Friday, July 16, 2010

IV's I've missed you...not

Yes, it's now official, my elevated white count paired with my bleed means IV's start on Monday. Got the call from my CF nurse this afternoon. Since I hadn't been to clinic since October, the staff thought I would be worse. But I showed them, with my FeV1 at 33% which was up from 31% last time I was there. Not that 33% is much to brag about--it's not, it stinks--but at least I haven't lost any ground these past nine months. It just goes to show you that everything truly is relative.

When my wheels started flying off the end of 2008, we did the lung embolization and the sinus surgery to hopefully pop me back up into the 40's where I had been for quite some time but had recently slipped into the upper 30's. A rebound to the forties was definitely a do-able thing and I felt good about my ability to do it with my newly tuned-up and tweaked body. But then I got MRSA and I plummeted into the 20% range. Not the wonderful upward spiral I was anticipating.

So now here I am celebrating 33% and hoping to maintain there for a very long time. All you need to do is feel the lower numbers to know that things can be worse and even though you aren't where you wished you were, where you are isn't that bad of a place.

My iron level is very low--like I knew it would be. The problem with doing iron supplementation besides the obvious slow down in the flow of things (if you get my drift) is that pseudomonas loves iron. So you introduce a bunch of iron and you might as well invite the pseudomonas bacteria over for a party. But my low iron levels are giving me restless legs, particularly at night. It's actually more like restless body since both my arms and legs get into the act--causing me to not sleep well and driving my husband crazy.

I know in the grand scheme of things restless legs sound kind of lame, but when you are still trying to fall asleep and it's 3:30 in the morning (and this scenario plays out several times a week), lame is the nicest word you can think of to call it, believe me. When I mentioned the problem to Dr. Nick, I felt so relieved when he said that restless leg syndrome was being recognized as a problem with a portion of the CF community and that they are doing more investigation into it. Yippee, I'm not a looney tune.

So IV's--bring it on. Although you will make me feel like a wrung out washrag for two weeks, I will win in the long run.


  1. I'm so sorry that IV's are necessary. I hope you are feeling better soon and don't have too many bad side effects.

  2. Hang in there Sherri, you are amazing!! Love you!