Brain MRI Results and an Update on Medicines
I checked the status of my Posaconazole this morning and it showed a delivery date of November 1st. I wanted to see if I could get it overnighted as I've done that in the past when I really needed a medicine and was going to run out. The first woman I talked to said there was nothing she could do other than to charge me $20.00 for the service. I wasn't happy with that, as in the past, it's always been free of charge. So, I called again a little later. This time I got a woman who was very happy to help me and she was able to cancel the shipping and have it shipped sooner. Now I just need the Prevymis, my CMV med, to come within the same window of time. I saw it was already shipped so I'm hoping by Monday or Tuesday I can start treatment for the Aspergillus.
I also texted my infusion nurse this morning to see if she knew I would be going on IV antibiotics. I called around 9:30 and she said she could come by 10:30 to access my port. Soon after that text, I got a call from the infusion pharmacy saying my meds will arrive by 1:15. My coordinator called me today, right after I texted the nurse. I had wanted to
know about the brain MRI I had and what the nodules were actually from in my lungs.
She told me the Brain MRI looked fine. I probably should have inquired a little more about this. I know in the past it showed a Ratheke Cyst, but I also know they can be rather benign as long as they don't grow. She told me that the nodules were an infectious reaction from either the aspergillus or the psuedomonas.
When my nurse arrived, she said she was happy I called early so she could fit me in. I was just glad she got the ball rolling so quickly for me. She said work has been a little slow as she has many hydration patients and they were all told they couldn't be helped as there is a saline shortage due to the Baxter plant being flooded from the Hurricane in South Carolina. I had no idea. She said they make 60% of the saline there for the US. I'm just glad I was able to get my medicine. The nurse was asking me about my new med doses and changes and she reminded me I usually do vancomycin to prevent C. Diff. I really don't like taking vanco as it does give me a bit of diarrhea but we'll see. So, I once again emailed my coordinator. She must be sick of hearing from me by now! I feel like I've emailed her 20 times since this whole thing started.
When the medicine came, I noticed it was a bit heavier than usual. The balls are to infuse over 1 hour instead of the half hour I have become accustomed to. That's really not a big deal. Like I said, as long as it doesn't interfere with my sleep, I'm happy. I got my first dose at 1pm as I mentioned so I have to take the second dose a little earlier and do it at 11pm or so. I have to get it back to a normal schedule. There's a two hour window for the medicine.
It's strange but there are times during the day when I can breathe better than others. Sometimes I'm winded just sitting and talking and other times I'm not.
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