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!

Never a dull moment

Once again it has been far too long since my last post. And once again, this in no way indicates a boring and tranquil life. In fact, recent months have been an absolute whirlwind of stressful events!
 
Stressor #1: A few months ago Katherine’s mother was injured in a bad fall. Ever since, she’s been back and forth between the hospital and rehab while dealing with numerous medical issues. This alone would be stressful, but she also owns a cat, and Katherine was taking care of him. When it became clear that her mother would not be returning home any time soon, we finally decided to bring Winston to our home. This would have been fine, as we both love cats, except for the fact that we already have a cat who does not play well with others. Peaches’s large-and-in-charge attitude combined with Winston’s anxiety and spazziness was pretty much the disaster we expected. Cramming two fighting cats and two humans into a small one bedroom condo wasn’t fun for anyone involved.
 
Stressor #2 is actually good news, but still stressful. We moved! Things came together for us to buy a larger two bedroom condo in the same building, and we pretty quickly found a unit that we loved. There’s only one issue: it’s on the 6^th floor, which is great for the view, and not so great for Shabbos when I don’t use electronics – including elevators. A few years ago living on the 6^th floor would have been absolutely out of the question, but I soon realized that I actually CAN manage the stairs now. My lungs are fine, I’m just out of shape! So we took the plunge, which of course involved all the stress of packing and renovating and buying things and getting rid of other things and general chaos, plus freaking out the aforementioned angry cats by bringing them to a new environment. But we did it, and we love our new place! The extra bedroom not only has space for my office area and a guest bed, but also my easel and a drafting table, so I finally have studio space for the first time in AGES! Now I just need to actually use it!
 
Stressor #3 inserted itself right as we were in the middle of moving. Several months ago I suddenly developed lumps at both ends of my transplant incision. Turns out I have sutures there, which can sometimes become irritated. My doctor said they were fine as long as they didn’t become infected. Occasionally they would become swollen and painful for up to a week, but I mostly learned to live with them – until October, right in the midst of moving, when one of them not only became swollen and painful, but also turned red. My transplant surgeon decided that I needed surgery to clear out the infected area, however by the time I saw him the swelling and redness had faded so he couldn’t determine exactly what needed to be removed. He told me to come back the next time it flared, which actually worked out well as we could finish moving in peace instead of juggling moving around surgery recovery.
 
So that’s the last few months of chaos. Now let’s talk about the last two weeks!
 
Last week one lump became red and irritated again, so we rushed to see my surgeon and scheduled surgery for December 30^th. But this time instead of briefly flaring and then fading, the lump continued getting worse, until I needed painkillers to manage it. It then developed a blister, and my doctor decided right before Shabbos that I had to go to the hospital. He agreed that I could at least have Shabbos dinner and spend the night at home before going to the ER Saturday morning. During the night the blister ended up popping and draining, which may have been for the best, as it started looking better afterwards and was far less painful. Instead of being put on IV antibiotics, I only ended up being hospitalized for 1 night before they sent me home on Sunday.
 
Great, right? Crisis kind of averted! Not quite. You see, right before being hospitalized I started losing my voice, which got progressively worse the following days. It peaked on Sunday and then started getting better, but I then developed sinus pain, a dry scratchy cough, and most worryingly a low grade fever. I thought maybe I had picked up a cold and would be able to weather it, but Tuesday night my fever spiked to 101.5, which guaranteed yet another trip to the ER. And since I didn’t have enough problems, I also noticed a 3^rd painful lump in one breast, not far from one of the lumps on my transplant incision. So I’ve been back in the hospital since Wednesday and they aren’t rushing to send me home. The goals now are to figure out what exactly is going on with these lumps and determine what specific infection is causing them so we can target it with the right IV antibiotics, and to decide whether I need more extensive and invasive surgery than we previously thought. We still haven’t come up with a treatment plan, which really sucks as we head into a holiday weekend where a lot of testing and procedures will be less readily available. I honestly have no clue what the short or long term plans are at this point, and I don’t think my doctors do either!
 
So that’s the latest in Eliana’s Medical Misadventures. Let’s all hope things only get calmer from here!