Prior to my appt, I went to the blood lab to do some blood work that I was supposed to do a couple of weeks ago of my up and coming oncology appt.
When I got to my appointment, I spoke to a fellow first before seeing my actual doctor. I contemplated emailing the home hemo secretary and telling her that I had no interest in speaking to a fellow today, but I decided to just chance it. Perhaps my doc would be the only one there...and if not, i'd simply say that I did not want to speak to a fellow. When I did get called in, I realized that the fellow I got was a doctor that I had spoken to before and actually liked.
We chatted about what was going on in my life health wise. I gave him a brief rundown about how I was supposed to have a transplant, and then the hemoglobin prevented it, prompting another visit to the hematologist, etc etc. I also told him about the pain that my avascular necrosis is causing me.
He asked me what I was doing to control the pain: I told him nothing really, which is true. While I do have the codeine and such sitting in my medication bucket, I rarely use them. In fact, I think I've probably used one maybe 2 times this year. I explained that I didn't want to become...one of "those" people who are prescribed and take codeine for a particular reason...then they get so used to the feeling of being without pain...that they become addicted to it or something. I personally don't think I'm the type of person who would abuse drugs or anything like that, but I also believe that many of the people who are prescribed medication for pain after a accident or what not don't believe that the are either. I'll admit that I have a pretty high tolerance for pain, but this particular pain is affecting my quality of life.
The fellow (his name is Simon) asked me if I had taken regular tylenol (ie. extra strength). I told him that I did, but it did not seem to help me too much. Simon suggested that I take 2 extra strength tylenols 4 times a day, and if I was in a particularly high amount of pain, I could take 1 codeine pill in a day. I agreed to his suggested regimen. We also discussed the appointment I had back in January with the orthographic doctor, and that doctor's suggestion that we hold off on surgery. Simon agreed with what I told him the doctor had said, however he said that at some point, it's a question of whether or not this pain is affecting someone's quality of life..and when I feel that is happening, it's time to demand the knee and/or hip replacement.
Simon brought up a note that was written in my chart about me possibly speaking to the home hemo social worker. The last time I was at my nephro/hemo appt, I told my nurse Rose that I would let her know when and if I wanted to speak to the social worker. I really didn't feel like it at that time. Simon asked me how I was feeling. I told him how I felt; I was so close to transplant (the closest I've ever been...this is the first time I had a specific date) and then my whole world came crashing down with this myeloma news. He told me that it might be worth talking to the social worker about it. Simon is very kind/great.
Simon left and came back with doc Richardson, my nephro. He gave Dr. Richardson the rundown of what we had discussed. Doc Rich brought up something very interesting that peaked my interest. He told Simon that he had another patient, with Lupus and renal failure, who had the same strange protein(s) in her blood that I had, and she had these proteins since 1994. She did go on to get a transplant which she had for a while. She is back in dialysis (I'm saying"is" as I am not sure if this lady is still around anymore). In her case, these abnormal proteins, as far as they were concerned, just seemed to be some strange manifestation of lupus...and did not seem to develop into anything further. Pretty interesting, huh?
When all was said and done, my rocaltrol (0.25 mcg daily) was reduced to 0.25 mcg 3 times a week. Hey, less medication is always good I think.
So now, it's the waiting game for my appointment with my oncologist again...and we'll go from there. It might be worth looking at this other lady/patient's blood work and see if there is any way it can be compared to mine. This gives me a little bit of hope.