Thursday, February 7, 2013

Online Health Sites like CarePages and CaringBridge Provide a Huge Comfort for Patients and Caregivers

When I checked into the hospital in September 2008 for a bone marrow transplant, I was feeling OK. But I was anxious, knowing I was embarking on a month-long process that promised to bring me to the brink of death in an effort to save my life.

Perhaps it was nervous energy that prompted me to look through the binder on my nightstand. While I had been treated at UCLA for years for my lymphoma, it was my first time at the new Ronald Reagan Medical Center, so I also wanted to familiarize myself with the surroundings.

I came across a mention of CarePages, an online method to keep others aware of what was happening me. I showed it to my husband and he immediately signed up.

It turned out to be a godsend. I would highly recommend such a free online update site for anyone facing a serious health issue. 

The CarePages website says “Our mission is simple: to ensure that no one goes through a health challenge alone.”

Mission accomplished.

My husband and I felt supported during long weeks in that isolated hospital room. Because my immune system was reduced to nothing as part of the bone marrow transplant process, I couldn’t entertain many visitors (nor did I want to) and I couldn’t accept any food or flowers from the outside world. And I wasn’t accepting any phone calls.

But, over the next 30 days and beyond, when I was on my second visit to hell and making my way back for the second time, my husband and I received more than 300 encouraging messages on my CarePage from loved ones. During days when I could barely stay awake and couldn’t speak due to excruciating mouth sores extending down my throat, my husband would read me daily messages sent to his computer.

They warmed my heart.

Here’s how CarePages worked for us. A contact person, in my case my husband, signed in to create a page for me. Then he sent out a mass email to contacts informing them of the site and inviting them to sign up for updates.

Then, from my room, he would compose a message once or twice a day on his laptop. Followers would be notified when there was something new and they could check the site for updates.

The view from the UCLA hospital room

He also took photos of my room and the facility. So many people had visited and helped during my previous three-year battle with cancer as I moved from hospital to hospital and rehab facility. But this was a new place and he wanted to give them an idea of where I was. He emailed shots of the view inside my room, the view out the window and me walking around the unit. (Now you can post pictures on the CarePage itself.)
Laura Laughlin being transported for radiation

People told us they loved the view of things from our perspective. Even though they couldn’t visit, it helped them understand what was happening from my viewpoint.

And friends and family said they really appreciated being kept up on how my transplant was going. A few told us their officemates were drawn into the daily updates even though they did not know me. They were riveted to the too-real reality tale and they were rooting for me as I hit rock bottom, got the lifesaving stem cells infused and began my slow journey back to health.

CarePages and a similar site, CaringBridge began in 1997. CaringBridge was started by a woman asked by her friend to update others on the birth of a premature baby. Instead of making multiple phone calls, she started the first CaringBridge page.

Both the online health blogs offer more than updates. CarePages has links to health information, support tools and gifts. CaringBridge also offers a support planner for friends to coordinate care and tasks for the patient, such as providing meals, offering rides, taking care of pets. Tens of millions of people have visited the sites.

Here are key benefits of a website like CarePages or CaringBridge:

It’s not intrusive. I could stay connected with supporters without the phone ringing at an inopportune time.  My husband could attend to me and not be taking calls while he was in the hospital.  And friends and family could check the site day or night to see how I was doing.

It gives a caregiver something to do. I believe that through my horrible fight for my life, I had it easier than my husband and visitors. Blessedly, drugs kept me from being aware of my worst days, when I was shackled to the bed, spoke in tongues and couldn’t breathe or eat on my own. I still have no memory of them. But my dear family and friends had to watch helplessly while doctors scrambled to help me.

Laura Laughlin, with mask, taking a walk around the unit.
For the stem cell transplant, days in the hospital were excruciatingly slow as they zapped me with huge doses of chemotherapy, radiated my whole body twice a day for four days, treated an allergic reaction that made my face swell like Jabba the Hut and my skin burn with itchy welts, tried to get some liquid nutrition into my sore-covered mouth and sought the cause of my fevers and chills.

I was drugged through all of this so I did, mercifully, get some sleep. My husband was with me daily, waiting by my bed, watching my slow progress. But he had something cathartic to do besides assisting me and waiting. He  composed  updates on the computer and read messages of support out loud.

It puts things in perspective. When I came out of the experience alive and cancer-free, I could read the daily chronicle of my journey. It’s painful to read. But it’s important. It gives me a real sense of how far I’ve come and how much I am loved.