i saw my therapist on tuesday

This week has gone by so fast. I told myself, “I’ll write this post as soon as I get home from the clinic.” But I was so tired by the time I got home, I didn’t care about the clinic, my blog, or much anything else. Miss Kitty was happy to take a nap with me. And then I kept thinking, “I’ll write it tomorrow.” And now tomorrow is today, which is Saturday. Where did this week go? Oh yeah. I’ve been writing, organizing, and have been reading Meg Cabot’s 1-800-WHERE-R-YOU series straight through (am on book four today; she’s the one who wrote all those Princess Diary books).

I remember thinking as I walked from the bus stop at Arby’s over to the next street to the clinic that I’d been going to that clinic for over a year now, and I’ve been seeing my particular therapist for right at a year. And soon, I’ll be slogging through the snow again to see her. This year really went quick!

One thing I like about my therapist is that when you go into her office, she has your file scattered all across her desk and a nice list of notes. She always adds to that list, every appointment.

The first thing we talked about, of course, was Thomas and how all that had gone. The last time I had seen her, he’d still been in UK Hospital. I told her how all that had turned out, and she was rightly appalled. Then we talked about finding a support group for parents/relatives of transplant recipients. She really couldn’t find anything on Google, so I said I will ask one of the social workers when Thomas goes back to transplant clinic on Monday. And I made myself a note in the notebook I carry in my bag so I don’t forget. Because I’m like that. I’d literally leave my head behind if it weren’t so firmly attached to my neck.

But I had told her everything I’d been feeling, all the stages and how they’d come along and how I’d handled them. She said she was proud of me – I’d done everything right all by myself! I told her I’d tried to get an emergency appointment with her the week after the horrific news had been delivered but that she’d been booked so solid I couldn’t have gotten edged in had it been a true emergency. She said, “My schedule is ridiculous.” No kidding. But she’s so good at what she does! I threaten now and then to switch over to UK Psychiatry because I don’t really care for her clinic, but at the same time, I don’t want to lose her. She’s fantastic.

So then we discussed my medications and how I’m doing on all of those, and she wrote me a handful of new prescriptions. I’m doing well with the Ritalin. Now and then it still makes me a bit jittery, but I really feel like that depends on how I’ve slept the night before. Sometimes I sleep like a log and others I toss and turn – despite everything I take to knock me out.

And we discussed my personal life and my love life and my writing life and how sales of the anthology are going and NaNoWriMo, etc, etc, etc. We talked about all of the Young Adult literature I’ve collected over the Summer and that I’ve read since then and about my latest project – which I must say is coming along nicely, if I do have to say so myself! And I’ll be going back to see her again on the Monday following Thanksgiving. I’ll have my list of stuff to discuss, and she’ll have hers, and we’ll meet somewhere in the middle just like we always do.

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.

thomas news – thursday

They started the Thymoglobulin yesterday afternoon. His creatinine dropped down to 5.7. But he’s still going to be in there until at least next Friday (the 7th).

I spoke with his medical team today about his unwillingness / lack of desire to take care of himself, and while I was on my way out to come home for a nap, a psychiatrist was on his way in to see him. So we’ll see what happens there.

thomas update – wednesday afternoon

I was there when the doctor came in this afternoon when Thomas’ tests came back. The news, as we expected, wasn’t good.

He’s experiencing two types of rejection – I didn’t retain what they were called, and I tried googling when I got home, but I can’t find them (my Google-fu is weak). So the doctor is giving him an anti-rejection drip along with a steroid. The drip takes eight hours to drip – it has to be injected very slowly. It’s the same drip he had in April 2008. And the doctor said that sometimes when a transplant recipient has had this medication before, the body often builds up antibodies, and the medication won’t work a second time. He said after a couple of days, they’ll take him back down to ultrasound and do another scan and biopsy to see if the medication is doing anything. He also said Thomas’ creatinine had gone up from 6.5 to 7.0 since Monday morning. So it’s steadily increased instead of decreasing. That’s not a good sign by itself. He said if the biopsy comes back negative again, then Thomas will have to go on dialysis. Right now, then, it’s completely up in the air as to when he’ll be getting to go home.

Also, last night when I came in from the hospital, I found packages of his medications in his car – unopened still stapled shut from the pharmacy. I’m taking them with me when we go back to see him here in a few minutes. He’s not going to know I’ve got them, but his medical team will. I mean, we all know he’s not been taking his meds, but here’s hard physical proof that he sat there and lied to his doctor all this time.

So that’s what we know right now. As soon as we know anything else, I’ll post another blog – just be sure to keep a watch out on Twitter and Facebook, too. And thanks for all of your help, prayers, and other support. We appreciate all of you!

I’ve had a lot of people ask if they can help in any way at all. The biggest help right now would be prayers – lots of prayer – and some spare cash. I have Thomas’ car right now – so that means I’ve paid for parking today and will have to every day he’s in the hospital (I found out I can buy a weekly parking pass for unlimited parking/use for $20. I can renew it twice. After that it’s free.). Also, I have to have money to eat on while I’m there (a light lunch ~$8) and money for gas – I know I don’t normally drive, but Kathy said I’m welcome to Thomas’ car (which she bought) while he’s in the hospital. I hate to beg but if anyone is willing to help out with anything, then PayPal me at mari @ mariadkins.com (without the spaces) ~~ and thank you. And, on the sidebar, on the bottom right, there’s a PayPal donations button if that might simplify things for folks.

Gift shop
Located in the hospital lobby on the first floor, the gift shop sells various personal care items, reading materials, candy and gifts. You may also purchase gift baskets, University of Kentucky merchandise, flower arrangements and stuffed toys by phone. Volunteers will deliver the gifts to UK Chandler Hospital, Kentucky Children’s Hospital and Markey Cancer Center patients. The gift shop accepts cash, Visa and MasterCard and can deliver Monday – Friday, 10 a.m. – 4:30 p.m. Call 859-323-5797 for more information.

Hours
Monday – Friday: 10 a.m. to 6 p.m.
Saturday: 10:30 a.m. to 6 p.m.
Sunday: 1 – 5 p.m.

eGreetings delivery
You can send an e-mail greeting to a patient at UK Chandler Hospital, Kentucky Children’s Hospital or Markey Cancer Center. The Volunteer Office delivers eGreetings to patient rooms Monday through Friday.

We cannot forward eGreetings received after the patient has been discharged, so they will be safely discarded. If you have questions about eGreetings delivery, please call the Volunteer Office at 859-323-6023 Monday through Friday, 8 a.m. to 5 p.m.

http://ukhealthcare.uky.edu/patient/ecard.htm (you have to have his full name, his hometown, and his room number)

(email me for his personal information!)

a post about thomas

I really don’t have any more news than what I had earlier today.

Thomas came up from Mt Vernon for his check-up at the transplant clinic at UK hospital. We went in to have his blood drawn, which was a chore. Dude had a hell of a time getting a good stick. This is same dude who stuck him with no problems at all on the 15th. Problem is, he’s so badly dehydrated right now that his veins don’t want to cooperate (just for the record, he peed a whopping one time the entire time I was at the hospital, and that was at 9:30 this morning before his exam). Then we went in to get his vitals before his exam, and he’d lost right at 15# since the 15th. He weighs 161# now. (This makes 35# total he’s lost that we know of for sure.) His creatinine was 6.8 (it was 1.5 on the 15th, and you want it to be right around 1.1), and he was showing a lot of potassium in his blood (that’s one thing I don’t have a number for). Also, the blood work and urine sample didn’t show one trace of any kind of medication that he’s supposed to be taking.

The doctor told him if he lost this kidney due to outright neglect, he won’t get another one and will have to live the rest of his life, however long that may be, taking dialysis several times each week. She said it was his choice to go into the hospital and get his meds and hydration straightened out and have the biopsy done. He said, “It don’t matter. If I lose it, then I’ll just live my life the way I want to, and if I die, I die.” The doctor looked at me and said, “I’m going to go see about that room,” and left.

I’ve had a lot of people ask if they can help in any way at all. The biggest help right now would be prayers – lots of prayer – and some spare cash. I have Thomas’ car right now – so that means I’ve paid for parking today and will have to every day he’s in the hospital ($6 per day is the patient rate). Also, I have to have money to eat on while I’m there (a light lunch ~$8). I hate to beg but if anyone is willing to help out with those two things, then PayPal me at mari @ mariadkins.com (without the spaces) ~~ and thank you.

And that’s all the news I have right now. The biopsy is scheduled for 11am tomorrow (Tuesday).

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Thomas direct line 859-323-1842
UK Chandler Hospital Gift Shop 859-323-5797

Mail is delivered to patients Monday through Friday. Mail received after patients have left the hospital will be forwarded to their home. If you have any concerns about mail delivery, call the volunteer office at 859-323-6023.

Flowers will be delivered directly to patient rooms, except for patients in the intensive care units. Flowers are not allowed in the intensive care units and will be left at the nurses’ station.

Mail an e-mail eGreeting to a friend or loved one currently hospitalized at UK A. B. Chandler Hospital.

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this is the view from his room. you can bet he’s thrilled to be this close to the helipad. ha ha

uk chandler hospital

my augusts are full

Precious memories, how they linger,
How they ever flood my soul;
In the stillness of the midnight,
Precious, sacred scenes unfold.
~ music & lyrics by JBF Wright

My Augusts are full of love.

Around this time nineteen years ago, I met Preston. 1992.

August 14, 2007, I said goodbye to caffeine on a regular, daily basis.

Thomas received his kidney transplant August 20, 2007.

My life is better for all of these things, and for them I’m grateful.

such a close family

Last night around 10pm, I got an e-mail from a cousin I’ve not heard from in pushing eleven years. She sent it via the contact form here at MMG. Just to let me know that I had misspelled “portfolio” in the header. It’s basically the same navmenu I’ve used for the last five or six years. Who knows how long that word had been up there wrong.

I sent a text message to her sister just for kicks to tell her. She texted back saying that she’d called her sister to wish her a happy birthday only to get the “this number has been disconnected” recording.

I turned around to Preston and said, “I have such a close, loving family.” I thought he was going to choke.

received a text from north carolina

Received text message from Thea Jo:

O told me her reading glasses didn’t work. I thought the prescription was wrong and was fixing to call her eye doctor and get a new appointment.

Until she said, “Momma, the hard words I don’t know I still can’t read. I still can’t read. I don’t know what they are with the reading glasses.”

Poor thing said, “Momma, it’s not funny. I still don’t know what those hard words are. Why are you laughing at me?”