Home!

After 10 days in the hospital I am finally HOME!!!

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!!

It's done

Brief update: 

I'm really hurting. They did remove bone, but they also found and removed the suture, so I'm super happy about that. I'm mostly taking pain meds and sleeping right now.

Full update to follow when I'm more functional.

Almost there

Surgery hasn't happened yet, but I should be going back any minute now! I am hangry and more than ready to be knocked unconscious already. Prayers and positive vibes are appreciated!

Unwanted excitement

Never. A dull. Moment.
 
I finished my last dose of IV antibiotics on 1/8. The Infectious Disease doctor wanted me to keep the PICC line in for another week to see how I did off the antibiotics, but no longer running 3 hour infusions 3 times a day meant I could finally SLEEP. I felt sooo much better after just a couple nights. It’s amazing what getting a halfway decent night’s sleep can do!
 
On 1/9 I saw my new transplant doctor. I already knew her from prior hospitalizations, and actually had her during part of my inpatient stay last month. We skipped my usual PFTs (Pulmonary Function Tests) since I was still recovering from RSV and she didn’t want me to see bad numbers and be alarmed. They also did another viral swab to see if I was still positive for RSV. Despite my symptoms being significantly better, the swab still came back positive. Apparently RSV can last for a long time in immunocompromised patients, but it’s unclear whether I’m actually contagious, as the test can also pick up dead virus. Thankfully, aside from some lingering shortness of breath, my symptoms have pretty much cleared up.
 
On 1/13 I had my regular weekly lab work, which surprisingly showed that my white blood cell count was high. Everyone was confused by this, as it hasn’t been high through the last several weeks of fighting various infections, and I wasn’t showing any current signs of infection. I also informed my transplant team that I was having some off and on pain in my other transplant incision, which made everyone nervous about a potential infection brewing there. So we decided to keep the PICC line in a bit longer until I could get a chest CT scan with contrast and see what was going on.
 
Which brings us to Saturday.
 
On Saturday, I noticed that the arm with my PICC line was kinda discolored and swollen. My mom came over to check it out and agreed that it didn’t look right, so I called the home infusion company that was managing my PICC line. They told me to reach out to my team, so I spoke to the transplant doctor on call, who thought it sounded like it could be a blood clot and said I should go to the ER. She suggested trying Pennsylvania Hospital instead of HUP, as they are still in the Penn Medicine system but might be less busy than the typically insane HUP ER. And sure enough, the waiting room was almost empty and I went right back! One ultrasound later and we confirmed that I did indeed have a PICC induced blood clot, aka a DVT (Deep Vein Thrombosis). Thankfully the CT scan did not show a pulmonary embolism, which is a potential complication of a DVT… but this is where things went off the rails. Because what the CT scan DID show was a “gaseous collection” at my surgical site, which could be an indication of infection. And after having a surgical washout and weeks of IV antibiotics, I should NOT have any signs of infection. So now what should have been a quick DVT diagnosis and prescription for blood thinners turned into being admitted to figure out what the heck was going on. BUT Pennsylvania Hospital wasn’t equipped to handle my complicated case, so I had to be transferred to HUP, which didn’t have any beds available. Which meant I got to wait in the ER until HUP could take me. Between waiting for testing and waiting for a bed, I spent about 18 hours in the ER before finally getting into my room at HUP. Fun fun!
 
Being transferred was a little exciting because it meant I got to ride in an ambulance for the first time in my life. Shockingly, despite my lifetime of medical drama, I had never actually been in an ambulance! It only lasted like 10 minutes and was pretty low key, but it was definitely a new life experience.
 
On Sunday I settled into my room at HUP and they got me back onto IV antibiotics until they could figure out what was happening. The figuring things out part didn’t really happen until Monday though when all the specialty teams were back in business. So that meant consulting with the lung disease team AND the cardiothoracic team AND the Infectious Disease team AND my surgeon. And thankfully, after various tests and consultations, everyone decided that my wound was healing fine, that there was no sign of infection, and that the “gaseous collection” was just a pocket that hadn’t finished healing yet and needed more time to close up. Which meant that on Monday afternoon, after pulling the PICC line and giving me a prescription for blood thinners for the DVT, I was free to go!
 
It was an EXHAUSTING weekend! Thanks to the ER trip I ended up being awake for over 24 hours from Saturday afternoon to Sunday night, and of course sleeping in the hospital Sunday night wasn’t exactly restful. Getting a full night’s sleep Monday night was wonderful! And then on Tuesday, for the first time in over 6 weeks, I was able to take a lovely IV free shower. Getting the PICC line out is a HUGE relief, as it was in an awkward location and has been hurting me for weeks. I’m one step closer to being fully recovered, as all I have left now is my wound, which is getting smaller by the day and healing very well. I have a follow up appointment with the plastic surgeon next week, so we’ll see what he thinks about my progress.
 
Hopefully that was the LAST of the drama for this round of medical shenanigans, and I can stick with regularly scheduled appointments from here on out!

Still here

Aaand I’m still in the hospital.
 
We finally got the results we were waiting for back this morning, and my immunoglobulin G was indeed low. That meant I needed an infusion of IVIG to bring it back up and help me be more able to fight off infections, including this pseudomonas infection. Unfortunately the infusion takes a few hours, so there was no way we could get it done in time for my visit with home infusion. So I got to spend another day enjoying the amenities of Hotel HUP.
 
On the plus side, they’re running out of reasons to keep me here! The only thing left that could potentially cause a snag is that I need a dressing change tomorrow. I’ll be having home health nurses come out regularly to take care of the wound vac, but they aren’t available until Saturday, and I shouldn’t go that long between dressing changes. So we’re planning on a dressing change tomorrow morning before I’m discharged. This shouldn’t be a problem, but as we’ve already seen, you never know how things will go around here.
 
Hopefully, HOPEFULLY, tomorrow will be snag free, and I will finally be able to go HOME!

Still in the hospital

Well, I’m still in the hospital.
 
They didn’t get the wound vac on until Monday afternoon, which meant it was too late for me to have a visit from home infusion. And then the doctors who did the wound vac didn’t put in the right paperwork, so it took until today to get things set up with the home care company that will be taking care of it (which, by the way, is DIFFERENT from the company who will be responsible for my IV infusions!). AND ALSO my doctor ordered a test to see if I need an IVIG infusion to boost my antibodies and help me fight off this infection, and they still haven’t gotten the results back. So right now we’re planning on discharging me tomorrow, but we also planned on discharging me yesterday and today, so I’m not holding my breath.
 
I’ve actually been pretty out of it the last couple days. Unlike what they initially told me, getting the wound vac HURT. To put it on they first took out the gauze that was packing the wound, and then packed it with a special sponge instead, which was painful by itself. Then they put the wound vac hose over that and secured it with a dressing for a tight seal. And then they turned the wound vac on, which hurt some more. The first day they put it on I ended up taking both oxycodone and Dilaudid, so I was high as a kite and knocked out for the night. I did better today, until they had to change the dressing because my skin was reacting to the adhesive. So that meant taking out the sponge, putting in a new one, and hooking the vac back up –  which was, once again, painful. Today I was able to get by with just oxycodone, but that pretty much left me in a stupor all afternoon. Apparently I’ll be getting dressing changes every other day when I get home, so I’m definitely not looking forward to that. It’s currently unclear how long the vac will be on, since they just have to see how healing progresses. Right now I’m continuously chained to an IV pole, but fortunately the home machine comes with a carry case, so that’ll be a little easier.
 
So now I’m once again dependent on the home infusion company’s schedule to determine whether I can go home tomorrow. They need to know if I’m being discharged by 11am so they can get supplies out to my home for a 2pm nursing visit. Depending on when this last test result comes back, whether or not I need an infusion, and how quickly they can do the infusion if I need it, I MIGHT make it home tomorrow. But if we don’t have an answer by 11am, discharge will be pushed off yet another day. Here’s hoping the last pieces fall into place SOON!

5 star service

One of the reasons I like being on my usual hospital unit is because I get to see nurses I’ve known for years. Now that my hospitalizations are far less frequent I don’t know the nursing staff nearly as well as I used to, but there are still some long timers here who know me from before transplant. One of those nurses is Tim. Tim was actually working the day I got my transplant and escorted me down to pre-op. He is a fantastic nurse in so many ways, but today he revealed a new talent! While I was washing up in the bathroom, he took the time to turn a bunch of hospital towels into towel art!! I came out to an unexpected and adorable elephant and swan decorating my room, as if I was in a fancy hotel instead of a hospital! Where else can you get such 5 star service? I love my nurses!

Recovery

Thankfully surgery went well! Much to my surprise my surgeon actually found and removed the suture that could be the source of these infections, so that was great news! I felt pretty rough immediately afterwards, but one dose of oxycodone later I was MUCH better. Things went pretty well most of the day on Friday until they had to mess with the wound. This time they did not stitch it up and instead packed it with gauze, so it was uncomfortable when they unpacked and replaced the gauze. I’ve also been getting eardrops for my ongoing ear issues, which requires laying flat on my side for a while so the drops can go through the ear tube and into my inner ear. Fortunately I don’t have to lay on my surgical site, but even laying on the other side tugs on and exacerbates things. So I’ve been taking oxycodone to deal with that, which means I’ve been sleeping A LOT. Which is one way to pass the time here.
 
The current plan is to put a wound VAC (Vacuum Assisted Closure) on the surgical site, likely on Monday. Apparently that’s a special dressing that’s attached to a pump, which removes pressure from the wound. This helps pull fluid from the wound, pulls the edges of the wound together, and promotes tissue growth to help it close. I’ve never had a wound VAC before, but it’s not supposed to hurt, and I’m able to go home with it. They have different size pumps, some which need to be attached to an IV pole, and some which can be carried around in your pocket. I’m obviously hoping for pocket sized, but I won’t know until it gets here.
 
The other big news is that they found more antibiotics for me! They actually found THREE antibiotics aside from Tobramycin, which is much better than last time! I was actually pretty worried about whether they would find more antibiotics, so that was a HUGE relief. They started me on one before surgery, but it turned out the homecare company couldn’t accommodate that one, so they switched me to another one. And in the end they decided that since my surgeon was able to clean things out so well, I only need one antibiotic this time. The schedule is a little annoying because each dose needs to run for 3 hours, so 3 times a day I’m chained to an IV pole for a while. But I’ve been through way worse infusion schedules that hardly allowed for any sleep, so I’ll take 3 time a day!
 
Now that surgery is done and my antibiotic is settled, we’re just waiting on the wound VAC. Then I’ll be able to finish up however long they want me on the wound VAC and complete the remainder of my 2 week course of IV antibiotics at home. I already met with a nurse from the home infusion company, and they’re ready to go as soon as my team approves discharge. The only catch is that they can only come out to get me started during my afternoon dose, since they can’t really send out a nurse at 6am or 10pm. If my team isn’t ready to discharge me early enough to get home for a 2pm dose, we have to wait until the next day. I highly doubt they’ll be able to pull everything together for a Monday discharge, but hopefully Tuesday will be the day!

The plan of attack

We’re finally getting somewhere!
 
There was some confusion and communication mix-ups trying to coordinate between 2 surgeons, but in the end I’m scheduled for surgery with just my transplant surgeon tomorrow morning. He thinks that there’s a suture from transplant in my chest that has been harboring infection and allowing it to resurface, so he’s going to clean out the infected tissue and try to find and remove the suture. The last time I had these abscesses they also looked for a suture but couldn’t find it, so he plans to go deeper this time. Though I’ll be getting general anesthesia, he expects it to be a quick and easy surgery. And at least this time I’m only getting one side opened up, unlike last time when they had to open up both sides. Hopefully recovery will be a little easier this time.
 
One somewhat alarming thing is that on the MRI they saw a little bit of something starting on the other side too. They didn’t see enough to merit going in surgically, however. The current hope is that if an infection has also begun on the other side, the antibiotics I’ll be receiving will be enough to take care of it. The bad news is that susceptibility testing shows that my current infection is a multi-resistant monster like I had last time, so there aren’t many antibiotic options available. So far they have identified one antibiotic, which I started taking tonight. But they really want me on 2 antibiotics simultaneously, so they’re doing extended susceptibility testing in the hopes of finding other options. Right now the only other option available is Tobramycin, which I refuse to take. Tobramycin has already given me permanent (but thankfully mild) tinnitus, and the last time I attempted to take IV Tobramycin the ringing got louder within just a few days. It’s pretty clear that if I did a full 2 week course of IV Tobramycin, the ringing would become unbearable. Hopefully the extended testing will find at least one more antibiotic that I can use without terrible side effects.
 
We do still have another trick up our sleeve though. My transplant doctor has already been in touch with the bacteriophage (aka phage) therapy program at Yale. This is an experimental treatment that is not widely available in the United States. Fortunately for me, Yale has a phage therapy program specifically for CF patients with pseudomonas. Bacteriophages are a type of virus that attack bacteria without causing harm to humans. The catch is that each bacteriophage will only attack a specific bacteria, so they must be grown tailor made to the infection you’re trying to treat, which takes months. The current plan is to treat my infection immediately with surgery and antibiotics, submit a sample to Yale to develop phages for me, and then hit the infection again with phage therapy in a few months to hopefully eradicate it once and for all.
 
Right now my focus is on getting and recovering from surgery, and the impending course of antibiotics. It looks like I’ll be in the hospital through the weekend, and they’re tentatively talking about discharging me next week. It’s not fun being stuck in the hospital, and I’m definitely not looking forward to going through multiple rounds of treatment, but I’m grateful that I at least have some options available. Hopefully surgery will go smoothly and the recovery will be quick, and they’ll find one more great antibiotic for me soon!

The usual suspect

And to no one’s surprise, Lump is infected with… Pseudomonas.
 
That brings us one step closer to coming up with a treatment plan, but we’re still waiting for some important test results. Specifically, we’re waiting for susceptibility results, which will tell us which antibiotics can be used to treat it. Recently when I cultured Pseudomonas in my lungs, we were surprised to find it was less resistant than usual and was actually susceptible to multiple antibiotics. I have a hunch, however, that the current infection is leftover from the last time I had abscesses in my incisions, and that particular Pseudomonas was extremely resistant and had very limited treatment options. The susceptibility results are critical to determining what kind of treatment I’ll be getting, and we can’t really move forward without them. I’m hopeful that MAYBE they’ll come through tomorrow and we can get this show on the road.
 
Today’s adventure was getting an MRI to determine whether or not the infection has gotten into my bones. I had an MRI a few years ago the last time I had abscesses, but I had forgotten how unpleasant it was. I’m not usually claustrophobic, but being shoved into that little tube definitely had me a bit freaked out. It was also startlingly loud, and took way longer than I anticipated. All in all I spent around a half an hour in the machine, though I did request a brief break in the middle. And for some of the scans I had to repeatedly hold my breath for 20-30 seconds at a time, which was difficult. All in all it was NOT a fun experience! But thankfully it’s over, and hopefully I won’t have to get another for a long time, if ever!
 
On the IV front, unfortunately IV #3 didn’t even last a day. My team advocated very strongly for me to get a longer lasting type of IV called a PICC line, but apparently Interventional Radiology and the IV team are extremely stingy about them. Instead, the IV team put in an ultrasound guided IV, which THANKFULLY has actually lasted for over a day and is still going strong! And even more thankfully, tonight Interventional Radiology FINALLY told me that I could get a PICC line, so that should be happening sometime tomorrow. I’m really looking forward to NOT being a pincushion anymore!
 
On a lighter note, as is tradition, I have decorated my room with the latest batch of Pole People! A few staff members remembered them from previous hospitalizations, and a bunch of new-to-me staff have been pleasantly surprised by them. I hope you all enjoy them too!

Lump drama

Lump did not, in fact, keep it together.

Over the last week I've been both concerned about and frustrated by Lump. I had a few consecutive days where it was constantly itchy and/or painful, which was wearing me down. I still had so many weeks to go until my scheduled appointments, and I was not looking forward to being perpetually uncomfortable for at least month. Thankfully it eased off for a few days, but then it started acting up again on Friday. By Friday night it was swollen and red and looked particularly angry.

Late Friday night I woke up drenched, and immediately knew what had happened. Sure enough, Lump had burst and released a shocking amount of pus. I didn’t feel capable of dealing with anything at 3am, so I just cleaned up and went back to bed and decided it could be a tomorrow problem. In the morning it was still oozing an appalling amount of pus, so we reached out to my doctor, who fortunately had given me his cell phone for emergencies. Given the sudden escalation in symptoms and obvious signs of infection, he decided we couldn’t wait for my scheduled appointments, and it was time to be admitted to the hospital to fast track things and start IV antibiotics. So off to HUP we went!

The big advantage of being in the hospital is that I don't have to sit around waiting for appointments. They sent me for an updated CT scan, and took cultures of the disgustingness that was draining out of me so they can finally identify the infection and determine the best course of treatment. They also got me started on both an IV and oral antibiotic that they hope will be effective against whatever I have. They’re currently debating whether or not I need an MRI, and working on scheduling surgery to clean out the infection and finally evict Lump. They MIGHT manage to get me in by Friday, but that's unclear because they’re trying to have both my transplant surgeon and a plastic surgeon be involved in the procedure, so that’s 2 busy schedules to coordinate. In any event, I will definitely be getting things taken care of MUCH faster than originally planned!

Unfortunately, my veins have been particularly terrible thus far. My first IV went bad in less than 2 hours, before they even had a chance to run anything though it. My second IV did better, but still didn’t even last a day. And both of those IVs took 2 tries each to get in. Thankfully, IV #3 went in on the first try. Here’s hoping it has more staying power than the first 2 did!

So right now I'm in the wait and see part of this hospital stay. Waiting to get the results back from my cultures and determine a treatment plan, and waiting to see when they can schedule surgery. But at least now the wait will be MUCH shorter than it would’ve been as an outpatient!

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!

Going home!

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

Rollercoaster ride

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

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

Well we know what I don't have

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

The waiting game

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