Tuesday, May 8, 2012

Self Perception

Don't worry this isn't another weight related post.  This one is all about the inside.

With Kalydeco's wonderful results and the start of phase 3 for Vertex 809 (combo med for those with DF508)  with amazing results in phase 2, its a possibility that we could stop CF progression where it is right now in some patients and perhaps even reverse some of the damage.  This is a huge step in the right direction to make CF much more manageable.

But it brings into ones mind some thoughts that wouldn't be there otherwise.  For me these thoughts always played a part deep down in my thinking.  I have often wondered what a "cure" would mean to me.  Disclaimer Kalydeco is NOT a cure.  It restores function to a non working protein in the cell.  CF is still CF, this med just helps the underlying cause and helps to fix it.

I hover around 40-43% FEV1 when I am healthy.  My shortness of breath is daily.  My ability to function normally has decreased drastically over the past 4 years.  Yet this new med could help me gain some of that all back.  I could potentially go back to work before receiving a double lung transplant.  I could stay off that list for many many more years.

However, there is also the negative side to this thinking that we must dive into.  What if I don't last long enough for 809 to be approved and started?  I am not content where I am right now, feeling like my life is on hold until I get a transplant, whether that is 1 year or 10 years from now.  I feel like I have stopped everything and I am not truly living.  I struggle with wanting to take my meds and doing everything by the book because if I don't I would get sicker faster and then transplant could come sooner and I could start my life over.  But we all know that transplant is not a guarantee.  I might not survive the surgery.  Or I might not make it home after waking up and trying to learn to live with new lungs.

But having my original lungs offers more of a guarantee to life than transplant does.  What I need to do is change my perception so that I can become more comfortable with my life as it is now.

I need to look at what I AM doing and focus on the positives there.  I need to step back and realize that I AM living my life right now, in preparation for when I can breathe again and do everything I have always wanted to do again.

I am a stay at home wife/mother who goes to graduate school and takes care of her health on a daily basis.  I am doing what I need to do now so that in 5 years I can do what I want to do then.  My life is not on hold yet.  My life is progressing different than anticipated but it is still progressing.  And I need to focus on THAT and not the what ifs.

Kalydeco could allow me to finish my degree and get a job before I get transplanted.  Or it might do nothing and I will still need the transplant.  But I have to continue on as if I am going to live forever and one day live and breathe with shiny new healthy lungs.


  1. I have felt like my life has been on hold for a little over 2 years now. I can't do anything I use to be able to do. I know exactly how you feel. Everyday I read what all my friends are doing, like getting married, traveling, basically having a 'normal' life. I just think my life should not be like this at 26. I've hard a hard time lately being able to wake up and see what I really have thats good going on. Its def a struggle. Its nice to read that someone else feels the same way, or kind of the same way. :)

    1. <3 Jess! It can be hard to look at the positives for sure. And its hard to think of what you can do after transplant because then that makes you want it even sooner lol. Its like a viscous cycle!!!

  2. It is the uncertainty of everything that makes me feel my grasp at controlling my life is so tenuous. I just have to stop myself from looking too far ahead. I have been out of work on disability for four years now, and still find myself trying to keep up with the field just in case I do end up with a transplant and need to go back to work. Many people may think not working is just great and comfortable, but it makes me feel so disconnected from everything I spent my life preparing for academically.

    I go back and forth with the thought of Kalydeco - even though they will not prescribe it for me I wonder would I really want to be suspended where I am now and potentially avoid the downside of transplant? Unfortunately it is not a question that I will be able to decide -- my body will keep going or not and I just have to deal.


  3. Hey just had a read, I no its hard but try not to focus so much on what you can't do and focus more on what you can, live life to the absolute fullest no matter what happens, don't wait around for something that might never happen!!

  4. Guys, I've felt this way during the last 4 years. 4 years ago I ended up in the ICU and my doctor said it's time for transplant. I had my evaluation and they said it was too early. My doctor wanted me to stay off work because work was taking its toll and making me sicker.
    I had many days where I felt absolutely useless, missing a "normal" life and extremely upset about not working (especially since I love what I do).
    Finally I'm going to be listed.
    But I can say that looking back, not working was definitely the right thing to do - who knows if we'd make it to transplant if we still worked when our doctors and our bodies say not to.
    I found the best thing (and still do) is to have a deep conversation with one of my besties, my dad or my guy.
    I often felt so alone in my feelings. So I know exactly how you guys feel. I'm here to talk to anytime.