Sally's Current Health Summary - February - Obstacle, Hurdles & Hoops

First and Foremost:
FEV1 = 39%
Based on Lung Health Grading, I am at stage 3 of 3 - YIKES!

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Weight - let's begin with the good news:

Since there is a proven connection between Weight and FEV1 (lung health measurement), these are important factors to the person with cf, and their cf team. A drop in weight = a drop in fev1. Therefore, eating to keep weight up is another task the cf'er must address in their daily treatment routine.

According to my BMI, my weight isn't bad. But there's always room for improvement. Everyone, including myself, would love to see a 5-10 lb gain for good measure, leaving room for time of infection and stress.

Putting weight on:

Cf makes it hard, infection makes it harder. When an infection flares up, the body burns more calories fighting infection and, more calories are burned in labored breathing - both of these can cause weight to drop quickly.

For me, eating is an ardous task, given my lack-of-appetite. Eating is something I must work at, like my breathing treatments - everyday and often.

Lung Function - the not-so-good news:

My fev1 (see What are PFT's) has hovered around 39%. (fairly crappy if I might add). To top that off, in February my pft number was about 25% below that 39 marker. Grrr. Needless to say, it was requested I schedule a tune-up.

However, of that 39% remaining working lung, I'm exchanging 92-94% good oxygen. (This is refered to as O2 sats.) So, this is a plus in the swimming pool of numbers, since supplemental oxygen is required when oxygen saturations are 88% and below. This means, when I'm not fighting infection, I don't need supplemental oxygen; yet when I AM fighting infection, my sats do drop to about 88%.

View graph (trends - under construction) and you will see that my overall lung health have been on the decline over the few years of tracking.


Lung Cultures:

I still culture the most common bugs:
Staph - staphylococcus aureus
Pseudo - pseudomonas aeruginosa


Blood work:

In February I learned that my Vitamin A level is extremely low, at 18, whereas normal-range low is 38. I was reminded that this vitamin is key to fighting infection. So, this is actually good news to me. If we can bring that number up, it could possibly but not necessarily mean less hospitalizations.

Taking in more Vitamin A, or D, or E, or K is difficult for someone with CF. In order for these vitamins to be absorbed into the system, they require fat; and due to the CF patients' trouble digesting and absorbing fat, the bloodstream levels of these patients are often low. Specificaly formulated CF-vitamins are required everyday.

Diabetes - another factor in my health:

I am a type-I diabetic, this means I am insulin-dependent. Keeping blood sugars controlled is AS important as everything else I do on a daily basis. High blood sugars "feed" infection, and infections "feeds" the sugar. It can be a vicious cycle and a frustrating battle. To add to the battle, there are other factors that affect blood sugar numbers:

• poor appetite - regular meals help keep blood sugars from rollercoastering
• unknowns - such as infection, or, medicines. Both can contribute to unpredictible highs, making management difficult.

The good news here is that my A1C's (a 3-month blood sugar average) has been coming down, and is just shy of normal-range. I hope to see less infection as a result.


...so, this is just a little bit of the Crap I put up with on a daily basis.
I find CF challenging these days. CF Sucks.


....but my husband I like