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.