Saturday, March 26, 2011


For many this is a means to continue living and hoepefully in a better manner. 

For others its a scary thought that is unexpected.

For others is a wonder why its being mentioned.

I fit into the last category.  And possibly, ok yes, the second one.  I'm a bit curious why me?  Why am I being referred to transplant when there are others out there that are far worse than I who are still going along not being referred.  I spent an hour at the university that I plan on getting my masters degree from today, talking to the coordinators and walking around the main building.  I go food shopping and clean the house.  I make dinner and try to exercise.  So why me?

Am I jumping the gun, though my doctor mentioned it?  Should I wait?  Will I feel like a complete idiot when I sit down to talk to the doctors?  Will they laugh at me and tell me to come back in a year?

Just things I wonder about as my head lays on the pillow at night...

Saturday, March 19, 2011

Lazy or Tired?

How do you determine which is you?

This is something I have been wondering all week as I slept 13+ hours a day.  And even taking naps.  Spending more time asleep during the week than awake can make one wonder WTF is going on.

While I am FINALLY feeling a bit better, more energy, less mucus etc, I still wonder why I slept so much.  And if I was just being lazy, or if my body really did need it. 

This feeling hits me quite a bit.  And not just with sleep.  With other things as well.  Like exercising, taking the sheets off of E's loft bed and washing them, walking the complex etc.  Sometimes I wonder if I use my CF and being tired or lacking in energy as an excuse.  But that I use it deep down inside so I think I have no energy when really all these years of slowly not being able to do things has made me lazy.  For example, I hate steps because they make me cough so I avoid them.  Yet when forced to walk the steps (like last weeks clinic when the garage elevators didn't work and you didn't know till you parked on the top level) you can do it, albiet slowly and painfully. 

I could walk the complex daily, but I don't.  I could drive to the lake and walk parts of it, but I don't.  I really could get back on a horse and ride, but I don't.

But WHY don't I? 

Am I scared of the result?  That I will realize I CAN do these things?  Or that I will realize I really CAN'T do these things?  Which is it? 

The only way to find out is to actually do it.  And this summer, my goal is to walk parts of the lake when its not 100 degrees out.  Maybe I can start there and see where it leads me...

Wednesday, March 9, 2011

Clinic Appointment and other stuff

I think I may have jiinxed myself on my last blog post.  Nothing happening HA!

Yesterday something happened....something I wasn't expecting.

Clinic started out great.  Weight was up slightly, my O2 was actually at 95% on room air for once, no temp.  Then came PFTs.  I started at 1.08L (36%) and ended at 1.16L (39%).  I'm quite the jumper even on a daily basis as you can see.  My baseline is around 1.31L give or take a few .01's.  I was happy with it considering I have been junkier lately and last week I was streaking almost every day, all day. 

My doctor came in a bit later and I told her about the junkiness, the streaks etc.  I've been very tired lately, like all day, not just when I get up.  Needing naps even if I can't take them.  Using O2 at night again.  She gave me an rx for oral Cipro for 2 weeks.  We both hope it helps and that I can avoid IVs. 

Then came something I wasn't expecting....

"I'm gonna give you the number for the transplant clinic over at *&%#(*%!@.  I don't think they will want to start the evaluation process right away but I do want you to get in and get to know the team".


She then rolled over to me (wheely chairs lol) and explained to me why. 

I can't use any inhaled antibiotics.  I responded very well to Inhaled Cipro in the study but that was before my resistance to TOBI started.  So the chances of me being able to tolerate inhaled Cipro are very slim (supposed to be out soon I have heard).  Oral antibiotics usually don't work, but its fun to try.  I do use O2 on a daily basis, be it sleep or exercise.  When I get sick, I get SICK...numbers get low, but I do bounce back.  However, only Prdnisone and IVs keep me above 40%.  Neither of which I can stay on constantly.  I asked about maintenance Prednisone and she said they frown on it because it deteriorates your bone density and you need to be on it constantly after transplant so they limit the use of it pre to what is needed. 

So while I am not in dire need of being listed, I am a good candidate to at least start the process and get to know who will be cutting my chest open at some point.

I called my mom and boyfriend to tell them.  I am hoping both will come to the appointment with me as I know I don't want to be alone when I go. 

The phone call I am dreading is to tell my dad and my brother.  I like to shelter both of them from the "trueness" of CF.  Not that they can't handle it but I just don't want to "hurt" them.  Hard to explain yet I am sure many of you know what I mean.  At some point I will have to tell them both, seeing as they are both, hopefully, part of my support team. 

I'm now at the stage where I kinda just wanna hide in bed and see if it all goes away.  Good thing the social worker gave me a number for a psychologist yesterday (I had asked her a few months ago if she could find me one experienced with chronic illnesses and she came in before my doctor yesterday to give me the number).  Not only do I need to make an appointment with the ENT and GI docs, I now need to make one with the transplant team and the psychologist. 

Comfy bed? Lots of covers?  Sure sign me up!