt a sharp pain in her chest. She lied down for a while but didn’t improve, so we called an ambulance.
She ended up spending 21 days in the hospital, 9 in intensive care. She had a feeding tube in and was on 100% oxygen. At one point, they didn’t think she was going to make it. I guess they had never met my mom.
Through that ordeal, her kidneys shut down and she had emergency surgery to be placed on hemodialysis, which took 4 long hours every other day. Upon being released from the hospital, she had to endure that until sometime in April when her kidney function returned. She was able to get the dialysis port surgically removed a week before my graduation from Penn State. She said it was one of the proudest days of her life, watching me walk across the stage.
“I was remembering what I had to sacrifice to put him through a Division 1 college. I was so proud of him and I know he appreciated it.”
Fast-forward to February, 2013. Michael was a senior at Pitt and I was 3 years into my career working for Gary Vaynerchuk in NYC (like my mom, I did whatever it took to get in the door there). Donna slipped and fell while throwing down salt in the driveway. Another trip to the emergency room.
Tests showed no fractures and no bleeding, but one hell of a bump. It ended up getting infected, so she had to stay in the hospital for a bit. While there, her primary care doctor had an Endocrinologist see her. She felt her neck and recommended further testing. As it turned out, she had thyroid cancer.
This is where things start to get hard.
My mom needed to have her thyroid removed, but one of her vocal cords was unfortunately wrapped around it. The doctor had no choice but to cut the vocal cord during surgery to remove all the cancer. Instead of going home, Donna went straight to the voice clinic at a neighboring hospital the next day.
Two “quick-fix” surgeries, a more permanent one, and a few speech therapy sessions later, her voice started to return (her other vocal cord compensated for the change). She also needed to receive two radioactive iodine treatments, however, to ensure she was rid of all the cancer. That killed her taste buds.
“Everything tasted bitter and I no longer enjoyed eating. There’s the silver lining — not exactly the way I was planning to lose weight.”
Unfortunately, this also started the quick decline of her kidney function again. Still teaching, but unable to project her voice, she asked for and received a microphone system in her classroom.
Fast-forward to September, 2014. Doctors determined that Donna had a condition called orthostatic hypotension, which causes a person’s blood
pressure to drop (as much as 30 points) when going from lying down to sitting and/or standing, causing her to be a lot less physically active.
She also began seeing an eye doctor because of vision issues and started receiving regular treatments for her eyes. Eventually, she was considered legally blind and not permitted to drive.
“I try not to get too depressed. I joke that I have bad eyesight, hearing loss, and no taste buds and vocal cord — See no evil, hear no evil, speak no evil!”
Everything her body was going through destroyed her kidneys. In March of 2015, she was put on Peritoneal Dialysis (PD), allowing her to continue working because it ran at night while she slept. But after using up just about all of her sick days, she took a medical sabbatical from the school.
Shortly thereafter, she suffered two “mini” strokes and was transported to a hospital in Pittsburgh. They performed a scope and knocked out the surgical
procedure she had done on her vocal cords, but her voice had recovered to the point where she elected not to have the same surgery again.
When she returned home just four days later, she put in for early retirement.
“Teachers get a monthly pension and being a PD patient and classified as End Stage Renal Disease (ESRD) qualified me for disability as well so I knew that I would be okay.”
This is where things get really hard.
Between April of 2016 and March of the following year, Donna suffered a minor fracture in her humerus, a mild case of shingles, and a week-long bout with pneumonia, but for the most part, everything was okay. My brother, home from college, spent every night hooking her up to her dialysis machine.
In July of 2017, Donna met with her Endocrinologist to see what would be needed to get on the kidney transplant list. She had to go through the radioactive iodine treatment again to see if she had any cancer remaining. Unfortunately, the scan did not come back clean.
She would need to return back every year to undergo the same test, and if the test did not read 0.0% she would need to be treated with the radioactive iodine. Once she showed two clean scans in a row, she could then get on the list (a 3 to 5-year wait in itself, at least).
Her most recent test in July, 2018 registered 0.1%. In other words, 99.9% of her cancer was gone, but she still needed the treatment, preventing her from getting on the list.
Fast-forward to today. Unfortunately, my mother’s kidney issues are the least of our worries. With the toll everything has taken on her body, she’s become less and less mobile, accelerating issues stemming from diabetes (she had learned she was diabetic back in 2005 or 6, as it ran in the family).
A few months ago, my mother had an angioplasty on her left leg due to a lack of blood-flow in her lower extremities. The surgery cleared the blockage, but due to a shower emboli (meaning a piece of blood clot that broke off and went somewhere else), she still wasn’t getting enough blood in her lower left leg.
Without getting too graphic, her toes started to turn black, one by one. It was at this point we learned she would eventually lose them, but then another issue popped up, unexpectedly.
Donna started to develop wounds on her hips, which doctors characterized as hematomas at first (they started out as little bumps) but then eventually bed soars. This wasn’t necessarily surprising given how immobile she was.
However, the wounds started to get worse and Donna started to feel sicker. She was hospitalized about a month ago. Her white blood cell count elevated, doctors reasoned that she must have some sort of infection. The most logical source, of course, was her foot, due to all the dead tissue.
Now living in Denver but keeping close tabs on everything back home, I returned for the surgery. To give her the best chance of ever walking again, she had a below knee amputation (BKA) on her left leg.
Starting to seem better, Donna was released from the hospital and sent to a rehab facility near her home. The goal was to get her up and walking again as soon as possible so the bed soars on her hips could heal up on their own.
Two week later, I returned home again. I wanted to celebrate Mother’s Day (today) with my family. My brother picked me up from Pittsburgh International Airport and we drove straight to the facility to see our mom.
Something was wrong. The wounds on her hips weren’t healing, they were getting bigger. Donna was delirious, asking for help. She didn’t have a fever, so we assumed it was from the pain.
This is where we’re at right now.
A wound care specialist came in to take a closer look. She recommended sending her right back to the hospital. To her, the wounds looked like something called Calciphylaxis, which is “a serious, uncommon disease in which calcium accumulates in small blood vessels of the fat and skin tissues.”
Calciphylaxis causes blood clots, painful skin ulcers, and may cause serious infections that can lead to death. Apparently, it only affects 1–4% of people who are on dialysis, which is why no one considered it prior.
Right now, twice a day, hospital staff are redressing her hip wounds and keeping the sites moist, in an attempt to give her body the best chance of healing on its own. Even though she’s on painkillers, the process is causing her excruciating pain.
If Calciphylaxis is in fact what she has, the most likely cause (based on everything my family’s been reading) would be one of her recent medications, warfarin, one of the many blood-thinners she’s been on. The disease is so rare that research is scarce, but there are treatment options available. Frankly, we just don’t know what to root for at this point, as neither option seems great.
We’re supposed to get the test results back tomorrow.
“I wanted to write this not because I want sympathy but because I wanted everyone to know that I’m not giving up. I draw strength and hope from above and from those around me. There have been 13 deaths on my street since I moved here, 4 neighbors have lost their children, so I will not complain. I hope I will never experience that kind of pain. I think about them all the time and want them to know that they encourage me to get up every day and keep moving.
As the saying goes: He only gives you as much as you can handle or He shows you how to handle what you’ve been given! Well, He must think that I’m one strong person because whatever has come my way, I’ve handled.”
I’ll tell you one thing: whatever the disease, it has yet to meet my mother.