Yesterday I saw my dermatologist. I wanted to update her on the what had happened, and the potential link to the minocycline (minocin) she had prescribed me. I respect my dermatologist and have been seeing her for years, if not more than a decade. She is the kind of doctor that always takes her time with you and wants you to be comfortable with everything. She does extras. And asks about your daughter and dancing. And at the end of every single visit asks, “Do you have any other questions or concerns?”

When she came into the room, I could see the look of concern on her face. Her assistant had given her the update I had just shared for my file to be updated. She apologized and was genuinely shaken by my recent health issues. We went through it again and she was astonished at the potential link between the antibiotic and vasculitis. And then this is why I still maintain my respect for her, as many people have asked how I have felt having a doctor prescribe me this medication, that could be the culprit of this all beginning.

She handed me a package of all my health history related to this disease from Alberta Netcare (my electronic health record). I actually heard angels singing and felt the sunbeams shine down on me as the clouds parted above when the papers reached my hands. INFORMATION All the information that was said to me over the weeks in layman’s terms, second hand, was now available for me to read on my own: My discharge papers and summary. Lung capacity test results. Details of the lung biopsy surgery. The two pathologist reports. Pure gold. This is what I was wanting throughout. And now I have it. She said that she thought it might help somehow. I shared with her that this was exactly what I needed and how appreciative I was of her doing this for me.

Then we talked about my dermatology treatment going forward. Obviously we are staying away from the minocin, or any other oral or topical treatment. The skin on my face isn’t horrible now for breakouts, but the prednisone has caused flare-ups on my chest and back, which I have never had before. So we are going to use blue-light therapy and microderm abrasion. Both of which should have no interaction with my current medications. And I am content with this plan.

But let’s get back to my Holy Grail of the Glitter Lung. It’s really hard to describe my emotions while reading through the information. I was excited to have it all written out and in report format to refer to, but nervous I would read something that they hadn’t shared with me. I had to do a lot of definition searches for certain medical terms too. But somehow I feel more empowered and prepared with this little package of information. Lots of questions were answered. And it was fascinating to see these doctors writing and signing off on reports about me.

When I came to the biopsy surgery report is when the tears started. Just reading the step-by-step procedure and imagining me as they described it, “The patient was then turned and placed in the right lateral decubitis position.” seemed like an out of body experience. Because this all happened to me. But I have no recollection of it. And that was hard to wrap my head around. But the report did explain why I was told I would have four holes and then only had three afterwards. So little things like that I really liked reading. I was getting answers.

I’m not going to go into details of sharing it all. As open as I am with things, for some reason, this seems extra personal to me, that I want to keep close. But I do want to share a few things that I smiled at while reading.

1. From the bronchoscopy report: Initial sedation was with fentanyl 75 mcg and midazolam 3 mg, but she required a total of 100 mcg of fentanyl and 5 mg of midazolam for adequate sedation. Ummm, is this when I was “waking up” at the end and you kept telling me to, “Hold on! We are almost done!”

2. From the lung biopsy surgery report: At the end of the case, sponge, instrument, and needle counts were correct. Ok, good. Nothing was left inside of me by mistake. 

 3. From the second pathologist report: Thank you very much for forwarding this very interesting and challenging case. … Once again thank you very much for the opportunity to review this very interesting and challenging case. If I may be of further assistance, please do not hesitate to contact me. Awww, you’re welcome!! 

Information. I effing love it.  

  

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