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.