Cat’s out of the bag

 

 This blog post has been "written," or, living inside my brain, for months. It has undergone many formats and a lot of rewrites. Any time I'd reach a new plateau -- or, a stable place from which I could reflect and update on recent happenings -- another health milestone would show up on the radar, selfishly stealing the precious little energy and concentration I had each day. (By the way, here's a good rule of thumb: kidney failure also means brain failure as the body tries its best to keep working despite toxic blood pumping around.) 

Many things fell through the cracks as major fatigue, breathing difficulties, treatments and doctor appointments ate into more and more of my life. Sometimes, I felt as if I was only living so that I could stay alive.

Since then, I've struggled mightily to put words together that were honest and frank without being overly sad or dramatic. At the same time, I didn't want to minimize the seriousness of my current situation and all that had transpired for me to go from being “basically fine” to “basically not fine.” 

[Approximately four months ago]

Over the last several years, I’ve gotten the silly idea in my head that not sharing my health decline with others would protect them from upset and worry. For the few I did speak to, I’d grown tired of explaining my complicated lung-rejection-plus-bacterial-resistance-plus-kidney-failure situation. I grew tired of answering the same questions and giving explanations that, even simplified and to the most careful listener, made eyes glaze over. I got tired from talking! There were many unknowns, hypotheticals and questionable outcomes. Where to begin? Where to draw the line between hopeful and delusional? 

It was too damn much for anybody, including myself. I worked hard to digest my decreasing lab results, come to terms with unfavorable outcomes and live in the present moment. And for the first time I saw my relatives - who had been through everything with me - starting to freak out. Now, it feels as though there is too much to say. But, I need to start somewhere, so here it goes.

I was going to begin with my hypothetical description of a wonderful morning, slowly sleep-waking, coming online, easing into my first conscious thoughts of the day, blinking away soft kitty claws to my face and hair, landing at the start of a day of possibility. I loved having a dog walker so I could sleep in, how lucky I am to not have to work so I can concentrate on taking care of myself. La-la-lah! 

I planned to bring back the 'wonderful morning' illustration at the end of the post to contrast my current La-la-la, la-la-la, everything is nice... And then I hit the reader hard. In reality, one of my first morning thoughts is, Damn-it, I'm still dying. Fuck…  

The true inspiration for it I was the first lines to an Incubus song that I love.
"Seven am... [super chill] the garbage truck beeps as it backs up and I find myself thinking about all I've thrown away..." But the jumping off point in the lyrics just wouldn't work.

After dropping that emotional bomb, I would lighten up my tone, become less serious, turn the other cheek, and so on. Try to keep it palatable. But that would not be true to my reality and the tenor of the last half year or so. The truth is that while I've lived my life with the idea that I would die young, when it comes to the actual dying part, things get really crazy --- fast.

Stay tuned for more antiquated, retrospective blog posts! 

hospital

sunday, march 9

I’ve had three dialysis sessions the last three days - 1.5, then 2.5, then the full 3.5 hours long. (Four hours accounting for setup and breakdown afterward.) Everything went smoothly except for some nausea after the second session. 

I’ve had some pain where the dialysis catheter was placed, but not too bad. The last few days have consisted of a steady routine of taking medications (pills, powders, insulin, IV antibiotic - 7-8 times per day), doing nebulizer treatments (3-4 times per day), seeing doctors, residents, PAs, and my case manager (2-3 times per day), checking my vitals and blood sugars (every 4-6 hrs), and being weighed. My average night of sleep involves being woken up 5-6 times throughout the night. Notice no blood draws since they’ve been able to draw from my picc line.

Currently, I’m still hoping to go home tomorrow after we receive confirmation that I have an outpatient dialysis spot. I never pictured myself having a second go-around with dialysis but I guess I’ll have to get used to it now.

thursday , march 6

Yesterday, after a candid appointment with my kidney transplant doctor - during which he expressed his concern (and the riskiness) about starting dialysis as an outpatient - it felt like the right time to concede to my doctor’s wishes and go into the hospital to start on dialysis.

There were a couple of reasons why: sitting there, my breathing way labored. I have become accustomed to it, along with “pushing through” other symptoms like fatigue, nausea, headache, no appetite, smelling and tasting changes (or things tasting weird/different than they should), and muscle twitches. Trying to be objective, I could see my body is working harder than it might need to - harder than I’d wanted to admit it is.

When I expressed wanting to take some trips and visit family and said I’d struggled making concrete plans or doing anything yet, he reminded me that it’s ok to pause my treatments, and of course, out of town arrangements can be made. He believes that my “brain fog” may be relieved with dialysis and that would allow me more presence of mind for planning and more energy for travel. This happened the last time I was on dialysis though it took a few weeks.

This morning, my dialysis catheter was placed in my upper chest next to my power port (used only for photophoresis). One of my doctors probably has to promise his first born to get me the 7 am slot. The procedure did not go smoothly. I got hot, sweaty, short of breath, was feeling the panic through my veins. Could I remove a blanket? (No.) Get some air under the existing ones? (No.) Sit up a bit? (Nope.) Remove my mask?? (No way.) But they were in the middle of a sterile procedure and assured me it would be over soon. So I used mind control to avoid a full blown anxiety attack. And it ended relatively soon and after a few mins sitting up and cooling off, my breathing began to normalize - but not until my nasal canula oxygen was cranked up and I drank some water. I’ve never had anything like that happen. The anesthesiologist was trying the whole time to get me to sleep, which is funny because never in my life have I asked for less anesthesia. I mean, seriously. 

Today, I also completed my first short session of dialysis. They begin at 90 mins, and go up to 3.5 (I think) over two or three days. No problems with that. It does put me on a discharge timeline of Monday or Tuesday. 

L

I Owe You

 Hello friends,

If you’ve been wondering how I’m doing, you are in good company. Keeping people updated about my health the past year has been challenging: with few exceptions, I’ve kept things (and many details) to myself. Not letting people into my journey (so different from my lung transplant patient life, which I narrated, philosophized, and didn’t hold much back) leads to isolation, depression and loneliness playing in an infinite loop. I now find myself way too behind and too easily exhausted - even my immediate family has difficulty getting updates from me - that I’m back to writing a health update here. 

It’s so hard to communicate how I feel these days. Most days I feel ok-ish. I’m able to run a simple errand or two without much difficulty. Some days I’m incredibly tired and I need to rest or relax after virtually any activity. Some days I’m nauseous, during some of those times I get sick. I am almost never hungry. Some days I’m especially spaced out. Every week something unexpected will come up with my lungs or kidney requiring additional last-minute appointments for labs, scans, and medication or prescription changes. Most days I experience these symptoms to a greater and lesser degree. Here are more details:

1. My lungs have been in chronic rejection (not super treatable) for nearly a year. Thankfully my lung function has stabilized around 50% most likely due to photophoresis treatments I’ve done. This is enough function to not have to think about breathing or getting breathless most of the day.

2. My kidney is in really bad shape. As in, it’s operating at less than 5 percent than it should. This has led to some unpleasant secondary problems, too. My labs have declined steeply for roughly the same time as I’ve had the chronic lung rejection. But Little Nate is hanging in there! I am still producing urine and my fluid retention (from liquid I take in but that my kidney is not able to convert to urine) has not been hugely problematic. (i.e. no trips to the ER with breathing difficulties from fluid in the lungs.) Dialysis is in my very near future.

3. My mental health has been quite poor. My mind tries so hard to make sense of what may ultimately be a non-sensical phenomenon. I’m looking for a road map, and failing that, I want to create one for myself, to know where I’m going, when I’ll arrive and what stops there will be along the way. To know when I’ll be too far gone to be able to enjoy doing life things.  [Insert something profound.]

Like Porky Pig says, that's all for now, folks!

l