The path not taken

I had my monthly bronchoscopy last week. Though there was once again narrowing in some of my airways, there was less necrotic tissue and overall things looked better than last time. Hopefully that means things are moving in the right direction and settling down. I haven’t started wheezing yet, so that’s also progress, as previously it only took about a week for the wheezing to start up again. They still want me to come back next month for another bronchoscopy, but I should start needing them less, and eventually not at all, hopefully soon! The doctor said that this happens in 10-15% of lung transplants, because of course I would have an atypical complication. I’m officially statistically special. We all know I like to keep them on their toes!

During Simchas Torah I lived on the edge and braved the crowds at shul. I of course wore a mask and was careful about washing my hands, and spent a good amount of time outside where there was more airflow and therefore less risk of germs. Probably if I wanted to be 100% safe I should’ve stayed home, but what’s the point of getting a life saving transplant if you don’t actually participate in life? I’m basically still making the same calculations that I did pre-transplant to balance protecting my health with living a fulfilling life. Hopefully I calculate correctly, but at the end of the day I’d rather have a short life filled with good memories than a long life of empty boredom.

I’m still struggling with significant joint pain, which has now spread from my hips, shoulders, and a few fingers to almost all of my fingers, my knees, elbows, and one wrist. Pretty much any movement hurts, and I often hurt when I’m sitting still too. Going to sleep is really fun, as laying in bed without distraction is the perfect time to really focus on all my aches and pains. I have an appointment with an orthopedist tomorrow, so hopefully he’ll be able to offer some relief.

In the CF world, the BIG news this week is that the FDA approved Trikafta, a new genetic modulator that had huge results in clinical trials and treats the vast majority of CF mutation combinations. This is the triple combo drug I tried unsuccessfully to get early access to when my lungs were failing. Not gonna lie, I’m definitely feeling some kinda way about the whole thing. I waited YEARS for them to come out with a genetic modulator that I was eligible for. One breakthrough after the next I was disappointed, as my mutation combination was not eligible for any of the new drugs. Then, FINALLY, the one that I could take was being developed – and my lungs promptly went to pieces. From November through March I kept being overcome with rage as my lung function deteriorated right when a promising new drug was on the horizon. By the time we started talking transplant, I moved from enraged to resigned. And now, here I am, approaching 6 months post-transplant, seeing that long awaited drug finally hit the market. Yeah, I’m a little bitter about the whole thing.

But, I’m trying not to waste time on bitterness. For whatever reason, that wasn’t the path I was meant to take. I need to focus on the path that I’m on and getting through this transplant life. The truth is, I’m probably breathing better than I ever would have even if Trikafta worked miracles for me. If we could just get my pain under control I feel like I could conquer the world! Maybe I’m just supposed to enjoy breathing with these lungs for however long I get.

It’s hard not to imagine the what-ifs and could’ve-beens, especially while struggling with physical pain. But I’ll try instead to look at what is and what will be, to keep putting one foot in front if the other, and to get the most out of the life I have.

Living the high life

That moment when you take a painkiller and realize that it doesn't actually reduce your pain, it just makes you care less about being in pain. Which I guess is an improvement?

Also, on Facebook I wanted to put "Feeling high," but they didn't give that as an option so I had to settle for "Feeling chill" instead. Don't judge my life choices, Facebook!

Happy New Year

I’ve been feeling kinda blah medically the last couple weeks. I had my bronchoscopy, which did help me to breathe more easily once I finished healing from the procedure, but just a week later I already felt the wheezing starting up again. I’m pretty much on a monthly bronch schedule now until my lungs finish sorting themselves out. When they went in this time the narrowed airway on the left side looked better, and there was less necrotic tissue around the incision, but the narrowed airways on the right side looked about the same. So it looks like nebulizers, wheezing, and monthly bronchoscopies will continue to be in my future for a while.

I also had an evaluation at physical therapy, and confirmed that I haven’t made any progress with my hips after almost 2 months. Due to this we decided to hold off on further PT sessions until I see an orthopedist in a few weeks. I do appreciate having a few less appointments filling my schedule, but it was pretty disheartening to go through all that effort and not get anywhere. It’s also exhausting trying to live around near constant pain. I really hope we can find a solution soon.

Erev Rosh Hashana in Cherry Hill was basically total chaos. Saturday night we found out that, sadly, Rabbi Bienenfeld’s father had passed away. The funeral and shiva were on Sunday in New York. In the midst of the community making arrangements for people to make the trip, we were suddenly hit by a massive thunderstorm that caused major damage. The strength of the winds was basically equivalent to a tornado! Trees and power lines were down, roads flooded, transformers exploded, and there were even a couple fires. It was terrifying! Lots of people lost power, which is NOT what you want to happen the day before a holiday when you’re trying to cook and clean and get everything ready. What’s even stranger is that though the whole area got rain, the severe damage was localized to the area around the west side of Cherry Hill. The whole thing felt bizarrely targeted.

I felt pretty unsettled and anxious about our judgement going into Rosh Hashana. Outside was a disaster, with trees and power lines down and roads closed everywhere. People were scrambling trying to figure out how to prepare for the holiday. And not only would Young Israel be without our rabbi, but we would be without our shul as well, as downed trees and power lines made it unsafe to enter the building. All in all it was not feeling like a particularly auspicious time!

But with some help from friends, I was able to focus instead on the beauty that came out of all this. Despite the distance and difficult circumstances, a group of people got up early and drove  to NY to be with Rabbi Bienenfeld for the funeral and shiva. In Cherry Hill, the people who did have power gladly opened their homes to those who didn’t. Someone coordinated with Chaverim and picked up a bunch of generators and fuel to help supply some homes with power. Foxman Torah Institute provided space for Young Israel to daven on Rosh Hashana. All day long on Sunday I saw messages flying back and forth asking for and offering help, and rejoicing together as the pieces fell into place. And somehow, despite everything, we managed to have a beautiful holiday!

I’m still not quite sure what to make of everything. I was already unsettled going into Rosh Hashana, as I’ve had quite the topsy turvy year, and I don’t know what exactly Hashem is trying to tell me. Apparently last Rosh Hashana for some reason Hashem decreed that I should have a year of rollercoaster highs and lows. The chaos erev Rosh Hashana definitely didn’t do anything to ease my mind about what He has in store for me in the coming year! But maybe I should focus instead on how my community somehow pulled everything together in the end. Sometimes we take a hit, and sometimes the hit is hard, but we can still pick ourselves up and keep moving forward. It may be difficult, but even in an unexpected disaster it’s still possible to put all the pieces together and make things work. Even when times are dark and stormy, Hashem is still there, quietly guiding us through it.

May we all have a year with minimal storms and distress, and maximum peace and joy!

My lung transplant story, now on YouTube

I finally put together a video about my transplant! I drafted my mom and Katherine to help tell the tale, and included pictures and videos of the whole process, including video of me being extubated in the ICU and taking my first breaths less than 24 hours after transplant. Sorry for the length, it's kinda hard to condense such a major life experience! I noted times and different topics we discussed in the video description to make things easier to find.

Bronchoscopy day

Another day, another bronchoscopy! Does this gown go with my hair?

The procedure went well, so while I was in recovery it was time for our post-bronch traditions: a new Bronchoscopy Animal and Rita's water ice!

New lungs, new hair!

So this happened! Apparently I'm living the stereotype: survive a traumatic experience, do something crazy with your hair. Shout out to Megan at AVM Salon for making the first time I ever dyed my hair a great experience!

Being human

Sometimes, things are hard.

Of course, things aren’t nearly as hard as they were a few months ago. Which then makes me feel kind of guilty any time I feel down or cranky or anything less than grateful. I feel like I should be on a permanent high just from being alive, and (mostly) able to walk, and (also mostly) able to breathe. Life is SO much better and I am SO much more comfortable now, so why should I ever be anything less than happy?

But apparently, no matter how I may try to deny it, I am only human after all. And even aside from complications, post-transplant life involves some major mental and emotional re-adjustments. There are the emotions around knowing that my life was saved due to someone else’s death, and that while we are celebrating, somewhere out there another family is grieving. Additionally, for decades I didn’t expect to have much of a future as an adult, and at 40 I’ve actually survived far longer than anyone anticipated. In the months and weeks leading up to transplant I was so, SO sick that I basically prepared myself to die. The future post-lung transplant is far from certain, and I still could die – but, I also could live for 10 or 20 years or more. I now have to make the sudden mental adjustment to potentially having a life ahead of me, a life I never planned for or expected to see. You’d think that would be wonderful and exciting, but it’s also kind of terrifying! I was familiar with CF life and mostly knew what to expect and how to deal with it. Now I have to figure out what post-transplant life looks like, what I can and can’t do, how to take care of and protect myself while also doing things that make this all worthwhile. A tall order for someone who didn’t expect to be here!

And then there’s the recovery process and complications. I still have some pain in my incisions and a weird band of numbness across my chest. I have multiple appointments every week, including appointments with various specialists in Philadelphia a few times a month. I’m still figuring out how to manage my new diabetic life. The joint and muscle pain make everything difficult and wear me out. I haven’t been sleeping well, at least partially due to pain, and spend a lot of my time feeling fatigued. My airways keep narrowing and being obstructed with necrotic tissue, which means repeated bronchoscopies (not fun), plus I’m wheezing and rattling for at least a few weeks between bronchoscopies (also not fun). It feels like I have a lot on my plate right now, and it’s unclear when the load will lighten, which then makes me anxious. I’m very good at what if-ing: What if the pain doesn’t improve? What if my airways keep acting up? What if I’m not able to get back to a regular exercise routine? What if I don’t get my energy back? What if I do live a long time but everything just keeps being varying degrees of difficult forever? What if what if what if!

I have to remember that I’m still early in this process, and that it IS a process, and that it takes time. I want everything NOW, but that’s not how this works. Just because things are hard now doesn’t mean they’ll be hard forever, hopefully. Hopefully 3 months or 6 months or a year from now I’ll look back and laugh at my anxieties, because the complications will have settled and I’ll be comfortable with my new medical routine. It’s hard to be patient when I’m quite literally in pain, but I just need to get through one day, one week, one month after the next, and give things time to improve. Some things have already improved in the 4 months that have passed, and I need to remember that my body is still healing and recovering from a major trauma. I can’t know how much better things will get, but I need to be confident that things WILL get better.

And I need to remember that sometimes, I will have bad days, and that’s ok too. Emotional recovery is just as much a part of this process as the physical recovery. I’m only human, and that’s ok.