Day +37

Happy weekend everyone! We had a good week around here. Momma is finished her second Springbok puzzle, hubs and I continue our cribbage “tournament” and I continue to feel a little restless.

Photo 2016-10-30, 1 29 22 PM.jpg

Mom’s impressive, SECOND since she arrived, puzzle

On Tuesday  I had my weekly check-in at Module L and as usual I had blood work done. I mentioned last post that they removed my PICC line, and it was so nice to feel free to bathe unencumbered.

I purposely say “was” because late Tuesday afternoon, we got a call back from a BMT nurse. Remember, no news is good news? Well, the news was that my Cytomegalovirus (CMV) test came back showing reactivation. What exactly is CMV? Well for the nerds out there a full explanation go here.

Now, the pertinent bits (thanks Wikipedia):   “[CMV] is a member of the viral family known as Herpesviridae…most healthy people who are infected by [CMV] after birth have no symptoms. Some develop a syndrome similar to [mono]…with prolonged fever, and mild hepatitis. A sore throat is common…Primary CMV infection in patients with weakened immune systems can lead to serious disease. However, a more common problem is reactivation of the latent virus.” *waves hand*

CMV reactivation is something that they’ve been watching for (unbeknownst to me), so when the CMV titre started to rise, they were on it. For me, this means Ganciclovir – an antiviral medication given through IV. The course of drugs is twice a day for two weeks, followed by once a day for four. That’s six weeks, if you’re counting.

Luckily, I can do this at home! I am hooked up to a pump that is set to deliver the medication every twelve hours. The pump and medicine lives in a fanny pack I can carry around (hello 1990!). Home care comes once a day to change the bag of medicine. My port is being used for access since I (zealously) gave up my PICC line. The only real inconvenient annoyance is that the port is on my upper chest and cannot be covered like a PICC line can to bathe. So it’s sponge baths for this kid for the next six weeks. Ugh.

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My appetite is better. I’m still taking anti-nausea meds, but I imagine we’ll be tapering them in the next week or two…I hope. Taking meds eight times a day is kind of intense!


6 responses to “Day +37

  • Sylvia/Ken Ransom

    Another bump along the road, hope the road will soon become very smooth and even for you…….

  • Kathy

    Ah yes, fanny packs…… yours is both attractively monogrammed and useful! I don’t know why they went of fashion.

    You’re amazing — hang in there.
    Kathy B.

  • Dianne

    Quite the journey. As always…keeping you in our daily thoughts 💗

  • Lightfoot Bikes

    Jessy from one eighties kid to another – I think it’s time for a fanny pack comeback anyway! It looks good on you lovely. Thinking of you all the time and so glad you are being so well monitored and cared for – they sound like such a conscientious and knowledgeable health team. You, your mom and Jamey are an amazing trio – your patience and continued humour is so great Jess. I hope you can get out, enjoy little escapes (like the election!) and continued gaming to keep your mind busy as it loves to be! Can’t wait to see you (and be inevitably beat at cribbage!) Love you and big warm hugs to your family, Lisa & Jeremy

  • Day +58 | Keeping my Balance

    […] what has been going on over the past few weeks, but honestly, it’s been uneventful.  I’ve got a little over two weeks left of the daily infusions of Ganciclovir. My infusions are down to once a day, and a smaller dose. Homecare taught us how to maintain my […]

  • Day +100 | Keeping my Balance

    […] but had to return to appointments every week, just to stay on top of my blood work, making sure the CMV didn’t rear it’s head again.  My hair continues to grow, and my fingernails continue […]

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