Our Strange Story
On August 1, 2014, just three months after my then 37-year-old husband, Morgan, completed a 350-mile cycling trip, he had an ischemic stroke. What started as Morgan complaining about an earth shattering headache quickly turned into our worst nightmare. Within 15 minutes of the onset of the headache, he could no longer feel his left arm and chest. We immediately went to the closest emergency room and testing began.
The initial exam showed that Morgan was displaying weakness throughout his left side, but the CT scan showed nothing. However, his lab results indicated that he was severely anemic (a hemoglobin of 7), platelets well above 500, and his ferritin (stored iron) levels had been depleted. With those results, a CT scan with contrast was ordered. It was then that the ER team found Morgan had a small clot in his right carotid artery. I’ll never forget the horrible moment the doctor told me that my husband had suffered a stroke. I had a lot of urgent questions, but there were few immediate answers.
I knew that I needed to be a strong advocate for my husband. The healthcare system is complicated, and no one can advocate on your behalf better than you can. I brought in reinforcements to help: my sister, Shelby, lived with us, and a rotation of friends and family helped as needed. Our daughter, Aubree, was just shy of 2 years old, and our support system assisted with watching her, daycare drop off and pick up, mowing the lawn, and providing us with food, among other things. I constantly researched everything the doctors said, every test, every theory and my own theories.
Morgan spent five days in the critical care unit and seven days on a regular floor. Throughout his extended hospital stay, a team of specialists ran test after test, searching for the cause of the stroke. They were primarily looking for a bleed, considering his extreme anemia. All test results came back fine. Of course, they found some vitamin depletions, like vitamin D and B12, but more tests would be scheduled after we were discharged.
In addition to tests, Morgan began physical, occupational and speech therapy with the hospital staff. His progress was remarkable — you see, within 24 hours of the stroke, he became completely immobile on the left side. He made headway using a walker, and by the time he was discharged, he had graduated to a four-prong cane. Our assumption was that he would be going straight to an inpatient rehabilitation hospital, but we were denied because he had already achieved significant gains and was considered too advanced in the physical therapy.
This was disheartening and difficult to accept. He still couldn’t use his left hand — and most outpatient practices had lengthy wait lists. If he couldn’t button his shirts, how was he going to be able to help with Aubree? After an exhaustive search of outpatient programs, we finally got him into the program at the hospital where he had been treated with only five days delay between discharge and his first outpatient appointment.
Morgan, Katie and Aubree Franklin
A few weeks after discharge, Morgan underwent two back-to-back colonoscopies and a virtual colonoscopy. The GI team found a strange mass in his digestive system. It turns out he was born with two colons — one just wasn’t functioning; this is called a colonic duplication. Six weeks after the stroke, Morgan had a lengthy surgery to remove the inactive, 40 centimeter organ, which initially the physicians assumed was blocking his iron absorption. However, his iron levels still didn’t improve, and his platelets were still elevated. I continued to research on my own and with our hematologist, and scheduled appointments for second opinions with other practitioners to try to get to the bottom of what was causing the iron depletion.
Our hematologist believed that Morgan may have celiac disease or another form of gluten intolerance, though the blood test had come back negative, and the GI teams refused to do a biopsy. After working closely with our hematologist and speaking with nutrition experts, we finally decided to eliminate gluten from his diet. Within five weeks his iron levels doubled, and three months after that they were normal. Call it celiac, call it gluten intolerance — whatever it is, his body is now functioning properly, and an enormous weight has been lifted off our shoulders.
While trying to find a working theory for Morgan from a medical perspective, we were also battling with the emotional and physical changes that impact stroke patients and their family. Partially handicapped, Morgan was angry and wanted his life back. From my end, I was angry and wanted my husband and family back. To add to that, I was exhausted from the struggle of staying on top of every aspect of his health.
Morgan, Katie, Aubree and Austin
To help heal the areas that physical and occupational therapy couldn’t, I researched and found a stroke support group for patients and their families at INOVA Fairfax Hospital in Fairfax, Virginia. It was the only support group that met in the evenings, which was important because Morgan was back at his job with FEMA in Washington, D.C., and couldn’t make daytime meetings. I also scheduled us with a therapist who specializes in traumatic incidents, health tragedies and family counseling. While Morgan was resistant at first, we continued to go to both meetings (monthly for the stroke support group and weekly at first for counseling). We learned how to adapt to our new normal and make the transition at home easier. Through discussions from both meetings, we implemented strategies we learned and developed our own, new strategies to help navigate life post-stroke.
The first year and a half was a long, difficult journey, but I feel that we have learned so much about ourselves and our marriage. We are now three and a half years out from Morgan’s stroke and have stumbled onto other challenges that we have worked together to address. For example, we needed to find the right fitness program in order for him to be able to maintain strength in the left side once therapy ran out; and he has adopted cutting edge technology that helps him focus at work. This experience has made us stronger, both as individuals and as a joint force. Aside from Morgan being able to do many of the pre-stroke activities he loved, we have also added to our family — Aubree has a little brother named Austin.
Together, Morgan and I spend time sharing our story with others and advocating on behalf of stroke patients. A stroke leads to a very dark time in a person’s life, and many times it’s hard to see the light at the end of the tunnel. Our goal is to help newly diagnosed patients and caregivers find the light, access the resources they need, and help them navigate the murky waters that lead to a better place.
For information about strokes of unknown cause, download our free guide (PDF), What’s at the Heart of my Cryptogenic Stroke?
This information is provided as a resource to our readers. The tips, products or resources listed or linked to have not been reviewed or endorsed by the American Stroke Association.