+30 days Post Transplant Check - My Week in Review

Up and Down Energy - For the most part my energy levels are pretty good.  I haven't had to have a nap during the day in the past week but it is hard to know whether that is the steroids or me getting stronger (I will go with the getting stronger).  I still have my weak days though.  Sunday I was feeling strong, Amy and I did a bunch of work in the apartment.  I really wanted to finish what I started so I might have pushed myself a little bit (much to the dismay of Amy :) ) but by the time I was done I was pretty much wiped.  The nice thing though is as I talked about my much slower lifestyle in yesterday's post when I am tired I can just take the day to rest.  My brother actually called me a retired 30 year old! Although who can't say they wouldn't want to retire at 30, screw freedom 55 ;)  Wednesday I was really tired as well but I know that that is just part of the recovery process.  My body is still rebuilding itself from getting destroyed so I am sure that has a lot to do with lower energy, your body is working super hard to rebuild. 

Tuesday Appt - Tuesday's appointment went pretty well.  They tapered my steroid dose down a little bit which is good news.  It was also the fastest appointment day I have had in the past year.  My platelets had fallen below 100 to 75 which alarmed Amy and I at first.  After talking to the oncologist though he assured us not to worry and that it was completely normal for them to drop this early in the recovery.  For some reason when the body is fighting GVHD the bone marrow can become suppressed.  The doctor told us he would let us know when it was time to be worried but now wasn't that time.  So much is happening inside my body that the counts are destined to move around.  We were really excited (well I am sure Amy was more anxious) to see Friday's blood results. 

Friday Check up - Friday's appointment was officially Day +30 so I have hit a pretty big milestone that I was pretty excited to hit.  What is crazy is some people can still be in the hospital at day 30 and I was released two weeks ago.  I count my blessed stars for that each day.  For the most part my check up today went pretty good.  Most of my blood counts were good.  Unfortunately my platelets didn't come up any, they went down a bit. The doctors said not to worry because some of the drugs I am on suppress my platelets so they have stopped me taking those to see if that is in fact the case.  On tuesday we shall find out if it is the antibiotic and antiviral keeping them down or if they need to start looking for other reasons.  They said nothing to worry about right now.  On tuesday they reduced my steroid levels but this week my GVHD flared up a fair bit (especially on my face) so they have raised the steroid levels again to last weeks levels.  I am happy that this will get rid of my ichy forhead hopefully.  Plus I will take skin over organ gvhd anyday.  We asked what level my gvhd is and the doctor told us I have level 2 skin gvhd but only mild overall gvhd. That was a little bit of a relief to hear that.  The next big milestone is day 60 when they stick the needle back into the bone marrow to find out if I am still in remission and what percentage of my bone marrow is the donors.  Until then I just keep healing and getting better :)

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Inspiration for my posts - Everyone seems to be really liking my posts these days.  Keep the comments coming because I love hearing them.  Feel free to pass any post that you like along to anyone you like.  I wanted to take a minute to reach out to everyone though for help.  A lot of the inspiration and ideas I get from posting actually comes from you.  When you ask questions it usually sparks an idea that snowballs.  This past week I was asked two questions that have snowballed into 8 different post ideas.  So please feel free to ask any questions that you are curious about (I am an open book) through commenting, emailing me, or facebooking me.  I will answer you directly but don't be surprised if you see a post that delves into the topic soon after ;)

A Idea for Sunday - I have always taken Sunday's off of posting for two reasons.  First, I wasn't sure how much everyone would read them and second I just didn't want to get overwhelmed and be writing every day of the week.  I have actually come up with an idea for Sunday posting that I wanted to gauge what everyone thought.  I would post a quote or story that we could all have a discussion about.  This will only work if everyone comments and we hold a blog dialogue.  I would check throughout the day and comment and be part of the discussion but it would need all of you to join in as well.  So I would love to hear what you think, would you be interested in a weekly Sunday discussion??  Please comment and let me know.  I think it could be a lot of fun! :)



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