Day +174, 6 Month Followup

On Tuesday morning, I had an MR Enterography, lab work, and appointment with Dr. Yun, the new GI.

The MR Enterography gives a better picture than the CT, and it uses less radiation, so that's what Dr. Yun prefers to have done. It's similar to the CT but it takes longer. You still have the barium to drink, and then you follow breathing instructions. They give a shot of Glucagon to relax the abdominal muscles to get a better picture, and also inject a dye towards the end (slightly different than the CT dye - makes you feel cooler instead of warmer). 

The appointment with Dr. Yun was just going over how I've been since the transplant and a bit before, and so we could meet before she did the colonoscopy.

I saw Dr. Burt on Wednesday. It wasn't anything surprising. Just quickly went over how I'd been feeling and how things would go from here; 6 more months on Acyclovir, and no more blood work is necessary. He had gotten the results of the chimerism test from January and donor cells still hadn't shown up. They drew blood to test for it one last time with the rest of the blood work earlier. At least some cells should have shown up by now if they were going to, so Dr. Burt isn't expecting them to at this point. It's hard to say for sure, but it could be because I didn't get the last dose of Campath. He also mentioned they adjusted the chemo for conditioning to improve the process. I essentially will end up with a much better autologous transplants. My immune system is the same, but having received umbilical cord blood stem cells from a healthy donor was a lot better than using my own from my unhealthy immune system. I can count on having to deal with Crohn's again at some point, unfortunately. There's no way to know when for sure, though. For as little data there is on allogeneic transplants, there's even less for when the donor immune cells don't take. It would seem reasonable to expect at least a few years, given how effective the autologous transplants were.

I had the colonoscopy today. The prep is so much easier to drink when you're healthy. Dr. Yun and I discussed not pushing anything if the stricture was still an issue so there wasn't a repeat of last time. We were on the same page there. Luckily, it didn't end up being an issue. The stricture has healed, along with most of the inflammation. There were a few scattered pseudopolyps in the sigmoid colon, and everything else was quiescent. It hasn't even been a full 6 months yet, and there's at least another 6 months for the stem cells to keep working.

Even before the testing this week I would have deemed the transplant extremely successful, despite the donor cells not showing up. I have a life again. I'm back in school, and should have no health issues getting in the way of graduating. I can go out whenever I want to. I don't have to decide if it's one of the rare occasions I'm feeling up to it and worry about how I'm feeling while I'm out of the house. I have the energy and ability to exercise and play sports again. Without the transplant, I couldn't have reasonably expected to be even close to such a good position. There were no more medications to try, I wouldn't agree to surgery, and pursuing to hookworms would have been rather uncertain. I don't have any regret about doing the transplant. I would do it all over again in an instant. It may seem scary, but not doing it was far scarier for me. For other patients who aren't sure about doing it, have an evaluation at the very least to find out if you're a candidate. You can talk to Dr. Burt and ask questions to get the best possible understanding of it. You can say no in the end if you really don't want to, but it really is something I think you would find entirely worthwhile.