Post Transplant (Week 8)

*(Day +48), Monday, (June 28th) was like it never happened. I woke up long enough to swallow pills and eat at some point. Still battling fevers, muscle pains, stomach pains and a killer headache. The only excitement was me waking up in the middle of the night to throw up everywhere. Not pleasant.

*(Day +49), Tuesday, (June 29th) has been another crummy day. I'm still on pain meds for my headache. It makes it impossible to do anything. I'm sensitive to light, sound, motion and just about everything else. Thankfully my stomach is doing better and I was able to catch up on all of my pills and I even ate two meals. The doctors have decided they want to do a spinal tap tomorrow because they think I might have Meningitis. If I do and they catch it now, they should be able to treat it. Both of my parents don't want me to do it because of my bleeding risk and because spinal taps are dangerous for anyone, especially with my heightened bleeding risk. All the other doctors (except one) think I should do it. Including my doctor, Dr. Tolar. I've decided I'm going to sleep on it and make the decision in the morning. If I say yes, I might not be online for awhile so don't freak out!

*(Day +50), Wednesday, (June 30th) has been a busy day. I had to get another bone marrow biopsy. If you don't know what a bone marrow biopsy is or you want to job your memory, look back to week five. It's the June 22th post. After that, I immediately got a spinal tap. I was a little worried because I've never had one before and I've heard it's pretty risky and there's a chance of internal bleeding (which is a bigger risk for me because of my inability to clot well). They wanted to do a spinal tap because my headache, stomach pain and fever have come back and they think I might have meningitis. My mom and dad said no. The doctors all said yes except for one. I ended up saying yes. I'm glad I did because the early results are already showing that it is meningitis. Now we have to wait a few more days for the results that will tell us whether is bacterial or viral. For my situation (being immunocompromised) we want the results to be bacterial because then it will respond to meds. If it's viral, we have to let it run its course and hope everything works out. I'm very glad that we ended up doing the spinal tap because we got some answers. Oh, the joys of being 18 and able to make your own decisions.My back was pretty sore. I still had a little soreness from my last biopsy, plus the new one and the spinal tap so I spent the morning resting. Our care partner, Irene came by to sit with my mom during the surgery because we were all nervous. She also brought bagels from my favorite place here- bruegger's bagels. I slept more in the afternoon. For dinner, my mom went to this restaurant called Kafe 421. We went there once before I was admitted and it was really good. This time I tried one of their pastas and it was delicious. Definitely better than cafeteria food. I was pretty cranky but ended up feeling much better after showering. That's about it. Just waiting for answers and waiting to get better so I can get out of here. On a happy note, Today is +50, which means I'm halfway done! Technically I'm more than halfway because I've been here since late April and I was admitted to the hospital on April 30th. Close enough.

*(Day +51), Thursday, (July 1st) has been on okay day. Highlight of the day: My red blood cells (hemoglobin) was 9.2 so I don't need a red blood cell transfusion soon (normal is 11.7-17.7) so I'm getting close to normal. My Platelets were 33,000, which is still low but very close to my personal best in five years! More excitingly, my ANC was 4600 (normal is 1600-8300). Yesterday I was 3800 so I'm improving vastly and I'm in the normal range! My white blood cell count was 5.5 (normal is 4.0-11.0) so I'm normal there also! I know this is a bunch of jibberish for some but it basically means the donor cells normally producing three out of the four important things in your body. Unfortunately, my counts came back saying that my iron and kidney functions are not right. They ran some tests today and we'll know them in a few days. My spinal tap also revealed that it does look like I have meningitis. I'm on antibiotics until we get the results back. My fever has gone down so the antibiotics seem to be working and nobody seems to think it's going to be a huge deal to treat it. I'm obviously a little nervous to get this while I don't have much of an immune system. These next few days will be very hard for me because I'm anxious to see what's going to happen. I pray that my good luck continues. This also explains my headaches. I'm going to be in the hospital longer than we expected but I'm hoping to be out sometime this weekend/early next. I can't believe It's already July 1st. I've been here for more than two months.

*(Day +52),Friday, (July 2nd) was one of those days that I just wish never happened because it was just miserable and mundane. Good news: My morning counts were all still good or better and we found out that my cellularity is 60%. Which is perfectly normal. It's actually the same cellularity as my doctor! Bad news: My kidney levels are a little high so the kidney team is going to look at my tests and try to figure out how to lower it. My headache continued to get worse and my fluids were increased so I gained more water weight, which caused me to get even more bloated and it triggered my leg pains. I couldn't even stand without using my arms because of the pressure on the tops of my feet and the tightness in my back lower legs. I spent the day just resting and feeling miserable.

*(Day +53),Saturday, (July 3rd) was another bad day. I woke up to go for a CT scan to look at my head. They found fluid, which is normal but they did find more than last time. They also took a chest x-ray that saw some 'fluffiness' in my upper left lobe, indicating that I also have pneumonia. The doctors added another antibiotics to start fighting that too. My blood sugar was also really crazy all day. We don't really know why. The endocrine team gave us a scale to follow but the scale is messed up because I keep going from being hyperglycemic to hypoglycemic in a matter of minutes or hours. I mostly slept all day because my body was all messed up from my blood sugars and I felt awful.

*(Day +54),Sunday, (July 4th) was a bad day. I woke up from a really bad night of sleep because my headache was driving me crazy. During the night the docs sent in these 'compression stockings' for me to try because of the swelling in my feet and legs. They are essentially these really really really tight knee-high socks that hurt like a (you know what) to put on because it's like you're squeezing your skin even tighter. if you can imagine such a pain. I was groggy and somewhat drugged up at the time so my mom had to put them on for me and I whined the whole time. At one point I even said 'mom, I am NOT your friend right now'. She thought it was funny. I was serious. The day was a little better, my counts are all normal and/or rising. Still excited about my great cellularity! I haven't had any stomach problems lately and my head is feeling more manageable. Hopefully once the antibiotics fight off the Meningitis and the Pneumonia then my headaches will go away for good.

Sorry for the slacking on blogging! I've been very drowsy with the headache and I've been having eye problems like light sensitivity and blood in my eyes so I haven't been online as much. Please keep reading and comment so I know blogging is worth it!

**Reason on the Week: When deciding on whether or not to do a spinal tap (a major medical decision), I was able to make my own decision. Turns out I made the right one. Being 18 and having the opportunity to have control over my own medical decisions feels good and empowering. Being an adult is always a reason to smile (RTS).