Insult to Injury

It’s bad enough when you hear you have a life threatening disease that will eventually end in lung transplant, if you’re lucky. Then you have your transplant  and think, wow, that was hard, but ok, on with the new life. But oh no, now you have a whole new set of problems and issues to deal with. There’s the painfully long recovery where you have to learn to walk and talk all over again. There’s the the oppressive fears. There’s the ungodly amount of medications that no human body should ever possibly be able to consume and yet you do. Then just when you’re kinda getting the hang of all this, wham! another thing you’ve overlooked. All the lovely little side effects of the medications. There’s the hair loss which is in itself just plain not fair. There’s first the weight loss and you think yipppeee, I’ve never been this size before, what a perk. Then after you’ve given all your old clothes away to goodwill and gain a fab new wardrobe for your new supermodel size, you gain it all back. Well your face does anyway. Damn steroids! You look in the mirror and think, who is this person staring back at me? It must be the strangest feeling in the world. It’s  a lot to take in, in such a short amount of time. Six months since we’ve been home from Tucson and we haven’t quite got in that groove yet. Things are much more normalized now, but there are still so many trials and tribulations. For instance, back to those pesky steroids. What a horribly necessary drug. Side effects are great, but it’s doing it’s job of keeping rejection at bay so we’ll take the side effects. We forget some of these side effects however. I don’t know if it’s the wonderful power of denial or just the fact that we have so many other things to concentrate on, but we forget that a major side effect of the steroid has been the onset of diabetes. Now typically that wouldn’t be something you’d forget because that’s a pretty major thing. But when you get on a schedule of eating well and taking your medicine like you’re supposed to, it becomes like everything else….a new normal. But one day last week was anything but normal.

I just dropped Malibu off at school, still in my jammies (don’t judge) and the second I walked in the door my phone rang. It was mom. She could barely speak and managed to say, can you come over I don’t feel well. Zoom. Off I went. She was still in bed when I got there, soaking wet, head to toe, from cold sweats. I knew it was her blood sugar. It had to be dreadfully low. She was fuzzy headed, couldn’t think of words or get her thoughts out. How she dialed my number, I’ll never know. I immediately forced orange juice down her. There wasn’t time to take her blood sugar reading. She needed to eat and wanted soup. I tried to go to the kitchen to make it but she kept getting out of bed. Or trying. She was wobbly, slurring and goofy. If you didn’t know better, you’d think she was drunk. I managed to get her to the living room couch and told her to sit, stay, good girl. I ran and got Scott from next door and said, watch her, make sure she doesn’t fall, I need to call the doctor, she’s going into Orbit, like Margaret used to. (That’s what Margaret, our brittle diabetic aunt, would say when she would start to act funny from low blood sugar). I took her blood sugar at this point thinking the doctor may ask what it is, fully knowing it was too late. But I did it anyway and it was now high. only slightly. Now I wished I had taken the time to see what it was prior. But I was too scared. I didn’t know how much time there was between acting drunk and goofy to coma. Too risky. When I finally got the doctor’s nurse, mom was almost back to normal. Her eyes weren’t quite so large, her speech and senses were returning. What a relief. The nurse said we did everything right and to reduce her insulin. Ok, don’t you need to see her? Doesn’t she need to go to the ER? She was “drunk” two seconds ago and now she’s practically normal, that doesn’t warrant a doctors eyes? Nope! Apparently not. Apparently I’m frickin Nurse Nightingale and did everything that I was supposed to. Gee, somehow that doesn’t make me feel any better since I was flying by the seat of my pants in quiet terror, praying she wouldn’t go into a coma and praying it was her blood sugar and that the organge juice would work magic and that it wasn’t something more serious. Is there anything more serious? Not at that moment. Thank God Scott was there. He talked to her and watched her but having him there was more for my sanity than for mom’s aide. Another brain to troubleshoot with. Another body to look at and say what’s wrong with her? what do I do? Whether the answers were right or wrong, at least they weren’t all my own. Phew! Thanks Scott! Then like waking up out of a deep sleep, mom was back to normal. Conversing, laughing, feeling bad she put us through that. Just like that. So weird. I had a doctor’s appointment for myself that I couldn’t get out of, so when I knew she was ok, I left. I told her I could come back for lunch to make sure she had a properly balanced meal and she said no, she’d be fine. So when I called to check on her after lunch she said she was too exhausted to eat. What did we just talk about?! I made her get right up and make something! She did and she was ok. What a night! At least now she knows the warning signs. No more going into orbit please!

Mom has had a long haul of various illnesses going on since Christmas. Finally she’s starting to feel human again and like she can be productive. So one day after a lab appointment we had a day of pure fun. We went to breakfast, we went shopping and then we went to the movies. She hadn’t done that since long before her transplant. It was such a wonderful day. It was a day like I’ve been dreaming of. Just a day where girls can be girls and not have a care in the world. Utter and complete bliss. There’s my light at the end of the tunnel I’d been waiting for. Later that night when I was reflecting on the day, it dawned on me. She’s come such a tremendously long way. She’s a wonder! She walked everywhere we went. Unaided. Unwobbly. Not only that, but after all the other things we’d done that day, she walked the long distance from the car, to the theater, into the theater, down the long hallway, into the screening room and down that long ramp then up a small flight of stairs!!! Then reversed the process when we were finished. Unbelievable! Such a triumphant day!

Yesterday she was finally able to get back to rehab. I can’t even remember the last time she was there. She’s begining all over again, but that’s ok. She goes slow and will get there. She felt good. She even slept last night because her body was worn out from activity. Yay! But this weeks at rehab will be short lived. This week we finally got her in to the eye doctor because she’s been saying she can’t see a darn thing, she needs new glasses. Well, glasses are not her problem. She has cataracts. Both eyes. She couldn’t even read the big, giant letters at the top of the chart! The doctor asked her, are you driving? She said no, He said, oh thank god. Funny man. The lung transplant did a number on her eyes. Being on the ventilator for so long was a contributing factor and oh yeah, can you guess what else? Yup. Steroids. Imagine that.  So, next week she will have surgery on her left eye to correct the cataract. They only do one eye at a time. Bummer in a way. Why not just get it overwith all at once. It’s not like she can see now anyway. But one it is. Minor set back for rehab, but that’s ok. She’s looking forward to seeing clearly again. Go figure.