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!

Feeling thankful

I am so fortunate to have such a strong safety net supporting me through these difficult times. I don’t mention them enough, but I absolutely don’t know what I would do without them. Huge shout out to my good friend Shira Baratz, who set up a meal train for me a couple weeks ago. We kept it small because I have so many risk factors around food safety, so I wasn’t comfortable opening it up to the community at large. I also only wanted meals a few nights a week so I didn’t get overloaded with too much food that I couldn’t eat. But within those parameters, Shira and my other friends who signed up for meals really came through! It made such a difference having hearty meals readily available when I was too exhausted to think straight. I’m so grateful to my friends for their help!
 
Then of course there’s my mom, who has been my supporter and advocate for my entire life. I can’t imagine how stressful and challenging it was raising a child with intensive medical needs who wasn’t even expected to live to adulthood, but somehow she did it! Squeezing numerous hospital visits into a busy work schedule isn’t easy, but she was there during my recent inpatient stay just like she always is. And I also know that my stepfather, Frank, is always up for a Shoprite run when I need one, which was particularly helpful when both Katherine and I were laid out with RSV! I’m very blessed to have such a supportive family and I am very thankful for them!
 
And then of course, last but not least, there’s Katherine. However complicated you think my life is just from reading these updates, I guarantee you don’t even know the half of it, and Katherine is right here by my side every step of the way. Not only does she have to handle her own stress and exhaustion, but she’s also always there supporting me both physically and emotionally every single day. I don’t know how I got so lucky to score such a strong and amazing partner! I love her to pieces and thank G-d for her every day!

Slowly making progress

It’s been a long haul, but I’m finally, slowly, getting somewhere.
 
Katherine and I are utterly exhausted. We haven’t had a decent night’s sleep in weeks, and it is seriously wearing us down. Then of course we’ve had to deal with RSV symptoms on top of that. Katherine says it’s the worst cold she’s ever had. My congestion got pretty rough last week, but thankfully I finally turned the corner over the weekend and seem to be on the mend. We’re very grateful that my symptoms didn’t get out of hand and that I was able to stay out of the hospital. But now there’s the anxious waiting period that comes with any infection, in which we monitor me closely afterwards for any signs of rejection. So far in the last year I’ve managed to make it through 2 viruses without triggering rejection, so here’s hoping virus #3 is the same!
 
Last week I saw the plastic surgeon, who is the doctor in charge of my wound. He said it was healing well, and that it was up to me if I wanted to keep the wound vac or switch to a regular dressing. Well once he gave me the option, you know I jumped at the chance to get rid of the wound vac! Let me tell you, getting rid of that thing was SUCH a relief! I’ve had so much less pain and been so much more comfortable without it. The trade off is that the dressing needs to be changed every day, but the visiting nurses don’t come out that often. And because of the location I can’t see or access the wound to dress it myself. So it’s a good thing that Katherine has become less medically squeamish over the years, because she is now in charge of dressing changes! She has done a great job stepping up to the challenge despite some involuntary horrified facial expressions.
 
I also saw the Infectious Disease doctor last week, who is in charge of my IV antibiotics. She actually was ready to stop the antibiotics last week, but needed to consult with all the other teams who are currently following my case. So that meant coordinating with lung transplant AND the plastic surgeon AND my transplant surgeon who did the surgery. She finally got back to me today, and said I can finish up tomorrow’s doses and then be DONE! Katherine and I are both looking forward to FINALLY being able to get a full night’s sleep without waking up to run an infusion! I won’t be rid of my PICC line quite yet though, as the Infectious Disease doctor wants to wait a week after stopping antibiotics to see how I do before removing it. But I’ll gladly put up with the discomfort of a PICC line as long as I can get some sleep!
 
I still have a ways to go with my wound. The plastic surgeon said that normally he’d expect a wound of this size to take 4-6 weeks to heal, but since I’m immunosuppressed it will likely take longer. I have a follow up appointment in a few weeks to assess the progress. If he feels it’s healing too slowly he will stitch it up, but otherwise we will continue to let it heal on its own. Thankfully the wound really hasn’t been painful since the wound vac came off. In fact the most uncomfortable part is the tape from the dressing. My skin is really sensitive to adhesives, and having dressings taped to my side for the last few weeks hasn’t been doing it any favors. I’m definitely not excited about continuing to torture my skin over the next however many weeks while this heals. We’ve been experimenting with different tapes and bandages, so hopefully we can find something that my skin can tolerate.
 
I feel like I’ve really been through the wringer over the last month, and I still have a ways to go. But thankfully I am finally starting to see the light at the end of this tunnel!