a·plas·tic a·ne·mi·a/āˈplastik əˈnēmēə/

Noun: Deficiency of all types of blood cells caused by failure of bone marrow development

Tuesday, October 25, 2011

Day 90

I am so excited to be 3 months post transplant!  I only have 10 more days until my first goal of Day 100.  I had a doctor's appointment today and my counts were a little low.  Nothing to be too concerned about, but they all seem to be following a declining trend.  I'm not too worried because this has happened before.  The most concerning thing was that ALL of my counts were low today.  Usually it is just 1 or 2.  In addition, my liver tests were high.  Not too bad for a couple, but they ended up doing extra tests (indirect and direct bilirubin) to make sure that I wasn't getting graft vs host disease in my liver.  The extra tests came back ok, so the doctors are worried.   I know I worry way more than my doctor's do, but that is what happens when you understand the significance of your blood work and possibly what it can mean.  Good news though, my kidney tests are FINALLY back to normal!

Once I get to Day 100 and my counts are stable and I am healthy, I can go outside a 30 min radius from the hospital.  So, I want to go spend some time with my parents.  Nothing is set in stone, but my MIL and FIL got a little upset that I hadn't discussed this with them.  I hadn't even discussed it with my husband yet!   Anyway, I put their mind at ease, letting them know that I had thought everything through, and that I was going to try things out by staying a weekend and then deciding if it was a good idea.   I have to keep in mind that the hospital is going to be 2.5 hours away and need to ensure that I have plans in place for Kellan if he or I get sick.   So, still nothing finalized and I definitely want to get my Day 100 test results back before anything gets decided.

Anyway, on to another topic, I've noticed over the last couple of days that Kellan is getting separation anxiety.  I will walk out of the room for just a second and he starts wailing until I come back.  Gotta work more on his object permanence so this habit does continue :)

I get to go out tomorrow with my friends, Matt and Stephanie!  I'm so excited to get a chance to get out of the house!

Friday, October 21, 2011

Day 86 - Reminiscing

I just got done speaking to an old friend from college a little while ago.  I love thinking about that time.  College was one of my favorite parts of life for many reasons.  First, you get independence for the first time.  Nobody telling you what to do or where to be.  Then you have all the wonderful friends you meet.  I met my best friends in college.  In my life, I have met many people from all over, but my friends from college have always been a constant in my life.  You grow and learn so much during those years.  You begin to form your own identity.  Being from a small town in the midwest, you kind of tend to get labeled by who your parents are, or who your siblings were, or where you lived and what kind of car you had.  When I went to college, I got to start all over.  Nobody knew me and I loved it!  I just love thinking about all the fun times I had and sometimes wish I could go back in time and just stay there.  But, eventually we all grow up, become adults, get jobs, have families.  Life is so very short.  Thinking back, I just never could've imagined the topics that I speak to my friends about now.  It is no longer, what party are we going to or what time are you taking that history class.  Now its did you know so and so has this condition, or so and so got divorced, or where is so and so, I haven't spoken or seen them in 10 years.  Its amazing how life changes in such a short time. 

My labs looked pretty good this week.  My kidney tests are nearly normal (1.04, the normal range is .6-1.0).  My blood counts were good.  Day 100 is looking better and better!  Only 14 more days!

Thanks for all your support and prayers. Please continue to keep me and my family in your thoughts and prayers. Even after Day 100, I still have a long recovery period.  The first 100 days after transplant are the most critical, but there is still only a 50-60% survival rate through Day 365/Year 1.

Sunday, October 16, 2011

Day 81 - Hair News

I am happy to report that my eyelashes and eyebrows have started growing back!  I didn't lose them all, but they were getting pretty sparse.  Hopefully my hair on my head will begin growing back soon.  Who knew how much a bald head affected your overall temperature.  I have been just freezing since I lost it.

Things are going really well.  I only have 19 more days until Day 100.  It is coming up so soon and I am getting so excited!

Tuesday, October 11, 2011

Day 76 And All Good News!

Went to the doctor today and everything was wonderful!  My labs are almost all normal!  Everything is stable and good. 

For my fellow aplastic anemia people, what have you heard or experienced at John Hopkins or University of Maryland.  I need to choose between the 2 and they are both equidistant from where we are going next.  I've heard good things about both places.

Monday, October 10, 2011

Day 75!

Wow! 3/4 of the way to Day 100!  I thought that Day 100 would never get here and now it is almost upon us!

Today marked a milestone...I got to discontinue one of my prophylactic medications, the antifungal that is assisting in my kidney tests to be high.  I go to the doctor tomorrow, so lets pray that everything remains good with my labs and symptoms and I don't have to go back on it.

Things have been going really well the past week.  I have been extremely fatigued as the doctor wants me to be "more active."   He told me last week that I should be walking a couple miles a day...silly doctor, I wouldn't even do that if I didn't have aplastic anemia!  I know I should be getting more exercise, but it is hard, when I am so tired from taking care of the baby.  I have had to start taking care of Kellan a lot more because of my in-laws' situation, so I have basically went from helping take care of Kellan to almost taking care of him completely.  It is hard, but someone has to do it.  I am very thankful that my mom has been able to come and help a couple of days a week.  She lives about 2.5 hours away, so it is quite a trek. 

I'm keeping my fingers crossed that the doctor will give me the ok to go visit my husband in Hawaii shortly after Day 100.  They are so worried about me catching the flu on the plane.  Why'd they give me that darn flu shot then?  Oh well, I'm pretty sure I can convince them eventually.  I just miss him so much!

As always, thank you for keeping me in your thoughts and prayers.  Please feel free to share my blog with friends and family.

Thursday, October 6, 2011

Day 71

Its amazing what a little bit of sunshine and getting outdoors can do for you!

This last week has been the most difficult so far, not for symptoms, but emotionally.  This journey is mentally and emotionally draining, more than physically draining for me.  Though, they all are inter-related since you are physically drained from being emotionally and mentally drained.  Everyday this past week, I have had to tell myself over and over again, I just got to get through today.

Anyway, I feel like I am getting back to myself again.  I even laughed a couple of times today!  I got so much stuff done today even though I was tired from Kellan having a bad night last night (I was up at 2 am and probably only got a half hour sleep between then and 7:30 when he got up).  I felt so accompllished!  My day didn't start that way, but I'm glad it ended the way it did. 

I am happy to say, that I am looking forward to tomorrow!

Monday, October 3, 2011

Saturday, October 1, 2011

Day 66

Two-thirds of the way to Day 100!  I feel like I'm doing great too.  My biopsy from my GI track came back negative for GVHD, but positive for Barrett's esophagus, a condition that could become cancerous later on.  Oh well, it is just from acid leaking into my esophagus weakening that tissue.  They put me on Prilosec for it. 

Had a pretty productive talk with the doctor on Friday.  They are always so vague when you ask a question, but I forced an answer out them finally regarding my status.  He thinks that I am doing very well and though he cannot say with certainty that I can leave at Day 100, he does not think I will need to be here for 6 months.  Ok, so at least we got it narrowed down from 3-6 months :)

My counts are doing much better.  Last week, I must've just had a mild "bug" or something.  Even my kidney tests came back good.  They are only .12 away from being normal again!  Hallelujah!  Now we have to watch my liver tests, they keep going up, but only slightly. 

Today was a pretty sad day though.  We said good bye to my sister-in-law and brother-in-law.  They were such awesome helpers through these first 2-3 months.  Thanks Anita and Chris for everything!  Safe travels to you as you head to your next big adventure in life!

Everyone has talked me out of my pumpkin fundraiser now.  Guess I should've saw that one coming.  I personally thought it was a good idea, but the doctors don't think so and neither does my mother-in-law.  So scrap that and on to the next idea.  Taking suggestions...

As always, thank you for keeping us in your thoughts and prayers!