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Bicycle touring tips for people diagnosed with Immune Deficiency (CVID)

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WS Üyesi WS Üyesi kullanıcısının resmi
Bicycle touring tips for people diagnosed with Immune Deficiency (CVID)

Hello everyone -- I am hoping to connect with bicycle touring enthusiasts that have immune deficiency -- PI or CVID. I have just been diagnosed and am managing my deficiency with Sub cutaneous Hizentra once a week. That said I hope to do a three week trip that involves camping. So - my query is -- anyone out there know if this is possible or sane? Just wondering if there are any tips or planning ideas that would make this trip a little easier. I am nervous about this new challenge -- I have done a lot of touring and camping -- just not with this medical addition. Thanks for all the help.

WS Üyesi WS Üyesi kullanıcısının resmi

While I do not an immune dificiency per se, I am a liver transplant recipient and am thus intentionally immuno-surpressed in order to prevent rejection. Honestly, I do not know the different between you and me (I can share lab values privately if that would help), but I still tour.

The big negatives/hassles are that I take a LOT of meds (27 pills per day and most can not get above 95*F or they start to dissolve), I must drink really clean water & ice so take a bulky, somewhat heavy water filter in case I can not buy bottled water that is reverse-osmosis filter (Dansai is) even if small town water is readily available, have to use a lot of hand sanitizer, carry a satellite tracker in case I get sick, and typically do not have the "reserves" in strength recovery as I did before the transplant (granted that was 11 years ago) so it could be just because I am getting older.

Honestly, I would just discuss with your doctors and see what they say. Be sure to impress on them you really want to do this so if it IS DOABLE, how is the best to mitigate dangers.

Best, John

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