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New Normal Redux

ejourneys's picture

In the days following my hospital discharge for a port-associated blood clot, I've added to my To Do list and have been checking off the tasks.

1. Update my ICE (In Case of Emergency) documents. My Vial of Life form lives in both my fanny pack and my ER Go-Bag. My emergency contact list lives in both those places plus my wallet. Both those documents include my meds list. My Vial of Life form also includes info on my most recent hospitalization (prior to the clot, my last inpatient hospitalization had been 50 years ago) and medical conditions.

2. Update the flash drive in my Go-Bag. I've replaced the files for the aforementioned documents and have added a folder with the records from my hospital stay (thank you, patient portal!).

3. Remove all aspirin and ibuprofen from my immediate vicinity and fanny pack and substitute Tylenol. For as long as I'm on the Xarelto, NSAIDS (including ibuprofen) and aspirin are not safe for me to take. I want to have safeguards in place just in case that detail slips my mind. I also put up a reminder note where I -- and my partner -- can see it.

4. Remove my Bard Power Port card from my wallet and remove its copy from my Go-Bag, now that the port has been removed from my body.

5. Download and set up this neat (and free) computer alarm clock. I've been pretty good at watching the clock for my vitamins and anastrazole, but now I've added Xarelto twice a day. I've already set my regular alarm clock to get me out of bed for my morning dose because I work on flex time; sleeping in is not unusual. The computer alarm clock wakes my computer from sleep and comes with a selection of sounds. Cuckoos tell me to take Xarelto. A xylophone tells me to take anastrazole. A flute serenade reminds me when the next Breast Cancer Social Media (#BCSM) chat is coming up. A reminder box pops up on my screen, so that I get the message even if my headphones are off. The website says the computer lid must be up for the alarm to kick in, but my cuckoos were going strong even with the lid down, and even with my having to log onto my computer again. I heard them after my regular alarm woke me. I've been using this program for several days now and love it.

I thought anastrazole (the white pill) was tiny, but I think the Xarelto (the brown pill) is even a wee bit smaller. At this rate, I expect my next prescription to come with a magnifying glass and a pair of tweezers:

Naturally, I read through my hospital records (I'm thrilled that the downloads included my flowsheets; I used to have to pay extra for those). The phrase, "There is near-complete occlusion of the right subclavian vein," set me back on my heels. Near-complete occlusion? That sounded scary. Just how lucky was I to be sitting here now, typing this?

According to this .pdf from the American Venous Forum, "Unusual and forceful arm motion as happens in pitching or other prolonged labors such as house painting or window washing may cause [subclavian] vein thrombosis. ... 'weekend warriors,' housewives with long periods of window washing, house painters, weightlifters, professional athletes such as volleyball players, and baseball pitchers can all be affected by this disorder." Mine just happened to have come from my port.

I've been asked why I've held onto my port for this long, since I had finished chemo 15 months ago. Some people opt to have their port removed ASAP; others hold onto theirs. One of the chemo nurses told me at my last follow-up that she believes in keeping a port "for the rest of your natural life." Greg Pierce, What Next's moderator par excellence, kept his second port for over a dozen years after he beat cancer the first time (his first port had been a dud). He finally had port #2 removed and the next thing he knew, he was fighting cancer again. So it really is a personal choice. In addition to delivering chemo, my port was fabulous for bloodwork and for IVs during various procedures, including non-cancer ones like my colonoscopy. My veins are persnickety to begin with, so I loved my port -- until it became naughty.

On Tuesday I followed up with my GP. I'll have another ultrasound done in a couple of months; what that shows will determine our next steps. My GP was not pleased to hear that my insurer won't cover the ER visit from her colleague, who had covered for her. Once I receive that rejection, we'll file an appeal.

After that appointment I popped over to the hospital to get my ultrasound images, which include those from my jugular vein all the way down my arm. But my subclavian vein is where the clot resides:

From my understanding of this video (which, like most videos about DVTs (blood clots), deals with the leg, but basic concepts remain the same), the colored patches at bottom right indicate blood flow. Most of that flow has been cut off by the clot. (That spot of bright aqua indicates higher flow velocity. Red means incoming flow; blue means outgoing flow.) Be interesting to see how that image changes over time.

Next up on my Doctor Dance Card is my medical oncologist on Friday, with my radiation oncologist and surgeon slated for next week.  (My rad onc appointment is a regular follow-up; everything else relates to the clot.)

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