My final Cincinnati doctor’s appointment

I have to say that I am kind of sad right now that it is over!  I have spent the past year with the amazing clinical staff in Cincinnati Ohio, and as of yesterday, my clinical trial is over.  😦  They have been so good to me, and have extended so much love and kindness and assistance to me.  I can’t believe that I can even say that I will miss them!!!  Everyone there was just so amazing.  We made many good friends that we will continue to keep in touch with, that is for sure.

So, I was pretty pleased with my results there.  Last time I was at 28% lung function.  This time, I was at 26.7% lung function!  And I will take that!  That is a very slight decrease for me considering I went from 70% lung function to 30% lung function in a year.  So, that is such a slight decrease, and I am so grateful for that!  We took our best friends Serena and Cory with us again this time and they helped us with the kids and we had a great time hanging out with them.  So, the trip was a good one all around.

On September 14th, I go to meet with my pulmonologist in Iowa City to discuss all of this.  I will be meeting with the lung transplant team also to start going through things.  I need to be very ready when the time comes.  Especially b/c I am right on the border.  I don’t have much room at all to decrease.  So, I have to be smart about this.  My goal is to wait until the very last possible second for this.

Also, now that my trial is done, so is the free drug.  This is a very highly expensive drug.  As in, over $2,000 per month!!!  And our insurance doesn’t cover it b/c it is not an FDA approved drug for LAM.  That is so frustrating, but there is nothing that we can do.  My husband’s employer really went out of their way to do what they could to help us get it covered, and there was just no option.  But, I do feel so blessed and grateful that he works for a company that cared enough to get really concerned and prioritize trying to find some help for us.  They were unsuccessful, but the attempt was there, and I SO appreciate it.  FORTUNATELY, I called Sam’s Club in Davenport and they can offer me the drug at $1,400 per month!  And if I buy the expensive annual membership, I can get the drug at $1,000!!!  So, that is much better than the $2-3,000 monthly fee we were looking at.  I really think that this drug has helped stabilize me, and so I am not even considering getting off of it no matter how expensive it is!  God made a way for us to find it at a more reasonable price.  (Although, I cannot believe that I am saying that $1,000 per month is reasonable!!)

Other than that, I have been doing pulmonary rehab lately.  I go three times per week to an rehab facility where I have physical therapists who monitor me and help me exercise safely.  It is about 2 hours per day, and it is a lot of work, I will be honest.  My body is so weak from 2 years of not being able to do much b/c of my lung limitations.  But it is very important for me to be able to push myself and get into better shape there b/c the lung transplant team will look at my physical body there to determine if I am eligible for new lungs.  They have certain physical and weight qualifications that they look at b/c they will only give lungs to someone who will be in good enough health to manage and take care of the lungs after transplant.  So, I have these AMAZING therapists there who work with me and encourage me.  IN ADDITION, the people that I exercise with are amazing.  I am BY FAR the youngest.  Everyone there is 70 and above.  Not kidding.  BUT, I always manage to get there and talk smart to the older people.  I ask my rehab friends to race me on the bikes and give them a hard time for almost everything.  I love it.  We have a good time and encourage each other.  I really love each of them so much.  God definitely put them in my life to help and encourage me.  I actually really love seeing them.  The exercise part, NO!  But the people I love.

My fundraiser is Friday, and I am so excited to see so many people.  I do look forward to that.  Thank you to everyone who prays for me and is there for me.  I am one blessed young woman.