Not just a cold

Well, it’s not just a cold. It’s RSV.
 
My transplant team doesn’t mess around with any signs of infection, so even though my symptoms weren’t too bad to start with, they brought me in for a viral swab on Tuesday. We got the results on Thursday, and it turns out I have RSV. Unfortunately there isn’t much they can do for RSV aside from symptom management. So I’m taking Mucinex, and doing nebulizers twice a day, and trying to stay super hydrated. Normally they would have also given me steroids, but they don’t want to do that since I still have an open wound, and steroids can impede healing. Instead they prescribed an antiviral, which I started yesterday.
 
Things have honestly been pretty pathetic around here. Katherine is also sick, and we assume she also has RSV. She’s been utterly miserable and says it’s the worst cold she’s had in her entire life. My symptoms were more manageable to start with, but over the last few days I’ve had a significant increase in both head and chest congestion. Though I can feel the congestion rattling around in my chest, I’m having a REALLY hard time getting any of it out. I already have trouble clearing congestion due to my airways narrowing post-transplant, and I have a feeling they’re even narrower now thanks to the RSV. It’s pretty uncomfortable, and I had a hard time sleeping last night because I kept feeling like I was choking on mucus. Today has been a little easier, so hopefully I’m past the worst of it. Fortunately I haven’t had any fever and my oxygen levels have remained stable, so maybe I’ll manage to stay out of the hospital and finish weathering it at home.
 
RSV would be a lot even under the best of circumstances. But I’m also dealing with the wound vac and an exhausting infusion schedule. I also have a busy week coming up, with appointments with the plastic surgeon as well as with Infectious Disease. It really is A LOT to deal with all at once, and I’m feeling pretty beat down. I feel like after having a couple years where things were relatively quiet medically, I’m now making up for it all at once! Maybe this week I’ll finally get some answers as to when I can be done with the wound vac and the IV antibiotics and start getting back to some semblance of normalcy!

Keeping busy

It’s so good to be home!
 
What a relief to be out of the hospital! I am GREATLY appreciating my comfy bed, and having access to a kitchen full of food whenever I want, and finally getting some peace and QUIET away from all the noises and interruptions and poking and prodding of the hospital! And, of course, getting to be with my amazing partner, who deals with so much and takes such wonderful care of me! Home is good!
 
That doesn’t exactly mean I’m living my best life here. I still have the wound vac, which is uncomfortable at best and sometimes pretty painful, particularly during dressing changes. My skin can be sensitive to adhesives, and less than 24 hours after the wound vac was put on I actually got a welt from the first dressing they used. The welt is slowly healing, and we’re using a different dressing now that I’m less sensitive to, but my skin still isn’t loving it and I’m often itchy.  Then there’s the dressing changes, during which they remove and replace the sponge packing the wound. This happens at least 3 times a week, and is painful every time. Most of the time I can get by without taking anything stronger than Tylenol, but for dressing changes I take a small dose of oxycodone to make things more comfortable. There’s still no word on how long I’ll have the wound vac, but it will be for at least another week, which is when I have an appointment with the plastic surgeon to assess my progress and see if they’re ready to stitch me up. So far everyone has said that the wound is healing nicely, so I’m hopeful that I won’t need the wound vac much longer!
 
Aside from all that, I’m also on a pretty rigorous infusion schedule. I run my IV antibiotics 3 times a day at 6am, 2pm, and 10pm, and each infusion runs for about 3 hours. To make it more complicated, for some reason the pharmacy isn’t able to fit the full dose into one bag, so halfway through each infusion I need to switch to a 2^nd bag. All that doesn’t exactly leave a lot of time for sleeping. I’m definitely getting much better quality sleep at home than I was in the hospital, but both Katherine and I are still pretty exhausted. Right now they haven’t set an end date for the antibiotic, and are waiting to see how the wound heals. I do have an appointment with Infectious Disease at the end of next week though, so hopefully we’ll have a clearer plan then.
 
I’ve also been kept busy with nursing visits! I have 2 home care agencies following me, one to take care of my infusions and PICC line, and one to take care of the wound vac. I had an infusion appointment the day I came home, and then a wound vac appointment over the weekend. And today was especially busy, because I had both! The infusion nurse came in the morning to draw my weekly labs and change the dressing on my PICC line, and the wound care nurse came in the afternoon to change the dressing on my wound vac. That will be the schedule every Monday for as long as I have both the IVs and the wound vac, and it’s a lot! In addition to that I also have wound vac appointments on Wednesdays and Fridays. Being sick is a lot of work!
 
And because we didn’t have enough going on, Katherine and I came down with colds over the weekend. Katherine is feeling pretty miserable, but thankfully my symptoms aren’t too bad so far. But my transplant team doesn’t mess around when it comes to infections, so tomorrow we need to shlep back into Philly so they can take a viral swab and try to identify what I’ve caught. Planning anything is difficult with my infusion schedule, plus I have to lug the wound vac with me wherever I go, so I’m not exactly looking forward to leaving the house. At least it shouldn’t take long.
 
So that’s the story around here. My days are jam packed with medical shenanigans, and I am TIRED. But I am very, very glad to be dealing with all this from the comfort of my own home!

Home!

After almost 2 weeks in the hospital, I'm finally HOME!

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!