July 8, 2010 - Health update

Good afternoon everyone, Its been a while since I journaled my health situation.  I want to keep you abreast as to whats going on with me.   I decided to get my CT scan done that my primary dr ordered.  She ordered CT with and without contrast.  I received many updates from my PKD friends on DS and my nurse educators, Mary and Renee.  Everyone said to NOT get the contrast due to my kidney function.  So, I went through without contrast.   I got there and had to drink the barium drink that tasted terrible.  LOL!!!  They kept on talking me into getting the contrast dye but I refused.  About 5 days after the CT scan, my primary called while I was off at home and told me that I have cysts on the spine and back of the skull.  she was kinda being a bully about why I decided not to get the contrast dye.  That wasn't fair.    I was so upset about the whole situation so it kinda ruined my morning off. I did managed to do some rollerblading when I was up to it (see previous journal).  They ordered a bone scan done.  I was fortunate enough to have it done at my hospital in our nuclear med department.  I went up to get the radioactive dye, 3 hours later I had the bone scan.  Do not worry, my PKD friends - I tolerated the radioactive dye well and flushed myself with a ton of water.   My primary dr also ordered some additional blood work so I went to our labs to get this done.  I waited until Friday afternoon to get this done (the bone scan was done on Wednesday I wanted to wait until I got all the radioactive dye out of my system).  After my urologist fiasco, I talked to one of my other nurse educators, Michelle and she was gracious enough to give me her fathers urologist.  Apparently, she said he went to that urologist and wasn't happy with him either.  I went to see him but I could not take a urine sample because I had gotten my period a day before and they were ok with that.   I had my mother with me.  We went through the bone scan and he definitely said I have PKD and that I have cysts on the spine.  He referred me to an oncologist who will probably want a PET scan.  At first, the urologist did not understand why I didn't get the contrast dye CT but when we talked further and he asked about my #'s, he understood my reasoning.  My primary dr probably cannot order one due to the HMO rule and the Urologist or Oncologist would be able to do that. This urologist was great and seemed happy with him.  He was telling nothing that I already know (thank you PKD friends!!) and was stating the same things as my nurse educators and my PKD friends were saying.   I still walked out of there with a smile on my face.  He comes highly recommended.  Anyways, I went to the oncologist last week for the 1st time.  Seems very nice, recommended by the urologist.  Looked over the bone scan results and felt the PET scan isn't the way to deal with this.  He feels that to put me through the "bottomless pit" of tests isn't the answer.  Instead, he took 6 viles of blood and tested me for about 12 different things.   Including a few diseases, lupus, leukemia to name a few.  Other things were tested but I cannot recall them right now.  I had my mother with me but it seemed like he was talking to her instead of me.   I just got back earlier this afternoon (I went by myself so he can talk to me and not to my mother, I will call her later she and my father are packing for their trip to NC tomorrow) and it turns out that although the rest of my blood tests seem pretty unremarkable and normal with a few slight irregularities (he is not concerned). he said that my cancer marker is off the charts.  He said that the marker should be 36 but its 50.   So...he is ordering a biopsy of the spine to be done within the next week then I will see the oncologist for those results.  I don't know when I will be going, most likely done at my cancer hospital since I am still a standing patient of theirs.   This summer is getting really frustrating with all these tests and dr visits.  It seems like very week I am doing something.  Will I ever have a break longer than 2 weeks with this stuff.  I have yet to see the nephrologist, thats not until 7/29.  He has all my test results, he just needs to meet me now.
Thats it for now.  Again, I am so sorry if I neglected to tell you all about whats going on earlier but its been such a whirlwind situation that I didn't have a chance to mention anything.