It has been busy here for me. I finally have an appointment with a dr. to hopefully get my hernias fixed. And after hours and tons of paperwork I am getting into Mayo Clinic in Minn. on Dec 21st. The appt is set but... after reading the packet that came, appts are " typically 5 - 7 days, excluding weekends and holidays". Dec 21st is on a Friday before Christmas, I just cant see BlueCross ok ing me to be inpatient for testing. I have had all scans recently done. My appt is for 7:00 am. Now my task is to figure out how to get there. Katie says we can drive it but I am afraid of hitting snow and traffic and getting stuck somewhere on the other side of Chicago. Amtrak and Greyhound will be the same length of time. I maybe able to have some fun on the ride if I plan it out right ( I keep thinking of Dr. Lectors' special lunchbox )
As most of you know, I had my 3 rd visit to NIH in early November. I only had partial testing this time due to the amount of radiation that I have already recieved this year in previous tests. I had a new dr this trip and from the moment I stepped in the room the visit went down hill. Either my other dr did not take good notes or this one was not prepared. The new doc is at least understandable and sometimes that is half the battle in getting quality care, at least in my book. I cant do what they want if I can't understand what they are saying.
Make a decision and stick to it. Not flip/ flop around. I had my usual round of lots of blood work and 24 hour urine testing. My normets levels are really high and red count is creeping back up. I wasn't set to see a hematologist this time so the blood issue needs to be addressed locally. At the time of my visit there my scans had only been glanced over and not too much had changed from my last set of scans.
A week ago the dr. at NIH called me. Apparently they decided to go back and review the tests again. In April something was showing at 4. In Julys scan it was 8 and now on this scan it is a 12. The call was for me to get into a urologist as soon as I could. On the scans it looks like something is growing in my bladder. I was able to get an appt with the urologist that did last years surgery and I had a cystoscopy done on Monday. The dr. is not sure what it is yet, but Dec 12th I am going into the main U.H. hosam having problems with NIH still with all of the drs being on the same page. It seems from visit to visit what they want changes. It is either yes or no. They need to make pital to have it either biopsied or removed. Since the dr. does not know what it is I have to have it done where a full trauma team is available in case it is another pheo. That also means I need to be on the proper medication to be blocked. The dr called NIH and talked to Dr. Pacak and NIH wants samples of what ever this is.
So just when I thought things where finally getting back on the right track I guess my train is taking another detour somewhere I wasn't planning on going and I am sure that whenever, whoever said " enjoy the ride " this isn't what they meant