Our Journey Through ESRD
When my partner in life and Love, Chuck, was diagnosed with end stage renal disease (ESRD) we were devastated. We met with a peritoneal dialysis educator at the local Veteran Affairs hospital who described the process. She gave us a DVD from a big pharma company that had some “typical dialysis patients”. But it was like a sales pitch. So began my search to learn what will life be like?
I wanted to know what other people went through. I searched the Internet for blogs and was shocked that the only first person, diary-type accounts were by younger people and they were on commercial websites. I wanted objective information. What will it be like for people like us, 60-something young-at-heart people who enjoy travel and adventure. We wanted to be hopeful but we weren’t buying the all unicorns and glitter sales pitch of the commercial sites. I did find one first-person account in a blog entitled, “What every peritoneal dialysis patient should know”. It was dated 2005 and written by a young man in his 30s, Bryan Rollins, who had subsequently received a kidney transplant. I emailed him. I asked him about his blog, I wanted to know how I could emotionally support my partner. Again, “what will it be like?” The golden bit of information he shared was this: “I know from personal experience how hard it is to find a bright side – and sometimes the one thing I wanted to hear was not reassurance but acknowledgement that life was tough.”
Based on his response, and the lack of real information, I decided then that I would start a blog, a diary of what life is like from the diagnosis and the life changes it has required, through the surgery my partner faces to insert the catheter and what life on peritoneal dialysis will be like. Because my partner is a veteran, he endures the much less than optimal care at the Raymond G. Murphy Veterans Affairs hospital in Albuquerque, New Mexico. There is no emotional counseling, and, as you’ll read in this blog, the “care” is less than optimal. Surely, our brave veterans deserve better than this. So, this blog is also about the state of medical care for veterans. Probably, I will be doing most of the writing because, well, I’m a writer by trade and passion, and, at least now, Chuck is too exhausted and overwhelmed to do much more than make it through each day. However, Chuck says at some point he’ll post here too. So, this is our story and we hope it can provide some of the guidance we couldn’t find. Each evening Chuck and I have a toast. He says
To Another Day
Susan and Chuck