Sure hope I didn’t leave anyone out. So the names there in the title are the teams that will be following me now, in addition to my pulmonologist, my hematology oncologist, my ophthalmologist, and my PCP.
Remember all that face, head, and neck swelling back in January? Blood clot. And all the swelling since has been that same blood clot getting larger and worse. And when my right hand swelled to the size of a boxing glove on Friday … I figured something was up. I went to the ER, where they confirmed clot with an ultrasound. I thought and then almost choked on the thought as I had it: a lot of my friends are doing this, they’re just looking at their babies on the screen, not their blood vessels. They started me right away on a Heparin drip, said I really ought have come in on Thursday, and sent me upstairs to 6B. Since IR was who I needed, and they did their best work during the week, I cooled my heels until Monday.
My surgeon’s name was Paula, and she slid a catheter up through my femoral vein (right by your hip), heading for my superior vena cava (SVC) and other veins of the head/arm/etc. But she couldn’t get there. Veins from my heart were completely occluded on both the right and the left. Paula took my port out, and then sent me back to my room for an imaging study. I was completely conscious for this entire procedure, and it was really cool. I could feel the catheter moving through my veins inside, and Paula talked to me while she was working on me. And while I loved that part of it, the rest I hated. I was so angry and upset after the surgery that I sobbed for about eight hours straight, and barked like a junkyard dog at anyone who got near me. The surgeon got a little of it. My mother did. The recovery room nurse did, and so did the nurses who received me back on 6B. They called the attending, and I gave him some of it, even though he was trying his best to calm me down. I called up my sister and gave her some of it. I finally accepted some morphine and Ativan and that turned off the waterworks. Good thing, since it was time for the imaging study.
They wanted an MRV (an MRI of the vascular system). They took me at about ten and parked me outside the room for an hour and a half. Then into the MRI. I’d never had one, and I knew they were close, but I didn’t know you were literally stuffed into the thing, like a hot dog into a bun. It was none too comfortable, especially since I had already been lying flat on my back for over ten hours (for the surgery, then the recovery, then four hours post-op to prevent femoral hemorrhage). When we had a malfunction of the IV in my right arm, they made me stay in the exact same position while we waited for the IV team. But I couldn’t do it. I called uncle and they brought down my nurse, who explained that she’d give me some pain medication if I came out in the hall – she couldn’t go into the MRI room because she’d had a facelift and had metal clips in her head. Awesome. MRV finally ended about one, and I got right to sleep.
They spent all day Tuesday figuring out what to do with me, since the MRV showed that nearly half the veins in my upper body were completely occluded by this one roaring great clot. It was nothing new, and had been going on since before this January, for sure. And this is something I don’t get. If it was there in January, why didn’t January’s CT scan (which I got to scan for blood clots) show it? Likewise February’s venogram? Sigh.
I went back to IR on Wednesday. Paula had brought in backup, her old mentor and expert-like dude. Together, they pulled some really cool stuff, and managed to get a stent into my SVC just above the heart. Paula had a catheter in through my brachiocephalic vein (left arm) with the stent on it and a loop on the end. He had a catheter with a needle and a bit of a hook on it, which he threaded through the femoral and up to my heart, then through the heart with the needle, to meet her catheter and hook it and pull the stent down into my SVC. They also cleared out as much of the clot as possible on the left, and placed two or three more stents on that side. All in all, the surgery took over six hours, but they had much success.
The difference was immediate. Within minutes, my face was less swollen, and within hours, my eyes were back to normal shape. My cheekbones and jawlines reemerged. I couldn’t believe how I looked in the mirror. Hey! My face is back! So that’s the good news.
Okay, ready? Bad news is that they couldn’t do anything on the right. Clot was too big. I had always sort of expected to hear the words, “I’m sorry, there’s nothing more we can do,” from my oncologist … but not a different doctor. So it was strange to hear it from IR. My right arm is still incredibly swollen, and they’ve wrapped it in compression wraps to be worn 24 hours daily. I’ll have therapy to massage the arm and re-wrap it, and try to work down the swelling. After 3-4 weeks in wraps, I’ll have a compression sleeve to wear on that arm. How long will that last? Well … forever.
I’ll also be on Coumadin, a blood thinner, forever. Coumadin’s a tricky little drug, with lots of interactions and lots of special considerations – like if I cut myself shaving, I might bleed for twenty minutes. For this week while my body adjusts to the Coumadin, I’m also giving myself injections of Lovenox, another blood thinner. It’s not difficult, and I don’t mind doing it – I can’t even feel it, really. Plus I get my own red biohazard sharps container.
So that’s it, folks. Lots more doctor visits and things coming up; in fact, the visiting nurse was here today to help us wrap the arm. But I’m not dead (if I even was close – not sure) and I’m basically just fine.
Still watch-and-waiting on the cancer front – next scan July 17.