Lungiversary

Today is my 6^th lungiversary. All day I’ve been looking at pictures and reviewing where I was at any given time. First waiting in my hospital room, then being brought down to pre-op, then waiting in pre-op, and then, finally, being brought into surgery. Right now I was in the thick of surgery, and Katherine and my mom had already been anxiously waiting for hours and knew they still had hours to go. It’s mind boggling to think of all we went through, and how wildly different my life is now.
 
My transplant anniversary always comes with a weird mix of emotions. On the one hand, it’s obviously a celebratory day, as the transplant very literally saved my life. On the other hand, I always light a Yartzeit candle in memory of my donor, and have their family in my thoughts. I sent a letter to my donor’s family in the year after my transplant, but I never got a response. I always wonder how they are on this day, and what my donor’s life was like. It’s very strange to be celebrating my survival while mourning my unknown donor’s passing.
 
This year has been extra difficult, because I’ve also been thinking about Cam and Scarz. It hasn’t even been a month and a half since they passed. Both of them were also post-transplant, and I can’t help wondering why I have been so fortunate to be blessed with a mostly-successful transplant while they were not. And they are just the latest of a long list of friends I have lost to CF and/or transplant over the years. Survivor’s guilt is something I always struggle with to varying degrees, and it weighs heavily on me today.
 
But on the other hand, 6 years! 6 years that I definitely would not have seen without the transplant. 6 years of life experiences and time with my loved ones. I am so grateful for this extra time, and for not having any life-threatening complications. Some aspects of this day are heavy, but I also want to recognize the miracle of my life with joy.
 
We were supposed to go out for a joint lungiversary and Mother’s Day dinner with my mom and Frank last night, but unfortunately my mom came down with a bad respiratory infection over the weekend. So not only is she not up to going anywhere, but I also can’t go anywhere near her until she’s 100% germ free. I told her it’s ok though, we’ll just have to extend the celebration until she’s better and we can make it up. Forget about lungiversary day, this is now officially lungiversary month! Katherine and I also picked up a cake today and invited our good friends and neighbors Rivka Sara and Eli to join us for a little celebratory dessert. It was a much more low-key celebration than last year, but we definitely still recognized this special occasion.
 
I definitely haven’t taken these last 6 years for granted. I recognize how fragile post-transplant life can be, and even though I’ve had my struggles, I am so thankful that overall my transplant has been so successful. And I look forward to celebrating many more lungiversaries in the future!

Cavity free is the way to be!

Thank G-d the tooth extraction went really well! I was anxious going in since I’ve never had any significant dental work done before, but it ended up being so quick and easy. I barely felt anything and he popped the tooth out so fast I couldn’t believe it! And then much to my surprise I hardly had any pain even after the anesthetic wore off! The oral surgeon gave me an additional treatment called Platelet-rich fibrin, or PRF, which helps with wound healing and reduces the risk of dry socket. He drew some of my blood before the extraction and spun it in a centrifuge to separate out the super-healing parts. After the extraction he inserted this material into the hole before stitching it up. This additional procedure was optional, but since my wound healing is compromised by immunosuppression and diabetes, I wanted anything that could help. I don’t know if it was because of the PRF, but my recovery has gone really well and been almost completely pain-free. What a relief!

Unfortunately, Medicare is notorious for not offering dental coverage. I do have some coverage due to having a Medicare Advantage plan, but right now they are denying the PRF (which wasn’t cheap) and the extraction. I had to do it regardless, since the cavity was too close to the nerve to drill and I couldn’t risk it getting infected. I was also willing to pay extra if necessary for the PRF to reduce the risk of complications. But between the dental bill and my ambulance bill from January, this is turning into a medically expensive year!

I have a few extra appointments coming up soon in addition to my usual list. I’ve been on blood thinners for over 3 months now since my PICC-induced blood clot in January. A recent ultrasound showed that the clot has fully resolved, but since this is the 2nd time I’ve had a blood clot, my transplant doctor doesn’t want to stop the blood thinners until I have a consult with hematology. Additionally, recent bloodwork showed that my iron is low, so I need to do iron infusions again. I tried to see if I could do them at Penn Cherry Hill instead of going to Philly, but for some silly reason my transplant team can only refer me to the Pennsylvania locations, and I need a referral from hematology to get iron infusions at the Cherry Hill location. Hematology didn’t have any appointments available for several weeks, so I’m just going to schedule the infusion in Philly. Yay bureaucracy!

Lately it’s felt like the only time I leave the house is for endless medical appointments! Hopefully now that Spring is here we’ll get out and about for more fun stuff soon!

It's been a long month

What a month!
 
It took a couple weeks, but thankfully Katherine and I have recovered from Covid. The Remdesivir infusions went well, and thanks to my friends I had plenty of food for Pesach (Passover). Unfortunately I kept struggling with nausea, and was wiped out from off and on low grade fevers, so my seders weren’t terribly festive. But I made it through Pesach, and my symptoms didn’t turn into anything serious, so I didn’t have to go to the hospital. Yay!
 
Getting through immediate illness without major complications is only the first hurdle though. Now I need to wait and see how my lungs do afterwards. Every infection has the potential to trigger rejection, which is part of the reason why infections are so dangerous for me. So far my lungs seem to be doing ok, but I need to keep an eye on them for the next few weeks and make sure nothing starts to deteriorate. I’m not sure exactly how long it will be until I’m in the clear, but my next transplant appointment is towards the end of May, so if my lung function looks good then I’ll assume everything is fine. Thank G-d, so far I’ve managed almost 6 years post-transplant without a single episode of rejection, which is remarkable! Hopefully I can continue that streak!!
 
Even though I was pretty much done with symptoms after 2 weeks, my transplant team said I was still presumed contagious for a full 21 days. Aside from making it difficult to fight infections, being immunosuppressed also makes it difficult to fully clear infections, so we tend to shed viruses for longer than most people. Which means I’ve been mostly quarantined for the last 3 weeks. The first 2 weeks didn’t really matter because I was too wiped out anyway, but I’ve really felt mostly fine for the last week. I was able to mask up and leave the house once for lab work and a vascular ultrasound (which thankfully showed that the blood clot in my arm has fully resolved! Woohoo!), but aside from that I’ve been stuck at home.
 
But today I was finally set free! I celebrated by… going to physical therapy. Ha. I’ve been dealing with off and on hip pain since transplant, but never quite got around to dealing with it. It’s typically only an issue if I walk for more than 15 minutes or so, and I have a pathetically sedentary lifestyle, so it doesn’t come up much. But a couple months ago I finally got a primary care doctor for the first time in years to look into some random shoulder pain, and I figured I may as well mention all my random aches and pains while I was at it. So she referred me to an orthopedist, who referred me for physical therapy, where I’m now working to strengthen my hips. I only went for 2 weeks though before catching Covid and being out of commission for the next 3 weeks. Hopefully now I can get back on track and get stronger, and maybe start doing something about making a change to that sedentary lifestyle!
 
And just to be extra celebratory, tomorrow I’m getting a tooth extracted! We found the first cavity of my entire life back in September, but it’s close to the nerve so they couldn’t drill it. It’s also in a wisdom tooth, so instead of going to the trouble of a root canal we’re just going to extract it. It took some time to get things squared away with my transplant team, and then to get an appointment with an oral surgeon, but eventually we scheduled an extraction appointment for December. Aaaand then Lump exploded, and the subsequent hospitalization, surgery, and other medical shenanigans promptly pushed all dental issues to the wayside. So now it’s finally time to address my tooth. After 46 years without a single significant dental issue, I am NOT excited for this. There’s also the fact that immunosuppression and steroids impede healing, so I have no clue how the recovery is going to go. Here’s hoping everything ends up going smoothly!
 
April has pretty much sucked, and the last few months in general have been A LOT. Hopefully this will be my last painful procedure for a long time!!

I'm so over this month

The last 2 weeks have been the ABSOLUTE WORST.
 
Last week, Cam died. And then, exactly one week later, we lost yet another member of the CF Discord server. Michael, aka scarz0ftime, was an actively involved long-time member. He got his double lung transplant about a year before I did, but after less than a year and a half he was already in chronic rejection. We knew that he was struggling and was working on getting listed for a second transplant, but he didn’t post publicly about how bad things had gotten. So it was a huge shock to find out that he died on Monday night. Scarz was a huge presence in the server, from welcoming newcomers, to offering advice and support, to joking around, to knitting people gifts and sending out random postcards to anyone who wanted one. He loved life, and fought long and hard and gave it his all, and he will truly be missed.
 
And then, because everything didn’t already suck enough: After avoiding it for 5 years, Katherine and I finally caught Covid. Which meant that the plans for my annual Pesach (Passover) trip to visit my long-time friend Anna and her family in Pittsburgh were abruptly canceled, and instead I had to scramble to make arrangements for spending the holiday at home. I am VERY fortunate to have amazing friends and an amazing Jewish community, so an army of people immediately sprang into action to get me food and make sure I have everything I need for the seders. I’m definitely not excited about being cooped up at home for the entirety of Pesach, but I am so grateful for all the support I’ve received!!
 
I also had to do all the Pesach cleaning while exhausted and short of breath. I couldn’t even pay someone to come do it for me, since I didn’t want to invite anyone in for a free Covid exposure. Fortunately thus far my symptoms haven’t been TOO terrible, but Katherine has been absolutely laid out by this miserable virus. Even though I seem to be handling it relatively well so far, my transplant team isn’t taking any chances and wants me to get treatment anyway. I can’t take Paxlovid since it interferes with my anti-rejection meds, so my only option is Remdesivir infusions. Insurance tried to deny it at least 3 times, but after 2 days of fighting they FINALLY approved it. A home infusion nurse is scheduled to come out today to put in an IV and run the first of 3 daily infusions. The hope is that they’ll get the IV in today and it’ll last through all 3 days, but my veins are in the habit of being pretty terrible, so I’m honestly very worried about how this will go. But there’s nothing I can do about it, so all I can do is pray and hope for the best.
 
So far the month of April has been just AWFUL. I’m sad, and sick, and utterly exhausted. I truly hope that the upcoming holiday of redemption will kick start a positive turn around.

Saying goodbye to Cam

3 years ago, I posted on Facebook about my friend Cam’s successful double lung transplant. And now, 3 years later, I need to come to terms with the fact that he’s gone.
 
I met Cam in the CF server on Discord. He was a teenager at the time, and had a LOT of struggles in multiple areas of his life. We all basically adopted him into our weird but loving Discord family, and quickly became his primary support system. Sometimes I was his cool aunt, sometimes I was his unofficial therapist, and sometimes we were just friends being ridiculous together. He was unusually sick for such a young CFer, and at just 17 years old he had a double lung transplant.
 
Cam definitely had his struggles after transplant, but over the last year or so he worked hard on starting a photography business and getting into film school despite his ongoing health issues. He was a talented artist, and we were always impressed with his work. All the while, however, he kept struggling with rejection and repeated hospitalizations, and his lung function continued to decline. In December he was hospitalized again and quickly became extremely ill. His team finally started talking about a second transplant, but he had a lot of hurdles to overcome just to get healthy enough to even be listed. Just over a month ago, after fighting valiantly and undergoing multiple painful procedures and treatments that really weren’t getting him anywhere, Cam let me know that he didn’t want to keep working towards a second transplant and that he was ready to rest. Unfortunately, he wasn’t able to go home, but they did what they could to make him comfortable during his last weeks. Over the weekend he took a turn for the worse, and he passed away on Monday night. Ironically, he died on his transplant anniversary.
 
As a friend from the CF server pointed out, the sad part about being a long-lived CFer is having to see others go before us. I’m pretty much an elder in the CF community. No one expected me to live anywhere near this long when I was a child, and I’ve always said that I’ll never hide my age because I am proud of every hard won year. But I’ve lost so many friends along the way. Losing Cam is particularly painful because he barely even had a chance to live. I had such high hopes for his post-transplant life. I wanted him to go to school, and start a career, and move out and live independently like he so desperately wanted. Even when things started going downhill, I had hope that one day he would get a second transplant, and that it would be wildly successful, and that he would get to fulfill his goals and dreams. Watching his plans get derailed by his health again and again, and then losing him at only 20 years old, is just excruciating.
 
Cam’s best friend was Eve, another unusually sick young CFer from the Discord server. She had her transplant at 13, and passed away just a couple years later at 15 years old. Losing Eve was absolutely devastating for Cam, and he missed her terribly. I take some solace in imagining her waiting for him on the other side, and them being reunited in the great beyond.
 
Rest easy, Cam. Your life was far too short and had way more suffering than any one person should have to deal with. You deserved so much better. I miss you.

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!