Getting infected from others when you have HCL
I have HCL, and found out about it about 4 months ago April 2025. Since then I have stayed away from big groups and not been around kids much as I worry about getting infected. Is that an over kill or ok? Have others gotten sick from being around people or groups? I was told that if I spiked a fever over 100 to get to the ER as I could not fight it. Some help and advice would be helpful. Thank you.
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I have HCL since 1981. It goes into remission with tx, and then resurfaces. I do not take any precautions other than trying not to contract from actively sick people. I have had colds and the flu (even with shots)🤷♂️. They were the usual uri/stomach bug. No big immune problems. My system recently knocked out a severe e. coli toxin in three days!?!
The old way
for hcl was to remove the spleen, so I must be careful of pneumonia . I masked and isolated during Covid (not obsessive) and never got it🫡. Everyone keeps reminding me YOU'RE IMMUNE COMPROMISED, but I live my life fully but with standard care. Hope you can too.
@frank73, I hope you saw the helpful post from @shmerdloff. I agree that it is important to take precautions. Having low white blood cells means that getting fever is different for you than the average person. But you also have to live your life. People who have an organ transplant are also considered immune compromised. You might appreciate these tips from members of the Transplant support group to living life well while also staying free of infection.
https://connect.mayoclinic.org/blog/transplant/newsfeed-post/top-transplant-hacks-patients-share-their-best-tips-and-tricks/
Frank, how are you doing? What treatment are you having?
Thank you all for your responses, this is all new to me and am trying to work through it. But I decided to do what one MD said is you need to live your life. My biggest problem is we live on 40 acres and there is work to do on it all the time I went out with with a machete to cut weeds and fell in a ditch and had a hard time getting up. I just do not know how to cope with the lost of ability. But thank you all for your help.