Day +126

I didn't see a copy of my labs this week yet due to the holidays but Dr. Burt would have called if anything was noteworthy. Flagyl never really helped too much with the symptoms so my GI ordered more cultures to test for C. diff again and some other stuff before trying another antibiotic. I asked Dr. Burt about possibly stopping some of the prophylactic antibiotics since I haven't been on Cyclosporine or Cellcept (the immunosuppressants) for a while now and he said to stop Bactrim and Diflucan. Since stopping those, and finishing the course of Flagyl, I haven't had any nausea or vomiting. I did come down with another cold, though. I had a bit of a sore throat on Tuesday that went away for a bit and came back, then had sneezing and a runny nose by the time I went to bed. I'm taking Mucinex D during the day and Nyquil before bed and they're helping. I felt pretty bad yesterday but considerably better today. The results of the cultures should be ready on Monday or Tuesday so I should be able to start whatever's necessary then.

Day +120

Labs were fine this week. The test for C. diff came back negative, but it could be a false negative. My GI is having me finish the course of Flagyl and added Florastor, a probiotic that should help fight C. diff as well. I'm feeling a little better, but not a lot. Been having a more frequently upset stomach and vomiting from the antibiotics. I'll get in touch with my GI on Monday and see what she wants to do. It will probably either be more Flagyl or Vancomycin.

Day +112

Labs looked good again this week. I never really was back to feeling too well after last weekend. Dr. Burt had me stop Cellcept to see if that would help any, as well as for the chimerism. It was a bit up and down and then I was feeling worse with GI symptoms later this week. It seems exactly like how I got C. diff before, so I feel pretty sure that's what it is again. They're testing for it to be sure, but I'm already going to start a 10 day course of Flagyl. I have an appointment with my local GI on Monday so she can look after things and they don't have to play long distance doctor from Chicago quite as much.

Day +106

Labs were fine this week, and I stopped Magnesium. I saw my Endocrinologist this week. He gave me an order for blood work to start with and we'll go from there. He wasn't very familiar with the stem cell transplant so he will probably want to wait until most of the recovery is over with and he has more confidence in the results of whatever tests he would do.

I saw my Ophthalmologist, as well. My eyes changed a bit since last time. My vision is the same, but my pupils are slightly flat (extremely hard to notice). It doesn't mean much on its own since I don't have any issues, but it's a noteworthy change since they've always been round until now. Everything else was fine so I'll see him again in 4 months.

I didn't post the update yesterday since I wasn't feeling too well. The antibiotics bothered my stomach and I vomited twice. I just relaxed for the rest of the day. I took them again this morning and I'm feeling fine, so I guess it was just another fluke.

Day +98

I'm still feeling better since stopping Flagyl. Labs looked fine again this week. The chimerism results came back and it turns out it was negative for any of the donor immune cells. The immunosuppressants/anti-rejection meds could be preventing/hindering the process, so Dr. Burt is having me stop Cyclosporine. I may stop CellCept in a few weeks, as well. It's also possible not getting the last dose of Campath is playing a part in it. I'll have another chimerism test in about a month. It's not uncommon for the donor cells to take more time to show up.

I meant to take a new picture sooner since my hair was growing back.

Day +91

Labs were fine again this week. My symptoms still weren't back to "normal" when I finish the extra Flagyl, but it could have been the Flagyl itself causing that. We decided to go without it and see how things went, and try something else if things worsened. It turned out to be the Flagyl causing issues. I'm feeling better since stopping it, and continuing to improve. I had an ingrown toenail removed by a podiatrist this week. Since I'm still immunocompromised, we wanted to make sure it didn't get infected. My toe felt back to normal after a day. I just have to keep it clean while it heals.

Day +84

Labs looked good again this week. I'm on a few extra days of Flagyl since C diff isn't completely gone yet, and I don't think it will be by the end of this course. I feel pretty good, though. I'll see what they want to do next tomorrow.

Day +77

Labs were fine again this week. I'm feeling a good bit better, but I'm not over the C diff yet. I still have a few more days on this course of Flagyl and they could prescribe another or something else if I'm not better by the end of it.

Day +70

My labs looked good again this week. I didn't feel much better during the week, and the tests revealed that I have C. diff, which isn't a huge surprise given all of the antibiotics I'm taking, so I started on Flagyl today for it. I should start feeling better soon. I started taking a probiotic this week, as well. Hopefully that will help in the future once this is taken care of. The lab messed up the chimerism testing so I have to get that redrawn on Monday and wait another month or so.

Day +63

My labs looked good this week. My gut started acting up a bit on Wednesday, like it occasionally has due to the medications I'm on, but things haven't gone back to normal yet. I'm getting tested for C-diff/parasites just in case. It's probably just a bug or side effects from a medication. I'm feeling pretty well otherwise. My throat is back to normal and my energy is decent. I just have cold extremities because my hemoglobin won't be in the normal range during recovery and the weather is getting colder.

Day +56

My labs looked good again this week. I'll keep getting them drawn weekly because Dr. Burt wants to continue monitor my Cyclosporine levels. My throat is still slightly red, but I'm feeling well. The improvement in terms of Crohn's will likely slow down a bit. The new mucosal lining that grew was likely responsible for the more noticeable improvements before, and now it'll take the stem cells longer to heal everything else. Still no results of the chimerism testing yet.

Day +49

My labs looked good this week. The chimerism testing takes longer than I thought so the results still aren't back yet. I'm just about completely over the cold (throat is still slightly red). I'm still feeling better overall each day. My hair started growing back, which I'm happy about since the weather isn't cold yet.

Day +42

I'm feeling really well. Still not completely over the cold, but it's not bothersome. My gut continues to improve. A little adjustment on Cyclosporine, but my counts look good. I'll continue resting a lot for now to recover and hopefully avoid anymore setbacks.

Day +35

I started feeling a little better on Monday and have been improving. My throat isn't bothersome anymore but it isn't completely gone yet. I'll keep taking Claritin D for congestion until everything clears up. All of my blood counts looked good this week. No medication adjustments. The chimerism testing takes about 2 weeks so it'll be a bit longer until the results come in.

Day +28

My blood counts were fine on Monday, just needed some more adjustment for Cyclosporine. I started getting sick on Monday night. Just a runny nose and bit of a sore throat. A friend I hung out with was just about over being sick, but not completely, and I forgot to ask about it. A strep swab was negative, so it's probably a virus of some sort. The mucus has been clear, and I don't feel as bad as I did on Tuesday. I've been taking Claritin D to help, but there's not much else to do except wait. I'm interested to see how long it will take to get over with such a new immune system. Other than that, I'm doing well. Slowly improving each day. I've also noticed a difference in how well I'm absorbing food. In addition to the normal tests next week, I'll get blood drawn for chimerism testing to see how different my new immune system is and which cord took.

Day +21

My white blood cells had dropped on Monday, and they didn't get all of the lab results they wanted, so they ordered another set of blood work. They got most of those results today and my WBC's were going back up. Dr. Burt thinks they may be fluctuating due to Cellcept so he lowered the dose. The Cyclosporine levels should come back on Monday and Dr. Burt may adjust that, as well. This isn't uncommon, which is why they monitor everything so closely for a while. My other counts are normal or still rising.

I'm feeling great. No drastic changes. My gut is slowly improving and my energy is still increasing each day.

Day +16

I had the impression that there would be more restrictions than I actually have. Avoid public swimming areas, taking out the trash (wear gloves if necessary), dust, construction sites and major home remodeling, gardening and major yardwork. They will check my vaccine titers at my one year follow up to see if I need to be reimmunized. No live vaccinations, and I have to avoid people who have had one recently. Wash my hands after being around pets, and before/after all of the typical things you can guess. Avoid sick people, major crowds, go to the movies, shopping, and restaurants during slower times. I can exercise and go to the gym when I feel up to it. No diet restrictions.

I'll stay on Cyclosporine and Cellcept for 9-12 months until the risk of graft rejection is gone. I'll also be on Acyclovir, an anti-viral, Diflucan, an anti-fungal, Bactrim, to protect against pneumocystosis, and Magnesium, for Cyclosporine. I'll have blood drawn every week for a month, every 2 weeks for 2 months, then monthly. I'll go back for the first follow up in 6 months.

The bone pain went away yesterday, as they said it would. Still a bit tired from everything but, other than that, I feel great. The stem cells will start healing the inflammation that I have left, and hopefully the stricture, so I should keep feeling better and better until then. I won't be posting as many updates from now on, but I'll make sure any relevant information is on here and update how I'm feeling as things keep healing.

Day +14

Dr. Burt came by early and I got to ask the last of the questions I had. It turns out there are even fewer restrictions than I was expecting. I got discharged, went back to the room to pack, then got a cab to the airport. I didn't even have to wear a mask if I didn't want to, but I did until we got to the gate. I wasn't sure if I'd be up for all of the walking so the airport had a wheel chair for me and took me to the terminal. I got to skip the check-in and security screening lines, and got pre-boarding and picked my seat first. All for no extra charge.

I feel about the same as yesterday. The bone pain is slightly better and I'm, understandably, pretty tired. It's been 2 months to the day since I left for Chicago. It was a great 2 months, but I'm glad to finally be home. I'll make another post soon, hopefully tomorrow, about my restrictions and how things will go from here. Time to go enjoy my bed!

Day +13

My white blood cells were 0.5 this morning. That means the stem cells have engrafted and everything will begin to recover and heal. They transfused 2 units of red blood cells since my hemoglobin was right around the threshold. No issues with that. The bone pain has gotten worse but that's because my bone marrow is working its hardest right now. It will slow down soon and the pain will be gone within 48 hours. I feel a bit more tired, but I didn't nap as much with everything going on today.

They drew blood again to check my counts after the blood transfusions. My white blood cells were actually up to 1.2, which was high enough to discharge me tonight, but I want to see Dr. Burt in person one more time before I go home so I decided to stay until morning. They took the PICC line out so my arm is completely free now. I already have the discharge paperwork, prescriptions, and flight booked for tomorrow.

Day +12

They're giving me more Magnesium regularly because Cyclosporine, one of the anti-rejection meds, "eats" it so my levels are low. I'll probably stay on oral Magnesium until I'm off of Cyclosporine. My platelets are still up considerably from the last transfusion. My hemoglobin is close to the transfusion threshold so I may need another before engraftment. We'll see. I'm feeling great. Not much bone pain the last two days, and I've actually gained weight since I was admitted. Still exercising each day, and I'm no more tired than I would expect.

Day +11

The bone pain got a little worse later last night so I took Tylenol, in addition to Ambian, to make sure I'd get to sleep. Nothing exciting today. Two of my PICC line lumens weren't returning blood, so they put a small amount of TPA in the lines to clear out the clots. What little of my hair grew back between getting my head shaved and getting Cytoxan started falling out, so I had them shave what they could. The nurse had to use a safety electric shaver, not a real razor, since I have low platelets and am neutropenic. It still got the job done.

Day +10

They gave me another platelet transfusion this morning. Benadryl and Tylenol beforehand again. About when the transfusion finished I noticed a couple hives so they gave more Benadryl. They spread a bit more and I started getting a rash so they gave Pepcid, IV Benadryl and Hydrocortisone. That knocked me out for a while and took care of it. Dr. Burt said to make sure I get washed platelets if I need another transfusion. Washed platelets are put in a different suspension to hopefully cut out what I'm reacting too. They don't normally do it because it adds another step to the process and cuts down on the time they have to perform the transfusion before it goes bad.

Dr. Burt said not to worry about Mucositis and that it rarely happens with this protocol. My throat could be irritated from a number of things and it actually feels a bit better. Noticed a bit more bone pain today but it's still not bad. Dr. Burt is still guessing Friday or Saturday for engraftment and I should start to feel even better after that.

Day +9

I noticed what feels like a bit of a knot in my throat when I swallow, and it got a bit scratchy. Mucositis is pretty common due to the chemotherapy killing off the mucosal lining leading to possible inflammation and ulcers. The scratchiness went away so we're just keeping an eye on it for now. My platelets were back down to 32 already so I'll probably get another transfusion tomorrow.

Day +8

They gave Benadryl and Tylenol again for premeds for the platelet transfusion. It took about half an hour, and I had one hive and a small rash a little after it finished. They gave me more Benadryl and that took care of it. It's expected to need blood transfusions in the time between the chemo and stem cell engraftment. Until my body starts producing cells on its own, my blood counts will keep dropping.

I started to notice a bit of bone pain, intermittently in my back and legs, which means the Neupogen is working and stimulating bone marrow production. They can give me something for the pain if it gets worse, but it's not bad.

Day +7

My hemoglobin was 8.5 and has been dropping so they transfused 2 units of red blood cells today. Benadryl and Tylenol for premeds, and everything went fine. They drew blood again this evening to check my platelets one more time since they were close to the threshold for transfusion this morning, as well. They're down to 25, and they want to keep them a bit higher than usual because of the Crohn's inflammation, so I'll be getting another transfusion in a little bit.

Day +6

They started double the Neupogen today. Just two jabs in the abdomen instead of one. Nothing else new, really. Still feeling pretty good, just tired.

Day +5

I started Neupogen this morning. They're going to double the dose since I was right at the weight threshold for different doses, and they decided to go with the higher one from now on. I got a bit of a rash on my legs that went away after about half an hour. They'll give Benadryl if it's ever more of an issue. I'm still feeling really well. No more tired than I would expect to be so I'm getting some exercise each day.

Day +4

Nothing terribly exciting today. My right eye got a little blurry for about an hour, but it went back to normal. Dr. Burt decided to stop Flagyl, at least for now, just in case that had anything to do with it. Still no reaction from Meropenem. I'll start Neupogen in the morning.

Day +3

They allergy tested me for Meropenem, the antibiotic they wanted to use. It was just a skin test, injecting a bit under the skin to see if a reaction occurs. That went fine, so they gave me a small dose of it and waited, then gave me the rest after seeing no reaction. I'm still feeling well, no more tired than usual.

Day +2

Nothing exciting today. My counts bottomed out, 0.1WBC and immeasurable neutrophils, so the only way to go is up. Still feeling pretty well.

Day +1

I'm neutropenic as of today (0.6 WBC). I actually feel even better. They gave me Carafate before meals to help calm my stomach and it works pretty well. They'll do allergy testing for Meropenem on Monday to see if they can use that instead of multiple other antibiotics to make things easier on my kidneys, but it'll be fine even if they can't. Nothing too exciting, which is good.

Day 0

I'm still not quite neutropenic. I should be by tomorrow or Sunday. I felt pretty good this morning. The same upset stomach but that's all. The nurse brought in the pump for the stem cell infusion, and gave me Tylenol, Benadryl, and Hydrocortisone for premeds. The cryogenicist came in with the two sets of frozen cord blood and thawed them when everything was ready. They asked if I wanted the chaplain to bless the stem cells before the infusion so I figured why turn down any possible good fortune.

The infusion itself went really well. The preservatives put a funny taste in your mouth but mints took care of that. The preservatives also make you excrete a cream corn smell from your lungs. That's not something I can notice, though. They monitor vitals throughout and for a little while after. I haven't started to get any hives today so they discontinued Benadryl. Now I just stay healthy and wait, probably about 2 weeks, for the stem cells to engraft and grow my new immune system. They'll do blood transfusions as needed, and I'll start Neupogen injections to stimulate stem cell production in a few days.

Day -1

I noticed a few hives again a little after I woke up so they gave me more Benadryl. My stomach didn't feel great but I still ate a bit for breakfast and pills down. Nothing special for today, just letting the chemo do its thing and keeping up with the rest of the medication. Dr. Burt said I'll probably be neutropenic tomorrow or the next day. It varies for everyone, so we'll have to see how it goes. They're keeping me on Benadryl regularly since the hives seem to crop up pretty regularly from the Campath left in my system. Its half-life is really long, so it can be expected to continue for a while.

A bit later, I started to feel flush and it felt like my heart rate picked up a bit. I still felt pretty okay, but Amy came by again to check in and they did an EKG, taking every precaution possible. It all went fine and I just relaxed and it all passed. That was the only real excitement for the day. They stopped Mesna and slowed IV fluids, and I actually got detached from the pump for a few hours. Tomorrow I'll get the stem cell infusion in the morning, then I just stay clean, healthy, and wait for it to engraft and my new immune system to grow.

Day -2

The nurse last night felt more comfortable with me skipping Ambian for the night because of everything that happened that day, but I still slept pretty well. The hives went away by the middle of the night and I was just left with some small rashes in the morning, which weren't bothersome. My stomach was a bit upset for breakfast so I didn't eat a lot, but I took all the pills I needed to and they stayed down. One of the allergy doctors came by early just to follow up and answer any questions. A different allergy doctor came by and explained the skin test they were going to do. It turned out that Dr. Burt had decided against worrying about it for now so they cancelled the test.

Dr. Burt decided to just give the Cytoxan as scheduled, not worrying about replacing the last Campath dose, and have that be the last of the chemo. He said it will still be enough, and they are content with using different antibiotics to cover the one they haven't tested for yet. He's the boss, so no argument here.

They gave the premeds and Cytoxan and that went pretty well. I noticed a couple of hives about halfway through the infusion so the nurse stopped it and paged Amy just to be on the safe side. They didn't spread much and I didn't feel any other symptoms. The allergists said it was possible they would come and go, so it was decided to just be that and they restarted the Cytoxan after making sure the hives didn't spread.

I got a dose of Marinol shortly after Cytoxan finished. I started to feel really out of it, basically like I was high, a bit later, and this was well after the effects of the Cytoxan premeds wore off. Amy came by and said it was probably from the Marinol. It may not have been working as much on nausea so those could have been its other effects. It didn't take too long to wear off, and I ate really well afterwards. Definitely the best reaction I've had to anything they've given me so far.

My stomach hasn't been feeling as well since the Marinol, but I got some more food and pills down. It's finally been hard keeping track of everything they've changed through the haze of the last few days. They have me on Vancomycin and Aztreonam still, and had given me a dose of Zolsyn and Tobramycin but discontinued those. I'll ask for clarification in the morning. Regardless, I'm still on plenty of prophylactic medication as my counts and immune system really start to go down. No chemo tomorrow, just the prophylactics and anti-rejection meds. That doesn't mean I won't end up stirring up some excitement, though, the way things have gone so far.

Day -3

I forgot to mention they gave me methylprednisolone after I woke up from the Demerol yesterday. After everything calmed down, I felt really good. Got a great night of sleep, and had a pretty good breakfast. The Marinol seems to help a good bit. Dr. Burt decided to start Cyclosporine and Cellcept, two anti-rejection drugs, today rather than tomorrow. The Cytoxan and premeds went fine again, and I still felt pretty good.

They gave Benadryl, Tylenol, and an extra steroid, I think methylprednisolone again, for premeds half an hour before. I stuck with saltine crackers as a snack to be on the safe side. They had Demerol ready in case, and some other drugs. I was mistaken yesterday about the Campath due to the side effects and the haze from all the drugs. It ran for 2 hours, not 1. I got through that perfectly fine, no symptoms. About 10 or 15 minutes after the Campath finished, I slowly started to get hives. It slowly got worse, and I started getting a sore throat, swollen tongue, tightened throat, tremors, and shortened breaths. They paged Dr. Burt and his nurse, Amy, and called in the attending allergist, and ended up giving me Hydrocortisone, more Benadryl, and Pepcid, to block histamine 2 receptors to make for certain the reaction would stop. Dr. Burt and Amy stayed until things started improving, and it took about 10 minutes. They gave another antibiotic, Tobramycin, as well.They made sure to get an Epipen and anything else bedside just in case. Dr. Burt has his nurse's pages about me forwarded to him, and said to call at any time overnight if anything changes.

They're holding Campath tomorrow. No word about what they'll do in place of it yet. They want to test me for another antibiotic they could ideally add, unrelated to the allergy piece, for another prophylactic measure. I'm allergic to Cefzil and the antibiotic is similar to Cephalosporin so they want to do a skin test and ramp it up to see how it would go. All of the stuff they've given me today, though, could interfere with a possible reaction to it and make the negative (conclusively indicating I'm not allergic) part of the test less certain. But, if I still reacted with a rash after all of this, it would definitely mean I'm allergic. If I can't have that one, there are others that can be used in its place.

A few hours after the major drugs for the major reaction wore off a bit, I slowly started to get more hives. The allergist said they can come and go and didn't want to give more Benadryl hoping for the sake of the antibiotic test, but Dr. Burt said to give more Benadryl, this time orally. It's helping a bit and nothing has gotten worse. They told the nurse to give me the Epipen if anything aside from hives occur. No issues with nausea today. The plan is to do everything else as normal tonight, and keep an eye out for any further of a reaction. I feel a little itchy now but it's definitely tolerable.

The reaction I had yesterday could have been part allergic, and it would only have gotten like this after my body had been exposed to Campath before. All of the extra drugs they gave me yesterday may have masked more of the reaction, too. I think I prefer today's reaction compared to yesterday's. We'll see how things go the rest of the night. My door is staying open and I'm right across from the nurses' station, and they'll be in throughout the night as usual. I'll see Dr. Burt in the morning and find out the new plan. This shouldn't mess up the transplant process, so they should be able to get it done one way or another.

Day -4

I took another Ambian and got an okay night's sleep. I woke up and vomited a few hours after I fell asleep, likely from the Cytoxin, so they gave me more Zofran and that took care of things. My electrolytes were a bit low, which is pretty normal for the transplant process, so they hung Magnesium and Potassium. No real changes in my blood counts at that point.

Same deal with the Ativan, Zofran, Decadron, and Cytoxan. That went by easily. A bit after Cytoxan finished, I ate half a sandwich before the Campath started, which ran for an hour. They gave me Benadryl and Tylenol half an hour before starting it. The Benadryl didn't knock me out, surprisingly, and it was double the dose I'm used to. They gave me more Lasix around that time. While the Campath was finishing up, I started becoming nauseous and vomited the snack. While the nurse was getting Compazine, another antiemetic that makes you a bit drowsy, and I vomited again. Compazine still wasn't enough and the nausea and vomiting persisted, so they gave me more Ativan. I was shaking and in pain all over, by that point, so they got me some heat packs and Demerol, a narcotic analgesic, which finally knocked me out. I think I was out for almost 2 hours and I felt so much better once I woke up.

I just took it easy after that, sipping on ice and water. After that stayed down, I nibbled on some saltine crackers and just stuck with that and am feeling alright. I just got more Lasix and the nurse hung another bag of Potassium. I've got the slew of antibiotics to take, and they gave me Marinol to try since marijuana relieved nausea for me. I'll take an Ambian in a bit and get ready for round 2 of fun tomorrow. Just two more days of Cytoxan and Campath. Hopefully, since we know how today went, they can be prepared for everything tomorrow if it goes similarly. I'll ask Dr. Burt in the morning.

Day -5

I asked for an Ambian, which is essentially routine for the patients here, so I could get decent sleep with the fluids they started, blood draw, vitals, and EKG they did overnight. They started Mesna at 8:00 to prevent hemorrhagic cystitis for the first premed, and it will run continually until the Cytoxan is out of my system. They started Ativan, Zofran, and Decadron, at 9:30. Ativan for anti-anxiety, Zofran for nausea, and Decadron for another antiemetic which augments the effect of Zofran to essentially make it stronger.

I started to feel a bit loopy from the Ativan a few minutes after, so they had me stay in the bed until we saw how I'd handle it. It didn't get any worse so they let me get up on my own. Dr. Burt signed off on the EKG and they hung Cytoxan a little after 10:00, which ran for 2 hours. It went fine and the 2 hours flew by. Still not feeling any side effects from it. A little bit later, they gave me Lasix to help flush everything out. I had to pee a lot for the next 3 hours or so, then it started to wear off a bit. My heart rate has been elevated so they lowered the next dose a bit.

They gave me Hibiclens to use daily while showering. It's very good at preventing infection even after you wash it off. The isolation floor is kept very dry, and a chemo side effect can be dry skin, so they gave me some different lotions to use. More Cytoxin tomorrow with the same premeds. I'll get Campath, another chemo, tomorrow, as well, with Benadryl and Tylenol for premeds for that.

Day -6

Again, nothing too exciting today. One of the physical therapists made it to me today. She went over some exercises to do, and said to walk for a bit a couple times a day, and use the exercise bike, and just get out of bed and do anything I can on bad days. They'll come by later in the week to check in.

The Fludarabine went fine again. They moved me down a floor to the isolation rooms after dinner, which is where the rest of Dr. Burt's patients are. They did another VRE swab since I changed rooms. The nurse went over the precautions I'll start taking as my immune system weakens. Basically wash your hands before and after you do anything.

They'll draw blood, do an EKG, and start IV fluids overnight in preparation for Cytoxan. The EKG is to get a baseline because Cytoxan can affect the heart. They'll give me Cytoxan at 10AM and premeds half an hour before. Cytoxan can cause kidney problems so they'll give Lasix, a diuretic, along with the fluids to keep everything flushing out. I'll go into more details tomorrow.

Day -7

Nothing exciting today. I slept alright once the nurse unplugged the bed for me. It automatically inflates/deflates based on pressure to prevent pressure ulcers (bedsores), and you can't turn that feature off (first world problems), but that's not something I have to worry about. I guess you're even less prone to pressure ulcers if the bed keeps you awake, too. Talk about engineering.

I took iron and one of the antibiotics this morning on an empty stomach, since they brought it pretty early, and ended up throwing up. No nausea since, though. Dr. Craig and Dr. Burt came by to check in. Dr. Burt said to just stop the iron to simplify things since it's pretty insignificant at this point. They put me down for physical therapy for some extra exercise but they're already overbooked. I don't think anyone turns down the offer, so it may be a few days before they get to me. I'll just do what I can on my own for now.

Same story with the Zofran and Fludarabine as yesterday. Haven't felt a thing. Still on the general diet, and a room hasn't opened up on the isolation floor. They're hoping one will tomorrow. I've still been feeling pretty well Crohn's-wise, so it looks like one more easy day tomorrow with Fludarabine and then I'll start Cytoxin on Sunday.

Conditioning, Day -8

I got my head shaved yesterday (for free. thank you, Scruples). I'm donating what I could to Locks of Love.

I went to Viand for dinner and got a delicious filet, and flourless chocolate cake with caramel ice cream for dessert. Yes, it was better than it sounds.

I checked in at 7:30 this morning, and just waited a bit until someone took me to my room. I'm not on the isolation floor yet. I'm one floor up where they still have most of the patients who are receiving chemo for whatever reason, and I would be able to stay here for the duration of the transplant if need be, so they'll move me before I'm really immunocompromised within a few days when a room opens up. The room I'm in is still really nice. Nice TV and a pretty good view. I couldn't get to the inputs to hook up my Xbox, so they brought in another TV and an extension cord/power strip I could use for it. Seriously? Everyone here really is too nice.

They drew blood for labs to get a baseline and check kidney and liver function before starting the chemo, Fludarabine, to make sure it would go through fine. One of the transplant nurses came by and went over most of the specifics of how things will go until the stem cells are infused. They're keeping me on a general diet for now and we'll deal with nausea preventing me from eating enough if the issue arises.

They gave me Zofran for nausea half an hour before starting the Fludarabine. It's usually one of the more well tolerated chemos, and it ran for just half an hour. I haven't noticed a single side effect yet, and my dinner went down perfectly fine afterwards. I'll get Fludarabine for 2 more days, so that shouldn't be too bad, and I just started on Cipro, Flagyl, and Acyclovir prophylactically. They'll draw blood sometime overnight so Dr. Burt has the results first thing in the morning when he comes by to check in. So far so good.

PICC Line Placement

I had to wait about an hour before they were ready for me. They cleaned my right arm very thoroughly and then the doctor came in to do an ultrasound to find the right vein. He gave a shot of local anesthesia and I barely felt anything after that. The wire went in on the inside of the bicep. It was a bit strange to feel the catheter going in, but there wasn't any pain. The doctor took images while inserting the line to make sure it followed the vein and it was where he wanted it, and he was done after about 20-30 minutes from when I got on the table. I don't need to use the lines until Thursday so they cleaned and closed off the three lumens and put a sleeve over it to keep it out of the way. My arm is still sore, but it's not very restrictive.

Just two more days! I'm getting my head shaved on Wednesday then deciding what I want to do for my last meal out.

Small Delay

It turns out the cord blood is still being processed and won't ship until Wednesday, the 17th. Now I'll be admitted and start chemo on the 18th. I think the reason why they won't start before having the cord blood is because they don't want to do the chemo conditioning and risk the cord blood not getting there in time due to whatever reason. I'll be discharged between September 9th and 13th depending on how quickly I engraft with the cord blood and recover.

One More Week

I'm still doing really well. I finished the antibiotics and did the Cimzia injection on Thursday. It should help for about a week more, right up until the transplant starts. I went to the Shedd Aquarium (skip it if you've been to a good aquarium before), Lincoln Park Zoo (great scenery at the park plus it's free), Adler Planetarium (great, especially if you like astronomy/science), Too Much Light Makes the Baby Go Blind (amazing art/comedy show, 30 plays in 60 minutes, a must see), and the Museum of Science and Industry (awesome - tons of interesting exhibits) in the last week.

I'll get the PICC line placed on Monday, get my head shaved, then decide where I want to go for my last meal out. I'll be admitted the next morning, and the chemo will start the day after. I'll post the next update after the PICC line is placed.

Still Doing Well

Just a quick update. I'm still feeling really good, probably the best I have this year. I'll be done with the antibiotics on Wednesday or Thursday, and I'll do Cimzia on Thursday unless Dr. Craig or Dr. Burt say not to when I get in touch with them tomorrow. Just over 2 weeks left until the transplant so I'll be doing tourist things to see as much of Chicago as I can before then.

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.

Evaluation

I saw Dr. Craig and Dr. Burt today. The results of my CT enterography and colonoscopy showed very active Crohn's in the colon. They both agreed that I have severe enough Crohn's, and am healthy enough otherwise, to make a good candidate for the stem cell transplant. Dr. Burt said he wanted to do an allogeneic transplant, using umbilical cord blood stem cells, rather than an autologous transplant, using my own. The benefit would be that they come from a source without immunodeficiencies, specifically involvement with Crohn's, lowering the chance of and delaying possible relapse. As of now, Dr. Burt has only used umbilical cord blood stem cells in the transplant with one Crohn's patient.

The financial team at Northwestern will draft a letter and submit my case to my insurance company to try to get the transplant approved. Dr. Burt said CareFirst has paid for transplants more often than not, but it can easily be a few months before they reach a decision. Back home to wait for now.