Chest Pain & LAM

I am sharing this presentation today because as my lung disease has advanced, this issue has been the bane of my existence.   Chest pain is one of my most common symptoms & sometimes the one I find hardest to control & deal with.  It’s also one that when it flares up slows me down considerably.

That presentation was from the 2015 Lamposium in Chicago last March, which I attended. I did not see the presentation in person there because I was volunteering to help lead other sessions at the time.

Once the presentations were posted to The LAM Foundation website, I watched those I had missed, including this one. (The Lamposium hyperlink shows an archive of the 2015 sessions. I also found the lung transplant presentation by Dr. Dilling equally informative, though at the time I had no idea that I would need a transplant evaluation. I came back & re-watched that later on as well.)

This presentation is very easy to follow.   I’m sharing this for those in my community who may have missed it. As well as just as general information in case other people with different lung diseases with similar issues might find it useful & informative.

(The feature image shows what LAM looks like on a CT.  The dark holes are LAM cysts. In severe cases, those holes are much more in number and larger. The LAM hyperlinks point to a professional page which can be shared so doctors & healthcare professionals can learn more.)

As for me, I’ve had about 6 lung collapses & three surgeries to glue my lungs to my chest wall to help prevent or minimize collapses. I don’t regret having it done but I’m sure that can also contribute to my pain issues as well.  Having asthma I’m sure exarcerbates things as well. Hopefully post transplant all of this will be more manageable.

When I have a flare sometimes pain medicine helps, sometimes it doesn’t.  I might see if I can come up with a new strategy.

I met Pete Moore in a global tweetchat a few months ago. He has a strategy called The Pain Toolkit that looks like it’s worth investigating. I did a cursory look at the website & the tools. Some of them I use already, but there’s a few other tools I might be able to incorporate.

If I try out his strategy in its entirety, I’ll post an update either to this post or do a follow-up post in the near future.

I plan to download the app for now & look it over to see if there’s any new information I can glean from it.


One thought on “Chest Pain & LAM

  1. I was Diagnosed with Lam in the Summer of 2005 after I had brain surgery and 12 years later my lung flare ups (inflammation ) has gotten worse doesn’t matter what the temperature is outside I can never get comfortable and I’m always having surgery on my kidneys I’m stage 3 renal failure and have been since 2009/10 and I take everolimus for the tumors but the kidneys ones are rapidly growing and I have another brain astrocytoma slowly growing in the same spot as before the astrocytoma in 2005 was cancerous early cancer and they said I’m a walking miracle I was one of those that when I was born they told my mom and my grandmother that I was gonna live past 5 years old well I proved the doctors wrong I graduated high school in ’99 got married in 2001 and I’m still proving the doctors wrong I’m still putting up the fight with tuberous sclerosis and Lam.

    Liked by 1 person

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