Tag Archives: portacath

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.

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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!

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A new year…

Happy September!  I love this time of year. The weather gets a little cooler (or it’s supposed to), school starts, and fall activities ramp up. While January is technically the beginning of the year, September will always be my unofficial new year.

So, it seems appropriate that I start the transplant in September.

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See, there’s mom sitting next to me (on the phone). :o)

The hubbs and I had our transplant planning meeting with the BMT team, last Wednesday (August 31st). We were given a hard copy schedule of dates and milestones, exactly like the first time. Mom, opted to stay home and to join in by phone as we’re all going to be very cozy over the next few months as it is, and that worked great.

Beside the August 31st date, it said things like “planning appointment; transplant talk…transfusion medicine consent…” -intimidating even on paper. Again we spoke with one of the transplant nurses Shannon, and this time the medical director of the transplant program, Dr. Bredeson.  Now, I don’t know if it was just coincidental that he was doing the BMT clinic that day, or if every patient sees him before transplant but either way, the “transplant talk” came from him, and as such was made even more sobering when discussing things like side effects, and potential complications that included things like…death.

We’ve known the risks from the beginning, and we’ve accepted them as possibilities, AND we’ve been given this talk at least three times since the inception of the transplant discussion, but honest to goodness – can we just stop already? My peeps and I have all agreed that these are conversations that they ethically (and probably legally) have to have, but they’ve had them, and in the interest of acknowledging that we’re coming up to the scary bits of the process…let’s just not.

After Dr. B made me briefly doubt my decision left, Shannon came back into the room and we talked about how they were going to try to manage the nausea better this time, and confirmed that I would need a PICC line inserted. It seems my portacath would not provide enough access for everything that they would be pumping into me before the transplant.

A brief run down of the schedule: (I will explain the steps further as I move through them.)

I started Phenytoin yesterday (Sept 6th) for 7 days, because apparently seizures are a thing *blink blink* that can happen with the chemo.

September 10th or 11th – Mom arrives!!

September 12th I have the PICC line inserted.

START is September 13th (aka. Day -10) with 4 days of IV Busulfan in the day hospital, as an outpatient (yay!)

If all goes well,  I won’t be admitted until September 17th (Day -6), when I begin 5 days of cyclophosphamide (*hiss!*)

On September 19th (Day -4), they add rATG (rabbit derived antibodies…no, seriously) for 4 days….and….*drum roll*

On September 23rd (Day 0) I will have my CIDP free stem-cells returned to me!

This is the plan, and it will be awesome if it works out this way. If not we’ll deal, but in the meantime anyone with prayers and/or happy, encouraging thoughts to share, please include me in your practice, or as you move through your days in the coming weeks.

**A quick aside: during the next while, you might also hear from mom, who has offered to keep everyone updated if I am unable. We’ll do our best.