Allergic asthma survival HEPA-tent

[runcyclexcski]

Hi all --

After 3 months of waiting, it appears that I might finally have my first Xolair shot (they emailed saying that they may have an appointment in 10 days). They indicated that there will be a review after 16 weeks (consistent with what papers say). Since Xolair has worked for me before (2007-2012 in the USA), I hope it will work this time. If it does not, I will try another mAb.

On another note, I wanted to share how I've been surviving the last 3 months following the most recent exacerbation that landed me in a hospital. My asthma is allergic (dust mite, pollen, and mold), and I have high IgE and eosinophils. So, a while back, I have built a "Darth Vader -type" chamber into which I blow HEPA- and charcoal- filtered air. This is where slept every night for the last 15 years. I built it after consulting folks who did professional research in indoor air quality (I worked at Lawrence Berkeley Labs at the time), and after noticing that my asthma would go away each time I spent a week in Death Valley, USA (and came back after I returned).

In the past, sleeping in the "HEPA tent" was sufficient to keep me breathing for the rest of the day. In the last 3 months, however, I had to stay in the tent 24-7 to be able to breathe (the alternative would be to be in the hospital). I came out of the tent for brief amounts of time to get pills from Tesco and to go for 30 min walks, all while wearing a respirator. I am currently on sick leave, but the tent allows me to sleep more or less normally (with occasional bad night if I spent too much time outside the day before).

While living in the tent, I can still read (ebooks, no actual books >>> dust!), watch movies, have zoom meetings, mark student essays etc -- i.e. normal "office" work. One annoying side-effect was that my eyesight has deteriorated significantly, perhaps, due to never looking at objects further than 1 meter away. If I survive, I might build a proper perspex box with clear walls so I can see through.

Here is a pic of how the kit looks like, even with particle counts :). There is quite a bit of material research that went to this: not all HEPA filters are the same, some do not even correspond to their specs, and there is batch-to-batch variability. My previous brand of choice of IQAir (their filters can be ducted easily), but their filters have recently started to give off a strong odor >>> bad news. Thankfully, the hydroponics industry is to the rescue, and there are now cheaper options.

[Celie1]

Wow - that’s quite an impressive set up, but awful that you’ve had to live like this!

Really hope the Xolair works for you. Good luck 🤞

[runcyclexcski in reply to Celie1]

Thank you, Celie. I am always preparing for the worst -- hence the set up which does not depend on the xolair (Xolair stops, fuel shortages etc). I am now even thinking to keep a backup generator and fuel on stand-by (like people lived in Iron Lungs used to)

[ck101]

Hoping all works out, amazing there’s a med out there available you can’t get and have to resort to this.

[runcyclexcski in reply to ck101]

I consider myself lucky to be alive and to have a job and background that I can use to keep myself alive. Most folks have to suffer all of their lives, living in countries with horrible air pollution and no healthcare.

I managed to get it in 2007 by reading research papers and by specifically asking for it (it was never mentioned to me by my MD). Anyone in my situation, w/o the education and the relative finance stability, would have suffered for years in hospitals before Xolair would be offered. I had to beg for Xolair in the UK, and it took me a year to get on the list. Things only started to move when I went to a private clinic and gave up on my GP.

Even w/o Xolair, I am lucky. 50 years ago there were no rescue inhalers and no steroids. 80 years ago there was no polio vaccine. And 100 years ago there were no antibiotics.