Married with two young sons, Johanna Keenan Henz enjoyed playing cello with the Cleveland Women’s Orchestra, coaching a youth running club at Cleveland’s Campus International school, and working full-time as the director of the Lake County Free Clinic. But the life where she once thrived became clouded with overwhelming fatigue, symptoms of depression, and a lack of answers.
“In 2015, I was diagnosed with Myelodysplastic Syndrome (MDS), a bone marrow failure cancer, after two years of searching for explanations,” recalls Keenan Henz.
For the following two years, Keenan Henz received four different treatments, including chemotherapy and clinical trials. With her need for blood transfusions on the rise, her oncologist recommended a bone marrow transplant, the optimal treatment for her MDS. After receiving more than 900 potential matches in the Be the Match database, she fortunately bypassed a wait list, and the procedure quickly moved forward. She endured an arduous 5-week hospitalization and 100 long days of 24-hour supervision post-transplant before the procedure was deemed successful, ultimately putting Keenan Henz’ MDS in remission.
A few short months later, her recovery would take an abrupt turn.
“I started to experience cough symptoms that the doctor thought might have been allergies,” Keenan Henz says. “It ended up being pneumonia, and I was admitted to Intensive Care, where I ended up staying for the next seven weeks.”
Attempting treatment after treatment – her condition deteriorating quickly – Keenan Henz’ ICU medical team began talks of a lung transplant. She was put on life support in order to live long enough to undergo the procedure and was placed at the top of the wait list on a Thursday. Keenan Henz received a call the following Tuesday.
“I remember the doctor calling at 3:30 a.m. that morning and her telling me that the lungs available were ‘high risk,’” says Keenan Henz. “I asked her what that meant, and she informed me that the donor was an IV drug user, and my new lungs carried the risk of HIV, hepatitis, and other illnesses. I asked her if she was worried about them. She said she wasn’t, so I told her I wasn’t either and accepted them.”
Later that afternoon, on Tuesday, June 12, 2018, Keenan Henz underwent a bilateral lung transplant.
Today, just past the one-year mark since her last procedure, Keenan Henz is all about recovery and putting her health first. Her checkups have whittled down from about six to two weekly appointments, not including monthly labs and regular visits with her bone marrow care team. Her strict, 20-medication regimen, and healthy lifestyle work to ensure her body parts remain on the same team – that her donated bone marrow doesn’t reject her body, her body doesn’t reject her lungs, and damage to her other organs is kept at a minimum.
“I also run the risk of getting skin cancer,” says Keenan Henz. “The medications I take, along with a compromised immune system, substantially increase my risk, which, as an Irish girl, was pretty high already.”
While returning to work full-time at the health clinic is no longer an option, Keenan Henz works from home as a consultant for her former employer and volunteers for Lifebanc and the Leukemia and Lymphoma Society.
“I enjoy volunteering and working a little and am also grateful for the opportunity that many don’t get, which is to spend more time with my kids,” Keenan Henz says. “I’ve been forced to re-prioritize, which is actually a great thing for me.”
For those who are undecided about becoming an organ donor, Keenan Henz recommends speaking with organ donation professionals to ask questions and alleviate fears about organ donation.
“Every organ donor has the potential to save eight lives and improve more than 50 more with tissue donation, skin donation, etc.,” she explains. “You can donate if you were sick, if you had cancer, if you were a drug addict, [or] if you died by suicide. Registering with the DMV is all it takes, and you have the opportunity to literally save lives and change the world for so many.”
In addition to the DMV, individuals can register to be organ donors online at Lifebanc.org and DonateLife.net. While these sites and the DMV do not offer bone marrow registration, interested donors can easily sign up through BetheMatch.org.
Keenan Henz is nothing but resilient, and her journey teaches us that recovery from a life-threatening illness – physically, mentally, emotionally, financially – is a lifelong process. Although some days may be a constant battle to stay healthy, to stay positive, or to just stay afloat, fighting for the highs is worth it. So, too, should be our commitment to help our neighbors in need.
“Having been saved not once, but twice,” says Keenan Henz, “I cannot stress enough how important and heroic organ and bone marrow donors are and how far a reach their decision has.”