I spent the first week at home wandering around, pining to pick up where I left off - painting the trim in the sun room, working on a songs for one of the many projects I'd mapped out, cooking through my endless list of recipes and ideas I wanted to experiment with, starting the sequel to The Ghost of Maddingbrew. The spirit was willing but the flesh was weak. I was very wobbly on my legs and couldn't get around much without help, or at least someone standing beside me in case I started to tilt. I was dizzy most of the time, and so easily fatigued that I couldn't make plans very far ahead of time. We were able to meet some friends to eat, spend an evening with other friends. We were all finally able to go to the Game Table Cafe together - it had become a much anticipated destination, about an hour from our house. Just a coffeehouse, really, but stocked with hundreds of geeky board games like Settlers of Catan, Dice City, Carkasonne, and so many others we were anxious to check out. I had to wear gloves (because who knows where the last person's hands had been while touching the cards and pieces, right?) and a mask, since we were seated in close proximity to other customers. I was able to buy a drumset via Craigslist for what should have been labeled un-armed robbery. I played a little here and there, but lacking stamina, couldn't last long. The sensation of sticks in my hands, the reverberation of the drumheads in my wrists and forearms, the struggle to tame the bass drum pedal...all so familiar, yet such a distant memory. I played along to both Jellyfish albums and a few King's X discs, and of course, some Beatles tunes - I'd never played any of these on the drums because the albums were either released after my diagnosis in the late 90's, or because I'd not discovered them before then (The Beatles in particular). It felt like having a missing limb re-attached. I spent lots of time just sitting on the couch or the porch, reading and snoozing, and Brennan wasn't usually very far away. He stayed right by me wherever I was for the first week or so.
The flip side of all this (which was glorious) was that I was grumpy and snappy a lot. Everyone warned me about the effects of the Prograff and steroids (Prednisone). I was on very high doses of both, and along with the fatigue and some of the awkwardness of re-acclimating to life at home, I probably wasn't much fun to be around. The medications have a tendency to make me feel over-stimulated. I've learned the warning signs, but at first, it seemed like I'd be fine one minute and extremely over-stimulated the next. Every little sound and movement became a distraction that warranted my full-attention - I couldn't keep up with conversations, and became quickly frustrated when expected to. I couldn't remember much of anything. Weekly biopsies caused a lot of anxiety because I was so beat up - the thought of getting stuck with needles 4-5 times just to get an IV line going was exhausting. The skin on my neck around the cath site was so battered and torn up from tape and constant punctures that the biopsies were far more painful during and after than all the swans caths over the last few years. And waiting for the results was (and still is) a nail-biter for the 24 hours it takes to get results.
And of course, I got bad news early on. I'd been home about three weeks, had a few good biopsies, then one came back showing rejection. It was mild, but nonetheless, I had to be re-admitted for a few days for IV meds. 1000mg of IV prednisone for three days in a row. Wasn't I already having enough trouble with this stuff? My favorite nurse, Natalie, was there to admit me and it's always a great comfort to see her when I'm there. Inevitably, it was nearly impossible to place an IV to administer the Prednisone or find a place to draw blood. This results in attempts up and down my arms, all around my wrists and on the back of my hands. At one point, nurses were looking for places in my legs and feet to get blood. I went home, hoping the meds worked, and with a few tweaks to my home medication regimen.
Unfortunately, two weeks later, my biopsy again showed rejection. Back to the hospital for five days to have stronger anti-rejection meds administered. By this time, I'd caught a cold and was already miserable, but required repeated blasts of ATGAM to stop the rejection. More poking around with needles, until the nurses gave up. Corrina, the PICC nurse that took care of my line while I lived there earlier this year, was called in to place a line, but after more poking around with larger needles, couldn't find anything either. Eventually one of the intensivists that oversaw my care while on the TAH ended up putting a mid-line in my neck. Once it was in, I got hit with a mix of Prednisone, Tylenol Codeine, and Benydryl as a "pre-treatment" to the ATGAM. Needless to say, I was pretty zoned out, which must have been amusing to my visitors and the nurses. I scored 17 needle sticks in 24 hours that visit, my personal best. A closer look at my biopsy during my stay revealed that the rejection was actually lessened from the previous biopsy, meaning it was probably just taking longer to reverse than expected - but I was moving in the right direction.
I've been back a third time because my sinusitis had continued to worsen, and I was having migraines. The infection had been going for four weeks at that point, but we were all concerned that the migraine was due to a medication overload, or something more nefarious. Labs showed nothing, but to rule out meningitis (a major life/death concern for transplant patients) I had to undergo a lumbar puncture so they could analyze the fluid in my spinal chord. This is essentially what's known as a "spinal tap." You have to be awake, you have to be still (so they don't paralyze you), and it hurts like some level of hell that Dante wasn't sick enough to include in descriptions. I wish there were a more elegant way to describe someone sticking a very big, long needle into your spine via your lower back, but there isn't. My pain sensors are heightened due to the Prograff I take daily, so that just added to the fun. I'm told that I shouldn't still be sore from this, but the muscles in my lower back ache like crazy from the afternoon until I go to bed, and they're stiff when I wake up. Some of this is because I'm slowly weaning off of the Prednisone, but I suspect it's just taking a long time to heal, like everything else, due to my suppressed immune system.
In between all of this misery, I've been able to taste normal life a bit. We've been on some outings as a family. I'm finally driving and able to take the boys to their clubs and activities, play with the dogs a bit, start recording some demos of songs that I've been holding in my head since I was admitted last January. Lots of board games, My Little Pony and Big Bang Theory marathons, a little D&D, and lots of small paint jobs and catching up on home repairs. Rich and I plan on going to the League of Legends semi-finals at Madison Square Garden later this month.
All this to say - the whole thing is an uphill roller coaster. There are mornings when I feel like I can take on the world, but feel like I need to go to the ER by noon. I feel in control of my emotions and suddenly flare up or break down over the smallest thing. I'm not using Facebook much, nor do I like communicating on the phone - both make me irritable and impatient, and I can't explain why, really. Crowds don't seem to bother me, but I get confused and panicky if there's a lot of noise or people taking at the same time. This will all even out over time, but right now, I feel like I'm walking on a very thin tight-rope, physically, psychologically, and emotionally. I've taken a lot of medications in the last 17 years, but the side-effects were always physical; nausea, headaches, fatigue, general pain. I learned how to handle that stuff and carry on without people being able to tell. These meds are a whole different thing. There's the physical side-effects to deal with, but they're more intense than before. The emotional side-effects are almost impossible to predict, even harder to control. I'm trying to be more alert and remove myself from a situation when it's stressing me out or causing panic. But the over stimulation happens so quickly, I find myself lashing out or grumbling before I even realize I'm doing it. And even then, it's difficult to just stop or move on. I've always felt like I was beating the meds, and I wouldn't let them get the best of me. Against the steroids and anti-rejection meds, there's really no winning. Those who have gone before advise me to do the best I can each day, and then let it go - try it again tomorrow. I'm glad my family is patient with me because I couldn't deal with someone like me right now - I'd be snarky and defensive all the time. But they're right there with me, as they have been through the whole ordeal. It's getting better - slower than I'd like. The aches and pains as I decrease the steroids are more distracting than I'd like. I'm less in control of my emotions than I'd like. But this is just as much part of the journey as the waiting was. There's no going back, so I've got to eat what's on my plate at this stage, and try to enjoy life in between as much as I can, and try to trust it will get better, even though there are days when it feels like I'm worse off than I was before. Having a strong support system of family and friends is invaluable in this sense - I don't see how anyone could do this alone.
