mari’s so behind it’s … shameful, really

I know. I know. I said months ago (and then months before that) I was going to start blogging more regularly. We all see how well that turned out. Here’s the thing. There’s just not been that much going on, not anything that would make a blog post, anyway. I use Twitter now for the “this is what I’m doing right now” stuff – instead of using my blog for those one and two sentence updates I used to make throughout the day the first few years of my blog’s life. Also, I use check-ins at GetGlue for a lot of stuff, too. For example, I just checked-in to “pot pie” because that’s what I’ve got in the oven for our supper. I don’t want to let this blog go, though. It’s been part of my life since 2002, and there’s so much stored here (even if I did accidentally dump all the pictures a couple of years ago – whoops!). Yeah, I could archive it all on my hard drive, but that just doesn’t sound appealing.

So, here I sit. Trying to figure out where to start on catching up since … Christmas? New Year’s? My birthday? The funny part about all of this? Starting sometime in October, I created a tab in OneNote labeled “Blog Topics”. I have subtopics: brainstorming, love, memories, mental health, pagan, ‘women in fiction’, and writing. We won’t discuss the number of topics and ideas listed within each. I mean, I probably have enough material in there to work from for at least three months of intermittent blogging – like every third or fourth day kind of intermittent – especially with the memories stuffs. I probably should be shot for having all of these things and just sitting here and not doing one damned thing with them.

It’s a writing problem.

It’s a writer’s problem.

It’s so simple to create all these lists and jot down thoughts and ideas – and then just leave them and never once think about coming back to flesh them out. Especially with me. The whole ADHD (lately I’ve been joking and calling it ADDH – because CDO insists I keep everything orderly) thing makes me scattered. I have to keep telling myself over and over, “Focus on one thing at a time! One thing at a time! Easy now! Easy!” And that’s harder than it sounds. See, if something isn’t right in my face where I can’t see it or glance at it at least on occasion, I forget about it until I run into it again, be that a day or two or a decade or two later. This is the curse of having distractibility ADHD. (just look at this paragraph!)

Thing is, I don’t work at a desk; I work at our kitchen table. I’d have a garbage dump of a mess if I left everything out where I could see it all of the time – then I’d get cranky, irritable, and whiny because everything was a mess! What I end up with, then, is a pile of different notebooks containing this, that, and something else, pencils or ink pens clipped to each, and my cellphone stacked on top of that. I keep Outlook open all day because I need the reminder alarms, but I fail at keeping OneNote open all day – and that’s where my daily task list lives (but I tell myself I keep a duplicate in this one notebook …).

And see, I sat down here this morning with the intent of making one of those what I call “catchup posts”. I even pre-tagged it so I could look at the tags list and, with some hope and forethought, not leave anything out. But no. I’ve sat here doing everything but writing a blog post. I think I’m going to save the other half for tomorrow! If I don’t show back up tomorrow, just jab me and make me do it!

thomas went to clinic thursday

Sorry it’s taken me so long to write this promised blog post. Honestly? I just keep putting it off because I don’t want to deal with it, but I know a lot of you are waiting on the latest news, so I can’t just sit here with the notes in my notebook on the shelf.

When I got there, Thomas and Jane were talking about Thomas’ car insurance, and Thomas mentioned how I’d canceled his insurance coverage when he sold his Monte Carlo this time last year. Then Jane said that he’d had full coverage insurance when he lived with her, and he said, “Yeah and Mom bumped it down to liability only.” I said, “Because you couldn’t afford it Thomas, and gods know we couldn’t afford to pay it for you. Nobody said I had to pay your bills for you when you moved in with me.” Thomas turned around to Jane and said, “Well, I think I could have afforded to keep full coverage.” And Jane said, “Yeah, so do I.” So I said, “Well, if all y’all are going to do is bitch at me and the things I’ve done, then I can just get up and leave.” They both shut their mouths.

Thomas weighed 164#, despite all his bitching that he’s not been having proper access to the food he wants/needs. Some of that weight very well could be the increased dosage of Prednisone he’s been on, though, and not what he’s been eating. His blood pressure was sky-high, and as I was writing the numbers down (164/100), I kept thinking, “Gods, and we all think my blood pressure is high!” Then I started watching him really close, as if I could prevent him from having a stroke. In the exam room, we went through the usual medications list, except Thomas didn’t tell anybody he hadn’t been taking his Rapamune and Cellcept (I knew he hadn’t because Kathy had told me either in text or over the phone). He hasn’t been taking it because David hasn’t been paying to copay and picking it up – although David himself said later into the appointment that the pharmacy wouldn’t dispense the generic medications because Dr Waid had written ‘Rapamune’ and ‘Cellcept’ on the prescriptions. This is a complete load of bullshit; but I didn’t say anything and just kept to my notekeeping.

When Dr Waid came into the exam room, he asked Thomas a long string of questions, including, “How does food taste?” To which Thomas replied, laughing, “Good.” He rapid-fired the questions so fast that that one was the only one I actually could write down. That and Thomas’ response was so awesome; he and I had looked at each other and cracked up. But Dr Waid asked stuff like how he was feeling, if things looked funny, if he was able to eat okay, if he felt weak anywhere or any way at all, if he was in any pain, stuff like that. He said, “The reason I’m asking you all these questions is because your kidney is shot at this point, and at the point your health is right now, you should be feeling pretty shitty.” Thomas swore he was feeling “just fine”, but he always does. Even when he had that horrific rejection episode in April 2008 and almost died, he swore he felt “just fine” and continued to eat like a complete pig.

Dr Waid checked Thomas’ blood pressure again, and it was down to 148/84, which is more near what it usually runs. Even though I already knew, because we’d been here so much before, I asked anyway if his kidney failure could be what’s driving his blood pressure so high. Dr Waid said, “Yes, it could be, especially if he’s either off medication or the medication his is taking isn’t doing its job.” Thomas made a face but didn’t say anything. This is where Dr Waid said that Thomas’ Rapamune levels hadn’t been detectable in his blood at his last appointment (November 21), again. This time Thomas did open his mouth to argue, but Dr Waid cut him off.

Thomas is very close to going on dialysis. It’s a shame the fistula surgery was canceled last week – it takes six to eight weeks for the artery and vein to mature enough for dialysis; if the fistula is used before it matures, it could blow the veins in Thomas’ arm and/or severely damage that artery. No dialysis patient can afford either (no kidney transplant patient can, either; period). Dr Waid said he would call Dr Shah and see if he could get that surgery fast tracked. But Dr Waid did suggest very heavily that catheter insertion is very possible at his next clinic visit (12/15).

His creatinine level was 6.6, and Dr Waid discussed his blood counts being low. He said once dialysis starts, they can get a better handle on stimulating those levels. Out of curiosity, I asked what the actual numbers were. Red count – 6.6. White count – 2.8. And his total hemacrit value was 19. I almost fell out of my chair. Yeah, his chronic anemia makes my chronic anemia look like I’m not anemic. Dr Waid patted my knee and told me to keep taking notes. (He can be so seriously funny!) He said that because Thomas’ blood levels are so low that he’s just taking him off the Rapamune and Cellcept – which solved that part of David’s problem. Also, he added a 30mg once per day blood pressure medication, but somehow I failed to get the name of it; I’ll find out on the fifteenth.

When we got up to leave, Jane asked, “But what about Thomas’ picc line?” Dr Waid and I were like, “What?” Jane said, “His picc line. I thought he had to have surgery for a picc line.” Doesn’t she pay attention? I said, “You don’t really have a ‘surgery’ for a picc line. They’ll do that right here in the clinic–” “But I thought that was today.” Dr Waid rolled his eyes in that way of his (I’d love to get that on video!) and said, “I think you’re thinking of the fistula surgery that was scheduled for last Tuesday but was canceled because Dr Shah had a transplant emergency come in. We’re getting that rescheduled right away. But the next time Thomas comes to clinic, he probably will be having a catheter inserted, yes.” Jane said, “Catheter?” The rest of us just walked off down the hall.

While I was waiting on the bus, I called and told Kathy everything, and then Thomas called and interrupted us, so she talked to him, and I called her back when the bus got downtown, and I could hear her again. She said Thomas tried to tell her that he’s allowed to eat before he has his blood drawn. He said he did this the entire time he lived with me and with her. Neither of these things is true. He’s supposed to be NPO before his blood draws. He always has been, and he knows this. But he told Kathy that he thought Dr Goebel had changed it one of the last times we were at the Cincinnati clinic. She said she just let it go so they could get on with the conversation. But we both agreed that eating beforehand would show elevated medication levels in his blood, not decreased or no trace at all. She said she’d tell Jane and then hope somebody could get it through Thomas’ head that he can’t eat before he comes to clinic.

overheard at anesthesia

I totally forgot to include this in the post about going with Thomas to anesthesiology, although Russell Dickerson’s gremlin pictures reminded me of it.

We were sitting there going over what Thomas has to do tonight – all that happy NPO stuff, etc, and so forth – and I burst out laughing. He and the nurse said, “What?”

I said, “So, you’re saying we treat him like a gremlin? Don’t feed him after midnight, don’t get him wet -”

The nurse and Thomas lost it.

schedule: week: november 27

  • Monday:
  • Preston starts sixty hour work weeks
    call Molly and have her fax a note about Thomas’ housing
    therapy appointment at 1:30pm on Wellington Way
    text Thomas to see if he got the time for his surgery

  • Tuesday:
  • Thomas’ fistula surgery at UK Hospital

  • Wednesday:
  • laundry (laundry room)
    writing (laundry room and dining room)
    not one damned other thing (it’s required!)

  • Thursday:
  • Thomas’ appointment with transplant clinic
    Thomas’ appointment with UK Internal Medicine

  • Friday:
  • taking today off! (it’s required!)

  • Saturday:
  • laundry (laundry room)
    writing (laundry room and dining room)

    very long hallway

    I’ve been meaning to post this for like ever, since the night Eddie brought Thomas to the emergency room at the first of this month. This has to be the longest hallway I’ve ever been down. I measured it on GoogleMaps. It’s somewhere around 330 feet, north wall to south wall. But when Thomas called to tell me what the ER doctors had told him that night, I was at the far end of this hall, then turned to walk back up to the other end, and walked all the way back. Yes, I almost missed my bus, but listening to him, I couldn’t just stand at the bus stop, either. I had to be doing something, else I’d likely have literally climbed the walls.

    two trips to clinic make a post

    I totally failed to blog about Thomas’ visit with his anesthesiology team on Thursday morning. I’ve had severe blogging ennui or something–for going on two years now; I’m trying to break out of that and blog more. I promise! Really!

    Thursday morning, we had to be at Kentucky Clinic Nephrology to have the anesthesiology discussion. You know, the one where they tell you what general anesthesia is and what all the risks are and have you sign a mountain of release and consent forms. Thomas was in a good mood, and he and I laughed a lot. They did an ECG, which came out perfect – not one flaw – but I did tell the tech who did it that his heart has some minor scarring because his blood pressure has been so high; they’d found that in 2009 in September the last time we’d gone up to UC for his all day annual check-up. And of course brainiac here couldn’t remember where the scarring actually is, but the tech called and got a copy of his records from Cincinnati Children’s. He was poked and prodded, and we filled out a ton of forms.

    When we were done, I told Thomas I’d see him Monday (yesterday) at the transplant clinic. I didn’t walk out with them; I intended to go to the coffee shop on the second floor for a cup of coffee. But when I got over there, I realized it was almost lunch (and I won’t go into that kind of crush on purpose) and also almost time for my bus to come, so I went walking back through the clinic. I got to the first floor lobby about the time Thomas and David got off the elevator. Thomas and I laughed. Because it was kinda funny. I had to wave and run, though, so I wouldn’t miss the bus and have to stand out there for half an hour.

    Monday wasn’t as big an adventure as Thursday, but in ways a funnier time was had as well as a sadder one. (Did you get all that? I’ll stop so you can go back and read that sentence again. You back? Okay.)

    Thomas isn’t anywhere near as dehydrated as he had been. The phlebotomist had no trouble drawing blood. Thomas went in there and pretty much came straight back out. So this is good. He weighed 155.8#, so he’s gained almost three pounds. His blood pressure is high, as usual. 144/86. His creatinine had dropped a couple of tenths down to 5.5. This means it’s stabilized (for now). Dr Waid made sure we understood that it may not stay that low and that it may never go down any further, which at least Thomas and I knew whether David and Jane didn’t. He said since the creatinine level has stabilized, Thomas won’t have to go on dialysis straight away like we were afraid he’d have to do. He can wait–unless it decides to shoot back up again.

    His next appointment at the transplant clinic is just before noon on December first–so we get to wait ten days between appointments this time instead of one week. But we have to go back to the hospital next Tuesday morning (the 29th) for the fistula surgery. We won’t know what time that appointment is until Monday; they’re supposed to call and let Thomas know–so, we’re all hoping he’ll answer his phone like he’s supposed to! (because if he screws this up…)

    So Thomas is still having issues with his medications. After we left the clinic, Kathy called me yesterday after I got home and said Thomas still isn’t showing any Rapamune or Cellcept in any of his lab work. This is because that handful of prescriptions Thomas left the clinic with last Monday? (He’d asked Dr Waid for all new prescriptions for everything so he could start totally over and have exactly everything he needs) Those prescriptions haven’t been filled yet. David said he would stop by the pharmacy and pick up everything on the way home that afternoon. I have no idea if this has happened yet or not. Also, Thomas was bitching that David isn’t keeping food in the house again. David said food isn’t an issue. Thomas just won’t buy when they ask, and he won’t ask them to take him out to shop when he wants/needs to go. (Thomas did that with me and Kathy both, too, so we know how that goes. But David has a long history of not keeping food in the house as well as not getting Thomas’ prescriptions filled (whether they’ve been paid for already by someone else (or Medicaid/Medicare) or not), so none of this is new stuff.)

    Since the Rapamune and Cellcept aren’t showing up in his labs, then his creatinine is going to shoot back up unless and until he gets his medications so he can take them. The suck ass part of this is that Thomas is really trying to show an effort here and do what he needs to do–and the people around him are fucking around and making him helping himself impossible. Also, David has it in his head that Thomas needs to move all of his nephrology appointments to Danville, which in my opinion is a really bad idea.

    When Dr Waid asked if we had any questions, Thomas and I were fine. Everything was clear. This medical team is thorough and explains everything very well. But Jane wanted to know if Thomas needs to get a standing order for lab work (at the hospital in Danville) in between appointments like we used to do when he was still going to UC. Dr Waid whipped around (he’d sat with his back to her and had talked to me and Thomas) and wanted to know why, as anemic as Thomas is and as healthy as we’re trying to keep his veins, such a thing would be necessary. I didn’t say anything, but I wanted to. When we were going to Cincinnati, we went every three to four months. Getting blood drawn once a month at a hospital or clinic closer to home was a necessity. Since he’s been with UK, we’re coming here once a week, give or take. Jane said, “He’s anemic? Why is he anemic? When did this happen?” I thought Dr Waid was going to burst a vein. He made a face, whipped back around, and said, “He’s rejecting a kidney!” I had to make myself not laugh. He turned back to me and said, “You’re keeping good notes, right?” I said, “Somebody’s gotta keep all this shit straight.”

    ETA because I hit publish entirely too quickly, and I apologize about that!:

    Jane also wanted to know when Thomas had gone off his medications. I said, “December. I’ve told you this and so has Kathy several times now.” But before she could raise much of a fuss, the doctor came into the exam room.

    Too, the entire time we were there, waiting room forward, Jane bitched that the appointment was taking too long. While we were still in the waiting room, at one point, Thomas said, “It’s not time for my appointment yet, Grandma. They draw my blood, then my appointment is an hour later. They have to wait for the labs to come back.” Jane said, “Do what?” Thomas and I rolled our eyes at each other. She did the same thing while we were in the exam room. Thomas and I both told her we’d had this same conversation while he was in the hospital the last time. He’s an adult now and being taken care of in an adult hospital, and things take longer in an adult hospital. Things in an adult hospital aren’t as urgent and immediate as they are in a children’s hospital. Things take time.

    some news about thomas

    Looks like I didn’t blog at all about Thomas after Tuesday, and I apologize for that. Tuesday was just so appalling that after that I just got a bad case of the don’t give a damns. About a lot of things – but that’s probably another post all by itself.Or maybe an entire book …

    Tuesday Thomas very plainly stated that he wants to be with family, that he’s unable to live by himself. Yet, he is still bucking the idea of living in assisted living housing. (Also, he told me that he got something from the SCL people the other day about housing, didn’t understand it, and just threw it out, gods above.) He was asked (by the medical staff and by the transplant social worker (Molly): Do you want to do what it takes to stay alive? Are you willing to take the necessary steps to get your health under control? He said he is. Then again, he also told Molly, and the medical staff, that the signs I’d made him last month and the dry erase board I’d gotten him had been a big help. He told me during his clinic visit on Halloween that he’d lost the dry erase board. I took this to mean that he’d never hung the signs I’d made, as well.

    While we were discussing housing, treatment, and care with Molly, Jane whipped out her copy of the psychiatric testing I had done on Thomas in July 2009 – waving it around like it were a magic ticket that would get stuff done. She looked smacked in the face when Molly looked at the paper and said, “None of this matters right now. Thomas is over eighteen and is his own guardian. That’s what matters. He’s over eighteen and can make his own decisions. The family can discuss everything with Thomas, but the family can’t make decisions for him. He has to do that on his own.” Still both Molly and the medical staff all agreed that Thomas needs to be staying with someone and having some kind of supervision (caregiver) since he’s not been taking care of himself on his own – plus there will be days he’s not going to be able to drive himself to or from the dialysis clinic.

    This brings us up to Wednesday. His creatinine was still sitting at 9.2. We were told again that dialysis was an inevitability, but we all hoped it could be held off for a time. We thought for a while he might get discharged that afternoon, but that didn’t happen. He called Jane and was talking to her at one point about it, and he said if he did get out, he could go home with me and stay until someone came to pick him up. I could hear Jane on the other end of the phone say, “No, you can’t do that. She kicked you out. She doesn’t want you there.” Thomas grumbled and said, “No, Grandma,” and tried to explain, but she didn’t want to hear any of it, so he just gave up (as did I when she spoke with me further into the conversation). Thomas and I both gave up trying to explain much of anything during that conversation because it was being misunderstood or misinterpreted or something.

    Dr Castelliano said that for certain no medications showed up in his blood work before his admission to the hospital Sunday evening, but they all were showing up now (Wednesday) due to treatment there on the transplant floor. Also, we were still waiting on the rest of the results on the biopsy – still, two days later! Remember he showed both cellular and humoral rejection when he was in the hospital last time. This time, the biopsy was showing acute cellular but wasn’t coming clear on the humoral. If he’d had humoral, as well, he’d have had to have come back to the clinic three times a week for a series of plasmaphoresis therapy treatments. The biopsy and ultrasound did show some mild fibrosis but nowhere near as bad as anyone had suspected; this is good news!

    Which brings us to Thursday.

    Thursday, his creatinine had dropped down to 8.7, but Dr Hundley said it may never go down any further and told us not to get our hopes up. He said that when Thomas does go on dialysis, there’s a lot of things he has to consider. He’ll have to be 100% compliant with his meds, his clinic and dialysis appointments (and treatments), and have to go on a renal diet. I said, “Thomas, this means, if you want your McNuggets, you’ve got to go out right now and eat as many as you can, because you’re not going to be able to get them later.” Dr Hundley agreed. Dr Hundley said that Dr Shah would be visiting with us during his clinic appointment Monday (today) to discuss the fistula and all that happy stuff – what it is, how it works, and all that. Also, his medications were swapped around again. They’ll be swapped around again when dialysis starts.

    So he was discharged, and we packed everything up and walked out to the bus stop. We had a bit of a wait, but that was okay. Thomas called people who needed to know so they could get a plan in place for picking him up at my apartment later in the day. Turned out that his uncle Danny came to pick him up after work. But nobody took Thomas to Mt Vernon so he could pick up clothes (all he had in his bag were pajamas) and his medications; so he didn’t have those Thursday evening or Friday morning. For the record, he did get to Mt Vernon to pick up some stuff Friday afternoon I think it was. Also for the record, after standing there preaching at him all day Tuesday that he has to take care of himself and that he has to take his medications, not going to pick up the stuff he required was a really shitty thing to do.

    Now we’re up to today. Monday. November 14.

    He weighs 153#, and his blood pressure was a little high – it came in at 156/80. He still has 9% total kidney function, and that’s likely never to change regardless of treatment. Dr Waid said Thomas definitely still has ‘significant ongoing acute cellular rejection‘ but that the humoral stain was ‘inconclusive’; in other words, too close to call.  His creatinine had dropped down to 5.6 somehow. We were all surprised, even Dr Waid. Again, he told us not to get too excited. He didn’t think at this point that the kidney can be salvaged given its history over the last four years. He said he could see dialysis starting within two to three weeks.

    Thomas kind of made a face, and I asked, “Thomas, how do you feel about all this?” He shrugged. I said, “You feel ‘whatever’, then?” He said, “If this is what’s got to be done, then that’s what I have to do.”

    Dr Waid explained it takes a fistula six to eight weeks to be ready to use for dialysis. Dr Shah said they can insert a dialysis catheter (this is what I meant when I told him about looking like he was driving nails up his arms) as a temporary thing until the fistula matures enough to use. They said the vein mapping they did Thursday morning didn’t give them the information Dr Shah needed to get the fistula done – he said he needed measurements and all he got was a note saying Thomas has ‘normal veins’, which made us laugh because he has my veins, and they’re awful. (the vein mapping is simple – all it is is an ultrasound of the veins in one of your lower arms, which is kinda cool, considering.) So we went upstairs to the vascular lap and had the mapping done again, and it took a whopping fifteen minutes (counting checking out of the clinic, getting on the elevator and going up one floor, and giving the receptionist Thomas’ lab order).

    He comes back to clinic on the 21st at 10am. Then comes back to clinic on the 29th for the fistula surgery (very simple). I don’t have a time on the fistula surgery yet; they have to get that scheduled for that morning then call and let us know the time. I look for him to have a clinic appointment on the 28th as well, given how everything has been going so far. Dr Shah said that after he does the fistula, Thomas won’t be able to carry, lift, push, pull, or anything like that. Too, he won’t be able to get injections or have blood drawn out of that left arm anymore, either, because they have to ‘save his veins’ as well as they can.

    So that’s where we are right now. More news as it comes down the pike.