My husband and myself are taking part in a National Office of Statistics study on which I and my husband are tested regularly for positivity of Covid19. Just recently we were asked if we would also do a finger tip blood test to check for antibodies. Today we had our results which showed that I am negative for antibodies sort of expected that with my CLL but nevertheless it upset me, my husband's test was positive.
We had already said that whatever national changes, it wouldn't make much difference to us. We would dearly love to see our family but right now I am too frightened to introduce different people into our present small very tight social bubble.
How do others with challenged immune systems feel?
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kitchengardener2
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Please read this quote from my favorite explainer of all things complicated made easy to understand- Dr. Susan LeClair: healthunlocked.com/cllsuppo...
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So if we don't know if we CLLers have immunity to COVID-19 we have discussed the idea of creating our own "herd immunity" by surrounding ourselves only with people that have normal immune systems and are fully vaccinated.
Since the Pfizer vaccines have been proven to preven asymptomatic infection and transmission for 94% of normal populations, the chance of a vaccinated person causing you to become infected is very low.
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Another way to think about it is to identify the risks and then consider how to limit them.
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The biggest risk is likely to be in a enclosed space with poor ventilation that has many unvaccinated people that are singing or talking loudly without masks. (This sounds like the typical "Pub" in the UK- doesn't it?)
The only viable option is for the CLL patient to wear a properly fitted N95 mask.
If the CLL patient removes his/her N95 mask to eat, drink or sing, then he/she is at even greater risk .
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So outdoors or strong ventilation with HEPA filters is much better
Being around only people that are fully vaccinated is much better and if unvaccinated people are present- try to get them to wear standard, surgical masks if possible
For the CLL patient keeping his/her N95 mask on all the time and moving away from crowds and to the outdoors to eat, drink or sing is much better.
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I will be follwing the "much better" options for my daughter's wedding in June.
N95 masks in the US were (highest prices) $50 for a box of 20, pre Covid, 2018. So $2.50 regular, $1.25 on sale (I was just getting set to purchase more, my box was running low just as Covid hit) I could find sale ones for half price. I am not sure a 40 cent mask has enough of the filtering material, or strong support, to keep it firmly on your face as well as offer enough filtering protection.
KN95's are around but with non adjustable ear loops. If it doesn't fit your face snugly and put up slight resistance to breathing, it's not giving as much protection as you think. I have some KN95's that were falsely advertised as N95's which Amazon refunded my $ but told me to keep. So I didn't toss them and keep in my car for "better than nothing" use. I was wearing one at the dog park because I always wear something when around others outside, even when they are far away. I go to the dog park at off times and don't always see people there, so I am comfortable using them for this. They are too big for my face and the ear loops are not snug. A woman asked me where I got them, because she "was looking for something looser". We had a little chat about how masks really should be snug if you want protection indoors.
Yes, they were that expensive pre covid. They come in different prices and qualities, the more expensive ffp2s are really halfway between N95 and N99. Unless you buy fake, they have to pass an EU quality check. I buy them in Lidl, the German supermarket chain and they are renown for the best price to quality ratio. Oh, and the government zeroed the VAT on them so they are affordable for everyone. Sizes are tricky, one has to find a certain type and once it fits perfectly stick to that one. I found one for myself and my wife as well. They are different of course, The ones I used cost about 1, 70 euro each in the beginning. Now they are much cheaper.
I do strongly prefer the orginal 3M products that have head bands vs ear loops since they fit my face better and seal the entire way around. I have NOT found any KN 95 masks or foldable masks with ear loops to fit well. (If your glasses fog up the mask does not fit tightly enough). I started wearing and choosing these types of masks for my employers in industrial use in 1970 when I worked as an engineer at major Fortune 500 companies. -
In addition the styles with an exhaust valve are more practical for extended wear time since they don't get wet as fast and are much easier to breathe after 30-60 minutes of use.
I also have no antibodies, I try to carry on life as normal except I won't go inside pubs or restaurants, I always wear a mask etc. I have 2 children under 3 who are in pre school. I am 57 retired, so work is not an issue. I only socialise with family and friends who have had both Jabs. Longer term I will follow the data, but I know I won't go to mass gatherings for a few years, however I will fly to Cyprus next June to see family. I am only just finished my Obinutuzumab cycles and only 32 weeks since diagnosis
Thanks , agree with all you say. We won't travel abroad certainly this year and possibly not until late next year. It all depends on what happens. No crowds, pubs or restaurants for us. We are supposed to be attending a family wedding in London in August but unless we feel safe, we won't go. Stay safe.
I have set some rules for myself. Most importantly is the risk. How many people in your area. I live in a small town and there are very few cases. I decided that I need to avoid other peoples breath, their spit. Wearing a mask is the most important thing. It is exactly as we are told to do. Social distance, open windows or doors and when the weather is better meet close family and friends outdoors. I am careful when removing and touching my mask to wash or sanitise my hands.
The hardest thing to do is having family in the house and think that my grandchildren are a risk. They know to social distance and we have looked after them. They sit and play computer games. My living room is long and they sit at the far end. I open windows around the house a bit.
My family and close friends are vaccinated.
We cant just avoid going out. I dont go in supermarkets but will go in shops I feel safer in. Places are safer than they were originally.
The rules in the uk are changing on Monday and I will have to judge if it feels safe. We are meeting some friends for lunch on the 26th May.
The place we are going to takes bookings and limits numbers. Tables are socially distanced. There is ventillation. My friends are fully vaccinated. I will wear a mask when not eating.
This doesnt mean I will go to many places. I am not ready to go to the cinema or theatre. I will take care to avoid enclosed places.
This all depends on numbers. If this Indian variant spreads I will think again. I am assuming I wont make antibodies as I need ivig. I have family 200 miles away and would love to visit. That will have to wait.
I hope you get chance to go out safely. I cant face being away from my friends. Anne uk
I learned some time ago, pre-Covid, about CLL and antibodies, so I wasn’t surprised that we would be affected like this. After stamping my feet once or twice in response to an initial sense of “it’s not fair!”, I got over my sulking phase pretty quickly. I can’t do anything about it, except observe the safety rules as closely as possible. I plan to stay home until the vaccination programme has been worked through. Allowing time for the normal people’s second jabs to take effect, we (UK) should (in theory) be at peak immunity by the middle of November. That’s assuming no 3rd Wave or nasty variants. 🙄My trick for avoiding depression is to reject stress and frustration. Just refuse to entertain those thoughts. ... walk away from it.. accept what I can’t change.. chill out and be patient! Make the best of it, and look for the positives. We WILL get to the open, green spaces again, sooner or later. Have confidence.
Remember that prayer... “God, grant me the grace to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.” Or something like that.
During the late winter and spring I had pots of garden bulbs outside my patio window. The colour of hyacinths, daffodils, tulips etc made me feel happy. Simple pleasure. Anne uk
I too tested negative and have not seen my family for over a year. I wouldn't say I'm "frightened" Just disappointed and cautious. I believe if I contract Covid I won't be around next year to see anyone so I stay semi isolated and look forward to better days.
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