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.

Celebration time

Fancy dinner with my mom and Katherine at Citron and Rose Tavern and Market to celebrate my double lung transplant, courtesy of my mom's wonderful coworkers!

Bumps in the road

A couple weeks ago I noticed that I was wheezing again, similar to how I was before the bronchoscopy. I had a hunch my airways were already narrowing and that I would need another bronchoscopy sooner than later. On Wednesday my pulmonary function numbers were down 4% and my doctor confirmed that the wheezing and constriction is all on the right side, the same side they had to clean out the last 2 times. He wasn’t concerned and said that this will settle down eventually as my lungs finish healing, and that things already looked better during my last bronchoscopy. Nevertheless, we need to keep on top of it, so that means another bronchoscopy in a couple weeks to open up the airways and clean out any dead tissue. On the plus side, that means another stuffed animal for the Bronchoscopy Collection!

My hips, meanwhile, continue to misbehave. I’ve only seen slight improvement with physical therapy, so we’re trying to get me an appointment with an orthopedic doctor to figure out the next steps. I’ve also been having pain in other joints, including my fingers, shoulders, and knees. I kinda feel like a creaky old lady! My doctor said it’s possible this could be due to one of my medications, but it’s more likely from my body adjusting to being on a lower dose of Prednisone after being on such high doses of steroids for so long. Unfortunately it could take months for my body to finish adjusting, so it looks like pain is just going to be part of my life for now. What’s also unfortunate is that post-transplant I can’t take any drugs that include ibuprofen due to drug interactions, so I’m stuck with Tylenol instead. And before someone suggests medical marijuana, that’s out too, as that also interacts with one of my anti-rejection meds. I never tried marijuana before, and apparently now I never will. Alas!

Once again I have to remind myself that transplant recovery is a long process, and allow my body to heal at its own pace. Which is hard when I feel so much better and want to do all the things! It also isn’t exactly fun being in varying degrees of pain most of the time. But I’ll keep working on being patient, and hopefully things will settle down soon!