Going home!

I’m. Going. HOME!
 
In a surprising turn of events, everyone somehow managed to get it together despite the impending holiday weekend! I got my PICC line placed yesterday, and home infusion will be coming out this evening to get me all set up. So an unexpected miracle actually happened, and I’m going HOME!
 
I am VERY relieved to finally get out of here, but the next several weeks will NOT be a picnic. The antibiotic I’m taking is given every 6 hours, which is difficult enough, but it also runs for 3 hours at a time, which basically means I’ll be running infusions almost all day long. And last time I did this antibiotic on home infusion they couldn’t fit the full dose into 1 bag, so I actually had to run 2 separate 1.5 hour infusions 4 times a day. It’s a pretty grueling infusion schedule, and I won’t be getting many consecutive hours of sleep during the next several weeks.
 
Huge shout out to both Katherine and my mom, who have both offered to learn how to run my infusions and give me a break. I don’t talk enough in these updates about the awesome support they’ve given me through one medical crisis after the next. They’ve been a terrific team since before my transplant, always keeping me company in the hospital and bringing me whatever I need, running me to the ER at the drop of a hat, taking me to various appointments and procedures. I don’t know what I’d do without them! And then there’s all of the day-to-day love and support that Katherine constantly gives even when it’s not a crisis. Having a partner with a life-threatening medical condition is incredibly stressful and exhausting, but she just keeps pushing through it. I still don’t know why she signed up for this crazy life with me, but I am so endlessly grateful that she did!
 
I’m in for a long haul here, and I’m definitely not looking forward to it, but at least I’ll finally be HOME!

Rollercoaster ride

Pardon my language, but today has been a f***ing rollercoaster.
 
This morning my team came in and said that the stains (quick tests) came back negative, so I could go home while we wait for the results from the cultures (slower tests). Cultures can take weeks, so there was no point keeping me here when they didn’t even know which antibiotic to treat me with. I was THRILLED to FINALLY get out of here and get a bit of a break before starting IV antibiotics. Alas, the thrill was short lived. Barely 20 minutes later, just as I was finishing packing, I got a call letting me know that they unexpectedly got a result from the culture. Apparently the lumps are being caused by the usual suspect, my lifelong nemesis, pseudomonas. I should’ve known! So now I am NOT going home and am being started on IV antibiotics immediately. I won’t be here for the whole course, but the likelihood of pulling home care together before the holiday weekend is pretty slim. Maybe a miracle will happen, but otherwise I’ll be stuck here for YET ANOTHER holiday weekend.
 
This is the ABSOLUTE WORST time of year to get hospitalized. I recommend avoiding it at all costs.
 
This will likely be a lengthy course of IVs. Apparently it takes longer for antibiotics to penetrate abscesses because there’s no blood flow inside them. The infections are also close to the bone, so they want to be really thorough and make sure the antibiotics penetrate there too. So I might be on IVs for 6 weeks, which sucks. Then again, it doesn’t suck as much as a full year of antibiotics, which was one of the options if this was a mycobacterium. Silver lining?
 
Surgery is also up in the air right now. My surgeon doesn’t want to open me up until I’ve had a few weeks of antibiotics, and is actually hopeful that antibiotics alone will be enough and I won’t need surgery at all. The Infectious Disease team really wants the abscesses opened and drained because they’re concerned about the antibiotics being unable to sufficiently penetrate, and are very concerned about my pseudomonas becoming resistant to one of the only antibiotics I have left. The current plan is to reassess and make a decision after a couple weeks of IV antibiotics.

So here I am, still at HUP. I don’t think I’ve ever spent so much time sitting around waiting for things to happen during a hospitalization. Holiday hospitalizations are the WORST! But at least now we FINALLY have some answers and a treatment plan. Let’s all hope for no more drama so I can get out of here SOON!

Well we know what I don't have

I don’t have cancer!
 
The part I left out of the previous update is that Lump Jr. is actually in my breast. That sounded too alarming to publicize when we were 99% sure it was NOT cancer. There’s always that tiny chance though… Part of what took so long is that we needed to wait for the breast imaging specialists to come back from the holiday weekend. One mammogram and an ultrasound later we confirmed what we thought: NOT cancer. Yay!
 
The breast imaging team came to the rescue again today. They had a last minute cancellation and were kind enough to whisk me in for a biopsy instead of leaving it to the regular medical teams. They put needles into all 3 lumps and withdrew pus, which confirms that there is in fact an infection in there, but we won’t know which infection until the test results come back. We should have some results back within 24 hours, but if it’s a mycobacterium that could take weeks to grow and identify. At least we’re finally on the road to getting some answers!
 
I continue to sit tight in the hospital while we wait to see if the preliminary results give us any guidance in terms of antibiotics. I’m also supposed to see my surgeon to discuss the plan for opening me up and cleaning things out surgically, but apparently he did transplants both yesterday and today, so I got bumped off the schedule. That’s ok though, I’m glad people are getting their transplants! I hope they all do well!
 
In other news that I know some people have been waiting for, I made Pole People! This time I’m not using a pole though so they’re just all around the room. I actually had a fun Pole People related moment yesterday. I’m not on my usual unit, and I can’t remember ever staying on this specific floor, but apparently I did because one of my nurses recognized the Pole People immediately and was super excited! I hope you enjoy the latest crew as much as she did!

The waiting game

Well that was a long, boring weekend.
 
I found out on Friday that Lump 3 actually appears to be Lump Jr, and is likely an offshoot of one of my original lumps. They’re pretty sure the source is some sort of mycobacterium, but they need to biopsy everything to know for certain. Unfortunately Lump Jr is deeper than the initial, more superficial lumps, so now we need to consult with plastic surgery. And of course they had already peaced out for the holiday weekend by Friday.
 
I actually had the option of going home on Friday and pursuing this as an outpatient, but we had some concerns. For one thing, if anything went wrong I’d be back in the ER, and I already went to the ER twice last week. Aside from not wanting to spend hours waiting again, I definitely didn’t want yet anther exposure to the crowded, germ ridden ER waiting room. Also, being inpatient makes my case a higher priority and gets things done faster than doing it outpatient. And finally, Covid cases are ramping up and hospital beds are in short supply. My doctor was worried that they’d have trouble getting me in if I needed to come back – or worse, that outpatient procedures might start getting canceled.
 
So I made the difficult decision to stay here and just twiddle my thumbs all. Weekend. Long. I did petition to NOT be woken up for vital signs at 4am, and not to have labwork at 5am EVERY morning, and to get my IV out and preserve my precious veins since I’m not getting any infusions yet. And they actually agreed! Spending extra days in the hospital was annoying, but thankfully not too painful.
 
Today I should be meeting with plastic surgery to figure out when they’ll open me up, clean out these lumps, and find out what’s causing them. Depending on how that goes, follow up treatment could be super easy or REALLY hard. Best case scenario they can easily clean everything out with surgery and I don’t need any further treatment. Second best case scenario, it’s an easy infection that can be treated with oral antibiotics. More difficult scenario is a more difficult infection that requires a few months of IV antibiotics. And the worst case scenario is a complicated infection that could require a full year of IV antibiotics.
 
I’m obviously hoping for option 1 or 2, but I think 3 is most likely because that’s an infection I used to have in my lungs that could have escaped into my chest during transplant. But we really have no clue until they do surgery and biopsy everything. Hopefully now that the holiday weekend is finally over we can get the ball rolling and get things taken care of SOON!

Never a dull moment

Once again it has been far too long since my last post. And once again, this in no way indicates a boring and tranquil life. In fact, recent months have been an absolute whirlwind of stressful events!
 
Stressor #1: A few months ago Katherine’s mother was injured in a bad fall. Ever since, she’s been back and forth between the hospital and rehab while dealing with numerous medical issues. This alone would be stressful, but she also owns a cat, and Katherine was taking care of him. When it became clear that her mother would not be returning home any time soon, we finally decided to bring Winston to our home. This would have been fine, as we both love cats, except for the fact that we already have a cat who does not play well with others. Peaches’s large-and-in-charge attitude combined with Winston’s anxiety and spazziness was pretty much the disaster we expected. Cramming two fighting cats and two humans into a small one bedroom condo wasn’t fun for anyone involved.
 
Stressor #2 is actually good news, but still stressful. We moved! Things came together for us to buy a larger two bedroom condo in the same building, and we pretty quickly found a unit that we loved. There’s only one issue: it’s on the 6^th floor, which is great for the view, and not so great for Shabbos when I don’t use electronics – including elevators. A few years ago living on the 6^th floor would have been absolutely out of the question, but I soon realized that I actually CAN manage the stairs now. My lungs are fine, I’m just out of shape! So we took the plunge, which of course involved all the stress of packing and renovating and buying things and getting rid of other things and general chaos, plus freaking out the aforementioned angry cats by bringing them to a new environment. But we did it, and we love our new place! The extra bedroom not only has space for my office area and a guest bed, but also my easel and a drafting table, so I finally have studio space for the first time in AGES! Now I just need to actually use it!
 
Stressor #3 inserted itself right as we were in the middle of moving. Several months ago I suddenly developed lumps at both ends of my transplant incision. Turns out I have sutures there, which can sometimes become irritated. My doctor said they were fine as long as they didn’t become infected. Occasionally they would become swollen and painful for up to a week, but I mostly learned to live with them – until October, right in the midst of moving, when one of them not only became swollen and painful, but also turned red. My transplant surgeon decided that I needed surgery to clear out the infected area, however by the time I saw him the swelling and redness had faded so he couldn’t determine exactly what needed to be removed. He told me to come back the next time it flared, which actually worked out well as we could finish moving in peace instead of juggling moving around surgery recovery.
 
So that’s the last few months of chaos. Now let’s talk about the last two weeks!
 
Last week one lump became red and irritated again, so we rushed to see my surgeon and scheduled surgery for December 30^th. But this time instead of briefly flaring and then fading, the lump continued getting worse, until I needed painkillers to manage it. It then developed a blister, and my doctor decided right before Shabbos that I had to go to the hospital. He agreed that I could at least have Shabbos dinner and spend the night at home before going to the ER Saturday morning. During the night the blister ended up popping and draining, which may have been for the best, as it started looking better afterwards and was far less painful. Instead of being put on IV antibiotics, I only ended up being hospitalized for 1 night before they sent me home on Sunday.
 
Great, right? Crisis kind of averted! Not quite. You see, right before being hospitalized I started losing my voice, which got progressively worse the following days. It peaked on Sunday and then started getting better, but I then developed sinus pain, a dry scratchy cough, and most worryingly a low grade fever. I thought maybe I had picked up a cold and would be able to weather it, but Tuesday night my fever spiked to 101.5, which guaranteed yet another trip to the ER. And since I didn’t have enough problems, I also noticed a 3^rd painful lump in one breast, not far from one of the lumps on my transplant incision. So I’ve been back in the hospital since Wednesday and they aren’t rushing to send me home. The goals now are to figure out what exactly is going on with these lumps and determine what specific infection is causing them so we can target it with the right IV antibiotics, and to decide whether I need more extensive and invasive surgery than we previously thought. We still haven’t come up with a treatment plan, which really sucks as we head into a holiday weekend where a lot of testing and procedures will be less readily available. I honestly have no clue what the short or long term plans are at this point, and I don’t think my doctors do either!
 
So that’s the latest in Eliana’s Medical Misadventures. Let’s all hope things only get calmer from here!

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!