Last week came and went so fast. Dr. Alam made me a doctors appointment with Daniel Coyen, nephrologist, in St. Louis. We began to make all the preparations to go and watched the weather. Saturday morning we decided it was best to leave and try to stay ahead of the snow, sleet and rain. We were really surprised to find that the snow was worse here at home than it was almost all the way to St. Louis so Joe decided to take a detour to Bass Pro Shop in Springfield. When we got to St. Louis there was the snow and mounds of plowed snow.
We stayed at the Drury Inn downtown across from Union Station and we got there safe and sound. Sunday we awoke to snow flurries and slick roads. But laid around the hotel room until afternoon and we couldn't stand it any longer. So we looked up Cabellas, a big time sportging goods store for those of you who don't know what that is, plugged it in to the GPS and off we went. After about an hour plus in there, Joe decided we should start back. In normal weather it's about a 20 minute drive from our hotel but on that day it took us longer - a longer time than we wanted to be on the road. Cars were slipping and sliding and one in front of us went across all 4 lanes of traffic doing a 360 and never hit another car. My heart stopped and I never was so glad to get back to the room.
Monday we awoke to sunshine and above freezing weather. We hung around the hotel to about noon and then we took off to the medical center and were we impressed. Washington University Medical Center is a huge place, with building after building, hospital after hospital and lots and lots of people. We made it to the clinic where they have valet parking because there are so many people coming and going and it's just amazing! We grabbed a bite to eat in the hospital cafeteria and then made our way up to the 5th floor. We were there at 2 and my appointment was at 2:30. I registered and went immediately to leave a urine specimen, and pray tell, why did I go to the bathroom before we went to the 5th floor. It wasn't much of a specimen but evidently it was enough. When I came out, Joe said they had already called for me to go to the back so in in about 2 minutes she was back to get me.
I weighed (yuck) in, height measured and vitals taken and put in an exam room before 2:10. The nurse practioner came in to talk to us and tell us what all we could expect from the office and just how the visit would go. She no more got out of the room when a doctor came in. He wasn't an intern but he was a "fellow" training under Dr. Coyen. He had all my records, had gone over them, had questions for me concerning a lot of what was in the reports and in general. Then he went to meet with Dr. Coyen and they went over information and then they both came back into the exam room. Dr. Coyen is in late 40's or early 50's and very personable and talked to us with laymen language. He allowed time for me to ask questions and I had lots of them. We were out of there by 4pm - AMAZING!
The final outcome was basically what Dr. Alam had already told us. The diagnosis still stands. There is very little information on this disease because it is so rare and very little research done. The treatment is chemo or high doses of steriods - in other words kill my immune system. My kidney function, at this time, is not that bad, and he thinks doing something so drastic may do more harm than good. Since my main problem and concern is my high blood pressure. He said we must work on getting the bp down and holding it down because the longer it stays high the more damage to my body it can cause. He said he would work with Dr. Alam and the goal is to get a normal bp, watch the kidney function and the creatine level and until the kidney function starts to go down and/or the creatine level starts to rise we would not treat the disease. He said I might stay at this stage for years or it might start to change soon no one really knows. I looked at Joe and said leave it to me to get a rare disease and Dr. Coyen said well, it could be worse and we could name it after you. I told him I just didn't think "the Gay disease" would get it. He actually laughed really hard, looked at his colleague and said I think we already have a disease by that name! Oops! Yep we do!
I feel comfortable with what he had to say and confident with the decision to just watch the kidney function and to treat the high blood pressure.
Prayers, and there have been lots of them, have been answered. Our God is an awesome God!
I will continue to post and let everyone know what is going on.