Saturday, July 16, 2011

Latest Clinic

Today's CF Clinic was interesting.

For a few years now, my FEV1 (a measure of how much air can be pushed out in the first second) has been hovering around 30%. Sometimes a bit higher, sometimes a bit lower. This is somewhat a "magic bullet" number in the CF world, a line where transplant becomes a serious conversation. When I started to hit 30% regularly, Portland seemed to advocate a wait and see model. Wait for something else to happen, because I was still functioning very well, and rarely had infections. It was a stance that I was semi-uncomfortable with. Yes, I was stable then, but it is impossible to tell how long I was going to stay stable. I wanted to start the transplant process, as far as at least meeting the team in Seattle, which is the closest transplant center to Eugene, OR, where I was living at the time. Starting some of the tests to see how damaged my lungs were. Portland did not agree with me on this, and when I moved away, we were still at this impasse.

Moving to Vegas, they were surprised with the attitude that Vegas took. They thought that while I was healthy, while I was stable, I was close to the edge, and that tipping point could be tomorrow, or years from now, but that tipping point was close, and getting the transplant ball rolling would be in my best interest if the tipping point indeed happened sooner, rather than later. In the short year that I was in Vegas, I completed the majority of tests for transplantation, and made a trip to meet the team at UCLA. They too thought that I was too healthy at that current moment, but that it would be wise to check in with me a couple to a few times a year to make sure that I was not declining. They said that if I demanded it, I could be listed for lungs, but given my low infection rate and ability to function, staying with my current lungs was probably in my best interest.

And now I'm living in the Bay area... with another CF team. They take a fairly similar perspective to the Vegas team. I am close, but not quite there, and my doctor thinks that right now, the two lung transplant centers would say that I'm not quite sick enough to qualify. Because of the newer system of allocating lungs based on need as opposed to wait time, 30% is not quite the magic number that it used to be. It's now much more based on the patient, and how they cope with their numbers. How they cope with the severity of the disease. And while there is no question that my lungs are severely diseased, they aren't quite ready to give up on me yet. This could change tomorrow. Or I could sit here for many years. There is no predictor. Even with having MRSA, which can be very harmful in some patients, it appears that to me, it does not cause the steep decline seen in others. They have had me complete a few more tests that are needed before one can be listed for transplant... but otherwise we just wait and monitor.

My lung function tests today had some interesting numbers. My FEV1, was 29%, which is what it was last clinic. However, my FVC, the total amount of air I can get into my lungs, declined a bit. This is somewhat unusual to not have a drop in FEV1, yet have a drop in FVC. Because of this decline, I'll be doing a course of oral antibiotics, including one that I have not tried yet. I really enjoyed that my doctor gave me the reasoning behind the drugs he chose. He is also starting me on a weekly osteoporosis med. It's something that I've been close to needing for years. But my latest bone density finally show a change from osteopenic to osteoporosis. Though, I am literally on the border, strong bones are essential for post-transplant survival, and living long in general, so I'm starting on this med.

Also, my last sputum cultures showed a very odd strain of Pseudomonas that I've never had before and is resistant to everything. My doctor thinks that it may have been a one time thing, that it didn't colonize, and will not show up again. This is backed up by me getting sick pretty hard right after that culture, than feeling better than I've felt in some time. He's hopeful that my immune system took care of it... me too...

I am also changing my diabetes medication. Gone is Januvia... but replaced by another oral med that I only take when I am eating a carb dense meal. I'm not sure yet what I think about this plan, but I am willing to try it, especially to avoid insulin as long as possible, because I really do not want to add something more intensive to my medication routine. I also run several low blood sugars, without insulin, so it may not be the wisest thing for me right now.

So that's a long overdue update on my health. I hope to get back to writing more. I can't really explain my long absence, other than I've not felt the strong urge to write. Or more accurately, I have not felt that I have been able to write something up to the standards that i hold with myself.

Sunday, March 27, 2011

One Year

I know where I was a year ago. Standing on the Hoover Dam, when I got the phone call... Eva was gone. I knew it was coming, despite my greatest hopes that the miracle would come. It had been clear for a few weeks that it probably wouldn't. Still, to know that it would never come, my heart broke into a million pieces.

Standing on one of the greatest monuments to man standing up against nature, creating life where it wasn't meant to be, I had a hard time bringing the words to my lips to tell my husband and one of my best friends that was in town that she was gone. I didn't want to say them, because I didn't want to validate them being true. My FB and twitter began to fill up with condolences. It meant a lot. The little village that spanned the world, brought together by CF and her unflinching words, was there to help rally around me.

I've had a hard time writing ever since. It's hard for me to pinpoint why. I feel like I should. I need to on some level. But, it just, I don't know. I met Eva through this keyboard. Through the internet community. We stood by each other through loss. We had a blessed day together when she was the picture of health. And I got to see her sparkle on the red carpet. And now, I'm left to help carry on her legacy. And I feel that nothing I write would ever be able to capture how much she meant to me.

The unflinching truth about me? CF is slowly getting me. I'm still not quite sick enough for a transplant, but I doubt I will ever have a day where I truly feel GOOD until I am hopefully blessed with the gift of life from another. That's a lot to deal with at 28. My house is a mess around me. It's hard physically to do the work, and mentally to deal with that I can't do all that I want to. But, I am trying. Slowly I see more of me appearing from the bounds of my body.

But the winds continue to swirl. The sun rises and sets. Life continues. My life continues. I continue to try, though I don't always know where I'm headed, I try to head there with love. Love. Always love.