Struggling

I just realized it’s been almost 3 months since I wrote a health update. I’ve *thought* about writing, and really felt like I *should* post something, but I just haven’t been able to muster up the mental energy to actually do it. Don’t let the social media break fool you into thinking that my life is quiet, however. It’s almost always a safe bet that I have some sort of stress and drama going on.
 
I once came across a little picture book called All My Friends Are Dead, which was a good fit for my often dark and morbid sense of humor. I’ve been thinking of that book a lot lately, because my life is starting to feel that way. This year has been pretty brutal for the CF server on Discord. In May we lost Jacob, less than 4 months after his double lung transplant, at just 25 years old. And then, a couple weeks ago, we lost Eve. Eve got her transplant in 2019 at only 13 years old. She struggled with rejection pretty quickly, and was waiting for a second transplant, but sadly she couldn’t hold on any longer. She was just 15 years old.
 
In the midst of all this death and tragedy, I also had my own health struggles. In June I started running a low grade fever, culminating in a sudden spike to 102.4. You don’t play around with any sign of infection when you’re immunosuppressed, particularly fevers, so a fever that high sent me straight to the ER. I followed almost exactly the same fever pattern last summer, and sure enough I once again had a pseudomonas infection brewing in my lungs. You might remember from last year that my pseudomonas has basically been supercharged from decades of antibiotics and is now resistant to almost everything. There’s now only 1 IV antibiotic that we can use without putting my hearing and/or kidneys at risk. Fortunately, that antibiotic can now be administered at home, so I only had to spend a few days in the hospital instead of the full 2 weeks. Unfortunately, I had to give myself a 3-hour infusion every 8 hours, which was divided into 2 separate 1.5 hour doses, so I didn’t get much in the way of sleep that whole time.
 
It’s very frustrating to keep battling these infections, especially since I know where they’re coming from yet can’t do much about it. I already had surgery last summer to try to clear out my sinuses and reduce the infections, but it doesn’t seem to be helping. I’m now back on a nebulized antibiotic every other month to try to keep things under control, and probably will be for life, since I ended up in the hospital when I tried stopping for a few months. My current medical routine is still WAY better than my pre-transplant life, but I can’t help wishing things would be just a little easier. Of course, then I feel bad about complaining, since I know many people struggle so much more than I do. Survivor’s guilt sucks.
 
And then of course there’s Covid. While it seems that the rest of the world is making their way back to business as usual, I remain mostly locked down. I remain at high risk for severe, life-threatening illness, as unfortunately my anti-rejection meds prevented me from producing Covid antibodies. This wasn’t surprising, but was still disappointing. My doctor does believe, however, that the vaccine produces other immune responses that don’t show up on testing, as vaccinated transplant recipients aren’t getting quite as severely ill if they catch Covid. There’s also evidence that some immunosuppressed people who didn’t respond to the first 2 shots DO respond to a 3^rd dose, so I got my 3^rd shot just over a week ago. Here’s hoping!!
 
Overall I’ve had a lot weighing me down over the last few months. I wasn’t exactly a paragon of emotional stability before that either, so I really didn’t need more stress and sadness in my life. With Covid continuing to hang over my head, and the annual danger of cold and flu season coming up, things aren’t feeling particularly hopefully right now. I am physically and mentally exhausted.
 
I don’t look at Facebook very much these days, so please don’t be offended if you share something important and I don’t react. Chances are I didn’t see it. I’ve also been even more terrible than usual at responding to texts and phone calls, as I tend to crawl into an antisocial cave when I’m stressed and unhappy, so please don’t take it personally. I really appreciate the efforts of those of you who continue reaching out to me despite this! Thank you for putting up with me!

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!