Life As an MPS 1 Adult: Hyperbaric Wars - A Shattered Hope

In a galaxy far far too near… No, I'm not even going to try. With Star Wars in the news because of the Chewbacca mask lady, and me being constantly asked about my thoughts on the ever-growing popularity of Hyperbaric Oxygen Therapy. I thought I would write up something mixing the two worlds together, and explain why I think the force is not with me when it comes to HBOT.

a little while ago my girlfriend brought up the idea of possibly undergoing Hyperbaric Oxygen Therapy (HBOT) as a means to treat my acute lung disease. As most of you know through previous articles, I suffer from high CO2 retention. This is brought on because of neuromuscular weakness through the constant progression of my MPS1. The obvious cure for this illness is to just breathe. Okay, it might not be as simple as that, I do use a BiPAP at night that is supposed to help prevent CO2 buildup, but this is only temporary.

with HBOT, the idea was that it might be able to act as a replacement to my BiPAP by introducing pressurized oxygen to the blood cells directly, whilst scrubbing off any CO2 that might have built up on them. The idea sounded promising, but the thought of being stuck in a tube for a couple hours made me a little slow on the research. This was until my dad had told me that one of his clients had suggested HBOT to him for me because they had seen great results themselves and their MS.

this of course sparked my interest even further and found that HBOT is being used for quite a few different conditions including stroke, MS, and even cancer. I even found that Portland had a treatment center that didn't use the claustrophobia inducing tubes. But there was just one thing I couldn't quite seem to find out, and that was the risks for people with pre-existing breathing issues. My issue is not that I can't get oxygen to my bloodstream, it's that I can't get enough of CO2 out. The more oxygen you put in, the more carbon dioxide is going to stay which will eventually be lethal.

so I tweeted the professionals at Legacy Health (@OurLegacyHealth) whether or not they thought HBOT would put people with high CO2 retention at higher risk of complications or if it would be beneficial. And this is what they had to say, "Patients with MPS1 do not get benefit with HBO. Patients with high CO2 retention are at higher risk of oxygen toxicity seizures with HBOT,and may have respiratory depression if their breathing is oxygen dependent (i.e. COPD patients)." I just hope that I have gone down this rabbit trail to find this answer so that others don't have to, and find their hopes shattered.


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