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!