Day +489

Not much to report on the health front. I still feel great. Only got sick once during the semester, which surprised me a bit.

I'll be in Chicago from January 6th-12th for my followup. I'm scheduled for a colonoscopy, abdomen MRI, blood work (including immunization titer), fertility testing, and appointments with the GI and Dr. Burt. At the latest, I'll post an update at the end of that week.

Day +445

It's been close to 3 months since my last update, and not all that much has happened since. I got a sinus infection a few weeks ago that a 10 day course of antibiotics took care of, but nothing really noteworthy other than that. I had some labs drawn last week that were all normal. I had some minor GI issues for a couple days that passed - it was probably just something I ate. Other than that, no symptoms to speak of!

I'm working on setting up my followup at Northwestern in January over my winter break. I can guess how most of the testing would come back at this point, but I still don't know if I'll need my immunizations again. I'll try not to go quite this long without updating again, but assume no news is good news.

Day +365

Well, today is my immune system's "birthday." I wanted to have made a video by now for prospective patients talking about the decision to do a stem cell transplant now that I'm a year out, but moving, getting ready for school, and my computer breaking has delayed that. Hopefully I can get it done soon.

I'm still symptom free, though, and I can stop the last antibiotic, Acyclovir. Now I'm just on Aciphex for reflux, and Claritin and Nasonex for seasonal allergies. There really isn't anything else health related worth mentioning for now. I'll go into more detail in the video.

Day +320

I'm still doing really well - symptom free. I had my wisdom teeth removed last Thursday and that went very well. Not much bleeding afterwards, the pain meds didn't make me really out of it, and they had me do a 5 day course of Clindamycin while my gums healed to prevent an infection.

 Scheduling didn't work out to have a follow up this summer, so I'll be going sometime in January instead. Since I'm doing well, Dr. Burt is fine with putting it off until after the fall semester. I'll go ahead and stop taking Acyclovir at the 1 year mark.

Day +290

I'm still doing great. My allergies are in check and I have no symptoms to speak of.

I had the growth hormone testing a few weeks ago and saw my endocrinologist last week. The results were fine, and he was content with the latest set of labs for now, so I won't need to supplement growth hormone. I'll still follow up with him twice a year for the time being because it's hard to know exactly what the transplant might affect. I'm hoping to get my 1 year follow up scheduled soon for sometime in July.

Day +259

I'm still doing well. My seasonal allergies got a bit worse, to about where they normally were in the past, so I've started using Nasonex again in addition to Claritin. That seems to be enough for now.

I found out that the third cord blood patient didn't end up with any donor immune cells, either. Dr. Burt now thinks that there isn't enough blood from cord blood transplants, even using two, for the chimerism to happen. Not sure why it happened with the first patient, though, with HIPAA and all. As far as I know, the focus will be sibling donors now, and cord blood as a fall back if there is no eligible sibling donor. Needless to say, this gives me more questions to ask Dr. Burt when I see him sometime this summer.

Day +236

The Erythema Nodosum was pretty much gone in about a week like my doctor guessed it would. It cropped up slightly again a few days later but it was short-lived.

I did get the chimerism results from the final test a few weeks ago and, as expected, no donor cells are present in my immune system. You can refer to the Day +174 entry for the implications of that.

I'm still feeling great overall. Started going back to the gym again this week. Hopefully now I can stay healthy for more than a few weeks at a time.

Day +221

The Z-pak took care of the sinus infection. However, either due to the medication or sinus infection, I developed Erythema Nodosum over the weekend, so I have annoying red bumps on my arms, legs, and feet that feel like bruises. There really isn't much to do to treat it. Eventually it will just go away on its own. My PCP said he could prescribe Prednisone but I'll gladly avoid  that and tolerate things until they get better. I tried Ibuprofen but that didn't help. I'll be referred to a dermatologist if things aren't getting better by Monday.

I still feel great otherwise. No GI symptoms, my appetite is better than ever, and my energy level is good.

Day +212

I managed to get sick again with another sinus infection. It may have been partly leftover from last time or I got another one while on vacation. I was just getting back from a trip to Florida for spring break so Dr. Burt went ahead and prescribed a Z-pak. If I'm not feeling better after the 5 days, I'll do another round of it.

Day +204

I'm feeling much better now. The Amoxicillin took care of the ear/sinus infection by the end of the course early this week, and I still feel great otherwise. There's not much going on as long as I stay healthy so I probably won't be posting updates too often unless something comes up. No news is good news.

Day +190

On Sunday, I started getting a cold. I never felt that bad from it but eventually the congestion was a lot of yellow/green mucus so I saw my PCP on Thursday. Turned out I have an ear infection and likely a sinus infection. She prescribed Amoxicillin which will deal with both. I wasn't around anyone who was sick to my knowledge so I'm not sure where I got it from. Aside from that, I'm still feeling great. I had started going to the gym again the week after getting back from Chicago. I'm waiting until I get better to work out again, though.

I saw my endocrinologist this week, as well. Most of the hormone testing came back normal. A couple were borderline so he's having me repeat those. I asked about getting a bone density scan done given everything and he agreed it would be a good idea. I'm also scheduled for growth hormone testing in May.

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. 

Day +161

I've been feeling even better this week. No more vomiting, my GI symptoms are gone, and the post nasal drip is better. The chimerism results aren't ready yet. This will probably be the last post until the follow up unless there's something noteworthy to say.

Day +155

Labs were fine this week. The only culture result that came back so far was C. diff and it was negative. I had some more vomiting on Monday because of mucus building up in my stomach again. The results of the chimerism test should be back relatively soon.

Day +147

Dr. Burt changed his mind about blood test frequency, so I'll be getting it drawn every 2 weeks for now. I saw my GI on Tuesday and she ordered more cultures, mainly for C diff once again, and added Sed rate and inflammation markers to my usual blood work. I'll followup with her in 2 weeks. If worse comes to worst, the colonoscopy at Northwestern should provide the answer to what's going on.

I had some more vomiting mucus yesterday that was similar to the week before, but it didn't persist as long. I managed to take Zofran and that calmed my stomach down. I've been fine since. Mucus seems to keep building up in my stomach because of post-nasal drip left by the cold. I'm still taking Mucinex D to help with it.

Day +140

Labs were fine again this week. Dr. Burt said I can start getting them drawn monthly now. I finally got my followup scheduled this week. I'll be in Chicago February 13th-17th for a CT scan, colonoscopy, blood work, and appointments with a new transplant GI (Dr. Craig retired) and Dr. Burt.

I was talking with the 3rd Crohn's patient who had the cord blood transplant earlier. She had a chimerism test done a little more than a month post-transplant and it didn't show any donor cells at that time, either. It may not really mean much but I think it's worth noting for comparison.

I made a trip to the ER last night/this morning. I was vomiting pretty consistently for a few hours, all mucus after the first few times and my stomach was empty. I felt really dehydrated and fatigued, and couldn't keep sips of water down so I figured it was worth going for IV fluids at the very least. Looking awful and saying "stem cell transplant" really cut down on the wait time. They started fluids, did blood work, an EKG, got a chest X ray, and gave me Zofran. The EKG was normal, my WBC were slightly elevated, and the X ray didn't show anything of concern. It was most likely a lot of built up mucus from the cold I've had, possibly a mild virus. My stomach had settled and I was able to drink and keep down water. They gave me a prescription for Zofran and let me go. I feel fine now today. Eating normally without nausea and without taking Zofran. Hopefully the mucus got cleared out of my stomach and it won't cause more issues.

Day +133

My labs were fine this week. All of the cultures came back negative, though. I'm still pretty sure I have C. diff based on my symptoms. The test for it just isn't very accurate. My GI wants to see again me before doing anything else so I have an appointment for the 17th. My cold is still around, but getting better.