Battered but not broken

It is DEFINITELY good to be home. I don’t think I slept more than 2 or 3 consecutive hours the whole time I was in the hospital. It is so nice not to constantly wake up to beeping machines or a parade of medical professionals coming in to poke and prod and talk to me. Of course, I don’t think I’ve gotten more than 5 consecutive hours of sleep since I’ve been home thanks to my antibiotic schedule, but somehow it feels better than what I got in the hospital.
 
I still have the JP drain, which might stay in until my follow up appointment in 2 weeks. It’s not super comfortable, but it’s definitely not as bad as the chest tubes. Katherine and I recently took stock of all my new battle wounds. I have one nearly 5” long incision, 3 smaller incisions where they put in cameras during surgery, and 2 small incisions where the chest tubes were. We also counted my staples: 24 in the big incision, 7 in small incision #1, 5 in small incision #2, and 3 in small incision #3. That’s a total of 39 staples, and they are NOT comfortable. Some of them are on my back, so there’s really no way to avoid laying on them unless I’m standing or sitting upright, so they’re constantly being irritated. Unfortunately they probably won’t come out before my follow up appointment.
 
I’m still very sore, and sometimes a whole lot more than just sore. I have some pain medications that I take regularly every 8 hours, and also some as-needed oxycodone, but right now I need to take that pretty regularly too or the pain gets out of control. Stupidly, I had to fight a bit to get them to send me home with a halfway decent amount of oxycodone. In the hospital I was taking 10-15mg every 4 hours, and even with that sometimes I needed Dilaudid for breakthrough pain. I asked to have my home meds be in 5mg tabs so I could modify the dose as needed and gradually bring it down, but somehow they decided that 20 tabs would be enough. The doctor said I shouldn’t still need that much this far out from surgery and that they don’t typically send people home with higher doses. I pointed out that they knew I was working towards discharge, so why hadn’t they started bringing the dose down days earlier? He did agree that was a mistake on their part. In the end they gave me 45 tabs, and I’ve been working on taking lower doses less frequently. Which resulted in some painful hours Sunday morning when I tried to be tough and only take 5mg after not taking anything for over 8 hours. I told Katherine I felt oxy-shamed by the doctor, and thankfully she helped me see sense and take what I need to be semi-functional. The whole thing is dumb and confusing. In the hospital they really pushed pain management and emphasized how important it is for me to be able to take deep breaths and cough to prevent pneumonia and other complications, but then suddenly when I’m going home all that goes out the window and I “shouldn’t need that much.” Hopefully what I have will be enough, but I did recently connect with a Palliative Care doctor, and before surgery she reassured me that she will help with pain management if needed.
 
Katherine and I are also back on the IV antibiotic train, which means running 3 hour infusions 3 times a day. That will definitely last at least 2 more weeks until my follow up appointments, and possibly significantly longer than that. We’re both basically shuffling around like zombies just trying to get through each day. The tricky part is that even though the mesh they put in is much lower risk for harboring infection than the suture was, there is still some risk, so ideally they would like to continue the antibiotics until the mesh has fully dissolved. Unfortunately the mesh doesn’t show up on imaging, so I guess we’re just kinda deciding when to stop based on vibes or something? Which means they’re more likely to err on the side of caution and go for a longer course than a shorter one. We’ll see what my Infectious Disease doctor has to say at my follow up appointment.
 
On a more fun note, I did finally manage to make a couple Pole People a few days before being discharged. I was on a different unit this time, so I had a new audience who really loved them. These Pole People even got to have an exciting adventure! My antibiotic was running when it was time for my bronch, so the IV pole came with me down to the OR, Pole People and all! I also have a BUNCH of great new stuffed animals thanks to Katherine! The cat and the otter are new additions to the Bronchoscopy Collection, since I had 2 bronchs while I was inpatient, and the big fluffy Squishmallow is for the surgery! Someday we might end up needing a room just for all my medical plushies!
 
So that’s where things stand so far on the current medical journey. It’s still too early to see a light at the end of the tunnel, but I think surgery might have been the peak of this mountain, and hopefully now we’re finally on our way down. I’m battered and bruised, and Katherine and I are both utterly exhausted, but we’re slowly making our way to the finish line. We’ll get there eventually!

Progress!

A lot has happened over the last 2 days!
 
One thing I didn’t mention is that along with pseudomonas, they unexpectedly found a fungus in one of the surgical samples from my lungs. Due to this the transplant team ordered a CT scan to check for any signs of fungal infection. It wasn’t an urgent order, but for some reason they put me on the schedule for 11pm that night. I was surprised, but not super bothered, until I found myself struggling to stay awake at midnight with no sign of being taken down for a scan. I gave up and went to sleep… only to be woken at 1:30am and brought down to CT. Then when I got there, 4 people were ahead of me, so I didn’t end up getting back to my room until 2:30am. Yay hospital schedule!
 
I followed up that sleepless night with a painkiller snafu in the morning, and ended up really suffering for a few hours before finally getting what I needed. It then took several hours to get the pain fully back under control, and I was incredibly drained by the whole experience. Overall I wasn’t living my best life on Wednesday.
 
The labwork on the fungus had the transplant team a bit perplexed. They were able to see that it was a mold growth, but couldn’t identify exactly which species. The CT scan was also unclear, as there were some findings (ground glass opacities and a 6mm nodule for my medically minded friends) that could indicate a fungal infection, but could also be caused by multiple far less serious things. They started me on an anti-fungal right away just in case, but they also need more information. The bronchoscopy that was done during surgery only focused on and took samples from my left lung, since that was the trouble spot at the time, so now I need another bronchoscopy to see what’s going on in the right lung. Never a dull moment around here!
 
In more positive news, they finally removed the second large drain tube today! That was a BIG relief and I’m definitely more comfortable without it, as well as much more mobile now that I don’t need to lug a drainage collection box around everywhere I go. I’ve also gotten stronger and steadier on my feet in general over the last couple days, and now that I don’t need a place to hang the drain box, I was finally able to ditch the walker! I’m still very deconditioned and my heart rate jumps with the slightest exertion, but being more mobile and independent is a big relief. The one drain left is a much smaller tube and bulb called a JP drain, and my surgeon thinks we might be able to pull that one soon too and I’ll be fully drain free. If necessary I can go home with that drain still in me though.
 
Once the last big tube was removed, I was very happy to finally ditch my hospital gown and put on some comfy pajamas. For the most part I absolutely refuse to wear hospital gowns outside of procedures, so if you see me in one for more than a few hours you know it’s not a good situation. In this case the tubes were too difficult to manage in regular clothing, so I was stuck wearing hospital gowns for over a week. It was so nice to put on a pair of pajamas and start feeling more like a human being!

The plan for tomorrow is to get the bronch done. We don’t have a scheduled time because I’m an add on, so they’re pretty much squeezing me in whenever they can. I can’t have anything to eat or drink after midnight, but that shouldn’t be an issue because honestly my appetite has been almost non-existent since surgery anyway. The other big thing keeping me in the hospital right now is that we still haven’t gotten insurance approval for my current antifungal medicine. If they deny it, I’ll have to stay here until we can find one that they will approve to send me home on. And once they’re finally ready to discharge me, we need to make sure my home infusion company can get my antibiotic delivered the same day so there won’t be any gap in my treatment. Considering Shabbos starts shortly after 5pm, I am extremely doubtful that they’ll manage to pull everything together to get me discharged before then. But it DOES sound like hopefully, G-d willing, I should get to go home sometime this weekend. Here’s hoping!!

Me with my tubes and drain boxes

 

Each tube had its own box to drain into

Taking the boxes for a walk

The part she's holding was INSIDE me!

Pajamas!

Slowly recovering

Sorry for leaving everyone hanging! The last several days have been ROUGH. I keep planning to write an update, but I’m having trouble staying awake long enough to manage it! Typing clearly is also a bit more difficult than usual these days. But I’m gonna try!
 
Thank G-d overall the surgery went well! It took longer than expected, which of course was stressful for Katherine and my mom, but I think it went smoothly. The excellent news is, they found and removed a retained suture! That has very likely been home base for these pseudomonas infections for YEARS, so having it gone should be a game changer! I was SO HAPPY and relieved to hear that when I woke up!! Unfortunately, they did have to remove small pieces from 3 ribs and a small piece of lung as well due to infection. They’re still waiting for test results on the bone, but they had to be removed both because the infection had tunneled through them and because that was the only way to get to the abscess. The puss in the abscess and the sputum samples from my lungs did show pseudomonas, as expected.
 
One surprise is that they ended up putting some mesh in where they removed the bones. I was concerned about this, but they explained that this is dissolvable mesh, and that the structure of mesh is very different from sutures and doesn’t allow infections to get stuck the same way. My body had noticed the suture and formed a granuloma around it to wall it off, but what that actually ended up doing was walling the infection IN and preventing antibiotics from eradicating it. Apparently the body is less likely to notice mesh, and is also less able to wall it off due to the size and shape. So hopefully this mesh should provide some temporary protection in the gap where my ribs were, and then disappear before it can cause any problems.
 
Recovery has not exactly been a party. I came out of surgery with 1 large incision and 3 small incisions, all stapled shut, plus 2 large drain tubes and 1 JP drain (which I guess is 3 more incisions!). I’ve been getting IV antibiotics 9 hours a day, plus other random infusions such as Magnesium and Potassium when they don’t like the look of my daily bloodwork. I’m also not fully steady on my feet and am using a walker to get around. Figuring out pain control has been tricky. It’s really important to manage my pain, as I need to do deep breathing exercises and cough to clear out everything from the lavage (lung wash) I got during the bronchoscopy. For the first few days deep breaths and coughing were almost impossible due to the pain, but thankfully I can mostly manage it now. The problem is that most painkillers can suppress breathing, and they also make me extremely sleepy, and I’m not exactly doing deep breathing while I’m asleep. So we’re trying to find the balance between controlling my pain without knocking me out, and haven’t quite gotten there yet. My med cocktail also makes me have dreams bordering on hallucinations almost every time I close my eyes, and most of the time they’re reality based, so I keep getting confused about what conversations and experiences have actually happened versus which ones are all in my head. Not gonna lie, it’s been a difficult time!
 
But! I’m getting steadier on my feet and more able to walk day by day. One of the big tubes was removed yesterday, and we’re very hopeful that the other one can be removed tomorrow. My lungs are recovering well and I’m almost fully off supplemental oxygen. I’m getting there!
 
The goals for discharge are to get my pain under control, to get the last big drain tube removed, and to get me off supplemental oxygen (which I’ve almost accomplished). We also need to make sure my bowels finish waking up, since I really don’t need to end up back here with a bowel blockage like I did after transplant. My appetite being pretty much gone since surgery isn’t helping with that, but I’m trying to force myself to eat some solid food and get things moving. I’m still hopeful that I might manage to accomplish all that before the weekend and get home for Shabbos. Prayers and positive vibes are greatly appreciated!!

One week of freedom!

It’s only temporary, but for one glorious week I am FREE!
 
Last week, after 8 straight weeks of IV antibiotics, I finally reached my limit. I had noticed some pain and swelling under my armpit on my left side, which we assumed was a swollen lymph node due to the infection. At first the pain was mild, but then for a few days it became more significant and started interfering with my already limited and disrupted sleep. Between not sleeping decently for 8 weeks and then waking up in pain, I was DONE. I reached out to my transplant team and told them that I desperately needed a break before surgery, since I’m expected to do up to 6 more weeks of IV antibiotics afterwards. I’m usually a pretty diligent and compliant patient, but I let them know that a break was not negotiable, and either they told me how many days to take off, or I would start skipping doses so I could get some sleep. They convinced me to hang on for a few more days until we could get sputum culture results to make sure that the nasty, multi-resistant strain of pseudomonas in the abscess had not gotten into my lungs. By then the pain had subsided to a manageable level, so I was willing to wait just a little longer.
 
We got the results yesterday, and not only was there no multi-resistant nastiness, there was NO pseudomonas whatsoever! I know it will come back since my sinuses remain infected and will drip pseudomonas back into my lungs once I’m off antibiotics, but it was still a great result for now. And that means for the first time in 9 weeks I am FREE from the horrible infusion schedule! I still have my PICC line, but I don’t need to run any antibiotics through it for a full week. Which means I won’t be chained to an IV pole for 9 hours a day, and we can FINALLY get a full night’s sleep! Katherine and I are so excited!
 
I also had a regularly scheduled follow up appointment at transplant clinic yesterday, and my lung function was an amazing 101%! Even though this abscess situation has been pretty terrible, it’s nice to see that at least my lungs are still doing great! Overall we’re all just waiting for surgery now, as the abscess is the only pressing issue. They’re also going to do a bronchoscopy while I’m under just to make sure everything is ok in there after randomly coughing up a blood clot a few weeks ago. At this point a bronch is really the least of my worries, and since I’ll be unconscious anyway, what do I care?
 
On Tuesday I will resume IV antibiotics for a couple days to get me ready for surgery, which is scheduled for Thursday the 29^th. Though I’m very much not looking forward to a likely painful recovery process, I AM glad to finally get surgery over with. It has been a LONG ROAD. This all started with a wonky routine x-ray at the end of September, followed by an even more concerning CT scan mid-October, and then a month of thinking I had cancer and a failed biopsy before finally realizing it’s actually an abscess in November. Then I started IV antibiotics, which I have now been on for nine full weeks. I am TIRED, and I still have a long way to go, as I will need additional weeks of IV antibiotics after surgery. Both Katherine and I are EXHAUSTED!! But I’m starting to see the faintest glimmer of light at the end of this very long, dark tunnel, and am hopeful that sooner than later the current round of medical issues will finally be DONE. And I’m sure everything will be much easier to deal with once I get some sleep!

Random annoyances

It’s been quite a while since I posted a health update! That doesn’t mean that nothing has happened, it just means nothing MAJOR has happened. Instead I’ve had a series of random annoyances, and honestly, I just didn’t feel like writing about them. I actually didn’t even post about most of my summer outings and adventures on Facebook either. For the last several months I’ve been feeling very tired and heavy, and a lot of that has to do with Cam’s death. Losing Cam really hit me hard, and even though you wouldn’t necessarily know just by looking at or talking to me, I’ve been carrying that grief around like a heavy burden. It’s only been recently that I have occasional days when I don’t think about him and haven’t been randomly bursting into tears at least once a week. Throwing various random medical nonsense on top of that grief just felt like too much, and posting about it REALLY felt like too much. But I’m slowly adjusting, and finally feeling ready to delve into the last few months.
 
Also, I get a little anxious when I go too long between health updates, because I’m always waiting for the other shoe to drop. I’d rather catch up now before something major actually DOES happen, because it’s pretty much 100% guaranteed that something WILL happen eventually.
 
So let’s go back to June. The theme for June was: infusions! As has happened a few times since transplant, my iron levels got a bit low, so my transplant team prescribed a round of iron infusions. Unfortunately, due to bureaucratic idiocy, I couldn’t use the infusion suite at the Penn location in Cherry Hill. Apparently my doctors in Philly don’t have privileges there, and I needed a hematologist at that facility to place the order. It happened to be I DID need to see a hematologist anyway about getting off blood thinners, but they couldn’t get me in for a month, and I didn’t want to wait. So for 3 weeks in a row Katherine and I got to shlep into Philly once a week for an iron infusion. And then a couple weeks later we got to shlep back again for an infusion of IVIG. My monthly bloodwork had shown that once again my anti-rejection meds were being a little TOO effective and my antibodies were low. Since I’m not great at producing my own antibodies, I occasionally have to get them from someone else in the form of IVIG. Between the iron and the IVIG it felt like the HUP infusion suite was becoming my new home!
 
In June I also had a regularly scheduled appointment at transplant clinic, and my lung function was an amazing 101%!!! Despite this incredible number, I was having some unexplained shortness of breath, so I had a bronchoscopy to open up my airways again. I didn’t end up feeling better right away, but thankfully over the next several weeks the shortness of breath did ease off. I’m still not as strong as I could be, and I definitely need to get back on track with exercising and improving my endurance, but thankfully I’m breathing better now than I was a few months ago.
 
The annoyance for July and August was something that I actually had been dealing with for almost a year but suddenly got worse over the summer. Last October I suddenly started having random, brief dizzy spells. I couldn’t identify any triggers, and never knew when it would happen. I was already seeing an ENT for ear problems, and actually had a tube placed in one ear last summer to drain fluid which ended up being a pseudomonas infection, but dealing with my ears and dizziness got put on the backburner when the abscess drama erupted in December. My ENT did suggest an MRI in January, but I was VERY resistant to that, as I kinda panicked when I had an MRI in December. So we agreed to keep monitoring the situation and reassess in a few months… which takes us to July. In July, out of nowhere the dizzy spells became WAY more frequent and intense. Thankfully after a few bad weeks things eased off, but that was enough to convince me to take some anxiety meds and get an MRI. Unfortunately, I couldn’t get an MRI appointment for 2 months. But then! I had an ENT appointment at the end of August, during which she saw that the tube in my ear had not fallen out as expected. She tried to pull it out, but that REALLY hurt, so we decided to wait a few more months to see if it comes out on its own. And since then I haven’t had a single dizzy spell! When I finally got the MRI it didn’t show any issues with my ears, so the current theory is that maybe the ear tube was somehow causing the problem. So hopefully that’s one unexpected problem that was just as unexpectedly solved!
 
Also now I have some very cool pictures of my brain, which are prominently displayed on my fridge. Bonus!
 
And that brings us to August’s annoyance, which is actually still ongoing. One day in August I randomly woke up with significant neck and shoulder pain. I figured I must have slept funny and it would just go away… but it didn’t. Instead, the pain spread down my left arm, and I started having tingling off and on. After a couple weeks passed without improvement I scheduled an appointment with a specialist, but unfortunately nothing was available for 2 months. At my transplant clinic’s recommendation I went to Rothman Orthopaedic Urgent Care, who gave me prescriptions for muscle relaxers, physical therapy, and an MRI. Insurance denied the MRI, so we still don’t actually know what’s wrong, but based on my symptoms the assumption is something is wonky in my neck and triggering a nerve. Thankfully the pain has improved, but I still have tingling in my left arm, some of my fingertips are numb, and recently that arm has started getting weak. So now I’m just continuing PT until my doctor’s appointment at the end of the month, and hoping he has some solutions for me.
 
Getting old is great and all, but I could REALLY do without injuring myself in my freaking sleep. Who would’ve ever thought I’d survive long enough to start having Old People Problems??
 
On the plus side, I had another transplant appointment a few weeks ago, and once again my lung function was 100%! At least something is working right!!
 
So that’s my last 5 months of medical shenanigans. A bunch of uncomfortable annoyances – and I will freely admit that I’m REALLY unhappy about the ongoing pinched nerve issue – but thankfully nothing majorly dramatic. Hopefully I can continue the trend of avoiding major drama AND ALSO get rid of the random annoyances SOON!

Medically busy

A couple weeks ago was the most medically busy I’ve been in a while!
 
Over the last several months I’ve been getting out of breath more easily, and have found myself getting short of breath even walking short distances. My doctor thought that my airways might have narrowed again, possibly triggered by the 2 respiratory infections I had earlier this year. During the first couple years post-transplant my airways narrowed frequently and I needed regular bronchoscopies to dilate them. Thankfully this settled down over time, and it had been over 2 years since my last bronchoscopy. But a couple weeks ago it was finally bronchoscopy day once again! Fortunately it went very well and I recovered relatively easily. They dilated some of my airways and took sputum samples to check for infections. To no one’s surprise they found pseudomonas in my lungs, which has been a recurrent issue. Right now I’m not showing any significant symptoms so we’re not jumping to treat it, and will just continue monitoring the situation. On the plus side, once I recovered from the procedure I definitely noticed that I was breathing better and was able to walk more easily. Hopefully that’ll take care of the issue and I won’t need another bronch for a long time!
 
That wasn’t my only medical procedure though! Back in February my right ear got clogged up while I was recovering from a cold. It was uncomfortable and also impacted my hearing. At first we expected it to clear up on its own, but after a couple months it hadn’t made any progress. I already do regular medicated sinus rinses, so we tried adding a nose spray to open things up. When that didn’t work we tried raising my prednisone for a couple weeks (aka a prednisone burst), which also didn’t help. Finally I made an appointment with a specialist to get my ear checked out. I originally thought I could see my regular ENT, but apparently he only does sinuses, so I had to go see a completely different ENT. A hearing test confirmed that my hearing was compromised in that ear, but it also showed that the hearing loss was due to a blockage. So they put a tube in my ear! They poked a tiny hole in my eardrum to let the fluid drain, and stuck a little plastic tube into the hole to keep it open long enough to clear everything out. They said since it had been so many months the fluid is probably thick and will take time to come out, so the tube will keep the hole open for 6-12 months before falling out. Getting it in was uncomfortable, but I felt an IMMEDIATE difference both in terms of less pressure in my ear and being able to hear MUCH better. During the day my ear feels fine and I don’t even notice the tube. Overnight, however, the fluid drains out when I lay on my side. It’s a little uncomfortable and a little gross, but it’s better than not being able to hear!
 
After not having much going on medically for a while, 2 procedures in one week felt like a lot! Thankfully they were both pretty routine, and both produced immediate results. Hopefully they’ll just be an unexpected bump in the road and I won’t need any more procedures anytime soon!

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!

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!

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!

Complications

Yesterday was LONG.

I went down for the bronchoscopy around 2:45pm, but didn’t go into the OR until after 4pm. When I woke up around 6:30pm they said a room was finally available and being cleaned, so I waited in recovery instead of going back to the ER. By the time the room was ready, however, it was 7pm shift change, and nothing happens easily at shift change. I eventually got upstairs shortly before 8pm, but I STILL couldn’t eat because my meds hadn’t arrived from pharmacy yet, and I can’t eat anything without digestive enzymes and insulin. I FINALLY got my first (and only) meal of the day at 10:30pm. Whew!

Unfortunately there wasn’t a room available on my usual unit, Silver 11, so I ended up on Founders 14 instead. Silver lining: Founders 14 has the BEST views!

Today we got an explanation for how on earth I ended up with pneumonia after a month of IV antibiotics. Despite the fact that testing in June showed that my Pseudomonas infection was susceptible to Zosyn, the new testing showed that it was RESISTANT. I don’t know when that happened, but clearly the latest round of IV antibiotics was ineffective. So far they’ve identified 2 effective antibiotics: Tobramycin, and Amikacin. Those names might ring a bell… Tobramycin gave me tinnitus, and Amikacin caused some hearing loss. We’d REALLY rather not use those antibiotics if at all possible, so they’re doing more testing to see if we have any other options.

I also learned a new word today: Immunoglobulin G. Since I’ve been struggling with stubborn infections lately, they did bloodwork to check my antibody levels. They’re supposed to be low since I’m immunosuppressed, but turns out they’re even lower than expected. Apparently this isn’t unusual after transplant, and has a pretty easy treatment. We obviously don’t want to lower my immunosuppression, so instead I’ll just use someone else’s antibodies! Immunoglobulin G is an antibody that can be taken out of donated blood and infused into someone who needs it. Hopefully it’ll be the boost my body needs to fight off this super stubborn Pseudomonas infection!

Unfortunately, these complications mean I’m not getting out of here too quickly. It’ll take time to complete testing and determine a course of antibiotics, and then they need to get me stabilized on the right dose before sending me home. So I’m here through the weekend, and then we’ll have to see how things go next week.

On the plus side, I did have a reassuring conversation with my doctor today. I was a bit alarmed by this whole situation, as it was far too similar to last year’s unsuccessful battle with treatment resistant Pseudomonas which resulted in my lung transplant. My doctor reassured me, however, that this time it will NOT cause permanent lung damage. It’s almost impossible to eradicate Pseudomonas from CF lungs. You can reduce and control the infection, but it’s always there, causing permanent damage which builds up over time. These lungs, however, are different. Once we find an effective antibiotic, we’ll be able to successfully treat and eradicate the infection before it causes permanent damage. Hearing that was a HUGE relief!!

So for the first time in over a year I’m settling in for a stay at my home away from home here at HUP. And we all know what that means… Pole People, of course!

Round... wait, what round am I up to?

Well that didn't exactly go as planned. 

During the last week I've struggled with off and on low grade fevers. I've been pretty wiped out with headaches, body ache, and fatigue, but despite lots of testing we didn't see a clear explanation. The fever subsided after a few days, and I was hopeful that it was just one of those weird random things that goes away on its own. After 5 fever free days, however, the fever suddenly returned with a vengeance. I started off at 99.4 Tuesday morning, and my temperature slowly climbed all day. Though I was in touch with my transplant team throughout the day, it was only at 5pm that my temperature finally hit 100.4. They previously told me to call if it got that high, so I called the after hours number, and after consulting with my doctor I was off to the ER to figure out what the heck was going on.

As usual the ER was a tedious waiting game. Once I got to the back we did All The Testing: bloodwork, Covid test, viral swab, chest and abdominal CT scans. And finally we found an explanation. Despite doing 10 days of IV antibiotics in June, and another 3 weeks in July, I somehow have pneumonia in both the upper and lower lobes on the right side. Which is super weird, because I haven't been coughing, or particularly congested, or short of breath. If it wasn't for the fever, I wouldn't have even known anything was wrong! My doctor thinks that I once again have narrowed airways, only this time they're preventing me from clearing out mucus,  which is causing pneumonia. Additionally, my sputum culture last week still showed Pseudomonas despite weeks of IV antibiotics.  Apparently Pseudomonas REALLY loves me! If narrowed airways are preventing me from clearing out secretions, that allows the Pseudomonas to just hang out in my lungs and keep making problems. And Pseudomonas is LONG overdue for an eviction!

Currently I'm still in the ER waiting for a bed at my old stomping grounds, Silver(stein) 11. I'm also on the list to get a bronch today to open up my airways and clear things out. It probably won't happen until later in the afternoon since I'm an add on, which is unfortunate as I'm not allowed to eat or drink anything until after the procedure. Aside from that, the plan is to set me up with another round of antibiotics, get a new long term IV, and send me home within a few days to finish up on home infusion.

My summer is REALLY sucking. I'm grateful that I don't deal with these issues anywhere near as often as I did pre-transplant, but it's still been a very draining couple months. Here's hoping that Pseudomonas finally gets the message goes away for good!

Hello IV antibiotics my old friend

Alright sinuses, that is ENOUGH out of you!

Last Thursday I had a bronchoscopy, which thankfully went well. Once again the airways were narrowed and had to be dilated, so it looks like I’ll still be getting regular bronchoscopies for the time being. Thankfully the recovery wasn’t too bad this time. With that done, I thought my next big medical adventure would be sinus surgery in July.

I thought wrong.

During bronchoscopies they always collect a sputum sample and check for infection, and this time pseudomonas and staph showed up. That’s not great, but it also isn’t the first time I’ve had lung infections post-transplant. These infections are most likely coming from my terrible sinuses, and we’re hopeful that sinus surgery will help significantly. Initially my doctor didn’t think I needed immediate treatment, and planned just wait for the IV antibiotics I will receive after sinus surgery. However, since the bronch I’ve noticed a slight increase in congestion, and this week my bloodwork showed an increase in white blood cells, which indicates that my body is fighting an infection. That’s a problem, since my immune system is suppressed and far less able to overcome infections. Additionally, once my immune system is activated it could easily notice that these lungs aren’t original parts and reject them. That means it’s time to help my body out and zap me with antibiotics to get rid of the infections and send my immune system back to sleep.

This morning I got to have YET ANOTHER Covid test (that’s #3!) so I can go in to get a PICC line placed tomorrow morning. Once that’s in I’ll get started on 10 days of home IV antibiotics to wipe out the nasties in my lungs. After that the PICC line will stay in until my sinus surgery, and I’ll do another round of IV antibiotics afterwards to help clear out my sinuses and protect me during recovery.

I’m definitely not thrilled about having a PICC line for over a month. They’re uncomfortable, and I can’t take a normal shower the whole time as I have to be extremely careful not to get the dressings wet. I’ve been feeling pretty cranky about the whole situation. On the other hand, compared to what I was dealing with before transplant, this is nothing! I’m trying to remember that I know from experience that things could be SO much worse, and that this is a relatively minor bump in the road. Even with the procedures and issues I’ve had to deal with, my post-transplant recovery has really been going remarkably well, and I am SO grateful for that.

Despite everything, Katherine and I got out of the house and went on a nice outing today. Our 3 year anniversary is this Saturday, but we decided to celebrate today before the medical shenanigans get underway. We picked up takeout in Philly and took it to Penn’s Landing for an outdoor dinner on the waterfront. It was great to get out for a bit and do something halfway normal for a change! It’s so important to remember all the things that make this fight worthwhile.

So here I go, back into the fray, once again battling my nemesis pseudomonas and its friends. I hope those little unwelcome invaders are ready, because they’re about to be evicted!!

More procedures

It’s probably not a good sign when a medical professional looks at your CT scan and immediately says, “Oh you poor thing!”

I saw the ENT on Monday to check on my terrible sinuses. They’re always bad, but over the last few months I’ve been coughing a LOT more, which may be due to post-nasal drip. I’ve also completely lost my limited remaining sense of smell. Additionally, I’ve had recurrent infections in my lungs, which may be coming from my sinuses. The CT scan showed that my sinuses are all blocked up and full of polyps, which is kinda standard for CF. Between the ages of 19 and 30 I had sinus surgery 4 times to clear things out, and I only stopped due to feeling that the last couple surgeries didn’t give me enough relief to be worth the difficulty. I mostly just got used to having miserable sinuses, and at this point I haven’t had surgery since 2009.

My transplant doctor has been talking about sinus surgery to clean me out and reduce the risk of lung infections. The problem is that there’s no guarantee as to how much surgery will actually help me. It’s not the worst surgery in the world, but it’s definitely not fun, and it can take months for everything to heal up and see any results. A big deciding factor for me was my sense of smell. The ENT said the damage might already be permanent and surgery might not help, but not having surgery guarantees that the damage will become irreversible. He also said that based on my CT scan, I’ll definitely feel SOME improvement from having surgery, it’s just unclear how much. The only thing we can do is try and see what happens, so I’m currently scheduled for sinus surgery in July.

Even though it was my choice, I’m having all kinds of conflicting emotions about it. For one thing, any surgery is a big deal when you’re immunosuppressed, and it’s typical to get prophylactic antibiotics. So I’ll be hospitalized for (hopefully only) one night afterwards for observation, and then sent home with a PICC line for a few weeks of IV antibiotics. At this point it’s been over a year since I was on IV antibiotics, which is wild considering I used to get them 3 times a year for a month or 2 at a time! So on the one hand I’m super grateful for how much healthier I am, but having to do IVs again is stirring up old memories and fears, and part of me is bitter about having to revisit that part of my life. It’s also hard to force myself to go through what I know is an unpleasant procedure and recovery process without knowing how much benefit I’m actually going to see. It’ll be extremely upsetting if I go through all this and it doesn’t end up improving my quality of life. But there’s no way to know what the outcome will be, so I just have to try and hope for the best.

It also feels like my life these days consists only of sitting at home or going out for medical appointments and procedures. Covid life is definitely getting to me, particularly because no matter what the governor says, I’ll still be on my own personal lockdown due to being in a high risk category. As everything opens up I’ll need to be even MORE cautious, as there will be more spread in the community. It’s frustrating to go through all that transplant entails only to have life look dismayingly similar to how it did back when I was sick. It’s wonderful to be able to breathe, but it would be nice to experience more from life than just managing medical issues.

Speaking of which, tomorrow is bronch day. Which means I had to go get a Covid test today, because you can only go into the OR if you’re cleared. So THAT was fun. Apparently I’m currently on the monthly Covid test plan: this month for the bronch, next month for sinus surgery, and the month after that for my Pulmonary Function Test (PFT). Boy do I know how to party!!

And so my life of lockdown and medical shenanigans continues. Can’t wait for the day that I get to leave at least some of this drama behind and finally get back to LIVING!

Pandemic bronchoscopy and Pesach madness

You know your life is intense when your immediate reaction to the thought of potentially catching COVID-19 and suffocating to death is, “Not AGAIN!!”

I’ve been feeling oddly emotionally detached from the chaos and trauma that are currently engulfing the world. Part of it is because my life hasn’t actually changed that much, since I’ve been hunkering down and desperately trying to avoid germs for months now. I also have lots of experience with pondering all the terrible ways I could die and the fact that it could happen at any time, both before and after transplant. So I guess my whole life, and particularly the last year, have been excellent preparation for a world altering pandemic.

Last week I had a bronchoscopy. We debated whether it was worth the risk, but decided it was better to do it now before the world becomes even more chaotic and dangerous. Apparently I made it in just under the wire, as shortly afterwards almost all procedures were suspended. The whole bronch-during-a-pandemic experience was pretty surreal.  It started with a bizarre phone call over an hour before my appointment letting me know that they had an earlier opening available and I could come in whenever I wanted. That NEVER happens!! We then zipped through the trafficless city streets in record time. Valet parking was closed, so we used the lot across the street and walked to the hospital, which meant we got to see the usually jam-packed Perelman Center looking like a ghost town. On arriving at the hospital we had to use hand sanitizer and get checked for fever, and were asked about any potential COVID exposure. The pre-op waiting room was absolutely empty, which is absolutely unheard of. And then there were all the new regulations and procedures to protect both staff and patients: everyone in masks at all times, new extended cleaning routines, being placed in an isolation room post-op. I definitely wasn’t thrilled about heading to the hospital and potentially exposing myself to all kinds of germs, but I did feel pretty safe in the end.

Thankfully this bronch looked better than the last one, and we think I’ll be able to wait at least 2 months before doing it again. Who knows what the world will look like then, but hopefully, HOPEFULLY, it’ll look better than it does now. And 2 months from now will also be after my one year “lungiversary,” which is pretty mind blowing! It’s so bizarre that I somehow managed to survive respiratory failure and a double lung transplant only to end up trying to survive a global pandemic less than a year later. I’m not sure what I imagined my post-transplant life would look like, but it certainly wasn’t this!

Right now, however, I have a more immediate concern: Pesach (Passover)!! The last couple weeks have been a whirlwind of planning and lists and enlisting family and friends to go shopping for me and finding online retailers that still ship in a reasonable time frame and cleaning and cooking and tears and panic attacks. And I know I’m not the only one who has been losing my mind over suddenly needing to make Pesach for the first time. I know this has been an extremely difficult time for the entire Jewish community, and that so many of us are now forced to be alone during a holiday that typically involves multiple huge celebratory meals filled with family and friends. Honestly, I really wasn’t sure I could manage everything! Yet somehow here I am, several hours before Pesach, with almost everything prepared and ready to go. I hope everyone else also found unexpected reserves of strength to get through this, and that we all manage to make the holiday as festive and meaningful as possible.

Last year I was in the hospital for Pesach. I definitely had much higher hopes for this Pesach! But, at least I’m home, and mostly healthy. The mere fact that I’m alive to see this Pesach is a miraculous blessing! Yes, preparing was stressful, and exhausting, and the next few days will definitely be long. But, I did it! Last year I couldn’t have managed even a fraction of the work I put in these last few days. This year, I can BREATHE! So instead of focusing on everything and everyone that’s missing, I’ll try to focus on that. I’ll try to appreciate all that I accomplished, and the very fact that I was able to accomplish it. I’ll try to have the best Pesach I can under these conditions, and know that next year WILL be better. Next year we will be together again, and we will appreciate it all the more for having missed each other this year.

Chag kasher v’sameach (Have a happy and kosher Passover)!!

From Purim to Pandemic to Pesach

The good news is I haven’t had any symptoms since Purim. The bad news is the world has gone to pieces since then!

It’s kind of funny because while everyone else is losing their minds, for me these restrictions and anxieties are just a mild escalation. Welcome to post-transplant life everyone! I’ve been scrubbing my hands and avoiding crowds and running away from anyone showing any signs of illness for almost a year now. And even before transplant I was cautious about germs, as any respiratory infection had the potential to be disastrous. Since I’ve already been on edge all cold and flu season, I initially felt relatively calm about the whole COVID-19 situation.

Then the shuls closed down. And the schools. Large gatherings were prohibited, then smaller gatherings. The list of closed businesses grew by the day, and an 8pm curfew was established. Places that previously were safe for me became off limits, as stores were swamped with crowds of panicked shoppers at all hours of the day. Then there were the regular emails from Penn Medicine with new restrictions: all non-urgent appointments and procedures postponed indefinitely, routine followups to be conducted virtually, no visitors allowed. I started feeling more anxious as my already small world kept getting smaller.

On Tuesday I went to Penn’s COVID-19 testing center for a drive-through test, even though I haven’t had any symptoms aside from a few hours of fever and feeling a little off for one day last week. We don’t actually think I have COVID-19, as we’d expect an immunosuppressed transplant recipient to have a far more significant response. But nothing else showed up on my viral swab to explain my symptoms, and now I’m due for another bronchoscopy. During a bronchoscopy the infection could become aerosolized and contaminate the room, making it impossible to adequately clean between patients. Due to this I need to be cleared of COVID-19 before I can schedule a bronchoscopy. We also need to make sure I don’t catch it post-test and pre-bronch, so I’m basically semi-quarantined now. And even after the bronch, my transplant team recommends that I pretty much stay home and avoid most in-person human contact now that cases are spreading more rapidly and becoming more prevalent.

Honestly, even that wouldn’t be the biggest deal except for one thing: Pesach. I’ve been feeling increasingly overwhelmed and anxious every time I think about it. I usually go out for yuntiff and Shabbos meals on Pesach, if I’m even home at all. The extent of my Pesach cooking before now has pretty much been limited to hard boiled eggs and matza pizza. I also have never been in this apartment for Pesach and don’t have anything prepared here, since last year I was in the hospital. But now for the first time I can’t rely on going out for ANY Pesach meals, and I don’t know if I’ll even be able to safely accept food prepared by others by then. Suddenly I need to determine and purchase all the utensils and cookware and kitchen accessories I’ll need for Pesach, plus get all the food to make both yuntiff and weekday meals, including a seder. And somehow I’m supposed to do all of this while unable to leave home! I don’t even know what I need or what’s available, how exactly am I supposed to make a shopping list for someone else? Just thinking about it is overwhelming!

Ironically, I spent all of last Pesach stuck in the hospital wishing desperately to be home. And now this Pesach I’ll be locked up inside my home wishing desperately that I could get out. G-d certainly has an interesting sense of humor!