Hi I am new here. Diagnosed about 18 months ago. Was OK for the first year when I didn't know much about CLL. But now I feel very tired and anxious about getting an infection that I can't fight. I used to think that access to everyday bugs helped me to develop a good immune system. Now I have to be a different, fearful person - avoiding ill people and always washing my hands. Not like me at all!
Avoiding bugs: Hi I am new here. Diagnosed about... - CLL Support
I'm sorry that you are anxious, and hope you can get more comfortable with our CLL "new normal".
It is not clear from your post whether you are having frequent infections or are mostly concerned about the future risk of infections.
Here are some previous discussions on this subject you might find useful- I found them using the box on this page labeled "Related Posts"
And on each of those pages look for the box labeled "Related Posts" to get more ideas.
Scott - you aren't in anywhere near the trouble I'm in regarding animals - dogs, cats, a couple of rescue pigeons, most recently a pair of rosters someone threw over my 8' fence, and in the last two weeks a pair of pea hens have shown up in my yard. My first oncologist told me that I had to get rid of all of my animals. I got rid of him instead.
Annapurna - As Len said, you didn't mention whether infections are already an issue. If they are ask to have your IgG level tested. Mine was extremely low at diagnosis, and I was sick all of the time. IVIG infusions have been a Godsend for me.
I think that you will find that common sense things to avoid infections will gradually become automatic, but not impact your daily life. I laugh at myself when I realize things like the fact that I now use a knuckle to push elevator buttons, and open doors pushing with a shoulder, or pulling with a pinkie, when possible. I have wipes in my car all of the time. I avoid buffets as much as possible. I use a different aisle in the market if someone is coughing or sneezing. I try to get aisle seats for concerts, on planes, etc. so I'm less surrounded by others, especially during flu season. I don't stop and think about any of this. It's just automatic now.
I know that most people here have their own little adjustments which are just part of their "new normal" but don't require constantly worrying about getting sick. I've had 16 1/2 years of developing mine, and this year was the first time I've dealt with any kind if virus since my diagnosis, and it was pretty mild. That includes my last 5 years of teaching germy third graders before retirement.
They have cat scratch fever 🤒
At first they thought I had that or mono or syphilis!!
I actually got cat scratch fever back in 1997 when I was in the Navy. A friend had given us a kitten and after getting scratched by it my lymphnodes swelled and the scratch took months to go away. It took a long time for them to diagnose me and when they did they did a node biopsy and confirmed it. I used to think it was on a song...LOL
This is the first time I have posted here. I was diagnosed 3 months ago and the more I read the sicker I got. However now I have got over myself I have got back to living, catching the bus etc etc. I look after myself better and are feeling much better for it. I am sure I have worse times to come but I am going to make the most of my wellness whilst I have it.
You are right to be vigilant. Len has given you access to a lot of info thru his links.
By having CLL we have impaired immunity. But NOT all by the same amount or for the same reason. Our immune systems are insanely complex.
Practically, get on with your life. Have fun, laugh, love, live.
Choose, however, not to visit countries with exotic diseases or poor medical services. If you get a fever, see a doctor early. Know where your medical services are - always.
Stop shaking hands. Avoid hugs and embraces. I do fist bumps now. Gets a giggle. Avoid crowds. Alcohol hand gel.
I am 62, 3 yrs diagnosed, just completed FCR, feel normal again all good. Like Scott have cat issues, they being old, insist on lap time despite my FCR induced severe neutropenia. I've been free of infection. I am v grateful, and have taken care. Oh... Yes I wear gloves for most activity. Kitchen. Garden. Hobby.
Wishing you well. Keep in touch. Chat to us. Share your worries.
I saw a new doctor recently, and when I went to shake his hand he offered a fist bump instead. New thing going around where I am seen. My hematologist gives great hugs. As long as my counts are good, I'm not giving up hugs! And if I'm at an event that involves crowds I stay on the outside edges. Unless you are severely immune compromised, you don't need to become a hermit.
Hugs are good. Of course!
What is the science behind this? We transmit infection by our hands to ourselves. Do we stop touching door knobs? I don't use/touch bannisters, my legs just got stronger. I avoid lifts.
The suspended aerosol droplets crammed with virus from a good infected sneeze can remain suspended in a room for hours.
The issue of infection is important to all of us CLL worrying warriors.
I believe more can be done to evidence this infection risk, and limit the risk.
Do we all know how to wash our hands effectively? 2 stanzas of "Happy Birthday" minimum!
JigFettler— CLL Worry Warriors!! Hahaha
Hi, there are some nice comments posted already to your question. We do have to make some lifestyle changes when we find out our diagnosis. But my understanding is that none of us (CLL people) are the same. You will see differences between your condition and others, when you read on this site. Some of us here get colds and infections all the time. Some of us do not. I am happy that I'm in the latter category, I hardly every get anything. So even though CLL affects the immune system, we have different levels of progression. If you don't get sick often, then chances are, your immune system is still in good shape. Regardless of that, it is probably good to adjust habits somewhat. In the "Pinned Posts" on this site (on my browser it's on the right side of the screen), there is a really good post called "THINGS WE CAN DO to improve our CLL journey". It might be good to consider some of the vaccinations. Since we know we have CLL, we can be pro-active and save ourselves problems down the road...
Pinned posts are at the bottom on smart phones.
Anapurna- sorry your having so much anxiety.
I was diagnosed 2 years ago. Never had any serious illness or infections in the 2 years leading up to treatment. I had a cat. I also have 2 kids, one in school bringing home all kinds of germs I’m sure. I would also help him out in his classroom.
I think CLL can be different for each individual. I’m getting treatment now due to my CLL’s aggressiveness. Only now since I started chemo do I feel I need to worry about staying away from sick people, though not sure what I’m gonna do about my germy little ones.
For me, since I wasn’t having any problems, I didn’t worry too much about my CLL. Each of us is different and at different stages. Get to know your CLL. I hope once you do that you can make informed decisions, not fearful, to keep yourself healthy.
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