Wednesday, September 5, 2012

WOW Pretty Low Numbers Again!

Its amazing how you can be sick and not even know it!

I had clinic today and we knew going in I would need a clean out.  My numbers were down slightly last clinic and Cipro really didn't do much for me.  I am more SOB and my energy level is low.  I cough all the time, as usual but I mean really cough.  I have an admission scheduled for next Wednesday, the 12th.

Seems I am on a somewhat downward trend.  I get back up but my lows are pretty low!

Today I blew an FEV1 of .93L or 32%.  Last clinic I was 1.10L or 38%.  And the healthy clinic after IVs were stopped I was 1.28L or 44%.  And last time I needed IVs (May) I was at .95L or 33%.  Before that I was 1.08L or 37%.  See where I am going with this?

I go up and then come back down.  I go up and then I come back down.

Oh well....that is the nature of CF correct?

Today though I was completely overwhelmed.  I am working hard to get everything scheduled to be presented in November for transplant and to get things ready for the wedding and starting back to school tomorrow.  I just had a "I want to hide all day in a cave and not come out" kind of moment on the way home from clinic.  I felt overwhelmed by the never ending appointments for CF and LS.  Bu constantly having to do this test and that test and go here and go there.  And all so I don't get cancer and I can stay healthy.

Then I started thinking about transplant again and if I really want it and will it be that bad to not get it and how long might I live without it. I am not dying so I could potentially have another 10 years with these lungs no matter how crappy.  Or I might only have 2 years.  I dunno.  Maybe once I hit the "dying" phase I will be more sure of things?  Maybe I will be more confused?  I dunno.  All I know is that I try to abide by my dad's company name - ODAT construction (One Day At A Time).

And furthermore, as I was leaving clinic I was just so bummed about my old doctor and not seeing him.  I really miss my old clinic. I don't like going to a children's hospital.  I don't like having to wait downstairs for 1/2 hour because there isn't a room ready for me (appointment was at 11 I didn't get in till 11:30 which is rare, usually they are on top of it and I don't wait).  I don't like the traffic and the parking garage and the parking fee and well you get my point.  It was just one of those days ya know....


  1. Hey Amy - I can commiserate with you on the last part - hate the traffic, hate the smokers all hanging out at the bus stop in front, hate the parking fees (especially for BWH), and especially hate waiting downstairs when a room isn't ready after fighting with all of the above to get there in time!!

    Is that really your Dad's company name? I love it!!!

    Hang in there and concentrate on getting through the admission. Then hopefully everything else will fall into place once you're feeling better.

    Love, Catchastar

  2. Thanks!!

    Yup that is really his company's name :) pretty awesome huh? He started it when my step mom had cancer so it was fitting :)

    At Children's they don't have a waiting room so if you arrive to your clinic appointment and they don't have an exam room open you have to go downstairs to wait for a phone call. Its really annoying, but they rarely make ya wait.

  3. Amy - I check in on you every so often. I have been in your shoes, for about seven years I was at around 30-35%. Btw I am 35 with cf. talk of transplant came about four years ago and I put it off, then in jan of 2011 I got sick and started testing for transplant still thinking I would some how beat this thing, I was wrong. A head cold took me down in may of 2011, June 14 I was on a ventilator. For nearly five months I waited on the ventilaor for lungs, in oct I got my new lungs. At first I thought I made a mistake, but I was so underweight and out of shape from all those months on the vent that it was a hard fight back. Today 10.5 months later I am thankful for this miracle and I would do it again, it is a bumpy road but life is such a miracle. Do yourself a favor, put you first, I didn't and I think that is why I ended up like I did on the vent. You have a lot going on with school, wedding and illness. If ou dont put you first I worry you will crash. If you ever want to talk please email me at I wish you the absolute best.

  4. Just want you to know someones out here listening. I've been reading you for a few months but have never responded. Guess I am now because Im feeling alot like you at this moment. Im 28, just came off IVs two weeks ago, and getting sick again. With chest pain now too. Anyways...feeling the same way. Like Im on a downward tread (which ofcourse we ARE huh?) And gosh is it really worth the fight? Im not where you are yet, considering transplant, but I know some day I will be. And I dont think it will be worth it, but you never know until you get there right? I apprecatite reading your thoughts, and just wanted to encourage you to keep writing! Thank you, and best of health to you.