| Ray Reuter and his daughter, Michelle, share more than family ties. Their journeys with rare blood disorders bear striking similarities. They write about the important support of their loved ones after they received lifesaving blood stem cell transplants more than a decade apart.|
Ray Reuter: It took years before doctors could figure out what was wrong.
The persistent flu-like symptoms and weight loss started in 1992, not long after my 40th birthday. As things got worse, I developed symptoms of tuberculosis. Even though I tested negative for the disease, TB medication helped keep the problem under control for a while. Eventually, though, I got very sick.
During one visit, my doctor got results from a bone marrow biopsy and told me, “You need to go to City of Hope.”
They saved my life at City of Hope.
Physicians ultimately discovered that I was facing myelodysplastic syndrome, a disorder that affects blood production. This was around 1997.
By 2000, my condition had worsened. My doctor told me that I only had six months to live unless I underwent a bone marrow transplant. This wasn’t a hard decision to make. My sister flew in from Madison, Wisc., to be my donor. Within days, my test results were getting better, and I was released as an outpatient two weeks afterward.
I couldn’t have gotten through it without the support of the people who love me. Caregivers really are a key link.
My wife, Lynne, was with me every day and slept at City of Hope most nights. She talked to the doctors and nurses. She was there to hold my hand. She did all this while finishing her M.B.A. studies. We also were blessed that her parents moved into our house to take care of our son, who was 2 years old at the time.
Since my transplant, I’ve faced some side effects. Basically, I’m living under a “new normal” condition. But here we are 12 years later.
I am grateful to City of Hope for saving my life. Sometimes it’s overwhelming to think about it, getting this amazing gift. It gave my wife and me the opportunity to raise our son. And since then, we adopted another boy. There’s no reason I shouldn’t be able to live to be a ripe old age and see them grow.
I am also grateful for what City of Hope has done for my daughter, Michelle. We’ve talked about how our experiences are similar. I’ve been impressed by the advances in care since my own transplant, and especially the improvements in how City of Hope cares for the whole person.
Michelle Reuter: It is kind of wild that my dad and I ended up at the same hospital 10 years apart. Unfortunately, my health problems have made me somewhat of a connoisseur of hospitals. My experience at City of Hope has been great.
Although I’ve dealt with diabetes since adolescence, my serious health problems didn’t appear until after 9/11.
At the time, I was pursuing an acting career in New York City and temping at the Twin Towers. On the day of the attacks, I stopped to vote in our local election before heading in to work, so I was late getting in. I was outside the buildings and inhaled the toxic dust. I can’t know for sure, but I suspect that may have something to do with my problems.
Not long afterward, I started picking up infections. They kept coming, and some were life-threatening. Doctors couldn’t pinpoint the underlying problem.
It went on like that for eight or nine years. In between, I returned to Southern California to be near my family.
Finally, a hematologist found that my body doesn’t make a kind of immune cell that’s important to fending off infections: the natural killer cell. There are only a small handful of other cases like mine around the world.
To confirm his diagnosis, he sent samples of my blood for testing as far away as Philadelphia and Paris. I find it funny that my blood has gone places that I have yet to see.
A bone marrow transplant was the only way to fix the problem. The hematologist sent me to City of Hope and the care of Dr. Ryotaro Nakamura. Because we couldn’t find any donor matches in my family, I received blood stem cells drawn from two umbilical cords.
I could see that everybody at City of Hope is focused on patient care. The nurses are the best, and the diabetes experts helped ensure that my blood sugar didn’t get messed up during my treatment.
I felt well supported after I left, as well. There were people to explain my medications and even help fill prescriptions. If you have a question or experience a weird symptom, you can call and ask somebody. City of Hope understands that illness can be overwhelming for everyone involved. Even your support needs support.
And it would be so much more difficult to go through this without a lot of support. I’ve been lucky. I had my mom, Betty, and my partner, Debbie, who was there every day with me in the hospital. I had my stepdad, John, and my friends. My dad came out from Arizona, too.
I’m still dealing with complications from the transplant. I try to keep a positive attitude. There are still moments when I get upset, but I’ve learned that it takes more energy to be angry and sad than to say to yourself, “OK. Let’s deal. We’ll see what happens next.”