Don't know how it happened, but I have Covid.

[Lisa-1959]

Last Thursday (February 9th) I woke up hoarse...didn't feel bad but sounded horrible. Since I am super careful and go almost nowhere, I assumed it was a mold reaction to 2 days of rain; however, Saturday morning, I was running a low grade fever, and a home test said positive for Covid! Argh!

I immediately called my oncologist's office and was referred to an on call physician who said I needed to quarantine for 10 days, contact my primary care doctor, and made a few suggestions for over the counter medications. I then called my regular doctor and left a message on their answering machine but didn't get a call back until Monday. In the meantime, I wasn't feeling horrible so began questioning whether the home test was accurate, so I went to a local Walgreen Sunday afternoon to get a PCR test. (As of this typing, the 48 hour response has morphed into 96 hours plus...still don't have any results, but after a 2nd positive home test, I am assuming it is accurate.)

My hubby was fine until the early morning hours of Monday when he woke up with tummy distress. He has had a sore throat and achy ears but as of this afternoon (Thursday), he is pretty much back to normal. When my doctor's office called me on Monday, they said based on my symptoms that they would not prescribe Paxlovid even though they know my CLL history. I am on Day 8 of symptoms (hoarseness, congestion, off/on coughing/sneezing, & light headedness), but I functioning around the house....albeit more grouchy than normal! I have definitely been sicker in the past with the flu, but it appears the symptoms may linger for a while.

Part of me is relieved to finally have faced the monster and be coming through on the other side, but do I now have enough immunity to actually return to some level of living? My husband and I haven't been to any inside events including church, events, restaurants, or even visiting family in 3 years. My husband has been so worried that I might die if I contracted Covid that he hasn't wanted to go anywhere or do anything, so I almost feel like I have a "Get Out of Jail Free" card; however, is that wise. Just curious on how others with CLL have responded to having had Covid and then interacting with the world outside your four walls???

[MisfitK]

While recovering from Covid is no absolute guarantee of future immunity and health, when you use the words "get out of jail free now", I think it sounds like you are ready to accept the now mostly known risks of whatever future Covid infections might bring to you in the future as a trade off for re-entering a more normal life, so I'd say it's time to go out:).

Once you're fully better (and ONLY when fully better b/c you want your immune system back to its best possible state before putting it under stress again), I might start small and see how re-entering some indoor activities goes for both you and your spouse. If it were me, I'd prioritize seeing family for a late winter/spring visit b/c I'm sure they want to see you as much as you want to see them, and they'd probably accomodate any visit you'd like to make - short, medium, long, somewhat indoor, somewhat outdoor, etc. Then, I might continue to having a monthly (or weekly?) date night with your spouse on weeknights at indoor locations that tend to be emptier those days. Get yourself used to crowds again while staying as safe as you can. It may be your spouse needs more time than you do to reacclimate. And that's okay, b/c slow and steady always wins the race:).

Let us know how it goes if you take the plunge!

[Lisa-1959 in reply to MisfitK]

Thanks so much for the comments & ideas. My husband is 18 years older than me and starting to have some health challenges of his own, so he has been very concerned about me kicking the bucket and leaving him to fend for himself. I suspect the slow and steady will be most palatable for my hubby, but it will be really really nice to see family and friends we haven't seen in 3 year!

[loran6t8]

hi Lisa

Thought I’d share my experience. Diagnosed 2015 on W&W.

I’ve been lucky enough to not yet catch Covid although I’m starting to think maybe it would help with immunity moving forward.

I started going out slowly at the end of lock down and am lucky enough to have understanding employers and mostly work from home. I also choose quiet times in supermarkets

I have virtually returned to normal activities ie holidays shopping, going out for meals etc the only difference now is I’m armed with hand sanitizer ands mask when indoors.

I figured I could get run over by a bus tomorrow so I need to make the most of every day. (Had quite a few losses since diagnosed which is possibly behind this new way of thinking for me)

I’m not saying that it’s an easy transition to make, Im hyper vigilant around people regarding coughing etc. but I think the more you venture the easier it could be for you.

Saying that we all need to go at our own pace although we do all deserve quality of life.

Best wishes

Loran🌻

[Lisa-1959 in reply to loran6t8]

Glad you have not dealt with Covid, but I hear you on the "help with immunity moving forward" comment...hoping that will be the same for me. Thanks so much for sharing your experience and perspective.

Since my husband has been the one driving the fear wagon, I am hoping we can both relax a bit and get out some. I have no children, but my husband has 2 from his first marriage. We have seen his daughter twice in 3 years and his son once. We haven't seen any of his grandkids or great grands during that time. No church, no functions, no eating out, no grocery shopping...nothing...seems like the walls are closing in on us. I definitely agree on needing a quality of life!

[loran6t8 in reply to Lisa-1959]

The best advice I can give is go slow and take it at your own pace whilst you build your confidence. Here’s to your journey to freedom 🥂x

Best of Luck

Loran🌻

[Splash24]

I had researched suplements that were thought to be effective, kept Vit D level high, got Cvd>chills one night, headache the next am then gone. I did not change my life... any, I made a personel decision not to live in fear. I respect that everyone handled this in a way they though would be best for them.

[Lisa-1959 in reply to Splash24]

Thought I had responded to your note, but apparently not. Glad you did so well and had such a slight response to Covid. I am on day 13 since symptoms first started, and I am still hoarse and congested...appears that is going to hang on for a while. Still testing positive for Covid, but am definitely looking forward to getting out once this has all passed.

[AnneHill]

I am careful with distancing and masks etc but I realise I cant lose my life. My grandsons are growing up and we distanced to begin with but I have relaxed now. We are looking after them next week and they play their computer games at the other end of the room. We will go out and they will play on skates and skateboard. I cant stop being careful but I am doing more. Anne uk

[Lisa-1959 in reply to AnneHill]

Glad you are doing more...enjoy your grandkids next week!

[loran6t8 in reply to AnneHill]

hope you are enjoying your grand babies. I couldn’t imagine not seeing mine. I think my thought process was pushed along by the fact one of them lives with me and although I was initially anxious of him bringing something back from school, over time I have relaxed and enjoy … even if it’s all chaotic and exhausting at times when they all here.

Incidentally on a trip to family in the US, my husband started feeling ill on the flight, we were sharing drinks etc he tested on return and was positive, we got home to the rest of the household being positive. Interestingly I didn’t catch it….. always think that’s a bit weird tbh.

Sorry waffled a little there.

Enjoy your new freedom Anne

Best wishes

Loran🌻

[Lisa-1959 in reply to loran6t8]

None of our grands/great grands live remotely close to us, so we don't see them much even without Covid. (My hubby's family dynamics are a bit odd.) Thankfully we have started venturing it, and I am thrilled!

So glad you didn't get Covid...yes, that is weird, but Covid is weird!

[Sepsur]

I hope you are feeling better each day. Once I had the vaccines, I felt much more confident about interacting with the outside world. I still don’t like to go into really crowded spaces, the subway/ underground would be my idea of hell. I wear a mask if I am ill and remember to wash my hands much more frequently.

I’ve had Covid twice, first was Delta & second was omicron. I was hospitalised the first time with the antibody cocktail & remdesivir working really quickly. The second infection just dragged on and I couldn’t get rid of cough for weeks.

My family are becoming much less paranoid of any illnesses floating around - maybe this is helped by being in remission & back on W&W, after all, prior to Covid there were still plenty of deadly things out there that we didn’t limit our lives for ‘just in case’. Flu had done it’s best to kill me in 2016.

Don’t get me wrong, I’m not cavalier nor would I expect others to be any less careful than they feel they need to be.

[Lisa-1959 in reply to Sepsur]

Glad you are doing well and weathered the 2 infections. I am on day 12 of symptoms (hoarse and congested) and still testing positive, so I suspect I may be dealing with lingering symptoms for a while. I have certainly been sicker in the past (wound up in the hospital in 2018 with double pneumonia after contracting the flu...started treatment for CLL a few months later), so I am grateful this has been much easier.

I think avoiding really crowded spaces will be wise, but then again, I have no idea where I picked up this infection. I am super careful...mainly only going to doc's appointments, so I haven't been in any groups to have caught this. Obviously I picked it up somewhere, so being careful doesn't necessarily protect a person...

[Sepsur in reply to Lisa-1959]

all it needs is one door knob and for you to rub your eye, nose mouth after contact…😳

[Bluemerlegirl]

Hi Lisa-1959! I hope by now you are feeling better! I just came across your post, and thought I would throw my 2 cents in

Like you, I had always been really careful when it came to Covid. I get my vaccines on time, and take precautions. Somehow though, this past Fall, I got it. It took 5 days before an at-home test would show positive for me, though I knew from the beginning it was Covid. By the time I finally tested positive, they wouldn't give me Paxlovid either. Covid made me sicker than any flu I had ever had. There were a couple of days where, looking back, I should have gone to the hospital, but I couldn't get out of bed. Those days are now a blur to me, but my sats dropped down into the mid-low 80's, and that is not good. I remained sick for over 3 weeks, and tested positive for over a month. I NEVER want to get Covid again. I completely understand your "get out of jail free" feeling, but for me, I think having Covid only reinforced my feelings about masking up, washing/sanitizing, vaccinating and avoiding large crowds - especially indoors. Especially now that so many places and people are becoming complacent. I hope some day Covid will be far behind us, but for now, masking up and taking precautions is just second nature to me. I don't even think twice about it. That said, I do visit family, I grocery shop, I still get out and enjoy my life... I just take whatever precautions I feel necessary for the activity.

[Lisa-1959 in reply to Bluemerlegirl]

I am so sorry to hear that you got so sick. Ugh! I definitely knew I had something, but thankfully it wasn't that bad. (I was much sicker when I had the flu in 2018 and developed double pneumonia.) We have started to return to some pre-Covid activities which has been very nice. My husband was so afraid that I would get Covid and die, so it was a huge relief to come out on the other side still in tact. Definitely will continue to be careful, but it is nice to feel like I am back in the land of the living.