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Daniel’s Story

Welcome to our CaringBridge website. We've created it to keep friends and family updated about Brother Dan and Melisa, his sweetheart and caregiver. Get started by reading the introduction to our website, My Story.

Visit often to read the latest journal entries, visit the photo gallery, and write us a note in our guestbook.



Greetings!

I'm Brother Dan, a singer/songwriter, from Northern Nevada. I've been traveling and performing throughout the US from a young age, and began performing internationally about three years ago.

I was diagnosed with Hepatitis C in 2004, but was unable to find the right doctor, and was told not to worry about my condition by at least three different doctors. Through my own research I began a long-term diet regimen of organic foods, herbal remedies, and liver cleansing, while I continued to monitor my liver enzymes through periodic blood tests. Things improved markedly and it seemed as though all was well.

In May of 2009 all of that changed. I suddenly began to swell with fluid, and developed conditions known as pitting edema and ascites. I began visiting a homeopathic doctor, spent a  lot of money there, and didn't get any better. I eventually entered the hospital via the emergency room. The doctors there informed me I had cirrhosis and gave me 6 to 9 months to live, then discharged me. I began being "tapped" on a regular basis, which meant they poked a needle into my abdomen and drained fluid out of me, as I ballooned from my normal 185 pounds up to 245 lbs. I had as much as 15 liters of fluid drained at a time.

During my third hospital admission, I began bleeding internally, and had to be resuscitated three different times. When I was eventually discharged, there was one doctor that held a glimmer of hope for me, and told me to contact UCSF in San Francisco. UCSF doesn't accept Nevada Medicaid (which I had finally qualified for after a four month wait), and referred me to California Pacific Medical Center, who does accept it. I was also informed of my true diagnosis, which is end-stage liver disease.

In early September I went to CPMC for a two day liver transplant evaluation, but they admitted me to their facility and I wasn't discharged for three weeks. Test after test, including a liver biopsy and finally a TIPS procedure (trans-jugular inter-hepatic portal shunt) wherein they poked a hole in my liver and inserted a mesh tube to help the blood flow, reduce the ascites (abdominal fluids), and relieve the back pressure in my blood vessels that caused the internal bleeding (esophogeal varices). The downside is that I now occasionally experience encephalopathy. While in and of itself "E" is not life threatening, it's no fun AT ALL, for me or my caregiver, Melisa. (Links can be found in journal entries.)

At this point, I'm paying close attention to my diet, tracking my intake of protein, carbs, salt, and fluid. The "E" has put me back in the hospital a couple of times (I was in a coma for three and a half days once), but the doctors, Melisa and I are working hard to find the balance that I need to remain stable. In the meantime, I'm not able to drive or work, and a liver transplant is my best hope for a return to a "normal" life. I need to be within six hours of the transplant center at any given time in case I get the call that they have a new liver for me, so my travel has been severely cut back as well.

Now living in Sacramento, I'm a couple of hours away from most of my family (athough my sister lives in Sac) and my friends. I depend upon Melisa as my caregiver 24/7, which means she hasn't worked for months and as we're on our own, we're slowly sinking financially. (Social Security Disability isn't all it's cracked up to be!) I'm depending on the goodness of people to help me stay afloat financially (donations can be made to the "Brother Dan Medical Fund" at any Bank of America branch), and I depend upon the internet to keep me in touch with the world.

If you'd like to sign my guestbook, I'd love to hear from you. Stop by often, as Melisa and I both make entries to the Journal fairly regularly, and you can keep up with my current condition and all the new things we're continually learning. (See the journal for links to articles about encephalopathy, MELD scores, and an upcoming discussion about ECD livers.)

You can find more info about me, purchase cd's, etc, at www.nothingbetterthanthis.com www.brotherdanpalmer.com as well as at www.myspace.com/brotherdan2 and view videos at www.youtube.com/brotherdanpalmer 

Thanks for stopping by. Thanks for your love and support, and I hope that the New Year is better for all of us.

Brother Dan

Latest Journal Update

Happy New Year to you and yours ...

Hi friends -

It's New Year's Eve and I'm thinking of  you. There's not much going on health-wise right now, which is good news. I'm feeling well enough that we're actually considering a trip to Reno this spring, probably in April, which is national Donate Life month.

We have plans for a very special event, so I hope to be there in person, hosting and making a special guest performance appearance during the event.

At this point, about the only thing that will prevent us from making the trip is a worsening of my condition.

That brings me to the reason for this posting. Many of you have become aware of a condition called hepatic encephalopathy (or HE) through my writings here. HE has put me in a coma three times, and thanks to Melisa's vigilance, I narrowly avoided a fourth coma in December of 2011, although I wasn't able to avoid the ambulance ride and an overnight's hospitalization.

I came across a great article on HE today on the New York Times website, and instead of writing yet another post about it, I encourage you to click on this link and learn about it from a different viewpoint:

http://health.nytimes.com/health/guides/disease/hepatic-encephalopathy/overview.html?inline=nyt-classifier

With that, I'm off to enjoy the day, which is sunny but cool here in St. Pete Beach. Stella needs a walk, and so do I.

I wish you peace in the year ahead ...

Love,

Dan