Two and a half years later…

I had a pretty awesome 2013.  Josiah is in kindergarten and Jayden is in second grade. They both are doing so great in school and are becoming such good little boys.  Jay and I are so proud of them every day.  I can’t even begin to say how happy we are for who those two little guys are.  We have enjoyed so many fun things this past year, and we are so blessed for all of this extra time that my lungs have provided.

Even though my lungs are doing fairly well, I must be honest that I am still guilty of thinking of negative things these days.  One thing I always said when I started this blog YEARS ago when I first got sick was that I refused to not be honest about my feelings.  If I am going to write my blogs, I am going to be honest and say what I feel and not what others would want me to say.  I am human, I bleed red like everyone else, and I am full of emotions sometimes.

I worry often about life expectancy. Lung transplant statistics show that 50% of people don’t make it past the 5 year mark.  And it just goes down from there.  Now, I have so much hope that they will continue to develop new anti-rejection medications and new ways for all of the medications that I take to not be so toxic on my organs.  I keep praying that the steroids and anti-rejection medications will keep tricking my body into thinking that I don’t have foreign lungs, and therefore will not reject them.  But, the truth is, I don’t have any control over any of that.  I can’t do anything more to change the outcome of what will happen.  I am following all of my doctor’s orders, taking all of my medications, and trying to keep my body as healthy as possible.  Other than that, my life is in God’s hands.  It is so bittersweet being 2 1/2 years post lung transplant because I am so blessed and happy to have made it this far, but the farther I go out, the closer I get to the statistics that scare me so much.  Make sense?  🙂

This past year, I had an CT scan which showed that the bottom of my new lungs had some air trapping going on.  We have no idea what it is, but it is scary thinking that maybe LAM is developing again in these lungs too!  We did some testing to see if maybe the damage was being caused by acid in the stomach, but those tests were negative.  So, we will just keep an eye on it and see what my lungs do going forward.  Another thing that I totally cannot control.  Only God can.

This year, I also underwent a hysterectomy.  We did this procedure due to complications from another condition I have called PCOS, (Polycystic Ovarian Syndrome) which was causing excessive bleeding and also symptoms of anemia such as fatigue, weakness, etc., among other things.  Of course further child bearing has not been an option because of medications I take and the fact that my lung disease is worsened by pregnancy.  It was very hard to have the hysterectomy done because I always wanted a huge family of 4-5 children.  This surgery was so final to me.  It was tough to swallow, but had to be done.  A miracle did happen in all of this, though.  When I went in for my follow up, my OB/GYN walked in almost in tears.  She is an amazing Christian doctor and is so very special to me.  She said that the pathology report came back and showed an overgrowth of precancerous cells in my uterus.  She said that due to my PCOS and general health history, she had no doubt in her mind that I would have had full blown uterine cancer in no time.  It was a blessing and a miracle that I decided based on her recommendation to have the procedure done.  Again, another thing that was out of my control, but as always, God protected me and saved me from whatever could have happened.

Life is just a captivating thing, it really is.  It is only a short-termed place for us to be in.  It is temporary in light of what eternity will be.  And truthfully, I am not afraid to die any more.  It is just this natural fight I have in my heart sometimes that makes me feel like there is just not enough time to do and experience all that I want to do.  My prayer always is that I can just STOP, and enjoy every moment.  No one is guaranteed tomorrow.  And as much as I have been fighting these feelings this past year, I came across this video today of a young wife and mother of 2 small children who lost her fight against cancer.  And 4 months prior to her passing, she gave this truly amazing speech in which she says everything that I feel, and exactly how I want to live my life no matter how long it is.  I wanted to share it with everyone.  It is 11 minutes, but the entire speech was actually an hour.  It can be found at http://www.deathisnotdying.com.  This speech truly moved me to tears, and inspired me in my heart to remember how much God loves us and that every day is a gift to be cherished.

http://www.godvine.com/Mother-Dying-of-Cancer-Gives-a-Godly-Life-Changing-Final-Speech-3703.html