Holiday season

I made it through the Jewish holidays! Having 4 major holidays in 4 weeks is intense, but it’s definitely much more enjoyable now that I’m able to get out and about for some of it. I went out for most of the meals, and even made it to shul a few times! My doctor didn’t think it was a good idea for me to be inside a crowded shul full of unmasked people, but I tried sitting outside on a porch and looking through a door that opened into the women’s section. That actually worked pretty well on the first day of Rosh Hashana, but I was foiled on the 2^nd day by jackhammering across the street which made it impossible to hear anything. It rained on Yom Kippur so I didn’t end up going to shul, but on Simchas Torah I was able to watch the dancing and hear the Torah reading from my porch seat. I even ran inside for a minute to dance VERY briefly before running back out to my anti-germ zone.
 
Sukkos was a little more difficult. On Sukkos we’re supposed to eat all our meals in a sukka, which is a temporary outdoor hut. One of the rules of the sukka is that the roof has to be made of plant matter, which unfortunately is typically prone to growing mold. My doctor was very concerned about the possibility of picking up a mold or fungal infection, so I was not able to sit inside the sukka. I compromised by going to the Adlers for a couple meals, because their sukka is open on one side against a glass wall looking into their dining room. So I sat in the dining room and could at least SEE the sukka through the wall and kind of feel like I was part of the festivities.
 
I guess sitting outside and looking in was kind of a theme across all of my holidays. Whether sitting outside shul or outside the sukka, unfortunately I’m often unable to fully participate in various activities and instead have to come up with compromises to protect my health. Being forced to separate myself definitely isn’t fun, but it’s still a vast improvement over the height of Covid when I couldn’t do ANYTHING. Unfortunately I’ll always have to live with some degree of separation regardless of Covid. Mold in the sukka will always be an issue, as will crowds and all their potential germs, since even a cold or flu could be deadly for me. It’s a difficult balancing act figuring out an acceptable risk level that protects my health while also allowing me to be part of my community and enjoy various activities and outings. Sometimes I get sick of all the restrictions and push the boundaries a little, but thankfully so far I’ve made it through those moments without catching anything. Figuring out how to navigate between being safe and living life is definitely still a work in progress.
 
As the weather cools off and there are fewer outdoor activities, and as cold and flu season ramps up, it will definitely be more difficult for me to safely get out and about. Winter definitely is not my best season (except for when it snows enough for me to snow sculpt of course!). Hopefully I’ll be able to find some relatively safe activities and social opportunities to keep me busy until spring!

No news is (mostly) good news!

It’s been quite a while since I shared a health update. This time around, no news is mostly good news!
 
Things have actually been relatively calm in recent months. I had a bronch and a sweat test in July, but aside from those and bloodwork every few weeks I’ve actually managed to avoid any other procedures. I haven’t even had any doctor’s appointments! Katherine and I have been taking advantage of the calm to go on outings and little day trips. We went out to a free concert and fireworks for the 4^th of July, visited the beautiful Chinese Lantern Festival, drove to Edison for a cat expo, road a scenic railroad in Delaware, went to Wildwood to check out a tattoo convention, and spent an afternoon at the art museum. We’ve had a pretty busy summer, and still have more outings planned! Definitely a nice change from medical drama!!
 
There is one big thing going on though: Trikafta. I started taking it over a month ago, and it hasn’t gone entirely smoothly. When I first tried it a couple years ago I ended up stopping because it seemed to be making me fatigued and depressed. This time we tried increasing the dose slowly to give me time to adjust, and while I did ok with the first dosage, as soon as I moved up to the next level I started struggling with fatigue and depression again. Right now I’m back to the lowest dose and planning to stay here for a while to really give my body time to adjust before trying to go up again. I don’t want to waste the rest of the good weather and spend the Jewish holiday season being exhausted and depressed, so I won’t be changing the dose until the end of October at the earliest. I do think I’m still having some side effects, such as insomnia and fatigue, which is difficult but definitely much more manageable than what I experienced at the higher dose. It’s really frustrating that there’s this amazing medicine that could nearly “cure” my remaining CF symptoms, but I may not be able to benefit from it due to side effects. I have heard though that for some people the side effects fade after a month or 2, so I’m hoping that eventually I’ll be able to sloooowly work my way up to a full dose. Here’s hoping!
 
This month will be a little more medical, as I have appointments coming up with my transplant team and my endocrinologist. I also have a dexa scan scheduled to check my bone density, since my bones have been compromised by years of steroids. But aside from that I plan to keep getting out and about and enjoying myself as much as I can!

Free again!

Hooray for (relative) freedom!

A few weeks ago I got Evusheld, an antibody injection for people who either can’t take or are unlikely to respond to the Covid vaccine. We already know that I didn’t produce antibodies in response to my vaccines and boosters, so Evusheld is an important tool to help keep me safe from Covid. My doctor has seen really good results so far, both in that transplant patients who get Evusheld are less likely to catch Covid, and that those who do catch it have much less severe illness. Between finally getting Evusheld, and the local Covid numbers going down, he actually felt comfortable loosening some of my Covid restrictions! I can once again be unmasked indoors with a few people at a time as long as they are vaccinated and will warn me if they have any symptoms of illness. He does still want me to avoid indoor crowds entirely and to wear a mask if I’m in a crowded space outdoors, but that’s pretty manageable. Regardless of Covid I need to avoid people with any signs of illness, since I’m highly susceptible to infections and even a simple cold could be devastating, so that and avoiding crowds are just standard post-transplant precautions. It’s so nice to mostly be back to my regular levels of paranoia now that I finally have some antibodies in my system!

On a less exciting note, my lungs continue to be a petri dish. After a month of nebulized antibiotics the pseudomonas was thankfully gone, but it was replaced with staph. I’m still not having major symptoms so we aren’t jumping to treat it yet, but it’s frustrating to keep having one infection after another. We know it’s all coming from my sinuses, but my ENT didn’t think another surgery would be particularly helpful. So instead we’re going to try Trikafta! Trikafta is the ground-breaking CF treatment that came out shortly after my transplant. I actually tried it briefly a couple years ago, but stopped because I was possibly having side effects and it wasn’t clear whether it would even help my sinuses. But now there is more research showing that it DOES help the sinuses, so we’re going to try again and see if I can tolerate it, possibly on a partial dose.

Before starting though, I’m getting a sweat test. One of the weird things that happens when you have CF is that your sweat is extra salty, and a sweat test has been standard to diagnose CF for decades. So why do I need one now? Trikafta addresses CF on a cellular level, and even corrects the salt levels in the sweat. Since I might not be on a full dose, we need a way to check if the partial dose is working. If I get a baseline sweat test now, we can then compare my salt levels on Trikafta to see how much it changes. This won’t be necessary if I end up tolerating the full dose, but could be helpful if I need to take a modified dose. The funny thing is that I have to go to the children’s hospital to get it done, since it’s not typical for adults to get this kind of diagnostic testing. That should be interesting!

One other issue is that I’ve been having some on and off chest congestion over the last couple months and have been having trouble coughing it out. My doctor heard some stuff rattling around in my lungs during my last appointment, and thinks it might be time for another bronchoscopy to open up my airways. So that’s Monday’s adventure. Thankfully it’s been nearly 10 months since my last bronch, which is a record for me! Hopefully it’ll go smoothly and I’ll feel better afterwards.

That’s the latest medical shenanigans around here. Thankfully nothing too dramatic this time!

Goodbye freedom

Well, freedom was fun while it lasted.
 
As local Covid cases continue to increase, so do the precautions I need to take. I already try to avoid crowds, but now it’s even more important since it seems like everyone and their brother has Covid. I also need to be careful about who I’m around, and must be masked when sharing indoor space with anyone, which very much limits my ability to join people for Shabbos and holiday meals. I knew that my low Covid cases window of opportunity wouldn’t last forever, but I did hope it would last a little longer.
 
On the plus side, I’m finally scheduled to get Evusheld next week! Evusheld is a Covid antibody treatment for high-risk individuals who are unlikely to respond adequately to the Covid vaccine. They’ve wanted me to get it for months, but supplies are limited, so Penn has been distributing it to qualifying patients via lottery system. I’m looking forward to finally having more protection and maybe being able to ease up on some restrictions!
 
Another plus is that at least this Covid surge is during the spring/summer so outdoor activities are an option. The winter surge was terrible because there was nothing to do but stay cooped up in the house all day long. This still sucks, but isn’t quite as miserable. Hopefully things will peak and ease off soon so I can return to freedom!

Lungiversary party!

I had a terrific time at my 3rd lungiversary party! I had to keep the guest list small to reduce the risk of infection, but it was so wonderful to get together with family and friends to mark this special milestone! I am so grateful to Hashem for blessing me with a successful transplant and the gift of these bonus years!

3rd lungiversary!

Thursday was my 3^rd lungiversary!
 
I’m still figuring out my lungiversary traditions, but I have a couple. One is that I start the day by lighting a memorial candle for my donor. I am keenly aware of the fact that my life was saved when someone else lost theirs, and that my day of celebration is another family’s day of loss.  I hope that my donor is at peace and that their family can take some comfort from knowing that they saved lives.
 
Another tradition is that I baked and decorated a bunch of lung-shaped cookies for my doctors and nurses. I had an appointment on Wednesday, so while I was in clinic I delivered cookies to my transplant team, my CF team, and my surgeon. I then headed over to the hospital with more cookies for the nurses on the unit I spent a LOT of time on before transplant. There happened to be a bunch of nurses I know working that shift, and they were SO happy to see how well I’m doing. The hospital staff typically only see people when they aren’t doing well, so they really appreciated seeing me looking great 3 years later!
 
On Thursday we celebrated by actually getting out and living life! First we had a wonderful visit with my grandparents, who I haven’t seen since before transplant thanks to Covid. And then we went to Edison for a MASSIVE gem, mineral, and fossil show. We spent hours walking around looking at all the amazing specimens, and still didn’t even cover half of the exhibits. Afterwards we took advantage of the local kosher food options to hit up a pizza place and Dunkin Donuts before coming home. It was the most activity I’ve had in one day and the farthest I’ve traveled from home in a LONG time! It was great to get out and spend the day making memories, which seemed like a very appropriate way to spend my lungiversary.
 
Tomorrow I’m wrapping up the lungiversay celebrations with a small party. To keep it safe I unfortunately can’t invite everyone I would like, but my doctor said a small, outdoor party would be safe enough. Fortunately my building has some picnic tables under a gazebo out back, so we can keep the party going even if the weather doesn’t cooperate. I’m looking forward to getting together with a small group of family and friends to continue celebrating this exciting milestone!

The medically low-key life

Things have been about as medically quiet as they get for me. That doesn’t mean no complications, but it does mean nothing particularly dire. One frustrating thing is that I’ve had continuous lung infections since finishing IV antibiotics. In March I cultured staph, but fortunately it was an easily treatable one that was resolved with oral antibiotics. Then in April I cultured my old nemesis pseudomonas. I haven’t had much in the way of symptoms however, so we haven’t jumped into any drastic treatments yet. I already do a nebulized antibiotic on a 1 month on, 1 month off schedule, and April was my off month, so as long as I remain mostly symptom free we’ll just see if it clears up by the end of May. I’m also having an appointment with my ENT to see if there’s anything else we can do with my miserable sinuses to keep the infections from dripping down into my lungs.
 
The main symptom I’ve had is fatigue, but it’s hard to tell how much of that is from the infection and how much is just my life. I’ve struggled with poor sleep for decades, but I definitely feel like it got worse after transplant, so that obviously contributes to fatigue. I think I’ve heard that insomnia and fatigue aren’t uncommon after transplant, so it could just be transplant life. And I’m sure battling a pseudomonas infection doesn’t help. All I know is that I’ve been VERY tired lately, which makes it really difficult to get anything done and kinda sucks the life out of me. Here’s hoping that improves along with the pseudomonas infection.
 
I also had my first post-transplant dermatology appointment. You’re supposed to have one every year after transplant, but due to Covid we pushed off most non-essential appointments. Penn now has a special transplant dermatology program though, and they’re good about making sure we all get in to see them. I knew that transplant recipients are at higher risk for all kinds of cancers, but I didn’t realize that the risk of skin cancers in particular is ridiculously high. Thankfully my skin looked good this time, but the doctor said that 3-5 years after transplant is when they typically start seeing skin cancers. And guess whose 3 year lungiversary is this week?? So that’s another worry to add to my long list of fears. I’ll definitely be more cautious about covering up and using sunscreen!
 
On the non-medical front, we unfortunately have some sad news. After having a bad fall last summer and then struggling for months with one medical issue after the next, Katherine’s mother passed away last month. It was a strange mix of unexpected and expected: unexpected, because before the fall she was doing fine, and expected, because she declined for months before finally being sent home on hospice. Things were pretty awful at the end, and it was a mercy when she finally passed. It’s been difficult, but Katherine is holding up ok, and we all hope her mother is finally at peace.
 
On a brighter note, I’ve really been appreciating being able to get out and socialize a bit instead of being on full Covid lockdown. I went out for half of the holiday meals on Pesach, which was AMAZING and made the holiday SO much more enjoyable. I’ve also been going out for some Shabbos meals. And in an effort to get some exercise, I started taking lessons with my friend Abrielle Fuerst, who teaches martial arts professionally. So that’s guaranteed once a week that I get out of the house and see a friend, and I get to learn how to be a ninja on top of it! I am playing with NUNCHUCKS, people! Watch out!

Happy Purim!

Until last week I had no plans for Purim. I was so exhausted and miserable that I just didn’t have it in me to come up with a theme and a costume. Once my doctor told me that I could rejoin the world, however, I was revitalized, and I started putting together my theme that very night! Flowers seemed like a fun and appropriate way to represent the feeling that I’m beginning to blossom and come back to life. With a little online searching I stumbled upon the fact that you can bake a cake in a terracotta flower pot, and thus my mishloach manot were born!
 
Additionally, I decided to join forces with the Becks and make an Our Doctors Said No Communal Seuda seuda. And then Baby Berdugo arrived so we got to invite the Berdugos to join us! I have a hunch that when my doctor said I could start carefully socializing again, he didn’t intend for me to host a literal party, but I feel pretty safe with both the Becks and the Berdugos and couldn’t pass up the opportunity. Aside from the fact that we haven’t had anyone over for a meal in over 2 years, Katherine and I have actually never hosted more than a couple guests at a time in either apartment! Everyone brought wonderful food and even better company, and we had a blast!
 
After 2 years of isolation, running around delivering mishloach manot and then having a lovely seuda with a bunch of good friends was absolutely AMAZING! May this holiday be only the beginning of bigger and better things and many more good times shared with family and friends!!

Goodbye medical accessories!

After 2 and a half months with a PICC line, and 3 weeks with stitches, they are both finally GONE! Getting the stitches removed wasn’t exactly fun seeing as they had 3 weeks to heal into my body, but at least it was quick. Even though I’m a little bloody I still feel much more comfortable without them. Once my body finishes healing that will hopefully be the END of this round of medical shenanigans. Finally being free of medical accessories was a great way to go into the holiday tonight! Happy Purim!

Freedom!

Our first time eating in a restaurant in over 2 years! We took an impromptu trip to Lakewood and of course we had to go to Esty's Besty's Vegetarian Eatery! We used to go all the time when they were in Cherry Hill, and Esther was so surprised and happy to see us. It was SO wonderful to get out into the world and see friends again. And the delicious food was an extra bonus!

The light at the end of the tunnel

I haven’t written because it kinda felt like every day was the same. The pain is improving, but I still have stitches and I’m still uncomfortable and I’ve still been on IV antibiotics. The one thing that changed is last week I got my drain out. It hurt but at least it was quick, and that’s one less annoying thing sticking out of my body.
 
But then! Today I saw my transplant doctor. He’s pleased with my recovery and said that the samples they took during surgery actually didn’t grow any pseudomonas, which is a good sign that hopefully the Amikacin will be able to fully eradicate the infection. And then he gave me the best news I’ve heard in a LONG time. He said that the Covid rate in my area is currently low enough that I can finally loosen up my lockdown and go back to regular post-transplant precautions! For the last 2 years my socializing has been very limited and almost exclusively outdoors. Sharing meals has been extremely rare as any unmasked socializing had to be outside at a social distance. But now! For the first time in 2 years, as long as everyone (excluding young children) is vaccinated, I can finally be unmasked indoors and share a meal together! With the caveats that I still can’t be around crowds, or anyone showing any symptoms of anything, or people who have recently been in a crowded place with a high risk of exposure to illness. And of course I’ll still wear a mask in public. But those are basically the restrictions I followed post-transplant anyway, since for me ANY infection has the potential to cause serious problems. Being able to finally step inside someone’s house unmasked is a HUGE improvement!
 
It’s kind of surreal, and I’m actually kind of anxious about it! I’ve worked so hard to stay safe and somehow managed not to catch Covid this whole time, so it’s very strange and a little scary to think about loosening up on Covid protections. At the same time, I’ve been pretty depressed lately, and I think a lot of it has to do with Covid. It feels like Covid sucked all the fun parts out of life and all I had left was endless medical complications. I wasn’t happy even before surgery, and having a painful procedure and lengthy recovery thrown on top was just too much. Finding out that I can start seeing friends again finally added a little light back into my life, and hopefully will help pull me out of the depressive funk I’ve been slogging through.
 
Today I finished my last dose of Amikacin. I’m keeping the PICC line until Monday to get my annual infusion of Reclast to treat osteopenia, and then hopefully after nearly 3 months I’ll finally get that out. Next Wednesday I’ll get my stiches out and will hopefully be more comfortable. And then the following day is Purim! Hopefully this will be the end of medical drama and the beginning of more fun holidays and celebrations with family and friends!!

Home sweet home!

I’m home! I love my bed and my kitchen! And my partner is pretty great too!! 😄
 
It’s wonderful to be home, but I’m definitely feeling pretty uncomfortable. The dressings came off yesterday, and I was surprised to see that they opened up about half of each transplant incision. So that’s a bunch of stitches on each side and they don’t feel too great, plus another hole where I have the drain dangling out of me. Not too much has been draining out today though so I’m hopeful that I’ll be able to get that removed next week. I kinda feel how I did a couple months after transplant in terms of discomfort. Fortunately this is nowhere near as bad as transplant though since they only had to cut the skin and not the muscles. And the little drain is nothing compared to the 6 huge chest tubes I had after transplant. But it still isn’t fun and I’ll be very glad when things heal up.
 
I’m pretty sure this infection has been bothering me for quite a while without me realizing it. Long after everything should have healed up post-transplant I was still having random pain in my incisions even before the lumps popped up. At the time we thought it was nerve pain, but now I think it might have been the pseudomonas infection randomly flaring up. Hopefully once this is all done I will FINALLY be pain-free for the first time since transplant.
 
There is one unsung hero in all this who I have neglected to mention until now, and that’s Rivka Sara Beck. Ever since I was hospitalized in December she has made sure that I have food every Shabbos, sometimes picking up food from other people, and usually making it herself. I am so fortunate to have such wonderful friends and am endlessly grateful for everyone’s support!
 
I’m definitely looking forward to having a very low-key Shabbos and continuing to recover in the comfort of my own home!

It's done!

They got me in! It took until around 2pm so it was still a long hangry day, but at least it’s done!
 
Thankfully surgery went well and they’re pretty confident that they were able to clean out all the infected tissue. They ended up doing both sides, which I’m actually happy about because I don’t want to have to come back and do this again later. The right side was able to be stitched up, but the left side has a drain in it to continue clearing stuff out. It’s basically a tube sticking out of me with a ball at the end that grossness (mostly blood) drips into all day long. Apparently both the drain and the stitches will probably need to stay in for a few weeks. I haven’t actually seen my incisions yet because they haven’t taken the dressing off, but I had a plastic surgeon working on me so I’m sure they’ll be minimal. I’m also pretty sure they cut along my existing transplant scars so it’s not like they’ll be anything new.
 
We’ve also started me on IV amikacin to finish clearing out any remnants of infection. That will be a 2 week course, but the good news is it’s only once a day! What a breeze! I actually don’t think I’ve ever had such a light infusion schedule and I’m super grateful for it, especially after how torturous my last infusion schedule was. Let’s all just pray that it doesn’t do any significant damage my hearing in the process.
 
And the best news is that maybe, HOPEFULLY, I just might be able to go home tomorrow! Everything is looking on track for discharge, but I know from past experience not to believe it until they’re actually wheeling me out the door. Here’s hoping!
 
It has been a LONG road dealing with these abscesses, but I’m finally starting to see the light at the end of the tunnel. Hopefully these will be the last steps to getting me back on track!

Fakeout

The good news is they actually managed to direct admit me and I didn’t have to go to the ER. The bad news is they didn’t do surgery today. Instead I wasn’t allowed to eat or drink after midnight, waited hangrily until 2:45pm, and then found out that they wouldn’t be able to fit me into the schedule after all. So that was fun. And I get to do it all over again tomorrow!
 
My transplant doctor is actually working in the hospital this week, which is convenient, and he was not impressed. Apparently they assured him that if he admitted me yesterday they would get me onto the surgery schedule today. There are no guarantees of course, but he thinks he made enough people feel bad enough about it today to get me on the schedule tomorrow. In his words he gave off “strong disappointed dad vibes,” so hopefully that’ll be enough!
 
I will say though that the new hospital definitely is fancy. The rooms are larger and have a much better layout than the ones in the old building. The TV is as big as I am, and has a screen with all the info about my providers and treatment plan that used to go on a whiteboard. It updates automatically in real time, so no more issues with people forgetting to change the info. Also, every time someone enters the room their name and picture pop up at the bottom of the screen, which is great for someone like me who is just terrible with names. The blinds are motorized and can be controlled from your bed, and the door and windows looking into the hallway have this cool glass that you can turn from clear to opaque with the touch of a button like magic. It’s also QUIET! I barely hear any noise from the hallway and haven’t heard a peep from my neighbors. So even though it sucks being stuck here, at least I’m hospitaling in style!
 
In a few more minutes I’ll be starting starvation round 2. Here’s hoping it goes much faster than it did today!

A plan at last!

We finally have a plan! It isn’t a particularly fun plan, but it is a plan nonetheless.

I had a follow up with my transplant doctor on Tuesday. We confirmed that Lump and Lump Jr. are now smaller after Lump popped, drained, and never grew back. We also confirmed that Other Lump has gotten bigger, which was obvious as it has been red and swollen for at least a week. And so, we finally came up with a treatment plan: surgery to drain Other Lump, followed by a 2 week course of IV amikacin. Unfortunately that requires being admitted for a few days while they stabilize the dosage before sending me home to finish up.

But what about the bacteriophages?? Well, we’re still waiting for Yale to turn them into a clinical grade product for me. If they’re ready before I finish the amikacin, I’ll probably start them immediately. If they’re ready afterwards, and the amikacin takes care of the infection, then we’ll save them for the next infection (because we all know I ALWAYS bring the drama). At this point I’m honestly kind of hoping they aren’t ready, because since they’re a weird experimental treatment they have to be given in the hospital, and I’m really not in the mood for a 2 week stay at Hotel HUP. So I’m just gonna hope that amikacin does the trick without damaging my hearing.

Of course, just as we came up with a plan, Other Lump decided it wasn’t getting enough attention. Barely a day after my appointment it burst dramatically and released an absolutely appalling amount of pus. It was basically my own private episode of Dr. Pimple Popper, and since I refuse to watch that show I didn’t exactly enjoy the experience. It then proceeded to continue draining for the next 16 hours or so, which I also didn’t enjoy. On the plus side, Other Lump looks and feels much better now! But my doctor still wants me to get it cleaned out, so I’m scheduled for surgery on Monday.

The plan for today is to admit me and get me started on IV amikacin. We’re hoping to pull off a direct admission this time instead of putting me through yet another ER visit. I’ll also get to experience the fancy new hospital building since this time I’ll be assigned to a surgical team and all the ORs are in the new building. If I have to be stuck at HUP, at least I get to do it in style! So I’ll be spending the rest of my weekend sitting around waiting for someone to call and either tell me that a bed is ready, or that I need to go to the ER and get admitted from there, and then settling into the hospital. Do I know how to party or what?

As not-fun as all this is, I am DEFINITELY looking forward to eventually being DONE with this round of drama. This stupid lump saga has dragged on for way too long, and I am extremely ready to move on with my life!

The hits keep coming

Can I return 2022? Mine is already broken.
 
Last week we were waiting for the results from susceptibility testing, desperately hoping to find an antibiotic with a less grueling infusion schedule. Instead, we found out that the previous 2 and a half weeks of sheer exhaustion were a complete waste, because MY INFECTION IS RESISTANT TO THE ANTIBIOTIC WE WERE USING. Not gonna lie, that was pretty crushing news, both because Katherine and I went through so much for no benefit whatsoever, but also because the only antibiotics left have bad side effects. Specifically, I have 2 antibiotics to choose from: tobramycin, which has already given me permanent (thankfully mild) tinnitus, and amikacin, which has already given me (also thankfully mild) hearing loss. The last time I tried tobramycin the tinnitus started getting louder in less than a week, so I decided to gamble on amikacin being slower to cause damage. Plus, hearing aids are a thing if necessary, whereas there is nothing you can do for tinnitus. What a garbage choice to have to make!
 
I have not yet started the new antibiotic schedule, because first they want to drain the abscesses so the antibiotics can penetrate more quickly. But they DON’T want to do full surgery, because my anti-rejection meds impede healing, so surgery could actually end up spreading the currently-contained infection without having a good arsenal of antibiotics available to treat it. Right now we’re waiting for the abscesses to get a bit bigger so they can go in and drain them with a needle, and THEN we’ll get me back on IV antibiotics.
 
We’re also exploring an experimental treatment called bacteriophage therapy. Bacteriophages are viruses that don’t cause infection in humans, but do infect and destroy bacteria. The catch is that each bacteriophage only targets a specific bacteria, so you need to cultivate exactly the right phage to treat an infection. There has been a fair bit of research on using bacteriophages to treat multi-resistant pseudomonas infections specifically, which is good news for me. So my pseudomonas sample was shipped off to Yale, and they were very impressed with how extremely nasty it is. Apparently it takes 4-6 weeks to get phage therapy approved and set up, so it’s a waiting game to see if I still need it by then or if the drainage and antibiotics take care of everything. At least I can say that I’ve gone to Yale and they were very impressed with me!
 
And because when it rains, it pours, we have even more on our plate. Unfortunately, after struggling for months, Katherine’s mother was sent home on hospice over the weekend. Katherine has been driving over an hour every day to be there, and will likely be visiting multiple times a week until she passes. To complicate things further, there was a potential Covid exposure in the home, so my doctor has recommended that I not go and that Katherine and I maintain social distance and wear masks to keep me safe. Hopefully we’ll be able to ease up on some of those restrictions soon, but for now the situation has been very difficult.
 
I really don’t have any good news to share right now unfortunately. I hope everyone else’s new year is going better than mine!

Exhaustion

I’m utterly exhausted.

As expected, this infusion schedule is brutal. The first few days were particularly fun because I was teaching Katherine how to do them, which meant both of us weren’t sleeping more than 3 consecutive hours at a time. Once she got the hang of it we sort of settled into shifts, but that still involves a very disrupted sleep schedule. We’ve both been kinda zombie-ing around for the last few weeks and revolving our lives around my infusions.

To add to the excitement, my PICC line was defective. I requested a double lumen PICC line, which means it has two hubs that can be used to simultaneously infuse different medications. I just knew if I had only one lumen they’d find another infection that needed a different antibiotic and would need to replace the line. Well joke’s on me, because from the day they put it in one lumen leaked and couldn’t be used, so just a few days after being discharged I got to go back to HUP to have my PICC line replaced. Fortunately PICC replacements are pretty easy, but it was still super annoying.

I also had 2 follow up appointments last week, one with Infectious Disease, and one with the transplant team. Of course all these appointments and procedures interrupted hours that I could have been sleeping, or messed up my infusion schedule, or both. And to top it all off, the CT scan I got on Friday showed that not only have my lumps not improved, they’re actually bigger. Fortunately my doctor didn’t seem concerned about this and reiterated that abscesses take a long time to respond to treatment. Which isn’t what I wanted to hear, but at least it wasn’t worse news.

The million dollar question is, how did I end up with pseudomonas in my chest wall?? Apparently CF lungs are usually really degraded and hard to remove, and during the transplant process infections can escape from the lungs into the chest cavity. The catch is that we would have expected any infection to cause problems well before now since I’m immunosuppressed. But my Infectious Disease doctor said she’s seen infections become active years after transplant, and my transplant doctor says that she’s the smartest person he knows, so I’ll take her word for it. It just confirms for me that pseudomonas is absolutely my lifelong nemesis. I guess every superhero needs one.

The hope now is that susceptibility testing will find another antibiotic with an easier schedule that can be used instead. Apparently the testing got held up by a paperwork snafu, but my doctor harassed them into submission and is expecting results any day now. I’m honestly not hopeful, as decades of IV antibiotics have basically supercharged my pseudomonas into a multi-resistant monster, but for some reason my doctor thinks we may end up with another option. It’s funny, every medical professional I talk to agrees that my infusion schedule is absurd and unsustainable, yet thus far no one has been able to do anything about it. Here’s hoping that changes soon!