My first meeting with the lung transplant team!

Hi everyone!

I have to start updating more.  Sorry for such sporadic posts!!  🙂  This week was my first set of appointments in Iowa City with the lung transplant team.  I have to start by saying what an AMAZING team they are!  I got along so well with all of them, and they are all so caring and knowledgeable.  I couldn’t be any more happy that they are in charge of my care!!  BUT…this is very scary stuff we are dealing with.  Long story short, this is going to be a long and difficult road for me.  I met with the transplant doctor for over an hour and she spent a lot of time with us discussing things and answering questions.  She scared the %%^&*(%$# out of me, I have to be honest.  But she was simply being professional and honest and telling me all of the true risks and things that we will be looking at with all of this.  And I appreciate and PREFER blunt honesty.  If you know me at all, you know that I am blunt and honest all the time.  Ha, ha.

Anyhow, one HUGE hurdle we are looking at is the situation with my drug.  Yes, the drug we are paying $1000 per month for.  This drug is supposed to help keep the holes in my lungs from getting any worst.  But, this is still in the clinical trial stage, of course…so the TRUE benefits are not really founded yet.  But, it seems to be helping me some.  The issue is that one of the huge effects of the drug is that it causes wound healing issues.  It causes the blood not to clot in the body.  So, to have my chest cut open in several spots, remove my lungs, and sew new lungs to my heart while I am taking that drug is just not happening.  It is very risky and they would not even consider the option.  The TROUBLE with this is that WITHOUT this drug, I went from perfectly healthy lungs to 29% lung function in less than 2 years.  If I get on the lung transplant list and am off the drug, then I am running the risk of ruining the rest of my lung tissue.  It could take 3 months for a match lung set to come available or it could take a year.  If it takes too long, and my lungs get worst, end up being too unhealthy to qualify to get the new lungs altogether, and we all know where that would take us.  I won’t even say it.  So, this is troublesome.

Even MORE difficult is that we have to wait until the 1st of the year when our new health insurance kicks in for us to finish the testing and get listed for transplant.  Our current health plan doesn’t even cover 1/2 of the PRE-transplant evaluation testing, so there is no way that we could even attempt getting on the list now.  But, on a positive note, our new health plan in January is AMAZING.  My husband’s job is going well and the new health plan is great.  And his employer is really working with him and is willing to totally accommodate him in this whole process.  This is a huge relief for me because the last thing I could handle is him losing his job and benefits in this difficult time.  God is just shining a HUGE light down on us right now b/c everything is falling so perfectly in place and He has not let us down even once.  Praise God for all of these blessings.

And my friends and family are all being so wonderful right now.  My friends are helping in every way in my daily life to see that things get done and that we don’t go without anything due to my limitations.  There is God’s shining light again!!  I am telling you.  It is amazing.  I am so positive and never feel sad or depressed b/c there are so many people that reach out to help me.  I just can’t even understand how I got so lucky!  I thank God every day.  Believe that.

And my kids.  Oh, how beautiful my children are.  They are getting so big, and Josiah even knows how to put my oxygen on now, and carry it for me, and get my inhalers for me, etc.  They help so much.  And when we play games and toys together, Jayden always tells me, “Mommy, you don’t need to do that part b/c I know your lungs don’t let you.”  I get tears in my eyes every time I think of how beautiful and understanding my kids are.  And they are only 2 and 5 years old.  They are God’s light shining in my house every day.

I just have so much to be blessed for.  Thanks for reading.  I will keep posting soon!  Love and blessings to all of you.