Sunday, September 15, 2013


When you have CF you spend your life waiting for the ball to drop on your health.  You live life as best as you can: you go to college, you get a job in your field, you stop when you need to and in between you fit in hospital stays, IVs and therapies daily.

But what happens when you hit your 30s, you can't work because your health is too precarious, and you have been evaluated for a double lung transplant, and then you learn that you MIGHT get a new drug that could push that expiration date to over 60?!

It sounds so exciting and amazing and just plan AWESOME.

But it also sounds scary and emotional and weird.


Well that's because you spent your whole life up until this point thinking that you would never ever see 40.  That making it to almost 33 is a miracle in itself.  And that the thought of living to 60+ is just impossible.  I know to someone who hasn't had to deal with this it probably sounds ridiculous.  But let me explain.

I don't remember when I became fully aware of CF and its consequences.  I always knew my life was going to be shorter but I don't think I ever truly THOUGHT about it.  Not until 15 or so years ago anyway.  Then I began to think about my life expectancy.  I went to college right after high school and I got a job in my field right after college in the fall of 2001.  I worked in my field for 8 years, almost to the month (November 2001 to December 2009).  I participated in the 401k offered by all my employers but I don't have one anymore.  I took the penalties when I moved up to Boston and took that money to survive on until I was approved for SSDI. When we would have meetings in work with the 401k company I would tell them I was not going to live to retirement age so what were my options?  Just get it anyway.

I have never thought about burying my parents or living without them.  I have always assumed I would be buried first.  I have never thought about old age and spending 30 years with my husband.  I always assumed I would be dead by 40.  I never expected to see my niece and nephew graduate high school, college, or get married.  I haven't worried much about things because I was expecting to be dead by 40.

Now I am faced with the possibility of ALL of those things.  I might have to bury my parents.  I might spend the next 30 years with Peter.  I might see my niece and nephew grow up and get married.  I might make it to retirement age and I might not be prepared.

When you expect to die early you live your life completely different than someone who expects to retire some day. And not just in "living" life, but in preparing for old age.  Why prepare if there is no need for it?  I wanted to keep my 401k in a 401k when I "retired" in 2009 so that my family wouldn't have to be burdened with my funeral costs.  I was told by them not to worry about it, to take the money to survive on then.  You think differently.

How does one cope with this new prospect of life?  Especially for someone who likes to be prepared, how do you cope with the possibility of NOT being prepared to retire?  Kalydeco, when it comes out for DDF508 mutations, will change my life forever.  I will live to retirement age.  I will grow old with Peter.  I will be able to go back to work.  But its going to be like starting out at 35.  Those 14 years where I was working, and then not working, will be like they didn't exist.  I will have to start from scratch.  And let me tell you how scary that thought is.

I don't want anyone reading this to think I am being ungrateful.  Believe me, I am thoroughly ecstatic that I will get to do all that I wanted to do again without needing new lungs.  I won't have to worry about the threat of cancer being exacerbated tenfold because of immuno-suppressant medications. I might get the chance to be as close to normal as possible.  And that is amazing and exciting to me.

But I still have to deal with things I never thought I would have to.  I guess it makes me human and normal to now think about things that my husband and brother and friends think about.  To worry about retiring and having money to do it.  To worry if I will spend the rest of my life working somewhere I hate to get a good retirement, or if I will do something I love for 30 years.  The possibilities are endless, and though they are scary and exciting, they are inevitable.

I hear there are survivors groups for people with CF living over the age of 40.  Maybe we need more of these, for those who will be changing their life's outlook completely in just a few short years...or less...


  1. Oh Amy - I have to say I am also thoroughly ecstatic that you are facing such potential dilemmas!

    I can understand what you mean - I may be older than you, but I never thought I'd live to be old enough to have to watch my parents age. In some strange way it was always a relief to believe that I wouldn't have to deal with the inevitable traumas.

    I am certain there are somethings out of your control - like what kind of a work environment will you end up in, but there are some things that you can do now to plan/organize financially!! 35 is still not too late to start building up a retirement account. If your husband has a 401(k) plan, start having him make the maximum pre-tax contributions - I believe for 2013 it's up to $16,500. Make sure you are named as beneficiary on the account. If he does not have a contributory type of plan, then start putting money toward a ROTH IRA - you can put away up to $5,000 a year (after tax money) and all earnings will grow tax free if you leave in until retirement age. (can you tell I used to work in financial services?)

    It is an exciting time in the CF world - so much to look forward to! <3

    1. He does have a 401k that he pays into and the company matches too. :)

  2. I am your age too, and I have struggled with some of these same issues. Once I turned 30 I really had to start thinking about the future...the one I was too scared to think much about while I was growing up with Cf. But here we are, and it seems like things might be getting brighter for all of us. I sure hope so. What a blessing that would be.

    1. Yeah I would think about getting older but it was like the mansion on the beach everyone wants. You can dream about it but the chances of ever seeing it come true are next to nothing lol.

    2. I enjoyed reading your post. I teared up when you mentioned you can grow old together with Peter. That is what I truly hope for as well, I am DF508. Praying for change soon, I am 25, the older I get the more difficulty my lungs express.

      -Heather, CF gene DF508

  3. I tried to comment awhile ago, but for some reason it wouldn't post. Anyway, I 100% understand. Life is crazy and it's crazy to think we'll be around a lot longer than we thought. You have a great husband and are a lucky girl - I can't wait to be reading your blog for many many years to come :)