Steven went for his PCR earlier this month. The onc called on Wed evening to tell me that "two of the three tests were negative and the third 'only a little bit positive'". I confirmed with him that it was a quantitative PCR we were talking about, he said yes and said that the results of 'the third test within the main test' was 0.019% and asked whether we had a suitable bone marrow donor....
At this point I just asked him to fax me a copy of the results this morning. A blank fax came through so I asked them to re-send. By midday when I had not recd them yet, I called again. They were obviously irritated with me this time saying that the results would be faxed today. By 4.15pm (they close at 4.30pm) when I called again, they said that the doctor had not signed off on the results yet and thats why they could not send them. I corrected them, giving them the info that he had indeed called me the day before and they had tried sending it already this morning. I was assured that the results would be faxed immediately.
Each time I called them, I clearly identified myself, not that its necessary as my accent gives me away every time, and gave them Steven's name too.
Finally, the fax came through. The results looked ok for CBC (not a PCR!) BUT the REALLY big problem is that they sent me test results of someone else!
The name, DOB, test date, type of test, name of doctor and patient number on those results are all of someone else.......
I immediately called them but the office was already closed for the day. Tomorrow is going to be interesting, by the looks of it.
I am not worried about the actual test results - just very concerned about this process of getting a copy of the results - or rather, not getting copies!
Will update
Xx
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3 comments:
Hi Annie - just found your blog. As a recent CML diagnosee (is that a word) I found that the hardest conversation I had was telling my mother. So I am finding it very comforting reading your blog and trying to understand what my mum (and other friends and relatives) might also be going through.
I know if my little boy was diagnosed with something like this I would be a complete shambles, somehow it is slightly easier when it yourself that has the problem talking about it.
looking forward to reading your blog, and what ever you do don't ever give up hope, this thing is curable and living is what we are all here to do.
G'day Annie,
Just found this link from Rob's CML Blog and I thought I'd take a look.
I was also diagnosed with CML in Oct 05...I'm doing well on Gleevec but will probably be moving to Nilotinib next week as my PCR hasn't quite snuck under 2% yet.
It's the attitude you take that will help you overcome this. Keep positive!
Take care, Matt
www.matthewsinclair.blogspot.com
Hi Rob
"diagnosee" is definately a word! I call those types of words "Annie-words" - we are all allowed to have them :-)
Thanks for your encouragement and please give your mom an extra hug from me.
I really do believe that one day we will celebrate the cure for this.... In the meantime, I am glad that the scribbling of my thoughts help some.
Love and Light
Annie
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