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!

Let it snow!

IT'S SNOWING!!!

Hoping we get enough and it's the right consistency to sculpt with! I haven't snow sculpted since before transplant, it's time to see what these new lungs can do!!

A few hours later...

I did it!!! The snow was a bit crumbly and wasn't the easiest to work with so I kept it small this time, but I got my snow sculpt on! Meet Snowball the snow cat!

And the verdict is...

It’s official: Pseudomonas REALLY loves me.
 
A few weeks ago, we got the results back from the sample they took during my bronch. Unfortunately, even after all that treatment in August, they STILL found Pseudomonas in my lungs. It’s unclear whether we never fully eradicated it or if my sinuses just reinfected my lungs that quickly, but either way it was very upsetting. I literally screamed with frustration after hanging up the phone. Damn you Pseudomonas!!
 
The new plan is to put me back on a nebulized antibiotic, specifically Tobramycin. Tobramycin is the one that gave me tinnitus, but taking it via nebulizer is far less risky than IVs. I haven’t done Tobra nebs in years because over time my airways became increasingly reactive, and I started having significant asthmatic symptoms every time I took it. Hopefully my new lungs will tolerate it better, especially since my clinic’s protocol is to only give post-transplant patients a half dose. I’m also taking an albuterol nebulizer beforehand to help open my airways and counteract any negative reactions. The downside of this is that it’s been so long since I took albuterol that I’ve completely lost my tolerance for it. For years I did albuterol nebs at least twice a day, so they didn’t really affect me.  Yesterday I took my first albuterol neb in months, and boy did it mess with me. My heart was racing, my hands were shaking, and for hours afterwards I felt shaky and worn out and had a headache. I really hope my body gets reacclimated to albuterol soon!
 
I was pretty freaked out when I got the bronch results, but I’m feeling calmer after hearing from some other post-transplant CFers who have dealt with Pseudomonas without it impacting their lung function. My team also wasn’t alarmed and reassured me that this is not uncommon, and that I will likely just keep going on and off Tobra nebs as needed. I’m not excited about getting back into a twice a day neb routine after having a nice little break for the last year or so, but that’s definitely easier than IV antibiotics. I also feel a little spoiled complaining about a few nebs after spending most of my life doing multiple nebulizers 2-4 times a day on top of airway clearance. My current nebulizer routine is still SO much lighter than it was pre-transplant!
 
Unfortunately, I’ve still been struggling with fatigue and low mood. We decided a couple weeks ago to discontinue the Trikafta entirely, since it’s unclear how much benefit I’m getting and it could be worsening those symptoms. I do think my mood has improved a bit, though I’m not sure about the fatigue. We recently discussed the fact that my iron levels have been a bit low, which could be contributing to my fatigue. Unfortunately, oral iron supplements can slow down the gut, which is already a problem for me due to CF digestive issues and gastroparesis (aka delayed gastric emptying). Due to this, I’ll have to go in for iron infusions once a week for 3 weeks. During that time I’m also scheduled to get an infusion of Reclast to improve my bone density, which has been damaged by years of steroid use. Apparently infusions are the theme for December! I’m a little worried about how my terrible veins will handle all these IVs and infusions, since I no longer have a port and I doubt they’ll give me a PICC line for just 4 infusions. Hopefully it won’t be too bad, and HOPEFULLY treating the anemia will be the fix I need to get my energy back!
 
I’m super not excited about heading into cold and flu plus Covid-Part-2 season. I guess it won’t really make much difference since I’m already isolating and being super careful, but it’s never fun knowing there are even more germs floating around trying to kill me. It’s also even less fun hunkering down and trying not to die when it’s all cold and dark and depressing outside. I remember how exhausting cold and flu season was last year, and how much I was looking forward to spring, only to get slammed with Covid instead. This year is worse since I’ve already been on varying degrees of lockdown for a full year now. Hopefully all the promising news about the Covid vaccine will come to fruition, and maybe I’ll FINALLY get released sometime this coming spring or summer!
 
That’s the latest in my life of medical shenanigans. Hopefully I’ll have a more uplifting update sometime soon!

New additions to the Bronchoscopy Collection!

I'm home! Bronch went well and the doctor said my airways looked significantly better this time. They still did some dilation, but hopefully I'm finally making some real progress after a year and a half of endless bronchs. Maybe some day I'll actually be able to get off this bronch train!
 
When I was hospitalized in August I had an unexpected bronch, and Katherine wasn't able to get me a bronchoscopy animal. So I got a bonus this time!