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!