Clinic Visit

I was able to get in and see Dr. Gong on Wednesday. This is right at the two week mark of being off of IV’s.  It was good and not what I would have liked all at the same time.  My pft’s were down in the mid-50’s.  This has been an ongoing cycle this year.  I can get them up into the mid-60’s but over a period of 6-7 weeks we are back down in the 30’s.  So, we talked about how we can try to avoid this cycle.  

The main focus of the next couple of weeks is going to get off of Prednisone. That is priority one.  I have started a new antibiotic, Cayston, which was just FDA approved in March.  It is specifically formulated to target the PA (pseudomonas). We are hoping that this med will help maintain some of my lung function.

So, not a bad appt.  Once again it seems as if we are in a “wait and see” period.  My personal goal is to work at not being on iv’s in 6 weeks.  Some of that is in my control and some of it is not.  I’m thankful I know the One who is in control.

Clinic Visit

Early, early, early (ok 8:30 :-) this morning I had another clinic visit to see if we are headed in the right direction with current treatment.  Whohoo, my PFT’s were up!  I think all of us sighed in relief.  It seems as if things are headed in the right direction.  So, at least a couple more weeks of meds and then the goal of trying to keep my numbers up.  

We are also doing a lot w/ diet in order to get on top of the fungal infection.  [funny note; in the Doc’s notes from last visit it has that I have a “pasta” fungal infection....hmmm, resist the urge for jokes and smart comments ;-)] Ok, back to diet.  In the past I have had great success w/ what many would refer to as a candida elimination diet-basically, no sugar, no caffeine, tons of fresh fruits, veggies, grains, etc.  I keep reminding myself that it is worth the focus and work in order to help my body get on top of this.  Plus, I believe that it is a good example of stewardship.

Thanks to those who have been praying-you can see how the Lord is answering specifically. We will keep on keeping on.

Let the "fun" begin-getting hooked up

I had a last minute visit at the clinic today.  Kudos to Dr. Gong-came in before heading on vacation to deal w/ me!  Thnx CF team!

So things are still a little hairy.  It doesn’t really seem as if I am fighting something specifically, but it is very obvious that things are not getting better.  PFT’s are nearly the same as two weeks ago-good, that they aren’t down but bad that they aren’t up.  So.....we are throwing the whole “kitchen sink” at things.  Treating all the different bugs that I am growing.  We are starting aggressive IV therapy tonite.  Let the fun begin.  I told my hubby he gets the triple whammy.  A wife on Vanco (predose w/ benadryl=loopiness), Prednisone, and an antifungal-plus drugs every 8 hours.  Should be an exciting couple of weeks. :-)

Here are the meds added today;

Meropenem to treat PA: IV every 8

Description: Penicillin class. To treat infections caused by gram-negative and gram positive bacteria, and anaerobes. Used especially for pseudomonas aeruginosa and staphylococcus aureus. Injectible.

Vancomycin to treat the MRSA: IV every 8

Description: Glycopeptide class. To treat infections caused by gram-positive bacteria. Injection.

Itraconazole to treat the Aspergillus: Oral

Description: Itraconazole is an anti-fungal drug. It prevents growth of several types of fungi by preventing the fungi from producing the membranes that surround the fungal cells. 

Clinic 5-21-2010

I had a clinic visit on Friday. It can be summed up in one word-frustrating.  For a while now I have been struggling.  My PFT’s have been on a roller coaster this semester.  They are down once again.  Urghh! There is no clear reason as to why they should be down.  I have already been on two rounds of IV’s and that doesn’t seem to be the right solution at this time.  

So, lot’s of questions.  What is happening?  Are we missing something big? What could be causing these drastic declines?  The doc is actively pursuing trying to get my asthma component settled down and then researching if it may be something fungal.  So more tests and more questions.  Good thing I know the One who is in control of it all-down to each minute detail. I choose to rest in Him.