To all of you thank you so much for your input. I am now on day 6 since my last treatment and still dealing feeling rough. It has gotten better but I am still not able to go back to work.
On another note I did meet with my Uro doc yesterday, and to say the meeting was not good would be an under statement. When I sat down with him the perception he gave off was he didn't really have time to talk with me. When he asked what all was going on he cut me off after about two sentences into my telling him what kind of pains I was feeling. As well, he did not "remember" me having the same issues back in November, which we also discussed after that treatment about lowering the dosage (well come to find out he forgot to write that down and the dosage they gave me last Thursday was full strength). He then went on to say in a condescending tone that patients should expect some pain and discomfort with BCG treatments, which to me felt like he was telling me too suck it up and quit being a baby. Yet, he had not let me even tell him all of my symptoms and what amount of pain I was in. Then he asked me when I had my last BCG treatment (which was last Thursday) and what number this was of the series (it was number 1).
On a side note, I was astonished that with the issues I was having he had not even looked through my file to already know the answers to those questions. Again before I could say anything else he said that he thought the best plan of action was to quit the BCG treatments all together. (WHAT!!!) This definitely concerns me, I asked him if stopping the treatments early and not continuing the maintenance plan would increase the chance for recurrence. He said yes it could, but he did not feel that the likelihood of recurrence was very high. I then brought up the discussion we had before about reducing the dosage as I had read many people that suffered similar pain issues as me did not have issues with a reduced dosage. He said that even if he reduced the dosage to half I would have the same pain issues and basically waved it off as an option. I then asked him what would the plan be if six months from now or a year from now I had a recurrence.He said that there was other treatment options, he didn't expound on the answer, so asked what other options? He said other chemical treatments, and then immediately went on to talking about scheduling me for my next cysto, and he would see me then. He then got up and left the room.
Well, as soon as I walked out of there I made the decision I am done with him as my doctor. Patricia, I took your recommendation and called Clarian, I have an appointment set with Dr. Koch on May 19th. I look forward to meeting with him and getting a second opinion on continuing my BCG treatments or looking into a different option. As well, I want to know what is going on with me. As prior to my traumatic cath at the hands of a trainee I was not having any issues with my BCG, since then it has been a nightmare. I want to know if she did some permanent damage that the increased pain from the BCG's can be linked to.
As well, I have also recently developed pyogenic granuloma. I had two spots from cuts I got on two separate fingers. One I had to have removed the other (smaller) went away on it's own. The reason I mention this is I am wondering if this is not causing some the issues I am having with my bladder. Any body else run into anything like this? Or know if it could be related to the BCG treatments?
Again thank you all for your input and your kind words. It has definitely helped me become more educated and given me a great place to come and ask some questions and talk about concerns. As well, it is nice to know that I am not alone in dealing with the issues/pains/etc. It is hard to explain some of the things I am going through to someone who has not experienced it, but here on this board I can truly find understanding and honest advice. I am greatly appreciative to all of you for that.