Me posing for a photo with Finley. This is my swollen steroid face. Thankfully, it is starting to go down.
Rejection – it’s a word I’m hard pressed to find a good context for – and in transplant land, it certainly isn’t a good thing, but perhaps it’s a constant companion. Once you get an organ that you weren’t born with, your body is intent on seeing this life-saving gift as a foreign invader it must destroy. It’s a battle that is constantly going on inside you, and it’s a battle you and your doctors constantly fight. The only good news is medicine has created a number of weapons to hold rejection at bay.
In June I had my first setback because of acute cellular rejection. They tell me it’s the good kind of rejection to have because it is treatable with an onslaught of steroids and medication adjustments. Oh goodie!
It was amazing how quickly it came on, and really brought home how important it is to do those vitals and spirometry every day. When I thought I might be in trouble, I had my diary of vitals to show the doctors in a numeric way something was up. It wasn’t just a feeling I had. I had evidence. Not that I couldn’t tell something was up mind you. I went from being able to walk a mile and a half without oxygen, even climb a hill, to hovering at an oxygen saturation of 90 with barely any movement at all. It got a little worse each day over a three-day period. The morning of my transplant clinic appointment I desaturated to 86 just putting my clothes on. I showed up at transplant clinic with an oxygen tank because I was worried about making it from the front door of the hospital to the clinic.
I’ve been fighting infections since the new lung hit my chest cavity. It came with some bacterial hitchhikers and we’ve been working to evict them ever since. So, our first thought was that the last remaining infection was somehow getting the upper hand. I was admitted to Fairfax Inova Hospital for what turned out to be a week stay.
Lots and lots of IV antibiotics were ordered and given for the first few days. A bronchoscopy was ordered to have a look around for any pockets of stubborn infection or other problems. Before the bronchoscopy, I seemed to be making a little progress with how far I could walk without oxygen. But, during this test they flushed a lot of liquid into my lungs so they could suck it out, put it in petri dishes, and wait to see what interesting junk would grow. I think that knocked me back a few days.
Happily, however, the infection side of things looked great – maybe the best it has looked since my transplant. Yippee!! The downside, however, was that meant the most probable cause of the trouble was rejection. The R word. The big R. I don’t care if they say this is the treatable kind of rejection, or that it’s the rejection we are fighting every day anyway…I just can’t get okay with the R- word.
Next came the high dose steroids and all their side effects. I probably didn’t notice the side effects as much right after my transplant because so much was happening with my body. This time, however, I experienced the crazy appetite, being unable to sleep, my body puffing up like a stuffed animal – just to name few. This time, after a few months of starting to feel normal again, I noticed.
It seems the steroids did the trick, so it’s worth it.
I am amazed by how much this recent setback really did kick my butt, to be quite frank. While in the hospital I was so worried about losing ground. I walked around the unit (with oxygen if I needed it). I paced my room. I looked for things about the right weight to try to keep my arms at least as strong as they were before I was admitted.
When I got home, however, even though my oxygen saturations were better, what I could physically do was not. My feet were numb from one of my rejection medications being increased. They are also constantly frozen. My hands shake worse because of the medication. My body was, and is, retaining water, even though lasix makes me pee about every five minutes. My legs looked like the legs of a piano. It was hard to feel real stable on them.
Mother Nature wasn’t helping either. The thing I needed to do most was get out and walk. So, I started getting up super early so I could get out and walk before the heat and the humidity kicked in for the day. Getting up early wasn’t as hard as it usually is (I’m not a morning person) because I wasn’t sleeping anyway. Still, this just doesn’t seem like enough to get back to where I was.
After a few weeks at home my legs started to do strange things. Of course they are weaker than they were, but this was different. One day they’d be relatively okay, and the next it was as if they were made of melting butter. It wasn’t that they were tired from working hard, or that I was getting that exercise burn. It was more like my legs just decided they didn’t want to play anymore.
While my spirometry was back to where it was pre-admission, it wasn’t moving out of the range I’d been stuck in for two months now. That is so long without any improvement, it was getting to be a cause of concern for everyone – not just me the patient with no patience.
This Friday, however, I had my first follow up appointment since being in the hospital. I laid this all out for my doctor thinking he’d be concerned and maybe want to move to doing the dreaded biopsies. To my surprise and great relief, he explained all of this was to be expected. The weird leg thing, he says, is a possible side effect after you’ve had a large pulse of high dose steroids. Apparently it can happen weeks after the doses. Thank God! He wasn’t concerned about the other things as he expects them to all improve. They are mostly a result of all the drugs I got in the hospital, and all the medication changes I had when I went home. Best of all, I’ve been referred for more pulmonary rehab. I’m thrilled. When it feels like 105 outside, it is truly hard to get enough meaningful exercise to truly build myself back up in my tiny apartment. I do try, but it isn’t hacking it. Right now, as my friend Mary Ann says, I’m like a hot house flower. In the good old days you just sweated through hot days. Now, walking in the heat makes me dehydrate rapidly. I get to feeling sick to my stomach and faint. Just little o’l delicate me you know…grin. Because of my suppressed immune system the docs vetoed going to a regular gym. So, hopefully my insurance will approve this and I can get enough sessions to at least get my legs more stable again so I feel a little safer doing this on my own.