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!

One foot in front of the other

I’m tired.

Since getting home from the hospital at the end of August, I’ve been very fatigued and kind of depressed. I wasn’t exactly full of joy and energy before then, but things seemed to get markedly worse. After about a month I realized that this coincided with starting Trikafta, so I reached out to my doctor. Turns out these can be side effects of Trikafta, so we halved my dose. I felt less depressed the following week, but have still been very fatigued. My doctor said this could be due to the CMV flare up over the summer, and that unfortunately it can take a while to recover.

Part of the problem is that it’s very difficult to tease out which issues are medical symptoms, and which are related to mental health. Transplant is a VERY intense experience, and depression and anxiety after transplant are not uncommon. I still have lingering trauma from what I went through before and during the transplant process. In addition, life after transplant is fragile and uncertain, a reality that is very stressful to live with. And as if that isn’t difficult enough, I also end up feeling guilty about being depressed and anxious! I feel like I should be perpetually full of joy and gratitude for this precious gift of life and relative health, and that I have a responsibility to live my best life for my donor as well as for myself. So I end up not only feeling depressed and anxious, but feeling bad about feeling depressed and anxious. It’s super fun.

Now take all that, and throw a life threatening and confining global pandemic on top of it. Just what I needed: another threat to add to my already long list of fears! How am I supposed to distract myself from those fears and live my best life when I can barely leave the house? I’m dealing with the same stresses and fears and struggles as everyone else, ON TOP of my already elevated baseline of stresses and fears and struggles. This makes it REALLY hard to figure out the cause of various symptoms. Is the fatigue a symptom of depression, or a medical issue? Have I been depressed because of medication, or because of the world at large? What is going on???

Despite all this, overall I’ve still been doing really well medically. I had a follow up appointment on Friday and once again my lung function was an amazing 92%! My chest CT scan looked good and showed that the pneumonia from August has cleared up completely. Tomorrow I have a bronchoscopy, so we’ll see how my airways look and get a sputum sample to check for infections. Here’s hoping Pseudomonas finally got the message and moved out!

I’m just trying to put one foot in front of the other and keep getting through this 2020 life. Hopefully it’ll get easier soon!

Looking back

Rosh Hashana was a week ago, so tis’ the season to take an accounting of the previous year! One year ago, my intense joy and gratitude for being alive after an intense life or death battle was beginning to be tempered by the difficulty of dealing with various post-transplant complications. Transplant complications unfortunately became a bit of a theme for the year, though thankfully nothing TOO severe. Nonetheless, life was already pretty stressful even before Covid hit. But I definitely didn’t expect to go into my second Rosh Hashana after transplant overwhelmed and exhausted from a far more subtle yet just as real months-long struggle for survival.

This has been my first year of post-transplant life. It has been marked by incredibly good progress, including a terrific level of lung function and no hint of rejection. But it definitely hasn’t been smooth sailing. I became diabetic due to my medications and had to learn how to manage my blood sugar with insulin. I spent last September through November almost incapacitated with terrible joint pain caused by one of my medications. I’ve been getting bronchoscopies every 1-2 months because my airways keep closing up. I’ve had repeated lung infections, which led to weeks of IV antibiotics, and ultimately resulted in pneumonia and a 2 and a half week hospitalization.

I also have CMV. CMV (Cytomegalovirus) is a common virus that many people carry asymptomatically. One of the reasons my transplant was considered high risk is because my donor had CMV, while I did not. Things were so dire before transplant that I didn’t consider turning down these lungs for even a second, but this means that we knowingly put a new virus into an immunocompromised person. Due to this I was on antiviral medication for the first year after transplant. After a year without any signs of CMV we tried stopping the antiviral, but a few months later CMV showed up in my bloodwork. I’m now back on the antiviral and likely will be for life. This isn’t a big deal, but a donor-recipient mismatch for CMV increases the risk for chronic rejection, as does the fact that I keep battling Pseudomonas infections.

We also don’t entirely know the current status of my Pseudomonas infection. I haven’t noticed any overt symptoms, but I also didn’t notice that I was developing pneumonia until I started running a fever. I’m scheduled for a follow up CT scan in 3 weeks to make sure the pneumonia is gone and that my lungs look ok. A week later I’ll have a bronchoscopy and will probably have my airways dilated once again. They’ll also take a sputum sample, which will show whether or not I still have Pseudomonas in my lungs. I kind of have an undercurrent of anxiety about Pseudomonas possibly lingering in my lungs, since it very much snuck up on me last time. I won’t really believe it’s gone until we get clear test results.

Of course, even if it is gone, it will never be GONE gone. There’s no way to clear out every nook and cranny of my sinuses, which are still full of infections and sticky CF mucus. Hopefully that’s improved now that I’m taking Trikafta, but when you have CF it’s almost impossible to fully eradicate infections like Pseudomonas. The question is whether we can improve my sinuses enough to keep them from repeatedly infecting my new lungs and putting them at risk. Only time will tell.

Pandemic life hasn’t exactly been kind to me. On the one hand, in some ways I had less to lose than a lot of people. My world was already pretty small, and I was already abiding by many of the restrictions that were new and surprising for everyone else. On the other hand, my life is very much in danger from this virus, which means I need to be even more careful than most people, and I’ve known from the start that I’ll need to do it for longer. On top of that, I’m keenly aware of the fact that I’m living on borrowed time and have no clue when the clock will run out. Most people anticipate many full years after the pandemic during which they can make up for the time and experiences they’re missing now. I, unfortunately, don’t have their confidence. It’s extremely hard to watch my precious post-transplant time being wasted by the pandemic. I have these wonderful new lungs, I have this precious gift of extra, unexpected life – but right now I can’t do anything with them, and I have no guarantees about how much time I’ll have left to enjoy them once the pandemic is over. It’s extremely frustrating.

I’m very, very good at anticipating and stressing about all the things that could possibly go wrong. This is particularly unfortunate after transplant, because it’s a LONG list! With Covid, I have fewer opportunities to distract myself with joyous life experiences, and more space to sit in my fears. It honestly hasn’t been great.

5780 has been an unexpectedly difficult and overwhelming year on multiple levels. Hopefully things will turn around in 5781!