Friday, September 21, 2012

Insert funny title here

I haven't had a chance to update since I was discharged from the hospital.  It has been one thing after another.  So glad I am busy but I need some rest ha!

I got out on Monday night but didn't get to see the home nurse until Thursday morning.  My kidney's were not processing the Tobra well enough so we had to switch from dosing every 24 hours to every 36 hours.  Seems that has worked.  But because of this, I had to wait to have the nurse come out right before the dose to draw my trough level.  Hence the Thursday morning visit.

I spoke with the docs again about the port placement.  They said my next admission we will schedule it for the morning of it so that I can come in that morning, get it placed and get put in a room and start the clean out then.

Other than that I feel OK.  I had to stop volunteering though, and I am bummed about that.  Thursday was my normal day and I didn't think I was going to make it through.  I was dragging next to the ponies and they are slow to begin with!  I told the coordinator that if I feel better in a few months I would love to come back.  Right now with school, the wedding and the assistantship I am pressed for time and those 4 hours were wearing me down more than they should have been.  I am going to miss the ponies and my volunteer buddies :(

This coming Wednesday I have a clinic appointment so we will see just where I am health wise.  I should be back to base by now I would think.  I was going to do 20 days of IVs but I kinda want to be done on Wednesday.  Guess that will all depend on my numbers!

Thursday, September 13, 2012

Admission day 1...or is it now 2?

I was finally let into my room around 10pm last night!  The guy who was in here before me had to wait for his ride.  First he was leaving at 4, then 6 then 8 and finally at 8:45 he was picked up.  It was nice to be able to eat at home and be totally packed but it still sucked.  I had P drop me off at 8pm because he has work today and E was home waiting for Nana to get there.

I spent 2 hours in the waiting area of admitting but they were very accommodating.  More than once I was asked if I was hungry and if I wanted some meal tickets.  I was not so I declined them.  But it was nice not feeling totally forgotten and left in the dark!

When I was finally in and all settled they placed my IV.  It went in well but the nurse commented it was difficult.  Then later on (read 1:30am) they came to draw some labs and that took almost 20 minutes to get all they needed.  The first 2 vials went smooth and after that they dripped in.  My left arm is not what it used to be.

Fast forward to today and my PICC placement.  The Ativan and Benadryl just aren't cutting it anymore.  I am still 100% fully aware.  It took the PICC nurse 3 tries to place it.  She could get it in but it would not thread.  The third time she said "oh finally!"   I commented that I want a port but my doc won't let me and she replied "if I see him in the food store I will run him over with a shopping cart"! HAHA!  She told me I need a port that my veins are too scarred for anymore PICCs.  I agree with her wholeheartedly.  I asked her to write that in my chart so its documented.

A few minutes later the team visited and when they asked about the PICC I recounted what happened and pleaded for a port.  And would you believe it they agree with me!!!  They told me they will take care of Dr. D and her hesitancy to give me.  So looks like after this admission, and the wedding I will be getting my first port.  I am super nervous, but super excited to never have PICCs again.  OK I know I will probably still get PICCs at some point but at least it won't be 3-4 times a year.

Everything is going as normal.  I am getting Zoysn and Tobra again, and right now, as I type, I am getting some Magnesium pumped into me.  Apparently my numbers were slightly lower than they would like.  1.7 is the lowest and I am there, but they would like to see 2.0.  Okie Dokie.

That is about all there is right now.  I am sure my stay will be as uneventful as it usually is lol.

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....