What's goin' on...

 Friends, family and everyone interested,

I'm so appreciative for all the well wishes in recent weeks, and I wanted to have a forum to share information about my disease and condition, as well as general information about Polycystic Kidney Disease (PKD), which is one of the world's most common genetic conditions affecting 600,000 Americans or 1 in 500 people. For a detailed explanation of this disease check out the PKD foundation's site.

I've always been open about this disease and how it has affected and continues to affect my family, and as the cure is yet to be discovered, raising awareness of PKD and funding for continued research is something I've been very involved in for more than a decade.

The short version of where I'm at now is that my kidneys are causing me a lot of pain and are losing function, so I'm looking at transplantation ASAP (from a living donor) so I can avoid dialysis and a 5-7 yr. wait on the list for a cadaver donor.

I first learned I had the disease when I was a passenger in a car accident at the age of 20 and a CT scan showed cysts in my kidneys. I knew this was a possibility as my dad and brother both were afflicted, but didn't really want to know as there's not a lot of health or lifestyle changes one can make to affect it's progression other than to take care of yourself, which I was. Three years later my brother Jim passed away suddenly from a brain aneurysm (a side affect of the disease), which was an earth shattering reality check on how serious this disease was. 

I was obviously deeply saddened by the loss of my brother. He was the one that encouraged me to stick with music when I was 12 and showed promise on guitar, without him I'd probably be a hobbyist musician at best. But the other big gift he gave me was priceless; his passing was a wake up call for me to live each day to the fullest, as if it could be my last, to follow my passion/dreams, and not to take life for granted. I've done my best to stay true to that every day since, and am deeply indebted to him for allowing me to see life from this perspective.

Fast forward two years later, my dad Fred (having moved to Madison Wisconsin for work) is in the end stages of his battle with the disease. He spent 2 years on dialysis and on the waiting list before receiving a kidney transplant and a double nephrectomy (having both of his kidneys removed). The transplant was a success, but the myriad of side effects and other health problems related to transplantation (and the fact that his kidneys were the size of footballs when removed) still plague him to this day.

It's important to note that not everyone with a parent who has PKD will get the disease, it's a 50/50 chance. There's also some people who's disease progresses very slowly and can live out there lives without a transplant. They've identified the gene that causes PKD, and there are several clinical trials in progress for drugs that could help to slow the progression of the disease. This knowledge made us consider very carefully whether or not to have kids-and we ultimately decided to-with the hopes that they won't inherit it, or that a cure will be found in their lifetimes. We now can't imagine our lives without them!

After seeing the struggles my dad was going through, and my continued surprise at how few people knew anything about this relatively common disease, I began work on my first solo album, Confessional, with all the proceeds going to the PKD foundation. I had played on many records over the years, and sung a lot of background/harmony vocals in bands, but this was to be my first foray into to the lead vocalist/singer-songwriter world. It seemed like the only option as I was so close to the disease and felt I could convey the emotion and struggle better than anyone. I was never the kid singing in front of the mirror, longing for the spotlight at the front of the stage–but that's where I found myself in a roundabout way.

Confessional was released in December 2004, and the sold out release show was at the iconic Sweetwater Saloon in Mill Valley. It was a venue I had played many times before in a variety of bands, but now it was billed under my name which was weird for sure. This would be the first of many benefit shows for PKD I organized and performed over the next several years, one of the highlights of which was a double bill with family friend and blues harp virtuoso Norton Buffalo. This was just a few months before his passing from lung cancer, and I'm so lucky to have shared the stage with him. Here's a vid from that show with him sitting in on my song My Great Escape.

Shortly after releasing Confessional, I continued to write songs. I'd always written music for bands but now the lyrics were flowing too. It became clear that this new direction was were I was supposed to go, and I haven't looked back. I still love being a guitar/bass player in bands, and there's a freedom to it that's a nice break from being the lead singer/bandleader/booking agent/graphic artist/promoter that's required of DIY artists in today's music business.

The first time I experienced any symptoms from PKD was 5 years ago. I was visiting my dad (in Portland at the time) and woke up in the morning with serious abdominal pains, which got so bad I headed to what would be the first of many trips to the ER in the coming years. These episodes would pop up periodically, sometimes with extreme pain and requiring heavy opioids and other times I could manage with Tylenol. Symptoms vary from person top person, but for me they're caused by cysts rupturing and bleeding.
 
So here we are in 2014, one week away from the official release date of my third full length album, March of Tracks. I just got back from a two week tour of the Western U.S., complete with a trip to the ER in Spokane, WA. This most recent episode is different than those in the past, the pain seems to be coming and going day to day. In Chinese medicine, the kidney are the body's energy source, and sometimes I feel completely drained in a way I've never experienced. 

Sarah and I had a 5 hour appointment at the UCSF transplant center last week as my numbers indicating I'm ready for a transplant. This was an orientation to the lengthy and complex process of getting ready for a transplant and also the beginning of the process of testing Sarah as a potential donor. I'm optimistic as even if she's not a match for me, she can donate into the donor exchange program where her kidney goes to someone who is compatible, and then I receive one from a compatible donor to me in exchange.

Your concern, support and love have been increasingly touching as this process continues. And I wanted to put this information out there to clarify where I'm at. I keep getting phone calls or messages where people say "hey I heard you got a transplant" or "when do you get out of the hospital" so I thought it'd be good to get the right info out there.

As much as possible I'm not changing any of my plans going forward until it's absolutely necessary. I'm continuing to teach, keeping all the gigs on my calendar (and booking more), and not feeling any fear or trepidation about what lies ahead. I've known for a long time that this was a strong possibility, and that there's nothing I can do to prevent it. I am as comfortable as can be with what's to come and know that it's all for a better quality of life going forward.

Again, I'm so appreciative for everyone's support and love.

Sincerely,


Jesse Brewster