Birthday musings

Today I am 41 years old. 

A year ago I had a huge blowout bash to celebrate my 40th birthday. The party was spectacular, but there was definitely a grim intent behind it. At 40 years old, I knew that I had far exceeded all expectations regarding my life expectancy. I was increasingly aware of this as my health deteriorated in recent years, and particularly when my lung function dropped sharply during the 3-4 months immediately before my birthday. I was keenly aware that I might not have that many years left, and I wanted to celebrate with as many of my family and friends as possible while we still had the chance. It was a very deliberate "come to my birthday, not my funeral" celebration. 

Even with all that, I had no idea just how quickly my fears would be realized. At the time I thought I had at least a few more years left, and I was just taking advantage of the 40th birthday milestone. Little did I know that just a few months later I would be in respiratory failure, on the verge of being ventilated, fighting for my life and waiting desperately for a lung transplant. Things got so bad during that time that I had multiple conversations with my loved ones about dying, trying to prepare them as I had been preparing myself. By the end I was so miserably uncomfortable that I actually wanted to die just so the suffering would be over. I was holding on by my fingernails, surviving one day at a time. I certainly wasn't thinking about my 41st birthday, and if I had it would have been to wonder whether I'd even see it.

Yet somehow, miraculously, here I am, celebrating yet another year of life. It definitely isn’t the life I would have expected a year ago, both for good and for bad. On the one hand, I can BREATHE, to an extent that I had forgotten was possible. I’ve mostly lost my trademark CF cough. I’m putting on weight without even trying, instead of struggling to hang on to every pound. My health is SO much better than I could ever have imagined! On the other hand, I’m still recovering from an incredibly difficult, complex, painful, and invasive surgery. I’m managing both short and long term complications, and may develop additional problems as time goes by. And I must always live with the knowledge that rejection could strike at any time, and that there’s no way to predict if or when that or any number of other complications could take me out.

It’s definitely a mixed bag – but, I’m alive! And as long as I’m alive, there’s always hope for better things and positive outcomes. Hope is a somewhat unfamiliar and, honestly, frightening emotion for me, and I’m still learning how to integrate it into my life. For some reason I have a much easier time anticipating and preparing for the worst. But I’m trying to learn how to infuse more positivity into my life, and to start anticipating the best for a change.

I’m 41 years old, but my lungs are only 20. Against all odds I’m still alive, yet for some reason my dear donor lived only half as long. I unfortunately don’t know anything about my donor, but it’s clear that their life ended before it even really began. In a way, every birthday that I celebrate extends their life just a little bit longer. They are an essential part of every experience I have, every single breath I take. I hope that I can use those breaths and live my life in a way that would make them and their family proud.

I spent my entire adult life expecting to be dead long before now. Suddenly, I’m trying to imagine what it might be like to continue living for another decade or two. That’s a lot of birthdays I never expected to see! However many I get, I hope I can make the most of them, and always remember how fragile and precious every moment of life truly is.

I'm a professional, really!

Getting ready to pretend to be a Real Social Worker and go to an actual CEU training! Partially because I'm trying to get my head back in the game, but mostly because I've been a liiiiiittle distracted this licensing cycle and have only done 3 of the 30 credits I need to complete by the end of August. Really praying no one in the room has a cold... Also, I'm a little intimidated about being the blue haired freak in a room full of professionals!

Up and down but mostly up

What a week!

Last weekend I decided it was time to do something new with my hair, since most of the purple had washed out. One box of hair dye and a few hours later, I had successfully turned my hair, my skin, and my bathtub a stunning shade of Sonic the Hedgehog blue. Apparently allowing a bottle of hair dye to fall into the hands of a novice was a disaster waiting to happen. Anyone considering using Splat’s Midnight Indigo, be warned: that stuff is basically a nuclear bomb of color! I loved what it did to my hair, but was less than thrilled about becoming half Smurf in the process, and about the Jackson Pollack paint spatters all over the bathroom. Fortunately most of the extraneous color came out with a lot of scrubbing, though I keep turning the bathtub blue all over again every time I take a shower. After all this I may never touch blue hair dye again, but at least it’s fun for now!

On Monday I had my monthly bronchoscopy. Usually it just leaves me groggy and with a moderately sore throat for about a day, but for some reason I had a much rougher recovery this time around. When I woke up afterwards my throat was KILLING me, I was nauseous and had a headache, and I was very groggy and wobbly. It took me days to feel human again, including one night where I didn’t sleep at all due to persistent coughing because my throat was so scratched. So that was loads of fun. On the plus side, my doctor said my airways definitely looked better than last time. Nothing was clogged with debris, and though the airways were narrowed, they weren’t AS narrow as the previous time. He said it’s still too early to see real results from the Sirolimus, but hopefully it will have an impact by the time I have my next bronchoscopy. And HOPEFULLY soon we’ll be able wait more than 4-6 weeks between bronchoscopies.

Side note, the Bronchoscopy Collection is growing nicely. Right now they all live on the coffee table, but a few more bronchoscopies and they may need to find a new home!

On Friday I had an appointment with my transplant team, and did pulmonary function testing. Since I was several days post-bronch, my airways were pretty much at their best. Even so, I was surprised to find out that my lung function was up to 90%! That’s the highest I’ve managed post-transplant! It was very exciting to break into the 90s, so of course Katherine and I had to celebrate with Classic Cake!

It was an up and down sort of week, but fortunately I did eventually recover from the bronch, and definitely ended on a positive note. Hopefully everything will continue on an upwards trend from here!

Back on the bronch train

In November my airways looked so good during my bronchoscopy that we thought things were finally healing, and that I’d be able to go longer than a month before needing another one. At the time that was very exciting news, but unfortunately it was a bit overly optimistic. A few weeks later I was already wheezing and my lung function started dropping. I stubbornly tried to push through it, but finally gave in after drastically huffing and puffing my way up a flight of stairs and watching my numbers continue dropping rapidly at home on my hand-held spirometer. I didn’t expect to be able to get in for a bronchoscopy until after the new year, so I was very surprised when they had me on the schedule less than a week later on December 26^th. I guess not many people want to go in for procedures the day after Christmas!

They found a lot of obstructed airways during the bronchoscopy, far worse than the one in November. We don’t know why my airways were so good in November and then so bad a month later, but I’m once again on a monthly bronchoscopy schedule to keep on top of things. On the right side they once again found airways narrowed due to scar tissue, but on the left side an airway was fully obstructed with “debris” such as dried out mucus. Due to this I need to get back on track doing nebulizers at least twice a day to help clear out secretions, after seriously slacking and hardly nebbing at all during the last couple months. I’ve still been slacking, but I have been consistently nebbing once a day, and am working on getting back up to twice a day. My doctor also wants me to start a medication (Sirolimus) to help reduce scar tissue, as he expected my airways to stop narrowing by now. I couldn’t take Sirolimus before now as it impedes the healing process, which is pretty much the opposite of what you want immediately after a major surgery. Sirolimus is also an immunosuppressant, so we’ll have to keep an eye on my bloodwork and adjust all my other anti-rejection meds accordingly. The whole thing is pretty disappointing, and it kinda feels like I’ll be doing bronchoscopies every month for the rest of my life, but hopefully my lungs will get their act together and chill out already sometime soon.

I’ve been feeling kinda blah the last few months. I became increasingly unhappy and demotivated while dealing with months of debilitating joint pain, but even now that the pain is gone I’m having difficulty getting my mojo back. I’m very tired a lot of the time, which apparently is common post-transplant, but it’s hard to be social or productive when all you want to do is sleep. It’s also a difficult time of year for getting out and about, since right now a lot of activities involve indoor crowds, which is really risky for me during cold and flu season. I keep thinking of fun things to do, like going to the Convention Center portion of the Mummer’s Parade, and then realizing I can’t. I’m also definitely still adjusting emotionally to post-transplant life, and probably will be for a long time. I randomly get overwhelmed by fear and anxiety when I think about what I went through and all the risks and uncertainties that my future holds. A lot of the time I just want to curl up on the couch and hide from everything. But I’m trying to push back against that and figure out how to make a life that makes me happy while also protecting my health.

I fully recognize how extremely well my transplant is going and how very lucky I am. I’ve seen people go through far worse, and am painfully aware of how bad things could be. At the same time, no matter how smoothly things go, transplant is a difficult journey on multiple levels. I’m navigating my way through both physical and emotional challenges, and sometimes I get stuck. But I’ll keep pulling myself free and moving forward, and putting the pieces together one by one, as I continue figuring out my post-transplant life.

Happy Chanukah!

For the first time since 2016, I was able to light the menorah on all 8 nights of Chanukah -- because for the first time since 2016 I was NOT in the hospital for ANY of Chanukah! It's also been almost 7 months since the last time I was on IV antibiotics and/or hospitalized, and I haven't managed THAT since at least 2015. May this be the first of many hospital-free Chanukahs!

Donor Dash!

Current goal: do the real Donor Dash this year instead of the inpatient version! Time to start training!!

Also, if anyone wants to see last year's inpatient donor dash, I actually recorded it for posterity: https://youtu.be/t7tZO8gqt0Y

Gift of Life Donor Dash 2020

6-month bronchoscopy!

Today was 6 month bronchoscopy day - yes, it's been 6 months since my transplant! I'm currently in the post-bronchoscopy sore-throat worn-out still-groggy-from-anesthesia stage, so right now Katherine is dealing with me wandering around whimpering pathetically when I'm not laying in my recliner and pathetically whimpering from there. But she's the best girlfriend ever so she's cheerfully putting up with me and making me delicious mashed potatoes that won't be rough on my throat. And she got me yet another adorbs Bronchoscopy Animal for the collection, which always makes everything better.

Everything went well, and the surgeon said this time my airways looked great! He said they looked almost as good as after he finished my last bronchoscopy, they barely needed any dilation, and there was NO necrotic tissue! This means my lungs are finally healing up nicely and I shouldn't need another bronchoscopy for a few months. I probably won't make it the full 6 months until my regularly scheduled 1 year bronchoscopy, but anything more than a month between bronchs will be a welcome break!

The other good news this week is that I've been in significantly less pain. We stopped my anti-fungal medicine last week since I'm now 6 months post-transplant with no signs of fungal infection. My doctor said it was possible that medication was contributing to my joint pain, though he thought primary culprit was probably Prednisone withdrawal. A few days after stopping the anti-fungal, however, I suddenly had far less pain and much more range of motion! The pain isn't completely gone, but it's MUCH better and I feel much more functional. I did have a brief run of good days once before, so I'm a little anxious that it won't last, but I'm hopeful that maybe the anti-fungal was responsible for the bulk of my pain and that I'll do much better now that I'm off it. Fingers crossed!

So it's been a week of good news, despite bronchoscopies not exactly being a good time. Hopefully it'll be the start of an ongoing upwards trend!!