Discharged

The Tylenol they gave me last night helped with the fever and it was gone by this morning. My white blood cell count and heart rate had been lower since the 103F fever so Dr. Craig guessed it wouldn't be as much of a problem. The medical team forgot to change my diet restrictions so I ended up with liquids for breakfast. I was happy with whatever they would give me at that point. That still went down fine, and I had solids for lunch: honey glazed chicken, cooked carrots, and grapes. It was actually really good, and I was able to eat without any issues. After the medical team checked in about how the meal went, they worked on the discharge process and I was out within 2 hours.

I'm still feeling much better than Monday, about the same as before the colonoscopy, and better than yesterday since I've been able to eat. The only difference I've noticed so far is that I'm burping more than before when I eat. Not a major issue, just an annoyance. I'll be on Cipro and Flagyl for another 8 days and keeping an eye out for any change in symptoms. I don't have any more appointments scheduled with Dr. Craig or Dr. Burt, but I'll probably call to check in with them sometime next week.

While I was in the hospital, a ton of medical students and residents kept up with things, asking questions, listening to my heart and all that. Dr. Craig checked on me regularly, Dr. Burt came by, as well as a surgical team. After Dr. Burt saw the x-rays and talked with everyone else, he said it was a "minor setback" and things should play out about the same. The stricture will pose a bit more of a risk as it's another possible place of infection while I'm immunocompromised, though. The surgeon talked to me about the possible options on her side of things, not being pushy, just sounding grim, so I would have more information to base my decision on. Dr. Burt sounded comfortable with going through with the stem cell transplant, assuming things don't get much worse. Again, since it's a trial, he isn't going to be taking risks he isn't sure about for the sake of the patient and the trial itself. From what I understand, major complications and/or death are huge reasons why trials are stopped and don't make it as approved treatments. He doesn't have a problem saying no to a patient who isn't a good candidate.

Dr. Burt also said that he has seen strictures end up healed after the transplant, more often in the colon/large bowel, where mine is located, compared to other areas. The surgeon's opinion was that it was unlikely that the stricture would heal, but possible. I'll want to talk to Dr. Burt more about it but I'm still going with his word. He's the most involved and most knowledgeable with the transplants so I trust him most. Surgery really would be my last resort, even behind finding hookworms. I haven't heard anyone make surgery sound like an attractive option, especially compared to the possibilities of a stem cell transplant. With a colostomy and ileostomy, they can get rid of the diseased parts of the intestines, but that comes with its own drawbacks.

There's nothing stopping Crohn's from spreading to what's left of the intestines, so you may not stay symptom free for long. It's normal for people to still need medication to help what hasn't been taken out and, with no medications left that are treating much, that doesn't even seem like a long-term situation. A large percentage of people who have surgery will require more surgery in the future, and there's only so much you can take out. Each subsequent operation can be more difficult. If you're facing death, surgery seems like a far more reasonable option. The quality of life surgery may lead to isn't anything I want to settle with yet. If the stricture doesn't end up healing, a resection to remove it will be worth considering. That's something to deal with in the future, though.

I'll work on updating/correcting information on the what is a stem cell transplant page with some of the free time I have between now and the transplant. I'll post an update sometime next week unless something else comes up before then.

Colonoscopy

The prep for the colonoscopy went well enough. During the procedure yesterday, Dr. Craig ran into a blockage and stricture. He used one of the smaller scopes and pushed through. That, along with how inflamed my colon was, stirred things up even more. Once I woke up in recovery, I figured the pain was the usual air trying to get out after the procedure. When I went to the bathroom, the pain started getting worse. It was eventually a 10/10, on par with the most pain I've felt from Crohn's in the past. I tried drinking some water and Ginger Ale and vomited within 10 or 15 minutes. I tried drinking some more a bit later, and I vomited again within 10 or 15 minutes, and started shaking a lot at one point. Dr. Craig was concerned that he may have perforated something. He even commented that it was the worst inflammation he has seen (what an honor!), much worse than in March, and he sees the sick of the sick Crohn's patients for stem cells transplants. They set up IV fluids, gave me an anti-nausea med, and decided to admit me.

I was running a fever so they gave me Tylenol, started me on antibiotics, Flagyl and Ciprofloxacin, gave me 1mg of Morphine to take the edge off the pain, and ordered x-rays of my abdomen. The x-rays were to see if any air was in my intestines, indicating a perforation that could have requires surgery. They kept me on a no solids and no liquid diet at least until they were able to see the x-rays and determined I wouldn't need surgery. The fever got up to 103F, and eventually broke this morning. The pain got better as the day went on, and the bleeding stopped this morning as well. I felt a ton better today after the fever broke, and the pain was less severe (3 or 4/10) and less frequent. I was allowed to have liquids for dinner. Broth, some jello, and a bit of a popsicle went down fine. I had a fever of 100.5F around when they brought the dinner, and that's where it is now. They're waiting until I can eat solid food and the fever is taken care of for good before they discharge me. I'll have soft food for breakfast and see where things go from there. I'll go into more detail once I'm feeling better, but I wanted to give a quick update for now.

Dental Appointment

The dental appointment was to check for anything that might lead to an infection (abscesses), not cavities, and address any other issues I may have had. The assistant took a bunch of x-rays of my teeth, I think I counted 15, and a panoramic x-ray because I haven't had my wisdom teeth removed. The dentist looked at the x-rays and went over my history briefly. She poked around a bit, nothing painful, and said my teeth are in pretty good shape and all looked well. The dentist wasn't positive about whether or not my wisdom teeth should come out before the transplant so she called an oral surgeon in to look. He said it would be best to get them removed after the transplant, after my counts have recovered. Removing them pre-transplant could possibly leave more of a risk if everything hadn't completely healed in time. With that dealt with, the dentist signed off on the clearance form.

After that, I got blood drawn for the chimerism analysis and a few other routine tests that were missed last time. The only things left are a colonoscopy on Monday, and an appointment with the GI, Dr. Craig, on Wednesday. If those go well, I'll be cleared for the transplant and the cords will be sent to the hospital.

Pre-Transplant Appointment with Dr. Burt

I had my appointment with Dr. Burt today. It was the usual checkup, all of the test results have come back fine, and a chance to ask questions.

Since my evaluation in March, there haven't been any other transplants using cord blood. Of the 10 done so far on patients with various autoimmune diseases, 1 of whom had Crohn's, they are all doing very well with no major complications. There may be another Crohn's patient who will have one done soon as well, pending insurance approval.

The 2 cords Dr. Burt has picked for me are both 6/6 matches, and are my blood type, O+, as well. The infused stem cells will play a large part in the makeup of my new immune system. Since there will be 2 different sets of stem cells used, one of them will "win out" over the other and it will influence the makeup of my immune system. The less of my current immune system that comes back, the less likely it will be to relapse. I will have blood drawn pre-transplant for chimerism analysis, to establish a baseline, and again at 6 months post-transplant to measure engraftment. This will give them a percentage of how much of my new immune system is based on the stem cells or from my genetics.

Any possible allergies with the new immune system would be derived from the influence of the infused stem cells. Only the umbilical cords of healthy people (no medical history of disease) are saved. Some transplant patients reported that they no longer had more common allergies (such as hay fever).

DNA typing to check for genes associated with developing Crohn's isn't worthwhile. It is still uncertain exactly which genes are involved anyway, and most insurance companies wouldn't cover it, so it would be $5,000 out of pocket for even a basic panel. It wouldn't end up meaning much.

The chemotherapies I will be given are Cytoxin and Campath. I'll get a schedule soon of what will be done over the 8 days of chemo.

I was given a health survey and the consent form to read and sign. I have a dental appointment in the morning, which will be the 3rd to last piece of the pre-testing. If all goes well, I should be cleared for the transplant sometime next week and then the cords can be sent to the hospital.

Urology Appointment

All I had scheduled for today was an appointment with a Urologist's Physician's Assistant for sperm banking. She mostly got my information and some of my medical history, and went over the risks with chemotherapy regarding fertility. During the chemo, it is quite common to be infertile but, 99.9% of the time, it's only temporary. Dr. Burt said there's really no reason not to bank sperm because you can get tested a year or so after the chemo and get rid of the samples if they're not necessary.

That's all until next Wednesday. Next on my schedule is an appointment with Dr. Burt on the 20th. He should have all of the results from my tests so far, and I'll ask the all of the questions I have. I'm sure he'll have more specific information since the dates are set for the transplant, and he has picked the two cords I will be getting. I'll be enjoying myself in Chicago, staying healthy, and trying to not lose weight until then.

More Testing

Today, I was scheduled for a MUGA (the new name is Radionuclide Angiography - the technicians weren't even positive what MUGA stands for), to check blood flow through the heart, and a Pulmonary Function Test, to measure lung function.

For the MUGA, they injected something that would circulate through the body specifically where they wanted it to (avoiding other organs, for the most part), then had me wait for 20 minutes. Then they injected me with with a radioactive marker that binds to the red blood cells and would flow through the proper path to the heart that they can take pictures of to measure blood flow. The technician was using two syringes through the same line in the back of my hand for the second injection and I got a weird pain in my wrist that was hard to describe, sort of like the muscles painfully contracting. It went away after about ten seconds, though. After that, I laid on the table while they took three pictures at different angles, which took eight minutes each.

For the Pulmonary Function Test, I sat in a clear box with a machine that controlled air flow. They give you nose clips, so you're only breathing through your mouth, and a mouthpiece that attaches to the machine. They had me do different kinds of breathing - normal breathing, exhaling as hard and as long as possible, panting (quick, short breaths and quick, longer breaths), inhaling as hard as possible while the machine restricted the air, and probably something else I'm forgetting, with breaks in between. The whole test took about ten to fifteen minutes.

First Day of Pre-testing

Last week, Northwestern put my name down for a free room for transplant patients and families. I got a call on Thursday saying the room was available, and had until the next day to claim it, so I flew to Chicago on Friday. Since I got here early, Northwestern was able to reschedule a lot of the testing so I wouldn't just be sitting around for 2 weeks and to give extra time in case additional testing was required.

I was scheduled for blood work, an EKG, a CT enterography and of the sinuses, and a chest x-ray to assess how I was in terms of Crohn's, and to make sure there's nothing wrong before starting the chemo. The blood work was simple enough. For the EKG, they just attached the pads and had me lay on the table for a few minutes. I couldn't even tell anything was happening.

I skipped breakfast because of the CT enterography (only clear liquids 3 hours prior). I drank 2.5 out of the 3 bottles of barium sulfate and they actually went down better than I expected. Before too long, I was on the table. They did the CT of the sinuses first - just hold still for a few seconds while they take the picture - then the enterography. You hold your breath for a few seconds while they take the picture, then injected the contrast and took another. The contrast makes you feel extremely warm throughout your body, and sometimes puts a weird taste in your mouth, but it passes after a minute or two.

For the chest x-ray, you just hold your breath and hug part of the machine for one picture, then put your side against it for the other. It only took about a minute.

I was accidentally scheduled for a vein check which I only would have needed if I was doing the autologous transplant. They would have gone over the catheter they put in the back of your neck to harvest your stem cells, and any other questions that came up. That was all for today.