When Mark Deneen, 70, retired in 2010, he felt he needed to move somewhere warm. His place of residence—cold, damp Eureka, California—was getting to be too much on his arthritis, brought on by years of living with severe hemophilia A. He and his wife eventually opted for the desert climate of Thousand Palms, California, but not before he made sure he had appropriate medical care in place.
Deneen had been going to the hemophilia treatment center (HTC) at University of California, San Francisco (UCSF) since the 1980s, but he knew the now-10-hour drive wouldn’t be practical. He switched his care to the HTC at University of California, San Diego. “Once I made the choice, my team in San Francisco spoke with the team in San Diego to make sure the transfer was smooth. My records were sent, and the transition went without a hitch,” Deneen says.
As more people with bleeding disorders enter retirement age, new considerations may arise regarding how to best live through one’s “golden years.” “Since clotting factor wasn’t available until the 1970s, patients weren’t expected to live that long,” says Dana Francis, MSW, of the Adult Hemophilia Program at UCSF Medical Center. “Retirees today are living longer because they are using these new products, which keeps things from getting worse, but some of the damage was already done before they had access.”
What to Look for in a New Home
When looking for a new residence, keep aging in mind. Look around your current home and take an inventory of features that have kept you safe. Deneen chose a place without a lot of stairs. “I was interested in making sure it was not too difficult to navigate to the best of my abilities,” he says.
Your treatment center can refer you to an occupational therapist who can address your particular concerns. Some will even evaluate your home and recommend changes, such as putting carpet over tiles.
Beyond your new HTC, connect with the local National Hemophilia Foundation chapter or other bleeding disorders organizations in your area. These groups have a wealth of insight on living and thriving in your new town. Chapter events are also a great way to meet new people and get insider information.
And as for the move itself? Francis advises, “Pay someone else to do it, and you won’t have to pay when you hurt yourself.”
Set Your Treatment Ducks in a Row
Retirees may want to move to find a better climate, to be near adult children or to live somewhere less expensive. When they move, however, they do have to take into consideration their special health needs so they can continue to live safely and stay healthy. Francis recommends that bleeding disorders patients who find themselves in this position first consider the following:
• Is there a good hemophilia treatment center near your new home? If the treatment center is a few hours away, will you be capable of making the long drive, or will you need someone to drive you?
• Reach out to the new center. You should get in touch with the nurse, social worker or HTC director to familiarize yourself with the staff and the center’s practices before you move.
• Have your previous HTC team speak with your new HTC team about any ongoing or potential issues concerning your treatment. “You must give written permission to your team to talk medically with the new place. They will also handle sending your records ahead,” Francis says.
• Do your homework about medical insurance coverage (especially if you plan to move to another state). Have the new HTC nurse or social worker check that you’ve properly set up your insurance with the new center so that you can continue receiving or accessing treatment without delay.
• If you want to stay with your old treatment center, can you return there easily for appointments?