Thursday, May 2, 2019

I'm Stable and the Dallas Stars are Rocking It.

Last November while in the hospital with my collapsed lung, I was watching the Dallas Stars and hoping that they would make go at it this post season - and that I would be here to see it. The Stars have won their first round in the playoffs, are playing very well in the second, and yes I'm still here.


As a matter of fact I'm doing quite well. I almost don't want to talk about it so I don't jinx things. This is the first time I've made it to May in a new year without having to be admitted to the hospital at least once.  I'm very happy about this accomplishment.

If you've been reading along, you know that I am having issues.  I am rejecting my lungs, but the rejection has been stabilized. The official name is Chronic Lung Allograft Dysfunction (CLAD). My type of rejection is primarily obstructive (Bronchiolits Obliterans Syndrome - BOS), and I am classified as BOS 3. There are also some restrictive components with my rejection. but I am primarily BOS. Chronic rejection is a bad thought for those of us living with new lungs.  There isn't any "cure" for chronic rejection and the articles you find during a web search don't offer much in the way of hope.  Pretty much like web searches for IPF.  But just because there is not cure does not mean there is nothing for us to do.  My Team has worked hard to get me stabilized a couple of times now, and I am enjoying my current stability.  My latest X-Rays indicated:
1. Stable right upper lobe volume loss with underlying bronchiectasis.
2. Stable mild right middle lobe volume loss. No acute consolidation. 
The volume loss indicated in the X-Ray results is because the upper lobe of my right lung has collapsed three times that I'm aware of, the last was on Christmas Day while we were visiting family.  I was cooking a rib roast when it happened.  Dinner turned out awesome because I didn't let anyone know until we got back to Texas. Seriously, there wasn't much anyone could do other than what I had already been doing so it wasn't an emergency.  I did visit the Team when we got back and things were as expected. Later, at my January annual visit we found that the middle lobe was starting to also have issues. So I'm happy to see that both lobes are stable from January.  Stable is good.

Keeping these lung healthy does come at a cost, but well worth it.  The medicine that is keeping me alive is kinda rough on the rest of my body.  My list of Current Health Issues listed on MyChart is becoming a bit of a long read.  I'd list the major issues, but really don't want to come across as complaining.  I really don't feel negative about any of this.  I am still alive and life is wonderful.  Yesterday we enjoyed our granddaughters orchestra concert, and before that we watch her win the sparring portions of two Taekwondo tournaments. Both times she beat boys older than her.  She's on top of the world.  This Summer another granddaughter is coming to stay with us for awhile, we get to share with her some of the really awesome stuff that the DFW Metroplex has to offer.  So yes, the issues that come with a lung transplant have been worth it to me and my family.

If you are interested in some of the medication related issues that I'm experiencing, just ask.  It would be a good topic for a future post.

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