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