2nd lungiversary

A few weeks ago I let an important milestone pass with limited fanfare. On May 12^th, I celebrated my second lungiversary.
 
From the outside it may seem like my lungiversary would be a purely celebratory day. And I definitely did celebrate! I made lung-shaped cookies and brought them to my transplant and CF teams, to the nurses on my usual hospital unit and the post-transplant unit, and to my surgeon. Katherine and I also got together with my mom and Frank for a celebratory dinner. My mom decorated the back deck for the occasion, and even got me a gift! We already have a well established tradition to get me a little stuffed animal every time I have a bronchoscopy (aka The Bronchoscopy Collection), so my mom decided she wanted to start a new tradition and get me a gemstone animal for each lungiversary. She began my new collection with a beautiful lapis lazuli swan, which hopefully will only be the first of many!
 
At the same time, I am keenly aware of the fact that on the day I celebrate life, there is another family somewhere out there who is mourning the loss of a loved one far too soon. The fact that someone else had to die before I could be saved is a sobering reality that I live with every day. In Jewish tradition, on the anniversary of a loved one’s death, mourners light a yartzeit candle which burns for a full day. This year I started the tradition of lighting a yartzeit candle on my lungiversary to honor my donor and their family. It’s a small gesture, but hopefully it will help me keep their loss in my mind even in the midst of celebration.
 
In addition to this, I lost yet another friend to CF a week before my lungiversary. My friend Jacob had a much-needed lung transplant in January, but unfortunately it didn’t go well, and he died less than 4 months later. It’s yet another reminder of the risks of lung transplant, and the fragility of post-transplant life. I already struggle with survivor’s guilt, as so many of my post-transplant friends are either already gone or are struggling with significant health issues. Losing Jacob before he even had a chance to enjoy his transplant is a bitter pill to swallow.
 
Under the best of circumstances, my lungiversary involves complex and conflicting emotions. These were not the best of circumstances, and once you add Covid to the mix, I really wasn’t up for planning any big celebrations. I started off the day feeling very somber as I lit the yartzeit candle at midnight, which is right around when I got the call that they possibly had lungs for me. My mood picked up during the day when I delivered the cookies, as everyone at the hospital was thrilled to see how well I’m doing. And a quiet celebration with my family was the perfect way to end the day.
 
Being alive and being able to breathe is a tremendous gift, and I am so extremely grateful for it. Hopefully next year the world will be a less dangerous place, and we’ll be able to celebrate the next milestone together!

And for today's medical misadventure...

I’m having a day.

It’s been quite some time since I wrote a health update. Don’t let that fool you, my life is still an endless litany of medical shenanigans, I just don’t always have the energy to write about them. Remember how excited I was back in December when I was full of energy and iron infusions? Unfortunately, that didn’t last long, and I’ve been back to being tired and listless. After a few weeks my hemoglobin level and some other numbers still didn’t show significant improvement, so I did another 3 weeks of iron infusions starting March 1^st. This time, however, I didn’t even get a temporary burst of energy. It can take a few weeks for iron infusions to have an impact, so hopefully things will pick up eventually, since my doctor isn’t terribly keen on going for another round if this one doesn’t work. Apparently pseudomonas feeds on iron, so he doesn’t want to over-iron me and give it a chance to dig in even deeper. Of COURSE my medical needs are complex and conflicting, simple would be BORING.

In February I saw my ENT, and he was very pleased with how my sinuses look. I also had a regularly scheduled bronchoscopy, and it actually went really well! The doctor said my airways look much better and he didn’t have to do much dilation. He also said that I probably don’t need to continue scheduling regular bronchs, and that I can just have them as needed instead. And for the first time in ages, pseudomonas did NOT turn up in my sputum sample! So it seems like some things are FINALLY starting to behave!

I also had a day in January when I got to run to Philly for a last minute doctor’s appointment because I developed painful lumps at the end of each transplant incision. Fortunately they weren’t a big deal and are just permanent sutures that for some reason decided to get irritated. That’s transplant life; unexpected, random medical issues that need to be addressed IMMEDIATELY just in case they turn out to be something significant. It really is a full time job.

But none of that is why I’m having a day. Today, I woke up in a puddle because my feeding tube leaked. This happens sometimes and is usually just an annoyance, but today it decided to turn into a Super Annoyance, because apparently my feeding tube is BROKEN. I have what’s called a “button,” which is small and low profile, and has to be attached to a connector tube in order to hook up a feeding bag. Well this morning the part where the connector goes decided to pop right out, leaving the tube wide open with no way to close it, with gastric juices leaking out. Gross!! I tried taping it back into place, but it wouldn’t seal and continued leaking. I tried unsuccessfully to find something to plug up the hole. I tried taping the whole thing up, first with transpore tape (still leaked), then with flex fabric bandaids (better, but still leaked after about an hour). Finally I tried shoving an earplug into the hole to seal it, and then taped THAT all up with flex fabric bandaids. SUCCESS! Just call me MacGyver!

So now I’m walking around with an earplug shoved into my now-useless feeding tube until I can get it replaced. It was not a good start to my day, especially since it’s unclear how long it will take to get an appointment with interventional radiology to fix the situation. I actually used to be able to replace my feeding tube myself, but that was back when it was a simple G tube which went straight into my stomach. I now have a GJ tube, which has a long tube that needs to be inserted into my small intestine. The advantage of the GJ is that it’s less likely to cause reflux, which could be aspirated while sleeping and potentially cause pneumonia. The disadvantage is that replacing it is a whole procedure. I’ve already been stressed and cranky about the fact that Pesach (Passover) is in less than a week, and I REALLY didn’t need to add annoying and unexpected medical shenanigans to the mix. But for some reason, Hashem has decided that is in fact EXACTLY what I need, so here we are.

Pray for Katherine. Dealing with Pre-Pesach Stressed and Attitudinal Eliana was already a trial. Dealing with Leaky Feeding Tube Eliana on top of it? Nobody deserves that!

So that’s my latest medical misadventure. Hopefully it will be resolved soon!

Covid shot #1!

I got my 1st Covid shot! Thank you Frank for helping me get on the waiting list at Rite Aid so I don't have to wait another 1-2 months for an appointment! They had some no shows today and needed to use the doses before they expired, so I was able to jump in for a last minute appointment. The perks of being disabled and having an open schedule!

Getting vaccinated won't actually change how I live my life, since we have no clue how effective the vaccine will even be for me. Vaccines work by creating an immune response, and that's something my body doesn't do well since I'm immunosuppressed. I'll still need to be extremely cautious since it's likely I'll remain very susceptible to the virus. My vaccine definitely won't be 95% effective, but hopefully it'll do SOMETHING, and something is better than nothing.

What I really need is for Katherine to get vaccinated, but unfortunately living with a high risk person is not a qualifying condition here. She's stuck at the bottom of the list with all the other young, healthy people.

But even with all the caveats, this is very good and exciting news! I'm very grateful, and I'm hopeful that we're finally inching our way closer to normalcy!

Happy Purim!

Initially I wasn't going to make a costume or bother with a theme for my shalach manos, but I decided that would just make Purim even MORE depressing. So instead, my costume pretty much sums up how life feels right now! Despite everything, I got to go outside a bit and see a few people and even have a delicious meal from Izzy's Smokehouse. And then I got a rambling blessing in Yiddish from an outrageously drunk chasid, so overall I'd say my Purim was a success!

Hopefully next year we'll finally be able to celebrate together in person!!!

Snow day sculpting!

 A solid storm with perfect sculpting snow means I got to make my first REAL snow sculpture since before transplant! 3 years ago Katherine and Frank had to pile up the snow for me because my lung function was too low to manage it. I still needed Katherine's help today, but I also was able to do more than half of the heavy lifting myself! Yay new lungs!! And so, in today's edition of snowmen are for amateurs, I'm proud to present: Kimba!

New year, new me!

I think I haven’t gotten a haircut for almost 2 years. I did go to a salon in September 2019 to get it bleached and dyed, but I’m pretty sure we didn’t cut it then, which means my last haircut was in February 2019 shortly before my big 40^th birthday party. After transplant I lost a LOT of hair, which actually isn’t unusual, but it was still pretty alarming to see it coming out by the handful. My doctor reassured me that it would stop within a few months (for those who know Dr. Courtwright, his exact words were “Don’t worry, you won’t end up looking like me”), and it did, but my hair was visibly thinner. Between that and the abuse I put it through with bleaching and dying, my hair has been looking pretty scraggly and gross, and I’ve been itching to get rid of it.
 
Meanwhile, Katherine has been cutting her own hair for decades, and also used to cut her friends’ hair. She’s been offering to cut my hair for AGES. I’ve been super restless lately and REALLY wanted to chop off my hair, but I also don’t feel comfortable allowing anyone near me right now, particularly since I’ve somehow managed to have 2 (low level) Covid exposures this month. So… Katherine finally got her wish! Introducing the new me!

Iron is miraculous!

I finally have some GOOD news for a change: The iron infusions are working!
 
I got my first iron infusion on Monday November 30^th, and a few days later I already had more energy and motivation. Over the last couple weeks I’ve felt more like myself than I have in MONTHS. The biggest change I’ve noticed is that I’m cooking again! Since the summer, I’ve only cooked when I had extra motivation, such as Shabbos or holiday meals. The rest of the time I just scrounged up whatever was easiest because I couldn’t be bothered to do anything more. It got to the point where even boiling pasta was too much, and most of my weekday meals were pre-made garbage. The times that I forced myself to cook took a LOT of effort, and I was usually pretty cranky by the time I dragged myself off the couch and into the kitchen.
 
But then! A few days after my first iron infusion, on a random weekday, I made tuna casserole for the first time in months. A couple days later I baked cookies. Last week I decided to make latkes for the first time ever, and they were so good that I did it twice! And then I made more cookies! And then I got REALLY ambitious and tried my hand at homemade donuts!! These tasks that seemed impossible a few weeks ago are suddenly easy, and I’m not even grumpy about doing them! And whereas before I spent almost every day laying on the couch, over the last couple weeks I’ve become a bit more active, and a bit more social, and just overall happier and more energetic. It’s amazing what a little iron can do!!
 
The iron infusions haven’t exactly been a party, however. Fortunately my veins held up to repeated IVs, but it burned a bit going in and the IV site was pretty sore afterwards. The infusion itself took an hour and a half, and the whole process took almost 3 hours. And because of Covid, no one could come into the infusion center and sit with me. After each infusion I was exhausted, and also had abdominal cramps as a fun side effect. I got my 3^rd and final iron infusion this week, and I’m definitely glad they’re over! But I’m even more glad that they were actually worth it!!
 
I still have some medical shenanigans to go this week, in the form of a follow up appointment with my transplant team, and an infusion of Reclast to help promote bone growth since my bones have become thin due to steroid use. But HOPEFULLY after this I’ll FINALLY catch a bit of a break, and maybe even get a chance to actually enjoy feeling like myself again!