Post Transplant (Week 11)

*(Day +69), Monday, (July 19th) was a pretty crummy day. My mom and I both woke up feeling like we had a cold. I had an appointment at the BMT clinic in the morning and ended up being there for several hours because they were super busy. I know I've mentioned before that there are a few kids here going through transplant with a disease called EB. EB is super rare, almost as rare as my disease and not many transplants have been done for EB. EB patients from all over come here to get transplanted because of their expertise. On Monday there was a doctor from the UK who came in town to meet with the EB kids and brought a film crew who was shooting for a documentary about EB. At first I didn't like the idea of them doing a documentary about EB because EB is such a complex disease. I don't know much about it but I do know that the EB patients are mostly wrapped from head to toe in mummy-like bandages because the disease causes your skin to look like its burnt/peeling off. I honestly believe it's the most painful disease there is. I could easily see a program about the disease turning into a sort of "freak-show/let's get good ratings" type things. However, I watched the camera man interact with one of the EB patients and I could tell he actually genuinely cared about learning more about this rare disease. Before even starting the shoot, he sat down with the little boy and started building a relationship. He even let the little boy play with his camera. I overheard him ask the boy if he was ever teased. The little boy responded by asking the camera man if HE was ever teased. The camera man asked "what for?" and the little boy said "your voice". Apparently the little boy thought his UK accent was comical. .

*(Day +70), Tuesday, (July 20th) was a pretty uneventful day. I had to go to the BMT clinic in the morning to get platelets. While I was in clinic I finally met another patient who is around my age. We had been talking on facebook but she didn't get out of the hospital until now. I'm hoping we'll both be feeling well soon so that we can hang out and do stuff. I spent the rest of the day watching TV and resting because I'm fighting some sort of bug, I think it's just a cold because I haven't had any fevers. My mom and my brother went to check out some local lakes. There are tons of lakes around this are and they are beautiful. I'm hoping to get out and see them soon. Maybe pack a picnic or lay out for an afternoon to get some sun. One exciting thing of the day: exactly one month from now will be my +100 day mark. Then about a week after that I get to come home. I can't believe I've already been here since Mid-April and that I'm already a month away from coming home. I'm ready to get back to my life!

*(Day +71), Wednesday, (July 21st) was a torturous day. Kidding. Not really. Anyone who has ever had an ultrasound knows my pain. My doctors ordered an ultrasound as a precaution and for the exam, you have to have a full bladder. Many people don't know this, but as a child my biggest fear in life was being somewhere without a bathroom. I'm not even kidding. I had enormous anxiety about it. Over time I got over it but needless to say, I never like to be in a situation where I have to pee...but can't. This is why I hate ultrasounds. My appointment was for 3:00 so I drank two huge glasses of ice tea at 2:15 and was done by 2:30. I got to my appointment and already felt like I could pee. The lady starts the exam which consists of her putting cold jelly all over my stomach and pushing on my bladder with that tool that lets her see everything on a screen. Then she turns to me and tells me my bladder is empty. I wanted to cry. I spent the next 45 minutes waiting to see if my bladder would fill. According to her, it didn't. She tells me this as my legs are crossed and my feet are dancing to keep from peeing. She made me leave, drink more water, and come back at 4:30. I danced back to her exam room at 4:30 and THANKFULLY my bladder was full enough for her. The exam took ten painful, bladder pushing minutes and just when I thought I would be able to leave and go to the bathroom....she told me she was just a tech and would have to go show the pictures to the radiologist to make sure she got all the right pictures taken. That happened to take 30 minutes. In the end, I had to wait close to 3 hours to pee. I was not a happy camper.

*(Day +72), Thursday, (July 22nd) was a pretty boring day. I basically rested and watched TV all day while my mom worked and my brother played on his new XBOX 360. For dinner my mom picked us up Jimmy Johns, which I hadn't had in a loooong time. It reminded me of home. After dinner we went downstairs to play bingo. Every thursday, the Ronald McDonald House hosts bingo night. It's a pretty big deal. They have a real bingo machine and tons of prizes that are actually pretty cool. I didn't feel like picking anything out so every time I won, I would give the card to my brother. By the end of the game my brother ended up with five prizes.

*(Day +73), Friday, (July 23rd) was a nice day. I had an appointment in the BMT clinic in the morning to get platelets. For lunch we went to this italian deli place that was suggested to us by one of the nurses in clinic. It turned out to be really good. I had a ham, swiss and dijon mustard panini on focaccia with a side of caesar salad. It was delicious. My brother got the mac and cheese and I stole a bite, it was also really good. It was that good, homemade mac and cheese done right. If we go back, I'd probably get that instead. Afterwards we drove along some of the lakes. Minneapolis is such a strange city. There are tons of bike trails and outdoorsy-type things to do. Which seems strange because a majority of the year it's too cold to utilize them. But during the summer there are bikers everywhere and portions of the lake are designated for swimming. They even have actual beaches. WIth sand. I really want to go down to one of the beaches for a day. I can't swim in the water because of the germs but I could at least lay out in the sand and get some sun. Who would have thought you could lay out on a beach....in Minneapolis?

*(Day +74), Saturday, (July 24th) was a frustrating day. I couldn't sleep the night before so I was not happy when my mom woke me up at 10:30 to go downstairs for brunch. Thankfully the food was good but I climbed back into bed as soon as possible afterwards. We had planned to go to this contest sponsored by Red Bull where teams build these boat/plane things and run them off a ramp into the water but when I woke up, I wasn't feeling well. I'm starting to get really frustrated because I want to get out and do things but I'm also trying to be responsible and I knew that it wouldn't be a good idea for my body for me to push myself that much. I've been trying to act like I feel well because my mom is going stir crazy and wants to go out every day and do at least one thing a day but I just can't keep up. I feel bad that I can't but I don't want to jeopardize my recovery. I did get out for dinner. There are many things I miss about Kansas City. My friends, family, highways that make sense, good BBQ and mexican food among other things. My mom has tried and failed a few times at trying to find mexican food that is as good as the mexican food you can find in KC. We decided to try again and checked out a place called Pepitos. It turned out to be pretty good. The salsa was fresh and the chips were decent. It satisfied my mexican food craving but it definitely didn't compare to KC mexican food. Oh, how I miss home.

*(Day +75), Sunday, (July 25th) was a boring day. I wasn't feeling very well so I rested all day. I feel like I have a cold or something. My throat is sore and I keep getting headaches. So far, no fever. Good news is that my blood sugars have been better because we're decreasing my steroids so hopefully I won't have to get insulin for much longer. It's quite a pain to have to check my blood sugar every time i eat, then figure out how many carbs I eat, then turn that into units of insulin and then inject myself with the insulin. It's such a long process just to eat. The only bright side to that is that I've stopped snacking because I'm too lazy to do all of that just to grab a handful of chex mix.

*Reason of the Week: This past week I've been feeling pretty crummy and as a result, I haven't wanted to get out of bed much. Because my brother, Jameson, is in town, he's sort of become my slave. I've been asking him to do favors like microwave food for me, grab clothes from upstairs, etc. He never complains or says no. Great brothers are always a reason to smile (RTS).