Christmas came early for me this year! I must have been a very good girl, because I got the best toy of all – a PICC line! I know you’re all jealous as hell. This device allows me to avoid the countless pokes my condition brings with it. It’s a long-term port that has 2 tubes for drawing blood out and hooking up IV meds or transfusion blood products. Just in the last 24 hours I have spared my weary veins 9 pokes 🙂
My new toy makes me the most envied kid on the block.
I was more than a little nervous about getting the PICC line inserted, because I had read what the procedure entails: basically inserting a long catheter into my upper inner arm, into a deep vein, through my muscle, around my shoulder to a spot just above my heart. Just didn’t sound pleasant to this girl who is not a fan of pain. I had a fantastic nurse, Ginny, do the procedure, and she walked me through every step. It really wasn’t that bad. Definitely worth it! Kinda blew the nickname Jae had for me, though – Pokey. Get it? Pokey, because of all the pokes and Pokey is a horse. Not really a horse, more like a pony pal.
My pony pal Pokey
So I got my PICC line and I’m all ready to check into City of Hope’s hospital to start my ATG horse antibody shake and bake treatment, but of course it couldn’t be that simple… After a PICC line insertion, they always do a chest X-ray to make sure the catheter is in the right spot above the heart, but not piercing the lung… My X-ray showed a dark spot on my right lung. Wooop de f-ing doo! My docs are extremely concerned, because my body has no defense to fight off an infection at this point, and it’s a dangerous sitch we find ourselves in. Once again.
This discovery, which we wouldn’t have known about if I wouldn’t have had the PICC, has set off a firestorm of follow up exams and tests to try to determine WTF is in my lung. I went straight to have a CT-scan of my lung, I had 4 pokeless blood cultures done (thanks, PICC line!), I had Dr D (infectious disease specialist) added to my team, who did a thorough exam and work up on the possibilities, and I had the pleasure of enduring a bronchoscopy and lung biopsy. Just because I’m certain you’re dying to know, a bronchoscopy goes like this: they first give you a peace pipe apparatus, and you have to breathe in this awful tasting stuff that coats and numbs your throat, then they stick a scope down your gullet into your lung and take a look around and collect a sample of the infected area. The best part is that I got to perfect my moon walking, because I had MJ’s Propofol knock me out once again.
My first night was miserable… I started an antibiotic that was aimed at killing off whatever is in my lung called Abelcet. Over the 4 hour infusion, which went from 10pm-2am, I shook violently and had massive chills. In addition to this fun, I had blood drawn, vitals taken, several other antibiotic infusions, a platelet transfusion and 2 units of blood transfused. I had a fever throughout the night. Basically, an f-ed up night with no sleeping.
We did receive some rare, good news! After searching the national bone marrow donor list, it looks like I have over 3,000 potential first level matches. They still have to go through the DNA matching phase, but with 3,000 possible matches, my docs are very confident that they will find some good matches for me, in case my brother is not a match. Once again, I told them that I am interested in finding a match that is extremely good looking and highly intelligent 🙂
Dr. P visited me during his rounds this morning, and he and the COH Hematology Team received some results back from my bronchoscopy. They believe it’s bacterial pneumonia, and they want to proceed with ATG infusions and treatment for the pneumonia at the same time. It’s a little dicey, because the ATG is going to lower my white cells even more than the .3 level they are currently measuring, which would significantly lower my ability to fight an infection even more. The white cell count in a normal person is 4.1-10.9. I will have a private nurse in my private negative pressure room, sitting by my side during the 6 hour infusions for the next 4 days to watch me like a hawk for any signs of rejection. I will be in my room for about 3 weeks, because I will be watched for ATG after effects (mane and tail, joint pain, flu symptoms, etc.) and to make sure the pneumonia gets completely cleared up. So, a little change to the original plan, but the rodeo will begin today. I’m gonna be so pissed if I am shaking, barfing and/or too nauseous to root on my Trojans today! I‘m definitely planning to Fight On!