Perspective
I’m feeling stronger, somewhat more stable. My liver and kidney numbers are in the normal range for the second week in a row. My red blood cell count is still below normal, but not too bad, and same with my hemoglobin. My white blood cell count is very low at the moment, around 2.0 (normal range is 4.0-10.9). My coordinator called me today and told me not to go anywhere with people without a mask on, which is a step in the wrong direction from what I’ve heard before. Knock on wood, but so far I don’t think I’ve gotten sick. It can be hard to tell—some days I just feel bad or really tired, like a cold is coming on. It’s usually just exhaustion from doing normal things around the house the day before. My hope is they’ll feel comfortable letting me have some more immune protection soon.
Last week my doctor changed my Prograf to Envarsus, a slow-release tacrolimus. She also changed my CellCept to Myfortic. They seem to be working well, though I’m guessing the Myfortic dose will go down after the doctor reviews my numbers tomorrow. It’s very high right now, which is why my white cell count is so low.
I’m starting to gain some strength. I actually want and am sort of able to do some things at the house that require physical activity, like moving things, organizing, and even a few things in the garden (gloved and masked for safety). Because I’ve spent the last year and a half being pretty sedentary—mostly laying in bed—I don’t have a lot of muscle. I’m currently up to 154 lbs, which is a huge improvement over 140, which was my weight around the time of the kidney transplant three months ago. The problem is that I keep hurting myself. I pulled a leg muscle last week doing normal things, and am just now able to walk a little more normally. It hurt so much I told my nephrologist about it. I felt like an idiot bringing it up, but it was something new, and I didn’t know if it was related to my surgeries.
I’ve started going for walks in the evening when I feel up to it. Last night I walked up the street about a quarter mile. My legs burned, but it was a good feeling. As much as I like being inside my house because it’s safe, clean, and no one is going to bother me in here, I really like getting outside if I feel safe. Before my kidney transplant I was a walking zombie, and I felt so bad that going out in public felt like being a target at a shooting range. My head was always spinning, my body was wrecked, and people expected me to get out of their way. Besides being skinny and pale, I probably didn’t look too bad off. Cars in parking lots were my biggest fear—I was nearly run over a few times just because I was so slow. One time I slammed a package in a cardboard box I was carrying against an SUV that was backing up into me so hard that the driver thought she had hit me. I explained to her that I was afraid she was going to hit me, and went on my way.
We recently took out the lawn in our backyard and put in native plants that don’t require as much water, and will flower and benefit the area, instead of just wasting water on a lawn we didn’t use anyway. Now we have lavender, sage, milkweed, and lots of other plants that flower and are already bringing in bees and birds. We had a lot of rain a few weeks ago and I decided to see if I could grow poppies in between some of the new, bigger plants. I figured only a few, if any, would sprout, but now there are so many plants. My first flower is about to open. And every day I watch hummingbirds get nectar from the flowers on the sage, and bees in the lavender. It makes me happy we were able to do that. It’s not a garden that will be published in any magazines, and it’s not fully put together yet, with kind of rows of plants, some of which may not work out, but I’m happy with it. I even threw some seeds in the raised bed I built several years ago but haven’t used in almost as many. I already have corn, radishes, and carrots sprouting.
There are times when I catch myself staring at a bird through the window or a big gust of wind blowing the top branches of the eucalyptus trees across the street. Normal things blow my mind sometimes. Blue Origin’s first all-women spaceflight was a week ago, with Katy Perry and Gayle King, among others, who spent a few minutes orbiting the earth. I’ve seen several well-known people, some of whom you’d think wouldn’t be hyperbolic, say that the ride was life-changing. The three minutes in space, with zero gravity, looking back at our planet.
I used to laugh at their post-flight interviews on the news sometimes—it’s not a lot of time up there, you’re just barely in space at 63 miles up, and they often come back crying and sounding like they’ve been to a revival. I used to think it was just for show for Jeff Bezos, but I’m not so sure anymore. Gayle King made it sound extraordinary, and Bill Shatner rambled for a long time and didn’t make much sense, but you could understand what he was feeling. It seems kind of silly from the outside, but it really seems to effect the people who go. I imagine they look at things from their ordinary lives differently after having done that, though I wonder if it wears off quickly like it usually does—and always has for me, before now.
As much as I make progress in my recovery, I feel a lot of physical limits still, and I wonder how best to overcome them. For now, walking seems like the most sensible way to get strength and movement—and it’s about as much as I can do. Two thoughts creeps into my mind every once in a while:
1. How long until I get better and can do normal things again?
2. How long can I expect to be in good and stable health in my life (assuming I get there)?
I don’t want to bother the doctors with either question now—I’ve asked both in different ways to different doctors, and I can tell there aren’t answers they can provide—and I think the only answer is in the living of it.
I think that’s where being in the present, now, right now, is the best place to be. I can’t plan for the future, and I can’t necessarily count on another day. I put appointments and things I’m planning to do in the future in my calendar, but I no longer obsess over what’s coming up and when and what do I need to do to prepare. It’s there with a reminder, and it’ll let me know.
I’m not expecting to die anytime soon—I actually think I’m finally getting better—but little things that feel off could lead to something really bad. A few weeks ago a blood test led to a week in the hospital, and it was a really tough week, and has been tough since. I have a few weeks’ supply of the anti-rejection medication that keeps my new organs from being attacked by my body. I’ve always been pretty athletic—for a long time I was I’m 6’2, 160-180 lbs, and I could pick up a racket or put on some skis on anytime and be competitive. I felt very physically able.
For the first time I feel surprisingly weak physically, and still a little slow mentally. I was walking through a parking garage earlier today, and was thinking that I would be perfect to rob—I couldn’t do anything physically to stop the person. I’m lucky if I can get a few wide steps into a walk.
Despite being slow, and not being what I was before I wasn’t recovering from all of this, I am alive, and I am walking around and driving and not jaundiced and dying anymore, and I’m not going to dialysis, and many other things. I am hoping that tomorrow is a little better than today. If it’s not, I’ll deal with it. I’ll take some Tylenol, or wait until my stomach stops cramping, or rest in bed a little longer in the morning if I don’t feel well. I’m okay with that.