And the verdict is...

And the verdict is… no more surgery!!!
 
I saw the plastic surgeon last week, and he said my wound is all healed up and doesn’t need any further intervention! That was a HUGE relief!! I also had a transplant appointment last week, and my lung function was at 99%! Which means that once again I have weathered a respiratory virus without triggering any rejection. Whew! I’m SO glad to finally put this round of medical drama behind me!!
 
That doesn’t mean I have nothing left on my plate however. Now I need to catch up on stuff that got pushed off while I was dealing with more pressing issues. A big one is that I still need to get a tooth extracted, which my transplant doctor wants me to prioritize due to the risk of infection. I also have a follow up hearing test and ENT appointment to see how I’ve recovered from the pseudomonas infection in my ear. In a couple months I need to get an ultrasound to make sure the DVT in my arm has resolved, and I might need to follow up with hematology since this is the second time I’ve had a PICC induced blood clot. Then there’s the standard stuff like getting a mammogram and following up with my diabetes doctor. Never a dull moment!
 
I also now have a primary care doctor for the first time in decades! A few weeks ago I randomly started having pain in my shoulder. My transplant team sent me for an x-ray to make sure my bones were ok, since they’ve been weakened by years of steroid use. Thankfully nothing was broken, so they told me to follow up with a primary care doctor, since joint issues are really outside their area of expertise. So I got to overwhelm a primary care doctor with my insane medical history, which was actually kind of amusing. She was so overwhelmed, in fact, that she scheduled a second, longer appointment to finish going through everything. In the meantime, I have shoulder exercises to try before looking into PT. And I also have an orthopaedic appointment to deal with some on and off hip and foot pain that has been an issue for years but I never bothered dealing with. Look at me having normal people problems!
 
Finding out that I don’t need further surgery and that my lungs are doing well was GREAT news after over 2 months of medical drama. Hopefully I can stick with my baseline level of medical involvement and avoid any more urgent issues for a good long while!

Not the best

Well, it wasn’t the WORST doctor’s appointment, but it also wasn’t the best.
 
Last week I saw the plastic surgeon who is in charge of my wound. Though the wound looks like it’s closing well on the outside, there’s still an open pocket under the surface that hasn’t closed. The plastic surgeon said it’s currently unclear whether or not that pocket will close on its own. It’s possible that my body has formed a sort of film inside the cavity that will prevent it from closing entirely. We’re giving it 3 more weeks, and if it hasn’t made significant progress by then, it will have to be closed surgically. Unfortunately that would mean putting me under general anesthesia, re-opening the outer incision, excising the film from inside the cavity, and putting in a drain before sewing everything back up. I’m REALLY hoping things look much better in 3 weeks, because I do NOT want to have to go through surgery and a lengthy healing process all over again. There’s no way to tell what will happen though, so all I can do now is wait and see.
 
I was pretty unhappy after that appointment. I had no idea this was coming, since everything looks like it’s healing great from the outside. I feel like the last 2 months have just been one medical issue after the next, with no end in sight. And I’m REALLY upset at the thought of having to go through ANOTHER painful surgery and recovery. I’m trying to be hopeful that maybe things will improve over the next few weeks, but it’s hard when it feels like every time things start looking up I end up getting punched back down again.
 
2024 ended really poorly, and so far 2025 hasn’t been going much better. Honestly, just typing all this out kinda makes me want to scream! Let’s hope things turn around soon so I can finally move on from this round of medical shenanigans.

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!

Not just a cold

Well, it’s not just a cold. It’s RSV.
 
My transplant team doesn’t mess around with any signs of infection, so even though my symptoms weren’t too bad to start with, they brought me in for a viral swab on Tuesday. We got the results on Thursday, and it turns out I have RSV. Unfortunately there isn’t much they can do for RSV aside from symptom management. So I’m taking Mucinex, and doing nebulizers twice a day, and trying to stay super hydrated. Normally they would have also given me steroids, but they don’t want to do that since I still have an open wound, and steroids can impede healing. Instead they prescribed an antiviral, which I started yesterday.
 
Things have honestly been pretty pathetic around here. Katherine is also sick, and we assume she also has RSV. She’s been utterly miserable and says it’s the worst cold she’s had in her entire life. My symptoms were more manageable to start with, but over the last few days I’ve had a significant increase in both head and chest congestion. Though I can feel the congestion rattling around in my chest, I’m having a REALLY hard time getting any of it out. I already have trouble clearing congestion due to my airways narrowing post-transplant, and I have a feeling they’re even narrower now thanks to the RSV. It’s pretty uncomfortable, and I had a hard time sleeping last night because I kept feeling like I was choking on mucus. Today has been a little easier, so hopefully I’m past the worst of it. Fortunately I haven’t had any fever and my oxygen levels have remained stable, so maybe I’ll manage to stay out of the hospital and finish weathering it at home.
 
RSV would be a lot even under the best of circumstances. But I’m also dealing with the wound vac and an exhausting infusion schedule. I also have a busy week coming up, with appointments with the plastic surgeon as well as with Infectious Disease. It really is A LOT to deal with all at once, and I’m feeling pretty beat down. I feel like after having a couple years where things were relatively quiet medically, I’m now making up for it all at once! Maybe this week I’ll finally get some answers as to when I can be done with the wound vac and the IV antibiotics and start getting back to some semblance of normalcy!

Keeping busy

It’s so good to be home!
 
What a relief to be out of the hospital! I am GREATLY appreciating my comfy bed, and having access to a kitchen full of food whenever I want, and finally getting some peace and QUIET away from all the noises and interruptions and poking and prodding of the hospital! And, of course, getting to be with my amazing partner, who deals with so much and takes such wonderful care of me! Home is good!
 
That doesn’t exactly mean I’m living my best life here. I still have the wound vac, which is uncomfortable at best and sometimes pretty painful, particularly during dressing changes. My skin can be sensitive to adhesives, and less than 24 hours after the wound vac was put on I actually got a welt from the first dressing they used. The welt is slowly healing, and we’re using a different dressing now that I’m less sensitive to, but my skin still isn’t loving it and I’m often itchy.  Then there’s the dressing changes, during which they remove and replace the sponge packing the wound. This happens at least 3 times a week, and is painful every time. Most of the time I can get by without taking anything stronger than Tylenol, but for dressing changes I take a small dose of oxycodone to make things more comfortable. There’s still no word on how long I’ll have the wound vac, but it will be for at least another week, which is when I have an appointment with the plastic surgeon to assess my progress and see if they’re ready to stitch me up. So far everyone has said that the wound is healing nicely, so I’m hopeful that I won’t need the wound vac much longer!
 
Aside from all that, I’m also on a pretty rigorous infusion schedule. I run my IV antibiotics 3 times a day at 6am, 2pm, and 10pm, and each infusion runs for about 3 hours. To make it more complicated, for some reason the pharmacy isn’t able to fit the full dose into one bag, so halfway through each infusion I need to switch to a 2^nd bag. All that doesn’t exactly leave a lot of time for sleeping. I’m definitely getting much better quality sleep at home than I was in the hospital, but both Katherine and I are still pretty exhausted. Right now they haven’t set an end date for the antibiotic, and are waiting to see how the wound heals. I do have an appointment with Infectious Disease at the end of next week though, so hopefully we’ll have a clearer plan then.
 
I’ve also been kept busy with nursing visits! I have 2 home care agencies following me, one to take care of my infusions and PICC line, and one to take care of the wound vac. I had an infusion appointment the day I came home, and then a wound vac appointment over the weekend. And today was especially busy, because I had both! The infusion nurse came in the morning to draw my weekly labs and change the dressing on my PICC line, and the wound care nurse came in the afternoon to change the dressing on my wound vac. That will be the schedule every Monday for as long as I have both the IVs and the wound vac, and it’s a lot! In addition to that I also have wound vac appointments on Wednesdays and Fridays. Being sick is a lot of work!
 
And because we didn’t have enough going on, Katherine and I came down with colds over the weekend. Katherine is feeling pretty miserable, but thankfully my symptoms aren’t too bad so far. But my transplant team doesn’t mess around when it comes to infections, so tomorrow we need to shlep back into Philly so they can take a viral swab and try to identify what I’ve caught. Planning anything is difficult with my infusion schedule, plus I have to lug the wound vac with me wherever I go, so I’m not exactly looking forward to leaving the house. At least it shouldn’t take long.
 
So that’s the story around here. My days are jam packed with medical shenanigans, and I am TIRED. But I am very, very glad to be dealing with all this from the comfort of my own home!