Update

I saw my CF doctor today & told her that I just didn't feel like the IVs were doing what they should be after almost 2 weeks, so she added another one that I will start tomorrow. So now I will be doing IVs approx 7 hours each day! It's not so bad--the 2 a.m. IV that takes an hour is the only one that's rough.
Hopefully I will be done with IVs on Friday, the 23rd!

I am still coughing and I often get winded with exertion and energy level isn't great, although I did walk for approx 15 minutes at rehab before seeing the Dr and would have walked further, but they had a state-wide tornado drill and wanted us all to get into this bathroom/storage room together & if you know me & what a germ phobe I am, then you know that there's no way I was going to confine myself to a small room with approx 15-20 others, so I split! lol

That's it for this update. As always, thanks for the thoughts/prayers and keep them a'coming!
God Bless
Lynda

Update

I thought it was time for an IV update.
I don't have big news, but I do feel like I'm a bit better each day, so praise God for that! My energy is slowly returning & I'm not quite as dependent on oxygen.  I have at least one more week of IVs to go, so hopefully I will gain a lot of ground during that last week!

Again, thanks for the thoughts & prayers & for checking in :)

Home IVs

Today I am going in for a PICC line and will be starting home IVs today. These back-to-back colds are the pits!

If you are reading this, please say a prayer that I won't have blood clots with the PICC line. Doctor is putting me on warfarin after PICC line is in, which brings up the hemoptysis issue, so please also pray that I won't cough up blood either! Thanks.

I most likely will get a port after I get these IVs done. I hope that goes well, as I've heard some stories on complications from ports :o

Numbers

This is mostly for my CF friends. I think it's going to be Greek to anyone else.

Numbers:
FEV1  0.65 Liters   25%
FVC 2.15 L   69%
Blood gas PCO2=44.0

I pulled up my numbers from my last eval in May 2010 and I'm actually just slightly better this time?? I suppose being older and weighing less? may make predicted numbers different, so there really may not be an improvement--hope that makes sense. One thing I know for sure is that I need to get to walking & exercising to get my lungs built back up. It seems that I've been sick or on IVs since the beginning of the year, so my exercising/pulmonary rehab has slacked.

I am one of these weird people that most often does worse on PFTs after bronchodilators--they seem to make me wheeze & get tight initially. My FEV1 after Xopenex was 0.55/21%. Go figure? Unfortunately, when doctor was telling me that I was in a "gray area' and to come back in 6 months, these are the numbers he was working with, as most people do better post dilator. After he & I had the tx consult, he poked his head in the door later & said "Good News--I was looking at the post numbers! You must be one of these odd people that actually do better pre." That's all he said, didn't really say "In light of this..."

I will say that I was worn out by the post PFT time. When I do PFTs, I keep getting better numbers with each try, as I am able to clear lungs some with coughing during the first few. Probably most of you do the same? Anyway, it sure makes for *a lot* of attempts at the spirometry & with having a cold this visit, I was just hot, tired out, & numbers were not getting better, post bronchodilator, no matter how much the RT wanted them to be. I finally told her "I will do a couple more, then I'm done." I felt like we were beating a dead horse or something.

So, that's it in a nutshell for anyone that cares :)