First blog post

Ok, so a little background to get started. I was diagnosed with Lupus when I was 22 and those first 3 years were pretty rough with every organ having some involvement with the worst being my kidneys. At one point, I went into kidney failure and was told that within 6 months to a year that I would be starting dialysis and would need a kidney transplant. I was prepared for dialysis, had a catheter inserted and was waiting 2 weeks for it to heal and be able to use.

Well, surprisingly I began to get better….the doctors called it spontaneous remission and told me not to get excited. That was back in 1994 and well I never did need to start dialysis and I kept both of my kidneys until about 3 weeks ago:-) Somehow my spontaneous remission lasted well over 20 years. Over these years I continued to have issues related to my lupus but overall I had been able to live my life and move forward with my goals. About 2 years ago, I was told that due to “wear and tear from my lupus” that my kidneys were again beginning to fail and now transplant was inevitable. Life as I knew it was now put on hold while I began dialysis and started the process of figuring out how to go about finding a kidney. Somehow I lucked out and my brother decided to be tested as a donor and was found to be a match. It took us a year of testing, going back and forth with doctors and me working on getting healthier in order to have the best possible outcome for surgery but we did it! 3 weeks ago, I became the proud owner of a new “super kidney” so named by my brother:-)

I have to say that overall I am feeling great and cannot wait to be able to return to all activities and begin moving towards my life goals again. As this is just an overview I’m definitely glossing over the many, many concerns, scares, frustrations and daily thoughts that led up to today. There are so many things and areas I can go to with this first discussion and I’ve thought about what I wanted to say and I will get to that sooner rather than later. I want to give others the opportunity to share their experiences as well and to see that we are not alone even when we think that no one else can possible understand what we are going through.

I know I sent invites to pretty much everyone on my friends list…lol…but I also need to figure out how to make these posts public. I can’t promise poetry or that my writing, grammar and/or punctuation will be perfect but hopefully I’ll get my point across and it won’t be too painful to read:-) Thanks for coming along on this journey with me.