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.