Covid freak out: I made the mistake of a life... - CLL Support

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Covid freak out

CoCoLuna11
CoCoLuna11

I made the mistake of a life time letting a neighbor in my house briefly, unmasked, to deliver a birthday gift. She was there less than 6 ft away for about 20 minutes. About 10 minutes after she left she called to tell me that she found out she was positive for Covid (she was tested because she was scheduled for a back surgery but said she wasn’t feeling all that great the last few days before coming over). I am so mad at myself and her! I have been extremely vigilant. I have groceries delivered and only go to doctors appointments. My husband and 12 year old daughter, the same. Now, 2 days later, I’m not feeling so hot. No temperature but just blah, and back aching when I got up. I’m just laying in bed terrified! I’ve called my doctors and we all get tested Tuesday. Is there anything else I should be doing? Friends please don’t ever let your guards down no matter how rude it may appear to others!!!!

80 Replies
oldestnewest

What happened to you is everyone’s nightmare. I would make sure to have plenty of food for the quarantine.

Try to rest and don’t dwell on. You may not have caught it. 🙏🏻

Jeff

We make sure to be all stocked up. Yes, the very thing I shouldn’t be, I am - stressed! I hope you’re right and I’ve just stressed myself into Covid symptoms. Thank you.

The fact that she didn't feel well and came over anyway was so rude and horrifying on her part!

I hope you do not have covid but if you do- please don't freak out. You may not get it as bad and you have your doctor on alert. I am disappointed you couldn't get tested quicker.

Do not beat yourself up over this. Your friend owes you a huge apology.

🙏💕

CoCoLuna11
CoCoLuna11 in reply to GMa27

Thank you! I agree. She is not the picture of health herself so I think she just thought is was one of her ongoing issues BUT she also knows my situation. I should have just said “I love you but I need you to get out”.

I think the doctor wanted to wait 5 days to make sure the test was accurate.

Thanks for you support!

So sorry this happened to you but please don’t beat yourself up and I am sure your friend feels horrible having good intentions bringing over a present.

You did the right step calling your doctor to get a test and you may not have Covid. I personally believe your CLL team needs to get involved and advocate for you should you have Covid and get sicker. There are treatment options and personally believe treatment with antibodies early in the disease As well as antivirals might be helpful especially in patients with compromised immune system. I hope this is available in the area you live. Wish you all the best.

I am a little surprised that my CLL specialist didn’t want to prescribe anything just in case. I’m trust Dr. Sharman has his reasons but I will call again if I get worse.

Fortunately, I had my ivig infusion the day before the exposure 😊

Rpshe1
Rpshe1 in reply to CoCoLuna11

There really isn’t anything they can prescribe. Dr Sharman is my Onc too. I have complete trust in his medical expertise. Hang in there!

CoCoLuna11
CoCoLuna11 in reply to Rpshe1

I do too. Thanks.

Covid is a virus so unfortunately there is not much one can do to treat it. The first I would do if I got covid would be to invest in an oximeter, a finger device that measures your oxygen levels.

Oxygen levels can drop suddenly without one knowing it (silent hypoxia), and before one is aware there oxygen levels can drop. Catching it early and getting on oxygen early can help keep it from getting serious.

The one drug that is the most promising therapeutic is a monoclonal antibody that just got emergency approval. There are very limited doses of this, but I expect those of us with Cll would be high on any list to get them. So if I get covid, on day one of diagnosis I am calling my doctor and doing anything else I can to see if I qualify for a monoclonal antibody infusion and be a squeaky wheel.

It cant hurt to try. The studies suggest that those of us with Cll have a much worse outcome on average with covid, but the studies are possibly flawed in that they might miss all the unreported mild cases.

My doc at MD Anderson told me most all of his patients with Cll and covid did okay. We have had a handful of members on here report they have had covid infections and most that I have read about managed okay without even going to hospital.

It’s best we all assume covid would be particularly serious for us, but it is not a given our covid case will be a serious one.

CoCoLuna11
CoCoLuna11 in reply to cajunjeff

Thank you so much Cajunjeff! Do you mean bamlanivimab?

I ordered the o2 meter right after I heard and it got here today.

I might be afraid to kick my neighbor out but I am not afraid to be the squeaky wheel 🤣

cajunjeff
cajunjeff in reply to CoCoLuna11

Yes and there is something very important to know about it. As of now if you are in hospital you can’t get it. So any of us with Cll who get covid should not wait until we get sick, we should immediately apply to get the drug. We have one of the best arguments to actually get it.

If you are on oxygen or in hospital, you might not be eligible

peoplespharmacy.com/article...

CoCoLuna11
CoCoLuna11 in reply to cajunjeff

Understood! I will call him if I test positive OR my symptoms get worse before that. Really, thanks for that piece of advice.

HappyCatUK
HappyCatUK in reply to cajunjeff

Jeff, thanks for the tip about the oximeter and I will order one today. But just taking a quick look online I see there is a huge variation in price for these, from just a few pounds up to around £75! Any advice before I splash my cash?🤔

Shedman
Shedman in reply to HappyCatUK

Usual online shopping rules apply - about checking reviews and using your wits to try to ensure that you are likely to receive what it is you think you are buying.

Start of 2020 £10 would get a suitable oximeter via Amazon.

I’d think supplies are reasonable by now.. so the high prices are those resellers (speculators?) who bought their stock at a high price.. or who are trying it on.

I’d target £10-20

HappyCatUK
HappyCatUK in reply to Shedman

Shedman, thanks so much for the advice, I'm much relieved to hear that I don't have to empty my bank account for one! 😉

studebaker
studebaker in reply to cajunjeff

Thank you Jeff for information about Monoclonal Antibody. As usual, I learned something new from your post.

Dana

My 20 yo granddaughter has covid. She just told me 2 days ago. I haven't seen her in over a month and was just getting a strong urge to see her this week trying to figure out a safe way.

Of course now I won't until she is over it.

She has a light case and said she felt she was coming down with something so stayed home. She had a 100 degree temp for a short time. Now she is congested, no cough, lost sense of taste and smell. Her doctor said she has a light case.

We have had friends stop by on occasion without a mask and know how you feel. I also felt mad at them and myself after they left.

CoCoLuna11
CoCoLuna11 in reply to country76

I’m glad to hear your daughters case is relatively mild and hope she continues to improve.

Yes, those kinds of visits are too stressful to be enjoyable anyway. The whole time she was here I just couldn’t wait for her to leave (despite her just trying to be kind). 🤗

I would be feeling exactly as you are, but remind yourself that at this point you are doing all you can do.

For whatever this might be worth, I just saw a segment on the news yesterday that said the optimum time to get a Covid test after a known exposure is about 4 to 7 days and not immediately as most of us would naturally want to do.

I also just saw my CLL specialist, Dr Furman a few weeks ago, and when we spoke about Covid he said that most of his patients have all done well in their recovery.

I know this is very easy for me to say but until the test please try to take the best care of yourself that you can...rest, nutrition, and so forth. You have gotten some great advice here already and again easy to say, but please believe that no matter what, you and your family will really be okay. 💕

Debbie

CoCoLuna11
CoCoLuna11 in reply to DebKat999

Oh Debbie - thanks for those words. That is exactly what I need to hear. I have read about the cases people have described here and it’s so reassuring that many of those with Covid have done well, all things considered. My husband is making some chicken and dumplings right now (probably don’t need the dumpling part but sounds good anyway). 🥰

Cgolen99
Cgolen99 in reply to CoCoLuna11

I am also so thankful for all of this information and reassurance. I do not have Covid but live in terror of it like most of us and am doing everything I can, but there is the occasional wondering when I have to run into work quick for more supplies to continue work at home, or running in the store for milk, or going to the laundry room in my apartment building of running into someone etc. After reading everything I am confident you will be fine if you should be positive! I will keep you in my prayers!

DebKat999
DebKat999 in reply to CoCoLuna11

Thinking of you today, and wishing you the best 🌻

CoCoLuna11
CoCoLuna11 in reply to DebKat999

Thank you! I so appreciate that. It’s 3 am. We were all doing fine but my daughter said she had a stomach ache yesterday and she had a coughing spell for a couple minutes before she went to bed. Now I’m worried again. I hope we get the results soon after we’re tested!

DebKat999
DebKat999 in reply to CoCoLuna11

Yes I do too, I know the waiting is never easy. x

Wishing you well CoCoLuna11.

Thank you 🙏🏼

I would take zinc, make sure my vitamin D is sufficient, get some rest, and do something relaxing that I enjoy,.

CoCoLuna11
CoCoLuna11 in reply to marcyh

Zinc, check. Vit. D, check. And reading (a book but glancing at my phone too much) with a cup of peppermint tea. So, check! Thank you 😊

onu1tadi2
onu1tadi2 in reply to marcyh

Hi. Would be interested in why Zinc recommended. Thanks.

CoCoLuna11
CoCoLuna11 in reply to onu1tadi2

I’ve seen some reports that Zinc May offer some benefits with Covid and I don’t think there is any harm with CLL. Now Neil or someone may provide something more evidence based. I just know that I took it all last fall and winter and managed to stay Virus free.

onu1tadi2
onu1tadi2 in reply to CoCoLuna11

Thanks. I am not as worried about the virus. Have lived in isolation mostly before covid. Do not like wearing mask as am asthmatic so just distance myself in well ventilated supermarkets but today a Walmart clerk came up to self checkout several tines too close. It is mainly store clerks I fear as they have false sense of security re masks. Will read up on zinc.

marcyh
marcyh in reply to onu1tadi2

A pharmacist told me in early March that it would help coat the lungs and protect from the virus. Zinc is sold out where I'm from.

onu1tadi2
onu1tadi2 in reply to marcyh

Interesting. I trust pharmacists more than doctors as they actually study drugs and supplements.

Holy sh*t... Most of us have pandemic fatigue and are starting to let their guards down.

I live in Tokyo, which hasn’t been hit as hard as many other places, but the daily numbers are going up, up, up...

Holy sh*t, exactly.

So far you are not infected to your knowledge. So try to relax.

CoCoLuna11
CoCoLuna11 in reply to onu1tadi2

I know. Trying....

I believe relaxing or de-stressing a big factor in keeping as healthy as possible. Not easy I know. Terrible what happened to you.

bkoffman
bkoffmanCLL CURE Hero

Be sure your Vitamin D level is good and consider zinc. Some data to support both and that's what the gave the gave the prez, besides the antibodies which need to be give before hospitalization.

Absolute nightmare - I had infusion at hospital on Friday - in orderly queue waiting for temp Covid test to enter - guy refused to have his temperature taken and walked straight into hospital - you despair.

mrsjsmith
mrsjsmith in reply to Sepsur

Oh Sepsur that is awful. They should have sent the security guards after him. No doubt he is an anti vaccination as well.

Colette x

Sepsur
Sepsur in reply to mrsjsmith

Indeed - so so arrogant

❤ say safe my fellow warrior🙏🏽

Jm954
Jm954Administrator

My friend's daughter in law (an ICU nurse) caught covid. The day before the symptoms appeared she was having lunch outdoors with my friend, her husband and son. None of them caught it, not even the daughter in law's husband. She was well again within 10 days and is back at work nursing covid patients.

I hope this helps and that you are as lucky as they were.

Jackie

CoCoLuna11
CoCoLuna11 in reply to Jm954

Thanks Jackie! Me too!

This is worrying, but it’s hard not to worry in this situation. I think so many people don’t realise how dangerous they can be, as there is nothing to see with our illness.

I have everything crossed for you. Do let us know how you get on please!

Chrisx

CoCoLuna11
CoCoLuna11 in reply to Psmithuk

I will - thank you!

Take care and be gentle with yourself - and stop beating yourself up about it. You mention your doctor knows - is this your GP or your haematologist - if it isn't haematologist, I would let them know as well. I hope you haven't caught it. Big big socially distanced hugs X

I called both doctors. Thanks 🤗

Thank

thank you. I myself sometimes wonder how to best act in these situations.

You are right. We have to be firm and say no. No no no

Please try not to worry. I have had covid. It was a very mild case. It felt more like a mild cold than anything else. Hubby (non-cll’er) also had it. His was more like a very bad case of the flu. My doctor was informed but did not prescribe any meds. I didn’t take anything. Hubby took over the counter meds for fever and cough. I’m praying that you dodged this but if you do have it I’m hoping it will be a very mild case. Please keep us up to date on what’s going on. 🙏 Brenda

CoCoLuna11
CoCoLuna11 in reply to Bama-Girl

Thank you Brenda! I am so glad you and others have posted your successes(?) with Covid. It does make those of us facing it hopeful. I will (so far feeling same this morning as yesterday, not too bad).

What a shock. So sorry to hear this Cocoluna.

May your exposure not infect you, and if so any symptoms be mild and benign!

This is one of the worries you could do without for sure. You did get a whole lot of excellent replies here.

These are all very good and smart people here and I learn something new frequently, like suggestions of taking Zinc.

And, especially suggested Monoclonal antibody information by Jeff (our educator).

Your exposure might not have been long enough to get a big load of virus 🙏🏻

Sending you a big virtual 🤗

Dana

Praying for you and your family. Hopefully you will be ok 🙏🏻❤️

I would be very upset too. My son who is a radio personality in FL has Covid and was in the ER where they gave him an IV of some antibiotics and then sent him home with 6 prescriptions. Where did he catch it? Not sure but he had been in Miami ( 4 hrs from home) calling a high school football game, got food at a restaurant..and was in contact with his co workers at the radio station-one of whom is waiting for her results. It can be anywhere..

CoCoLuna11
CoCoLuna11 in reply to Gisygirl

I hope you son is doing better! Yes, I was concerned when Oregon cases hit 200/day, now we are over a thousand. I realize that’s still low in comparison to some but seems we all know at least one person that’s had it now.

Hi CoCoLuna11

We had a very similar thing happen, though it was outside. A neighbor who had symptoms and waiting for her test results was outside with her pooch. A doggie party ensued (my husband was there with 6 others and their dogs...no one was masked) I am told they were distanced, but when my husband approached her, she apparently said "stand back!" That was when they found out she wasn't feeling well and waiting for test results. I am so maddened over this. Those that are waiting for their results (particularly if they have symptoms?!?!) should be treating it like they have it and quarantine. My husband will be getting tested this Tuesday (5-7 days after exposure), and until then we are masked inside and staying in separate rooms as best we can. The exposure wasn't as bad as your experience, so hoping we will be fine, but it still makes me so anxious that this can happen. I know the anxiety you must feel. Hoping things will work out for the best for you!

CoCoLuna11
CoCoLuna11 in reply to Artist123

Wow, that is similar, although being outside hopefully makes you feel a bit better. It’s so interesting (and appalling) that some people intentionally choose to put others at risk. We are also doing our best to stay separated at least until we are tested (also Tuesday). Fingers crossed for you too!

Artist123
Artist123 in reply to CoCoLuna11

Thanks! And to you too on Tuesday. This just made me realize that now is the time to be doubling/tripling down with wearing my mask. Even I got a bit complacent at times not taking it with me for my dog walks. But from here on in, it's on anytime I leave my home and anytime I'm around others. Gotta keep ourselves protected!

CoCoLuna11
CoCoLuna11 in reply to Artist123

Did your husband get his results back? I hope he is okay too!

Artist123
Artist123 in reply to CoCoLuna11

Negative!

I'm so sorry this has happened to you and pray you stay well.

Hi sorry to hear you are in this situation. You have received lots of good advice here.

Just to reassure you, my friend had Covid and her husband, who has CLL and severe kidney remained Covid free.

Let’s hope you are as lucky as he was. 🤞

Ann

Don't punish yourself, most of us will have made a mistake. You could be feeling meh because of worry.

I hope your tests are all negative. Please do let us know.

Be kind to yourself, getting stressed plays havoc with our immune system ❤️

Take lots of Vitamin D & C and zinc.

I am sorry you are so worried....but you have done a wonderful service, reminding all of us to be more careful and be very vigilant even with friends and family....prayers for your good health

My neighbors son came into our house a about a month ago to help me move a new piece of furniture that we bought and didn't wear a mask. The next day his mother called my wife and said that the whole family had tested positive for COVID. I was so worried and went for a test that day which thankfully came back negative. I have had several more tests since then because my oncology department requires one every time that we go in for any type of treatment. They have all come back negative. I agree that it is a scary thing to find out that you may have been exposed. I hope that you get negative test results back soon.

Chris

mrsjsmith
mrsjsmith in reply to noeagaman

Hi Chris,

I was wondering how you were doing ? Hope you are still able to work from home.

I get tested every month I go to get my IVIG but sadly I am severely restricting where I go now ! Local shops once a week and early morning. Coco I hope yours comes back negative soon.

Colette x

noeagaman
noeagaman in reply to mrsjsmith

Hi Colette, yes I’m still working from home with no end in site for that.

My wife and I don’t go out to much either. We’re ready for life to get back to normal one day.

Chris

mrsjsmith
mrsjsmith in reply to noeagaman

Me too Chris,

but I am not sure what I would do ! When I first went into a large store last September I was very confused trying to follow the arrows on the floor and which doors to use.

Stay well

Colette x

Well, we’ve all been tested and now we wait. Could be 2-6 days. I’m banking on 2 but they said the “negatives” usually get told later, so maybe not.

But, I wanted to update on the monoclonal antibody. I heard from my doctors office (Willamette valley cancer institute) that they do not have access to this drug. If the esteemed Dr. Sharman can’t get it that makes me wonder who can and what kind of inequities are at play here. I’m contacting my gp and I wrote into the CLL Support docs to see if anyone can shed more light.

KatieBlue
KatieBlue in reply to CoCoLuna11

I’ve heard about D and Zinc, but also C.

I also heard about dental offices having patients rinse (swish - spit out) a couple times with hydrogen peroxide (not sure of dilution) or listerine. When I went to check about mouth rinses for covid there was this article:

today.uconn.edu/2020/06/uco...

CoCoLuna11
CoCoLuna11 in reply to KatieBlue

That’s really interesting. I see too that there’s a new study on mouthwash (not yet peer reviewed). I have been using it since the beginning based on the “it can’t hurt” philosophy.

KatieBlue
KatieBlue in reply to CoCoLuna11

I also meant to say sorry you were exposed. People don’t understand that until they get the test results they are not supposed to interact with others. I get that she took the test bc of surgery, but still.

Hope your results come back negative 💕 Take care and be safe 💕

CoCoLuna11
CoCoLuna11 in reply to KatieBlue

😊 thank you!

Well, we all tested negative. I went from extreme fear to gradual ease as the symptoms didn’t seem to develop. It took 5 days from testing (10 from exposure) to confirm. Now, I don’t leave the house and no one comes in. Regarding antibody treatments, even though another one was approved for emergency use, I didn’t get any confirmation from my doctors that this would be available. Not sure what it takes to have access.

Thank you everyone for your support and advice through this. My neighbor has affectionately and secretly earned the new name “typhoid Lyla”. But, really I am just grateful 🤗

Pleased to hear all is well.

Newdawn
NewdawnAdministrator

Phew! 😅

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