On Thursday, we had our first appointment with Oncology. The doctor was very nice and we had an awkward conversation of him trying to feel me out for what I knew of what was going on and me not realizing that was what he was doing, and also of him trying to get the “best of” version of Teddy’s history, and me uncertain how to answer pretty much ANY question without starting back at the beginning. “How is his appetite?” is not a simple answer – nothing is really a simple answer. Then we had the oft-repeated scene of him asking for a list of Teddy’s current meds, and me saying “do you want strength an-*d dosage, or just names?” and then him deciding that it was too hard for me to remember strength and dosage of all his meds (it’s not – I don’t even carry a current list with me, I’ve always been able to do his meds by memory) and just looking them up in the computer, making me wonder why he didn’t just do that in the first place.
But anyway. I am gaining a keen appreciation for having the same thing explained to me by two or three different people. The way he explained what was going on was either more clear than I’ve heard it in the past, or perhaps the vast quantities of research I’ve done in the last few weeks helped. 🙂 He said that this is either just an EBV infection that needs to be monitored and treated, or it could be PTLD. Statistics are certainly on the side of it being just EBV, but because EBV is so highly associated with PTLD and other lymphomas in transplant patients, it’s something that must be monitored carefully. The only way to know for sure what was going on would be to do a CT scan and see what his lymph nodes look like. But we need to balance the radiation exposure and the hit the kidney takes from the dye against the benefit of knowing. The oncology recommendation would not change whether it actually was PTLD or if it is just EBV – they’d want to keep immune suppression significantly lowered and monitor EBV levels. So they were going to recommend to Nephrology that we not proceed with a CT scan.
At this point, my inner voice was saying, “hey, I appreciate wanting to reduce his exposure to radiation at this point – after he pretty much already glows in the dark – but I really just want to KNOW!!”
Fast forward an hour to our Nephrology appointment. Our nephrologist seems to have said, “hey, thanks for seeing my patient and giving me your opinion. We’re going to do the CT scan anyway, so could you please set that up for us?” lol. Nephrology doesn’t want to keep immune suppression lowered any more than we have to, and they can develop a better game plan for the suppression if they know exactly what we’re dealing with. Fine by me.
Other highlights: His CMV (another of the viruses that cause lots of trouble after transplants) level is also up, so we’re monitoring that, but it’s not high enough that anyone’s worried. I have read that elevated CMV and elevated EBV at the same time is pretty much not a good thing, so we’re hoping the CMV stays where it is and doesn’t shoot up. BK virus (the third of the Terrible Viral Trio) is still not detected, so at least there’s that. 🙂
With this UTI, nephrology decided they wanted to be extra double sure his kidney still looks good and that it doesn’t have any hydronephrosis. (To review, hydronephrosis is when fluid accumulates in the kidney.) So we swung over to ultrasound and his kidney looked so very pretty. He even chilled out about the ultrasound after an initial panic that set it once we entered the ultrasound room. The report from the ultrasound says that his kidney is perfect in every way – just not exactly in those words.
I feel like more happened, but here it is Saturday and I can’t really remember.
I’m waiting to hear officially, but it appears from Teddy’s online chart that he has the CT scan scheduled for Tuesday of next week (7th). He needs extra hydration beforehand, but I’m not sure if it’s the “come the night before” type of hydration, or just the “come early” type, lol.
I do know that oncology made me feel bad for saying that he’d need to be sedated if they wanted him to hold still for an hour. Um… he’s two. The guy asked, “well, how do you do ultrasounds?” “Um, I pretty much lay down on the table with him, pin his legs down if I need to, and constantly distract his hands. A 20 minute ultrasound is exhausting.” That sounds horrible – it’s not as horrible in person. I cannot let him kick the ultrasound person in the face, that is why I keep his legs under control if/as needed. His hands need a distraction or he’ll be shoving at the ultrasound wand the whole time. He cries a lot, usually, but it doesn’t actually hurt him – he’s just freaked out.