Wednesday, September 30, 2009

Clinic Update: 1 Year, 9 Months, 10 Days Post Transplant

Dear Reader,

I went to clinic today! I have come to rather enjoy going, it is my social outing of the week. Now I have 3 days of social outing and it is so wonderful!

One day is clinic day. Every week I must go to clinic to get my needle in my port changed. I almost always get to see Agent 99 (my regular clinic nurse) and Patch (my doctor). Sometimes, other visitors also stop by. This time, our extra visitor was The Bag Lady, our bone marrow transplant coordinator. She just stopped by to show off her bag to us. One of her patients and her crazy mother made it for her and it says "Got Cells?" on it and has a bunch of buttons that are supposed to be cells, and the "cells" have the names of what they are next to them. There is also a bone patch on it with the word "Marrow" written on it. It is made very nice, Mom and I did a great job!

The other two days are the days my brother has soccer practice. I go with to pick him up. I just started to do this. I bring Piggy with me to work on her training as a therapy dog. She has to know how to sit, lay down, stay, and come and be able to do them with distractions. She also has to know to walk on a leash and not to greet anyone who doesn't want her to greet them. I'm also trying to teach her to keep her tongue to herself, but she is very friendly and affectionate. So, me and Piggy go and practice being a therapy "team" at soccer practice, and I really like it! Piggy and I are both very social.

Another day of the week, my home-bound teacher, Rosetta Stone, comes. I don't call this a social outing though because I don't go anywhere.

Anyway, today was clinic. Here is the low-down.....

I'm seem to be doing much better! I have more energy, and I got to lower my steroids by 0.5mg a day. My creatinine (kidney function number/level) went down a whole bunch too! That was so good. It is 2.08 now. It is still quite high, but a lot lower than it was, it doesn't only go this low unless I'm at the hospital. A good, normal creatinine number would be between 0.5 and 1. So, I'm getting closer.

Also, I lost that bit of weight I gained while at the hospital. Three people have told me that I am skinny today. I attribute a lot of it to the new clothes that my mom got me. My clothes actually fit me today. Last year at around this time of year, I was very swollen from the steroids and my kidney function not being good. I was a size 15 pants, I think. Now I'm a size 9 (I doubt I will ever be this size again) which is the same size as Brother. Brother shops in the girls department sometimes..... He likes the tighter fitting clothes and they don't have those for boys where I live. Some may call him strange, others may call him secure, I just call him Brother.

I seem to be bruising a bit more. I found quite a few new bruises on me during this past week and I don't really know what caused them. Still, I always have bruises all over me, because of my ITP, so it didn't really worry anyone. My platelets are around 110, so we aren't going to worry yet.

I'm feeling a lot better though, and I seriously hope it keeps up.
~Miss E.


  1. Congratulations on your good news! Enjoy your social outings and please post a photo of "Piggy" when you have the chance.
    Love, Your #1 Fan

  2. Great News! It sounds like you are doing much better. We would love to see a photo of Piggy too. Ohhhh Brother!

  3. Glad to hear that you are feeling better, and that you are enjoying your social outings!!

  4. I'm glad to hear you're feeling better and your social life has improved but not where you want it yet. Why does Brother sometimes shop in girls clothing section? To show off his athletic body I'm sure. He has to be very confident of himself. I'm sure the Bag for Baglady is beautiful, and I'm sure
    she appreciates it very much. I hope your mom and dad are doing fine and you keep improving.

    Love, Uncle Ollie