Well after all the confusion, I got an appointment with rheumatology last week! Apparently the weather caused some cancellations. Dad, Courtney, and I braved the weather and traveled to Lexington last Thursday. The Rheumatologist was incredibly nice and seemed very supportive of me donating my kidney to Mark. She stated that she could not really speculate about the accuracy of my diagnosis of skin-limited lupus from ten years ago. She mentioned several factors that would lead her to believe the diagnosis was inaccurate (e.g. no flare-ups since the original diagnosis; no flare-ups during pregnancy; no indications of lupus at present), but also mentioned several factors that would lead her to believe the diagnosis was accurate (e.g. I seemed to respond to the medication that is used to treat lupus when I took it ten years ago; the fact that I've been cautious when exposed to sunlight does not provide information about how my skin would react to the sun-an adverse reaction is an indication of skin-limited lupus). She said I had no clinical signs of lupus at present. She stated that the Transplant surgeon had really given her an impossible task in the sense that even if I had skin-limited lupus now, she can't predict whether or not I would ever develop systemic lupus. She also mentioned that having skin-limited lupus in the absence of systemic lupus does not rule out patients from becoming a living donor. She ordered additional blood work and an echo cardiogram (she thought she heard a heart murmur). Luckily, she was able to get me in at Gill Heart Institute the same day for the echo cardiogram. I have an appointment with her on 2/20/2009 to go over the results of the blood work and echo cardiogram. I would imagine at that point she will share her final decision with me regarding whether she will "clear" me for donating.
I titled the blog "persistence pays off" because in addition to the great news of completing the initial visit with the Rheumatologist, we received a notification in the mail today that my living donor nurse coordinator had scheduled me with the Urologist for 2/25/2009. This was the appointment we had heard was very hard to secure. So, we are thrilled that we have an appointment with this physician! It is starting to feel that things are once again moving in the right direction!
We are continuing to ask for prayer from everyone. Mark has been really fatigued the past few weeks. He actually missed work today due to fatigue and pain which is really rare. He has an appointment with his Nephrologist on Monday. We will post more information as we learn what lies ahead.