Deeper Questions


I had shared this news article to Facebook awhile ago for a few reasons.  For one, I was excited that my center (Hospital of the University of Pennsylvania) already has & utilizes this technology.  They are a hospital that is ranked 10th in Pulmonology in the Nation (source: US News & World Report – Best Hospitals) but also they have one of the oldest transplant centers with highest outcomes post transplant. Given the risk of double lung transplants, this makes me feel more secure. Even the centers in NY do not have the track record that Upenn has.  This is amazing to me because one of my main fears when my friends & I were moving to the Lehigh Valley in 2010 was where I could continue my medical care since both TSC & LAM are rare diseases & I wondered if I would I be in as good of hands as I was in NY. I feel the honest answer is I’m in better.

Yet there was an important question I’d soon have to consider for myself outside of this article. How would I feel about being transplanted with “marginal” lungs?

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Life-Hacking Oxygen (Part 2)

In my last post I mentioned I had to wait for a portable concentrator.  I thankfully had a lot of help in researching & deciding on one too, although part of the decision was based on what my oxygen supplier stocked.  There is a wait list since these are somewhat personalized machines, it depends on how much oxygen one uses and if the person need intermittent (pulse-dosing) or continuous & high pulse. There are many to choose from but it’s a completely individual choice depending on what it’s use is, what the battery life is, & what the flow settings are.

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