Unwanted excitement

Never. A dull. Moment.
 
I finished my last dose of IV antibiotics on 1/8. The Infectious Disease doctor wanted me to keep the PICC line in for another week to see how I did off the antibiotics, but no longer running 3 hour infusions 3 times a day meant I could finally SLEEP. I felt sooo much better after just a couple nights. It’s amazing what getting a halfway decent night’s sleep can do!
 
On 1/9 I saw my new transplant doctor. I already knew her from prior hospitalizations, and actually had her during part of my inpatient stay last month. We skipped my usual PFTs (Pulmonary Function Tests) since I was still recovering from RSV and she didn’t want me to see bad numbers and be alarmed. They also did another viral swab to see if I was still positive for RSV. Despite my symptoms being significantly better, the swab still came back positive. Apparently RSV can last for a long time in immunocompromised patients, but it’s unclear whether I’m actually contagious, as the test can also pick up dead virus. Thankfully, aside from some lingering shortness of breath, my symptoms have pretty much cleared up.
 
On 1/13 I had my regular weekly lab work, which surprisingly showed that my white blood cell count was high. Everyone was confused by this, as it hasn’t been high through the last several weeks of fighting various infections, and I wasn’t showing any current signs of infection. I also informed my transplant team that I was having some off and on pain in my other transplant incision, which made everyone nervous about a potential infection brewing there. So we decided to keep the PICC line in a bit longer until I could get a chest CT scan with contrast and see what was going on.
 
Which brings us to Saturday.
 
On Saturday, I noticed that the arm with my PICC line was kinda discolored and swollen. My mom came over to check it out and agreed that it didn’t look right, so I called the home infusion company that was managing my PICC line. They told me to reach out to my team, so I spoke to the transplant doctor on call, who thought it sounded like it could be a blood clot and said I should go to the ER. She suggested trying Pennsylvania Hospital instead of HUP, as they are still in the Penn Medicine system but might be less busy than the typically insane HUP ER. And sure enough, the waiting room was almost empty and I went right back! One ultrasound later and we confirmed that I did indeed have a PICC induced blood clot, aka a DVT (Deep Vein Thrombosis). Thankfully the CT scan did not show a pulmonary embolism, which is a potential complication of a DVT… but this is where things went off the rails. Because what the CT scan DID show was a “gaseous collection” at my surgical site, which could be an indication of infection. And after having a surgical washout and weeks of IV antibiotics, I should NOT have any signs of infection. So now what should have been a quick DVT diagnosis and prescription for blood thinners turned into being admitted to figure out what the heck was going on. BUT Pennsylvania Hospital wasn’t equipped to handle my complicated case, so I had to be transferred to HUP, which didn’t have any beds available. Which meant I got to wait in the ER until HUP could take me. Between waiting for testing and waiting for a bed, I spent about 18 hours in the ER before finally getting into my room at HUP. Fun fun!
 
Being transferred was a little exciting because it meant I got to ride in an ambulance for the first time in my life. Shockingly, despite my lifetime of medical drama, I had never actually been in an ambulance! It only lasted like 10 minutes and was pretty low key, but it was definitely a new life experience.
 
On Sunday I settled into my room at HUP and they got me back onto IV antibiotics until they could figure out what was happening. The figuring things out part didn’t really happen until Monday though when all the specialty teams were back in business. So that meant consulting with the lung disease team AND the cardiothoracic team AND the Infectious Disease team AND my surgeon. And thankfully, after various tests and consultations, everyone decided that my wound was healing fine, that there was no sign of infection, and that the “gaseous collection” was just a pocket that hadn’t finished healing yet and needed more time to close up. Which meant that on Monday afternoon, after pulling the PICC line and giving me a prescription for blood thinners for the DVT, I was free to go!
 
It was an EXHAUSTING weekend! Thanks to the ER trip I ended up being awake for over 24 hours from Saturday afternoon to Sunday night, and of course sleeping in the hospital Sunday night wasn’t exactly restful. Getting a full night’s sleep Monday night was wonderful! And then on Tuesday, for the first time in over 6 weeks, I was able to take a lovely IV free shower. Getting the PICC line out is a HUGE relief, as it was in an awkward location and has been hurting me for weeks. I’m one step closer to being fully recovered, as all I have left now is my wound, which is getting smaller by the day and healing very well. I have a follow up appointment with the plastic surgeon next week, so we’ll see what he thinks about my progress.
 
Hopefully that was the LAST of the drama for this round of medical shenanigans, and I can stick with regularly scheduled appointments from here on out!