thomas news – thursday october 20

The current news on Thomas isn’t good, but we new it wasn’t going to be. His clinic appointment didn’t go well Monday, and Thomas didn’t really seem to care. It’s almost like he’s built himself an alternate reality to live in – which isn’t good. The doctor said his creatinine had actually dropped from 3.1, which is where it was when he left the hospital, to 2.3. But the doctor also said that it could very well be that low because of the amount and strength of the Prednisone he was on in the hospital. He said this because no trace of medications came back in Thomas’ blood or urine. Again. Even though Thomas sat right there in the clinic and told anybody who’d listen that he’s not drinking alcohol, he’s eating right, and he’s taking all of his medications like he’s supposed to. They’re going to see him every other week for now; the doctor alluded that if Thomas isn’t going to take care of himself, then there’s no point in him coming up here once a week for a clinic visit.

Everyone keeps asking me how I’m doing. I just feel like I’ve been on an endless roller coaster ride – up, down, around, over, through. I was angry at first, when the doctor gave us the news of Thomas’ life expectancy that Monday morning while he was still in the hospital. See, this is why receiving a living transplant is so important. When someone receives a cadaveric transplant, that recipient’s life expectancy is automatically cut in half. Depending on the age of a living donor, a living transplant can last the recipient a full lifetime. You all know I wanted to give Thomas one of my kidneys and was turned down after all the testing because I’m not insured. Because of the way Thomas has treated himself over the last year, with all the news that’s come down the pike over the last month, I’ve been glad he didn’t get one of my kidneys – and then I feel horrible for feeling like that, for thinking such a thing. Thomas received a cadaveric transplant thanks to my lack of insurance. The young man who died and whose family donated everything that was possible to donate saved a bunch of children and blessed a lot of families. He was, if I’m remembering right, twenty-three years old when he died. We know he was in near-perfect health.

I saw my therapist on Friday the 1st, and we discussed my ADD/ADHD issues. With the Prozac and the other antidepressants calming me out, the ADD/ADHD was running loose and wild and making me do stupid things. Seriously. When I don’t stick to a pat routine, I do stupid shit. Like the morning I jumped the gun on putting a pantyliner in my panties – and got the process mixed up with putting on my socks and stuck the pantyliner on the bottom of my left foot. And, the way my brain works, I sat there staring at the bottom of my foot for several minutes trying to figure out what I’d done wrong. I told my therapist I have moments when I feel spastic but don’t allow myself to go spastic – I try to keep myself in control of myself, even when I’m alone. There’s other stuff I’ve done, too, physical and vocal, and we discussed all that, too. We were almost rolling in the floor laughing by the time I finished, and she made up her mind to put me on the lowest dose of Ritalin. 10mg twice a day. The first few days, I was a bit jittery, but nothing horrible, and I waded through it. And now I’m just fine on it. I tell people, “I can almost brain proper.” (Being able to make sense of the noise in my head goes a long way!)

The Monday we got all this wonderful news (the 3rd) – that Thomas’ expected lifespan had been cut down even further because he’s not been taking care of himself, that his creatinine level was probably permanently stuck at 3.1 (never come down but possibly go further up) for what time he does have left – I was angry, like I said before. Just angry. When I left the hospital, I stopped at the arboretum to take a walk. I needed to be outside, moving, and the weather that day was gorgeous. The kind of weather I wish we could have in Kentucky year-round. If I’d gone straight home, I think I would have just sat here and exploded. I had to get my head put back on right before I went any further. I called the therapy clinic to see if I could get an appointment with my therapist, but she was booked solid through to my next appointment (the 27th), so I decided to tough it out and wait, see what conclusions I could come to on my own. Besides, it wasn’t an emergency situation – all I wanted and needed was someone to look at me and tell me that what I was feeling was normal. it’s hard for that clinic to do a work in with me because I have to have at least two hours’ notice, because I have to take the bus over there. They can’t call me at 9 and tell me they have an opening at 9:30 and can I be there. By the next morning, I’d figured out I had no idea who or what I was angry at, and I told myself it was stupid to be angry without someone or something to be angry at.

I guess you could say I ‘simmered’ over the next two weeks. I don’t really know how else to describe it. I just know that I had to calm myself down and took it in stages. And I scrubbed our apartment. Ceiling to floor. One cobweb survived, and it’s still there because I never can remember to get it down when I’m up. The apartment got so scrubbed that there’s not much I’ve had to do to it this week, but I’ve done it all anyway. It’s driven Miss Kitty even further nuts; she can’t handle anything around her changing much at all. Through it all, I keep hearing Thomas saying it’s his life to live how he wants to live it and he’s going to do what he wants to do and if he lives, he lives and if he dies, he dies. Sticking your fingers in your ears and screaming, “LA LA LA LA LA!” doesn’t work, no matter how much any of us ever want it to or pretend it does. Closing your eyes and clamping your hands over them and screaming, “Not real!” over and over doesn’t work, either.

This past Monday, the 17th, Thomas sat right there in the transplant clinic and told anybody who would listen to him that he’d been taking care of himself right. That he’d been taking all of his medications on schedule, as scheduled, that he’d been eating right and otherwise taking care of himself like he was supposed to. He said he hadn’t been drinking and hadn’t been partying, etc and so forth. He said all this before and after he’d gotten his blood drawn, peed in a cup, had been weighed, gotten his temperature taken, had his blood pressure checked. His weight hadn’t changed, his temperature was normal, and his blood pressure was near usual – through the roof. His doctor asked him, “Have you been taking your medicines?” And he looked his doctor right in the face and said, “Yeah, I mean, no. I mean, I wasn’t before, but I am now. Every day, just like I’m supposed to,” and smiled that smile he’s smiled since he learned how to smile – the smile he uses to slay people with. The doctor looked at me as if I could confirm or deny, and all I could do was roll my eyes and shrug my shoulders. He told Thomas to come back in two weeks.

Then Kathy called while I was out seeing my eye doctor on Tuesday, and I didn’t get her voicemail until I got home – although I got her text messages on my way to Kentucky Clinic. Problem is, on the way home, my eyes were dilated, and I couldn’t see to use my phone in any way. Preston called me at one point, and I finagled around until I was able to answer it. Honestly, I’m proud of myself for navigating the buses and finding my way back to our apartment. For the record, I’m still blind and don’t have to go back again until April, probably to find out the same thing again. My eye doctor upped my Elavil prescription from 25mg to 50mg to see if that would help calm or settle the whooshing and throbbing noises in my head; it’s supposed to help me sleep, too; if it does help with the sleep bit, then maybe I can drop the Trazadone. I tried dropping the Trazadone when I first started on the Elavil in the spring, but my mind kept going at mach 10, so it was obvious I needed it to wind down enough to sleep.

So Kathy tells me when I talk to her that the female transplant doctor had called her, and Thomas’ creatinine level was down to 2.3, after all of us thinking it would never drop below 3 again in his lifetime. But she said it was probably that low due to the amount and the timing of the Prednisone they had given him in the hospital. Also, his blood and urine didn’t show any traces whatsoever of any medications. Again. That along with his unwillingness to take care of himself spurred the decision to see him once every other week for now. He goes back on Halloween. Kathy also said that Thomas has been going around telling everyone he’s perfectly healthy and can do whatever he wants whenever he wants and can drink all the alcohol he wants. I’d like to know when the doctor told him that because he and Dr Gedaly were never alone together this past Monday. If this keeps up, he’ll be put on dialysis. He’s not going to like being forced to sit and lay still for four hours a day, three days every week. He’s already told me it sounds like hell. I still am of the opinion that he should have toured the children’s dialysis ward at Cincinnati Children’s before his transplant; Jane was wrong in turning that down. Jane was wrong about a lot of things, but that’s a whole other blog post, or twelve.

Now I feel like we’ve all just come back to where we were in July 2007, when Thomas was so sick and every time the phone rang I had a panic attack because I knew there would be bad news on the other end of the line and I had nightmares about funerals. And at the end of last week, I’d come to some kind of strange acceptance to the situation, to Thomas’ attitude. I’m still struggling to figure out where the whole, “If I’m going to die, I’m going to die my way” attitude has come from. But it’s an attitude I have, too, when I sat down and really thought about it. I’ve said for years that if I’m ever in the hospital and am told I won’t ever be going back home, then I’m chowing down on a shrimp platter. I also have a living will; I think that’s important. I also think we all have a right to go out the way we want to. And maybe that’s where Thomas’ head is. I just don’t know.

Here’s the thing. Thomas may have the mentality of someone somewhere between nine and fourteen years old. But he can look at you and tell you exactly what medications he’s supposed to take, what dosage, what quantity, and how often. He can tell you exactly what he’s supposed to do and not do to take care of himself. Yet right now he’s just refusing to do any of it. I’ve long said that he needs a full-time, around the clock caregiver (he doesn’t want one; he’s refused one; he’s refused part time help; he’s refused any help). But apparently even an around the clock caregiver doesn’t work, because he’s learned how to be sneaky. I can’t explain how I felt that afternoon when I dumped all his medication bottles on my bed to sort through them and realized that some of them went all the way back to December of last year. He was still here with me then – he didn’t move out until the end of March. There weren’t any bottles for the month of April, and I think I remember Kathy saying she can only figure that he took his meds that month or that he had so many that she just never ordered any for April. But he had almost full kits for the end of December 2010 through the end of September 2011 (minus April). I wanted to cry. I was angry. I was pissed. I was sick to my stomach. I mean, here he had lived in my apartment and had gone into the kitchen twice every day to take his medications. It took me a while to figure out that he was going into the kitchen, rattling around in the cabinet, and getting a drink of water – nothing else. Apparently he’d done the same thing at Kathy’s when he lived there (end of March through the end of June).

The day he was admitted into the hospital, he told the doctor, before she went to get his room, “It’s my life, and I’m going to live if the way I want to, and if I live, I live, and if I die, I die.” And then he sat there on the bed after he was admitted and just blurted out, “I don’t matter, anyway. Everybody loves Tayler more than they do me. He always gets more than I do. He always has. Nobody loves me.” Out of thin air. No preamble. He just said it. And I couldn’t do anything but just sit there and listen. Every now and then he’d burst out with more on the same theme. And he didn’t care if he was in the room alone, or if I was in there, or if a nurse or three were in there, or what. He just kept right on going. Nobody dared tell him he was over 18 and could sign himself out and leave if he really wanted to. As the day wore on, though, I did tell him that if he was going to continue to treat me like shit, that I could leave and I didn’t have to go back. In fact, that’s something I found myself repeating several times through the course of his hospital stay. And I didn’t just say it, either. If he started acting like a jerk and treating me like shit, I’d at least get up and to out into the hall or out to the waiting room. Sometimes I’d ride the elevator down to the lobby and back to the eighth floor. One afternoon Kathy and I both were there when he started his crap, and I said my bit and got to my feet. He’d changed his attitude by the time I got to the door.

But it’s like he’s got it into his head that he doesn’t have anything to live for, that he never has, and that if he’s going to die no matter what he does, then what’s the point of doing anything but living what life he does have. Like I said, I can kind of understand the attitude. I really can. If someone told me my life was being cut short, I’d do what I could to make the most of what I had left. And I feel like that’s what he’s doing. Tayler says, “He’s being a dumb ass,” and in ways, yes, Thomas is. At the same time, Thomas is in his own mind and in his own way doing what he thinks is the best thing for him.

Kathy’s found several alcohol purchases on his checking account. But like I told her, if anybody asks him about them, he’ll just say that he was buying for “a friend”. His 22nd birthday is coming up on the 28th, and he told me he and his friends have a big party planned. He said, “It’s nothing. Just pop and cake.” And I just bit the inside of my mouth.

So I guess we’ll see what we find out at his next transplant clinic appointment. Probably just more of the same. That’s what I expect. And from here, I expect for things to get nothing but worse.