Over heating!

Jellybaby

New member
Do people with cf get hotter then other people? My problem is our classroom in school gets super hot and other people say it's a little hot but I get way worse and end up overheating so much it makes me feel sick. I get like this anyways in hot situations but is anyone else the same and have u any tips :/ thank youuu! :)
 

Ratatosk

Administrator
Staff member
Friend of mine's daughter had this problem; however, since she's been on Kalydeco, it hasn't been an issue. Apparently her sweat test results as a baby were in the hundreds and since being on Kaly, she's no longer salty -- last sweat test indicated a 12. Not sure if it'd help to ingest salt. I know a few people take salt tablets when they know they're going to get outdoors in warmer weather.
 

LittleLab4CF

Super Moderator
Jellybaby,

Don't look now but DF508 genetic moderator drugs similar to Kalydeco are in trials. The "Discover" magzine article available through a post here a few weeks ago is pretty much the party line. If you haven't read the article, I suggest you at least read the last couple pages. It talks about what drugs are up and coming and is almost exactly what I got last month from my CF specialist. And he is the principal investigator on the very type of drug trials they talk about in that article.

As for having a broken thermostat, CFers will have times when getting overheated is exasperatingly hard to deal with. I came within a hare's breadth of wigging out after a commercial flight powered down on the tarmac to wait for a gate. The plane was humid and hot already just from the location we landed but afer an hour of the plane heating up, I was getting off that plane one way or another. If this happened today, I probably wouldn't have lasted five minutes. To me this means that sometimes we are more compromised than others.


Recently I have been tracking down what probably is an infection in the bile duct or hepatic duct somewhere. In my experience, my overheating is worst when I am fighting a hidden infection like a sticky pancreatic or liver duct. In years back severe sinus or other head infections did the same thing. When you think about somebody having an obvious cold or a stomach bug, they don't sit in classrooms, they are in bed and not subject to the classroom environment. Sweating or sweating out, feeling like the air is hot may be cortisol stress hormone flashes or a sustained hormone elevation and not necessarily causing a fever. CFers often see their issues as catching this or getting over that along with occasional flares along with a necessary maintenance. We are always sick in terms that most people understand the term. People stay in bed feeling like we might on a good day. If boredom and unemployment awaited unending days for a person in physical discomfort but not a health emergency, pretty soon most would eventually go back to work, or school if you like.

This may sound goofy but special clothing is available for the temperature challenged. Very much like the serpentine network of tubing to control the body temperature inside space suits, a vest can be worn over or under the clothes and water circulated through it. I have a vest and pants from many years back. This may be an extreme, but here is one you can do very easily. A small container of cold water that she can place her hand in for a couple minutes will do wonders potentially. An easy experiment would be for her to place her hand in very cold water sometime at home when she's overheated. The left hand is fastest. Anything from a product that atheletes stuff their hands into to cool down fast to small cold packs that she could squeeze in her hand(s) for a couple munutes could work. In order to make all of this as small as possible, eye or facial cold packs stored in a soup thermos of ice water could be kept at her desk.


LL
 
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delsonno9

Guest
My daughter who is 16 also has ddf508 & plays school & club volleyball and yes she heats up much quicker then her teammates so I make sure her drinks are well iced during games , she's apart of the vertex clinical trial and of course we don't know if its the placebo, half dose or the real medication but she still heats up !
 

LittleLab4CF

Super Moderator
Iced drinks have the added advantge of much faster fluid absorption so it replaces lost water that is very cool.

LL
 
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