My Two Favorite Dorks

My Two Favorite Dorks

Sunday, March 30, 2014

The Little Cystic That Could

I missed blogging last weekend because Todd and I went up to my Aunt Inger's memorial service in Virginia Beach. There was other sadness as well: we found out that Todd's cousin Fran (whose kids we had raised money for their college fund) finally passed away from her cancer. Additionally, one of my CF buddies, Shannon, who I have known a long time and recently reconnected with passed away kind of suddenly.

So it has been a period of processing, reflection, sadness - best done internally and through intimate talks with friends and each other.

My Aunt's memorial service was nice - most of the family did something for the service, singing, reading, remembering. We had the most amazing spread of Finnish and Swedish baked goods afterward. It was really good to spend time with the family for the weekend - I don't see those people enough.

Big News

The big news around here is that I have officially been referred to Duke for a lung transplant - and in my mind, this cannot be happening soon enough. I am not sure what the next step is, but I intend to find out and push for evaluation as soon as possible.

It is so crazy to feel my lungs slowly failing me...just one set of organs so vital to living...without them, I have no life. How can I be 35 and dying? It seems so unfair to me, to Todd, to my fur babies, to my family and friends, to everyone around me. I know I'm not responsible for this, but I'm still really fucking sorry for everyone around me who is being swept up in my downward spiral/journey to a second chance at life with good lungs.

Why Can't Evaluation Come Soon Enough?

Well, true I am not laying near death in a hospital bed - if I were, it would probably be too late for transplant anyway. But the fact is I am in a very precarious position. My last round of IVs officially ended four days ago so I should be feeling my best right now but, well, I'm not.

Let me back up. Before I started the last round of IVs, it had only been about a week since I ended my last round - in fact, I have spent 8 of the last 14 weeks on IV antibiotics. Because I had been on so much Tobramycin lately (which can be taxing to the kidneys, so we keep close tabs on them while I am on it), my doctor did not want to give me Tobra this last time.

I disagreed. For one, my kidneys are doing great. Two, judging on times I have been on only the other IV antibiotic, Ceftaz, I didn't think that would do much good. So we negotiated one week of Tobra and the second week on Tobi, the inhaled form of Tobra (much easier on your body since it's localized delivery instead of systemic.)

The first week I did well - I improved, noticeably. Yay! (Seriously, yay, because as far as we know this is the only combination that works against my bugs now.) But then almost as soon as I was off the Tobra I began to decline...worse oxygen saturation/needing oxygen more and more, increased congestion, thicker/darker/increased secretions, less energy. Sadly, there is just no explanation for this other than the fact that my bugs are so virulent that they begin to regrow immediately after they are not getting the very best that we have to throw at them.

This is Scary

I would totally be lying if I said this didn't scare me. I feel like my therapy is all I have now (and my pulmonary rehab/exercise to a lesser extent) to keep this crap from consuming me. I feel like I could be one health emergency away from being done in - a big hemoptysis, a lung collapse, catching a bad bug. 

On the plus side, as long as I get to Duke soon, I am still getting in there at a very good time. My support system is as good as it has ever been - Todd, my family and friends have been amazing and people are coming out of the walls to offer to help with all of this. Also, my depression has been a little better, but with everything happening and all this death surrounding me, I've also been a little numb...that may be normal, or I may be on too much depression medication - who knows. For now, I'll take not being consumed with sadness.

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