George Brown
12-14-2005, 06:20 AM
Hello everyone, I just wanted to update you all on my current condition. On Sunday Dec. 4, I was admitted to the St. Vincent's Medical Center Emergency Room. Some of you may remember that the First Cystinuria Symposium was held there last July. I had developed a severe blockage on Saturday Dec 3, blocking my left kidney. Dr. Grasso informed my on the phone Sunday afternoon that he had 12 hours of surgery already scheduled for the next day but I had to come in. As I got through registration the Surgery Resident was talking to my good doctor on the phone letting him know what he wanted done. Once I became comfortable in the ER Dr. Grasso's chief resident came down to see me. They had scheduled a CT scan to see what was going on. I was informed that I had a good size stone. While laying in bed on Monday morning Dr. Grasso's team came to see me and said that they were going to try to squeeze me in his schedule. I signed a release form and went to sleep. The nurse woke me up saying that the OR was ready for me. I didn't even have time to call my wife, Barbara, who was back at home. When I saw Dr. Grasso in the holding area he informed my that my creatine level was 3 and climbing, and that he had to do something. I was wheeled into the Operating Room, given general anesthesia and had a stent placed or wedged under my stone to keep my kidney open. Once my creatine levels started to return to normal ranges I was released on Tuesday to come back for surgery on Monday, Dec.12. When I arrived on the 12th I was taken back to the holding area, talked to a few nurses, the anethesiaologist and was walked back to the OR. I was hoping that I could have the laser passed up through my urinary tract and was informed that was the procedure that was going to be used if at all possible. My stones always form in the lower pole and can very rarely reached by the laser even in the hands of an expert. Since my stone was sort of held captive by the stent around 9AM the procedure started. I awoke in the recovery room at 11AM with no tubes in me, no pain in the back feeling good. I was later informed that my stone was not quite the size of a golf ball, more like a ping pong ball. To all of you that were at the symposium I went on Dr. Grasso's oohs and aahs trip up my ureter, bladder, urethra and into my kidney. I only wish that I could have been awake for the journey, but I always tell them to knock me out so that I don't know when they roll me over and do the percutaneous operation. I went back to the holding area where my wife met me and we exchanged amazements at how I felt and looked. Not everything went normal though, that wouldn't be me. It was a expected that I would be released around noon, but I couldn't void. I drank 64 oz of water, 16 oz of soda and 24 oz of juice and still nothing. I was becoming extended and they called Dr. Grasso who said the might have to put in a foli catheter in me. During their conversation I passed too cc of bloody urine. I later passed 200 cc more in a short time. Around 4:30 Dr. Grasso's team came to see me and assess my condition. It was determined that I passes enough urine and the color was getting fainter so that I could be discharged. At 4:45 we walked out of the hospital, grabbed a taxi to the Port Authority bus station and made the 5:25 bus home to Pennsylvania. Traffic was horrendous and of course I had problems on the bus, visiting the restroom 3 times in the 2 and 1/2 hour ride home. I now have started to do a few things and I am feeling much better. I return to New York City on Tuesday Dec. 20 to have the stent removed and to start carrying on a normal, so to speak, life again. Dr. Goldfarb my nephrologist and I have spoken and I will soon start taking D-pennicillamine again after being on Thiola for over 25 years. For some reason it doesn't work for me anymore even though I was taking 30 tablets daily along with the Urocit-K.
I URGE any of you that can get the laser done to remove your stones to do so, it was a fantastic voyage even though I was asleep I can vision it just the way it is on the video that was taken at the symposium anmd is in the 3 set video that is for sale at www.cystinuria.org
George Brown, thescnd1@verizon.net correctly diagnosed in 1961; Co-incorporator of the International Cystinuria Foundation (ICF), Vice President and Board of Directors of the ICF; www.cystinuria.org long standing member of the Cystinuria Support Network. Participated in protocols for both D-Pennicillamine and Thiola. Organizer and coordinator of the First Cystinuria Symposium, New York City, 7/16/05..
I URGE any of you that can get the laser done to remove your stones to do so, it was a fantastic voyage even though I was asleep I can vision it just the way it is on the video that was taken at the symposium anmd is in the 3 set video that is for sale at www.cystinuria.org
George Brown, thescnd1@verizon.net correctly diagnosed in 1961; Co-incorporator of the International Cystinuria Foundation (ICF), Vice President and Board of Directors of the ICF; www.cystinuria.org long standing member of the Cystinuria Support Network. Participated in protocols for both D-Pennicillamine and Thiola. Organizer and coordinator of the First Cystinuria Symposium, New York City, 7/16/05..