Thursday, August 7, 2008
More on MUSC....
First...can I say I love fountains! My hubs and I found this on the way back to our hotel in Charleston. We were taking a short cut through the outdoor gazebo-like area of another hotel. It was beautifully lit. I was very tempted to take off my shoes and run through it.
Well.....I am still waiting on the MUSC transplant team to call me. I wish they would. I am anxious....I think my sister is even more anxious than me. She wants to be first in line to see if she is a possible donor. She is in California for her job this week, but will be back this Saturday. She will be staying with us for the weekend before she heads home to Tennessee. My oldest tater tot turned 4 yesterday and we are having a big diego party for him on Saturday.
At MUSC I talked to Dr. Alan Brown (rhuemetologist) and he was familiar with renal involvement with Sjogrens. I liked him immediately and so did my husband. He was not much older than us and wears a bow tie to work everyday. He was a Clemson fan too. Also, he is good friends with the Doctor that delivered my first son and who I see at work occasionally. (I work for a hospital...I am a certified lactation educator and work in a mom/baby boutique and also fill in at the cancer center boutique. I am in the process of getting my certification in fitting for prosthesis for breast cancer survivors too). We went over all my symptoms and he checked me out. He spent about an hour with me. He answered our questions. He was very honest on his prognosis....which was to basically save my energy for the big autoimmune drugs for transplant. He wanted to talk to my nephrologist at MUSC about it more in detail. He gave me a note for her to page him at her convience.
I saw Dr. Rachel Sturdivant (nephrologist) at MUSC next. I had to get some lab work done STAT. The normal blood tests and pee in the cup. She was not much older than me and a mom of a toddler too. I explained that I had two toddlers and wanted to do whatever was needed. I also liked her a lot. She went over my history of CKD and Sjogrens with me and checked me out from head to toe. She then told me that if my kidney function was around 30 or 40 we would try the bigger autoimmune drugs. Since it was 17 (it went up a point from 16...hooray....the Doc was quick to point out that it was probably a fluctuation of the labs) that it was past the point of trying that and I should consider going straight to a live kidney donor transplant. She explained that a live donor would work best for me. Studies have shown (I verified this online too) that my chances to live a normal life would be best if we could hold off dialysis or even prevent dialysis from ever happening to me. Don't get me wrong...dialysis is a GREAT option for some people.....just not for me at this point. She told me she would refer me to the MUSC transplant team and they should call within the next couple of weeks.
Now....we are waiting for a phone call. I have many questions....from the transplant to the financials. One HUGE difference I noticed was that these Doctors were not irritated and they did not talk down to us because of all the questions we had. My new local Rhueme is good about this too. She doesn't mind questions. I feel like we are heading in the right direction.
I'll post some fun pictures of Charleston on the next post!