News Blog

BWB is proud to have provided a $200 grant in support  of this program.

Saturday morning: I wake up late, like usual, 11:00 o’clock-ish, having been up until 3:30am, again as usual. My day starts with my morning medications, followed by breakfast (low salt, 20g protein). After performing my morning rituals, I make my way to the computer to check e-mails and to prepare for today’s Caregiver Support Group, which I’ll be facilitating.

The past year has been a whirlwind of fighting to survive, constant learning, building new relationships, and now has become a matter of rebuilding my body, my mind, and my psyche. The support group is an important part of both of those cycles, and I look forward to the day’s call.

Flashing back: In May of 2009, I had just completed a nine-state musical tour of the Western US, when I began to notice swelling in my feet and legs. I didn’t realize it at the time, but my mental state was affected as well. From where I stand now, there are days and weeks of which I have no recollection. In August of ’09 I died from complications of end-stage liver disease. Since then it’s been a battle, first just to survive, and now to thrive.

I’ve found some amazing doctors who have filled me with hope, and nursed me back to a pretty good state of health. Although I remain actively listed on the liver transplant list and am hoping to undergo treatment for Hepatitis C (the cause of my liver disease) in early 2011, I was able to return to the playa this past year. My return to the playa (my fourth because I was not able to make it in 2009 because I was still in ICU, and Melisa’s 9th Burn) included an appearance in Center Camp, and was a definite highlight of the past year.

During this long strange trip, it became apparent that people who love and care for a patient need love and support, too. With that in mind, Melisa (my sweetheart and caregiver) and I set out, with the help of our friend Winnie (who had a liver transplant over 20 years ago), to establish a caregivers’ support group. Because caregivers often aren’t able to leave their loved ones alone, we decided to conduct the group via tele-conferencing.

Today’s call will follow the format that we’ve found works best: introductions of the call’s participants, followed by our weekly spotlight, then our featured speaker will segue into a Q&A, and the call will end with a positive thought for the week. Each of these elements has developed organically, either spontaneously or in response to the needs of the group.

During our weekly spotlight, we focus on one of our members on an ongoing weekly basis. Specifically, the member we’ve been focused on has Hepatitis C and has started the treatment regime (a 48 week process), but being post-transplant, there are different procedures and considerations that require constant monitoring and response. Additionally, this member has been struggling with diabetes, which is a fairly frequent complication after receiving a transplant. This weekly focus has allowed us to follow a liver patient post-transplant and learn from their day-to-day challenges.

Our featured speaker changes every week, the prerequisite being that it’s someone with education and or experience from whom we can all learn. Speakers have included transplant recipients (both liver and kidney), living donors, medical professionals, caregivers, a life coach, and others.

Questions and answers arise spontaneously from the group in response to the spotlight and the featured presentation. Positive thoughts are prepared in advance by an assigned member of the group.

As we were getting the group started, we became aware that Burners Without Borders, with whom we had participated in a Habitat for Humanity building project north of Reno a few years ago, had grants available for grassroots programs. We applied and received a $300 grant. We were able to stretch that small grant and multiply it through our efforts.

The biggest challenge we’ve faced is actually getting caregivers to become involved. It seems that they are usually the ones that have to be strong in the care and oversight of their loved one’s medical journey, and as such, they often don’t see that they need the support of a strong group. As a result of this challenge, we ended up changing the direction of the group a little bit. Namely, we began to focus on education and inspiration, and accomplished that with the multi-faceted approach outlined above.

The grant that we received from Burners Without Borders was disbursed to speakers in the form of thank you gifts ranging from grocery store gift cards to music CD’s, depending upon need. The grant from BWB was our only source of funding this past year, and as such was not only greatly appreciated, but was partly responsible for our existence.

We are currently undergoing a retooling of the program and will resume our calls in January of 2011. We will be retaining most of the structure of the calls, but the recurrence will probably be monthly as opposed to weekly. Although many of the calls are focused on liver care, that’s only because those are the people we are primarily in touch with and that call in. We have also covered kidney transplantations pretty extensively, and we have had callers from throughout California, Nevada, New York, and elsewhere. Everyone is welcome to visit and participate in our group in whatever capacity they would like.

Return to present: today’s group will feature a living donor, who donated one of her kidneys to her best friend (photo attached). We heard from her friend, the recipient, last week. Today’s call will inevitably bring out new issues, especially since we haven’t heard from a living donor. I’ll spend the next half hour reviewing the agenda for today’s meeting and getting my mind focused on bringing out the best in our guest speaker and helping her present information that’s new and applicable to our group. After preparing, it will be time for the call, so it’s time for me to go . . .

In closing, I’d like to again thank Burners Without Borders for their support. Thank YOU for taking the time to check out what we’ve got going on. We’d be honored to have you drop in on the group and learn along with us. I wish you well, and I hope that 2011 brings peace and joy to the world, and happiness to you and your loved ones.

It’s a good day to live!

Brother Dan
www.caringbridge.com/visit/caregiversupportgroup
www.brotherdanpalmer.com
http://www.youtube.com/user/brotherdanpalmer?feature=mhum (Check out “Donate Life – Don’t Walk Away” – transplant recipients briefly sharing their stories)