My Two Favorite Dorks

My Two Favorite Dorks

Saturday, May 29, 2010


The PFT (pulmonary function test) machine

I had a very busy CF clinic visit last Thursday. All in all I have been feeling incredible lately. I feel slightly less good than I did a couple of weeks ago when I last lowered my Prednisone dose, but I hope that my body eventually adjusts, that I will feel awesome again, and be able to continue lowering my dose. (One of my ongoing goals is to get off it entirely.)

There is a nurse at the CF clinic who has the ability to tell instantly how you are doing. She does this, amazingly, while we patients wear masks that cover up half of our faces. She says she can tell by our eyes. I don't know what her secret is but I have found her to be amazingly accurate. When she asked how I was feeling, I told her very well. She said that I looked very good to her - the best I've ever looked, actually. That was quite a compliment coming from her!

My pfts were pretty much unchanged from my last two visits. That is kind of discouraging because of how good I feel, but when you consider that I have been lowering my Prednisone - which has surely inflated those numbers in the past - it really is a good thing. I believe the cause of my feeling good is:
  • haven't gotten sick
  • compliant with treatments
  • exercising a lot
  • a supplement called NAC (n-acytelcystine)
The story with the NAC is that I have been flirting around with it for the last couple of years. But it wasn't until the last few months that I started taking it regularly twice a day - and after about a month of that I started noticing pretty significant changes: I often don't feel like I needed to do my mid-day treatment, my exercise tolerance is (pretty significantly) up, my mom commented that I don't have "the CF voice" anymore. I think I have more energy, too, although that is hard to tell with how busy I've been.

But back to the appointment. I am switching to a new brand of enzymes, which I am a little nervous about. But it seems to be going ok. It's been kind of like switching pet foods, I'm adding them in a little at a time to make sure my belly is getting used to them. The reason for the switch was that my current brand is going to be changing names and will not be available for a couple of months; at the same time I am finding it too expensive to buy my special-for-CF ADEK vitamins, and this new company gives the vitamins to you free. My last blood test showed my Vitamin A levels were a little low, so the Dietitian was concerned it's because I wasn't taking enough ADEKs. I personally think it was just a fluke because my vitamin levels have never been low but she wasn't buying it. :)

The other thing that was really good was a conversation that I had with the social worker. I used to loathe the conversations with the social workers as they prodded into my psyche to try to see how "well adjusted" I was living with a chronic illness. This, however, was a conversation mostly about insurance - specifically what I would do for insurance if I lost my job at TNC (please no!) I have long said that I have no second-best option with this.

Turns out it's not as bad as I thought. While the state has abolished the Adult CF program that would help low income people with all of their CF expenses, there is a new insurance in NC for high-risk patients called Inclusive Health. I'm not sure how it works, but for $300-400/month I could get on it. The program does have high deductibles, but also covers more than just CF expenses.

Also, (and this is kind of sad, but also good to know...) I already technically qualify for federal disability (SSDI) since I cycle inhaled antibiotics continuously and my fev1 is below 50%. However, if I applied for that, I would have to not be working in order to plead the case that I'm not able to work. So that is not something I want to have to do. After being on SSDI for two years, one automatically gets Medicare insurance. With my job now, I think I could get COBRA for 12 or 18 months, so there would still be a gap in coverage. But hopefully the Inclusive Health would be around then to help with that.

The other thing is that UNC itself has programs both for hospital/clinic visits and for prescriptions. So the worst case scenario, I could get all my care there free (I already qualify for the hospital/clinic part of this program b/c of my low income and so all of my co-pays are waived) and could go there to get my medications once a month. Not ideal, but certainly a nice safety net to have.

So while all of that stuff is totally no fun to think about, at least I feel like I have a good handle on it. And it's definitely less scary now that I know what my options would be. Now to hope that I never need to use any of them! :)

1 comment:

  1. Um, no cf voice?! Wow. You're clearly doing something right over there in NC. Congratulations on your maintained pfts and increased energy! What an awesome report. I do wish I could say the same, but then again, I'm doing all the things you're exercise or nac.

    Maybe I should. Yep.

    Have fun with everything. :)