Cll and covid positive: Did anyone here test... - CLL Support

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Cll and covid positive

Cllquerist profile image
Cllquerist

Did anyone here test positive for covid19 and recover from it?

38 Replies

Yes I see your worried about your father

I am 65 and as you can see It was a LONGER sickness than anything I have ever had

On 1/23/21 I was exposed

On 1/28/21 I tested negative but was sick and because of test I could not get infusion which became big problem

On 2/18/21 I thought I was getting better but it got dire and went to Emergency room which was a good thing because it was worse than I thought as I had Covid pneumonia/Hypoxia and was lucky to not require admission

After crazy LONG day at ER I was sent home on Oxygen support and lots of drugs and it took 14 days to get well enough to stop oxygen

So now it’s 4/21/21 and I can’t say we’re Covid stops and CLL symptoms start as my hemoglobin and ALC have been on a long decline which really affects my ability to be active

Cllquerist profile image
Cllquerist in reply to Tommays56

Thank you Tommays52 for your reply. It's reassuring to read it. Could you tell me how long you had fever? Were you given steroids to break the fever? My father has tested positive for covid19 with Cll and he has been having fever for more than week. But his oxygen saturation has been normal so far. I'm from India and as you might seen/heard in the news, the situation is very bad here. Just hoping he gets better soon.

Tommays56 profile image
Tommays56 in reply to Cllquerist

My daughter was married in Chandigarh and I have many I in-laws there I am very worried about when I read the news about it

on the week of 1/28/21 I was given z pack and prednisone which did not really help me

At the hospital on 2/18/21 I was given two drugs by IV because of the pneumonia

ceftriaxone 2 g, IV Push

dexamethasone, 10 mg= 1 mL, IV Push

I was sent home with azithromycin and prednisone and while the fever was better I had really bad night sweats for 6 weeks

Cllquerist profile image
Cllquerist in reply to Tommays56

Thanks again. Dexamethasone is the steroid being prescribed here for covid patients with persistent fever. So I assume it is safe to administer to a CLL patient?

cajunjeff profile image
cajunjeff in reply to Cllquerist

I hope your father will recover quickly too and that you will give us an update on how he is doing. Good luck. I am pulling for your dad.

Cllquerist profile image
Cllquerist in reply to cajunjeff

Thank you so much!

Thank you for the case study, very interesting. Why weren't you given a blood infusion on 2/18, or at least shortly thereafter, once you had stabilized?

So much of my care was based on the false NEGATIVE TEST I missed the window

Even in the ER my doctor had to insist on a rapid test which came out positive to justify treatment

My doctor was able to see the obvious BUT the system is geared around a multitude of tests that our not validated

Right, I see your point. I get screened for Covid-19 every week at work, and I think the sample preparation is very subjective. I have had technicians that hardly probe the sinus area, and just swirl the tip a few times around the nose. I have had others that really press up against the sinus and count 6 full rotations with the probe. Who knows why the initial test was negative, it could have even been a clerical mix-up, which happens sometimes. In any event, count your blessings. This could have led to a much worse situation. Stay well, and thanks for sharing. Fascinating case study.

I had Covid December 9 and the symptoms were mild to moderate. Stuffy head, a deep breath made me cough , body aches. My Dr told me to take 50 mg of zinc , and 1000 mg vitamin c , vitamin D 3. I also was given a zpack just In case bronchitis or any chest infection so then this would avoid that. I was better in about 2-3 weeks.

Justasheet1 profile image
Justasheet1 in reply to ironjohn

John,

It seems that you were blessed compared to some others on this forum. I’m so happy that you rebounded like that. I remember being very worried about you.

Jeff

ironjohn profile image
ironjohn in reply to Justasheet1

I agree I was very nervous as well. The oncologist and specialist had no concern. They both were just saying to take the vitamins I posted and said you should be ok in a week or so. That being said I was not as calm as they were. I know some people without Cll that were very sick , some in the hospital.

Cllquerist profile image
Cllquerist in reply to ironjohn

Happy for your recovery and thank you for giving me hope.

I had absolutely terrible fevers, getting worse from day 6 to about day 12. Please read my other posts, there were quite a few of us going through it at the same time. Fevers started getting better after day 12 but it took another week or so before I stopped having them. Really long recovery, long covid as well.

It really affected my bloods, everything...platelets went up, haemoglobin down, lymphocytes up, two months post positive test, everything was still the same. I have an appointment next week. I'm really curious what my numbers will be like another 3 months down the line.

It's a nasty disease but a lot of us managed to pull through it...hope your father turns the corner soon.

I was taking all the vitamins that should be beneficial and it didn't do the trick for me. You just never know which way it's gonna go...

All the best ❤

Cllquerist profile image
Cllquerist in reply to Poodle2

Thank you Petra! I'm so happy you beat the virus after going through so much. I'm sure it gives a lot of hope to many here.

I have been Covid positive twice. Once in early December and second time in April. First one was pretty bad with plasma infusion, remdesivir and several other drugs. Second one was comparatively better.

I suggest you should consider getting your father tested for IL6/Ddimer/CRP/LDH/CBC and if possible a HRCT. That’s what my doctors suggested both times and it helped a lot in taking immediate actions.

Where are you based in India?

Cllquerist profile image
Cllquerist in reply to Soultouch

So how long did it take for you to recover in both cases? All of those tests that you've mentioned were done and the result was a mild to moderate case of covid pneumonia. He has been hospitalized now and is under observation. However the tests will have to be repeated. I'm from Chennai in South India.

Soultouch profile image
Soultouch in reply to Cllquerist

It took me almost a month to recover the first time but second was much easier and my report was negative in the 8th day. Though in both infections, was hospitalised for 6 days (5 days remdesivir & 1 day observation) and 10 days of strict quarantine post that.

I also had to take an antifungal post hospitalisation for a period of 15 days.

I wish fast recovery of your father and hope no side effects trouble him.

Cllquerist profile image
Cllquerist in reply to Soultouch

Thanks a lot!

Yes

I did, vaccinated in January, had covid last week. I'm w&w, it felt like a bad head cold. Not much more than that.

Hi. I’m 62. My wife and I both contracted Covid in mid December. I was very concerned at the time for all the obvious reasons. I’m on watch & wait and I made a full recovery in about three weeks but my wife continues to suffer with long covid. She is otherwise fit and well.

Cllquerist profile image
Cllquerist in reply to Britcom

Wish her a speedy recovery. What symptoms does she still have? Is she a CLL patient too?

I am 73 and had covid in January. I did not realise that it was covid because the test came back negative. I thought however that it was the flu from hell that I was having, with streaming nose and eyes, sinus-pains and a unbelievably awful sore throat. I did not eat for a week and could hardly sleep, but at least I was not coughing. I was given azithromycin and that seemed to stop the infection from spreading into the lungs ( it had just begun there ). The worst of it lasted 1 week, it was bad but going down for the next week, and after those two weeks I felt much better though very weak and tired. Three weeks after it started I had another test for Covid because of a small operation that was going to happen a few days later. And to my utter surprise I tested positive. I was told that it was at the end of the infection and that my first test must have been a false negative. I felt very happy that my body had been able to fight off the virus since I am CLL and also on Ibrutinib and have low gammaglobulins. I take daily vitamin D and zinc but cannot take bit C because of the Ibrutinib.I hope all will go well with your father!

Yes! I am 72 years old. Tested positive Oct. 9, admitted to hospital October 30 with O2 level of 68. I went to ER the week before and my oxygen was normal, even though I had covid. I was sent home. Oxygen can fall fast. Go to hospital when 0xygen falls below 88 or you feel the cough is in lungs. In hospital almost 4 weeks with 1 week in ICU. Received convalescent plasma, remdesivir, antibiotics, steroids. Ventilator was contemplated, but I started to feel better. Sent home on oxygen. Recovering at home 8 months later: 40% of my lungs are damaged with covid scar tissue, still need supplemental oxygen at night, walking 12,000 steps a day, bike riding up to 2 hours, hand mowing my acre of lawn. Woo hoo! I feel great. Covid was the worst, but covid can be conquered. Lots of prayer and determination. Sleep on your tummy or side to open up your lungs, get lots of rest, drink water constantly, eat protein, and pray. In recovery, doctor told me walking and bike riding are my best therapies for regaining my lungs. When I returned from hospital I couldn't walk 3 steps. Now, 12,000. May this give us all hope.

Yes. It’s serious, not pleasant and knocked me for six for a few days. But, fully recovered after a couple of weeks, apart from loss of taste & smell, which took about a month to come back. I’m 64, stage A , untreated, fit & healthy. 🤞

I tested positive the day before my last Rituxin treatment. Within 5days I was admitted into the hospital with bilateral covid pneumonia. I was on dexamethasone, rendezovere, Albuterol and a high level of oxygen for a few weeks. Was discharged on home oxygen for two months. I drank lots of water, ate protein and drank protein shakes. After awhile, I was able to walk more than just to the bathroom. In April, I went back to work full time and I walk 1.5miles each day with my dogs. It was the sickest I’ve ever been in my life, but I got through it!

yes. infusion. better in under 2 weeks.

What was the infusion you received?

I did. I was able to receive monoclonal antibodies so my case was very mild. All the best to your father.

I know of someone with CLL who was in the hospital with C-19. If you are interested in connecting, you can PM me.

Yes. CLL since 2014 ; Imbruvica since '08. Covid + on 12/18/20 in ER & got pre-cocktail Lilly infusion. Was in "fog"to Jan. 14. Went to ER again, admitted me for 4 days with serious Covid pneumonia. Interesting, didn't require oxygen or had a fever. Doc was worried about lung scarring & gravel, but April CT showed lungs ok. But, I'm still not myself -- a little foggy. Had believe Covid affected pulse rate issues as well as urological. The former seems ok. Don't knowhow much the Lilly infusion helped or not; VAX in Mar. LLS LabTech S-antibody test showed positive, >250 late April.

I tested positive for Covid in August. My wife had unknowingly been exposed at work and brought it home with her. I’m male and 62 years old.

It hit me hard. After a couple of days, I realized I needed to go to the ER. They tested me and I was positive for Covid. I spent 12 days in the Covid ward. I needed oxygen but never so much that I needed a ventilator. I was given antibodies, steroids and antivirals.

It was while I was in the hospital that I learned I had CLL. I’d never heard of it. I’ve been told that was the reason my case was so bad. I was also told that if I hadn’t gone to the ER I would have probably died.

The biggest problem I had afterwards is that I had no strength. Simply standing up was difficult and I could only walk very short distances. With the help of physical therapy, I eventually overcame it but it was much slower than I ever expected.

I’m sure doctors know much more now about fighting Covid than 9 months ago. I wish your Dad the best.

I am 55 W&W. My wife and both got Covid in March. Mild head cold only for me. Received no treatment. Lost taste and smell for about a week and completely over it in 2 1/2 weeks. Best wishes

I am 63 and tested positive Dec. 30. My husband also tested positive (he does not have Cll). I had a small cough and my teeth hurt and thought it might be a sinus infection. That is why I went to the doctor but tested positive. It was not anything more that a cold. I was well over it in a couple of days. I did loose my taste and smell and that is the only lingering symptom. And it comes and goes. My husband ran a fever for about three days and slept for those days. I worked out thru our quarantine and feel very lucky to not have a bad case of it. Speedy recovery to all.

yes i had it Nov 2020. Sick for 3 weeks. Chills headache fever day sweats but no lung issues. Really took a lot out of me. took 3 tests to finally come out negative and safe to return to society. My doctors were calm and said take Tylenol and load up on vitamins lots of fluids. May have had different results if i was not in W&W.

Yes, I am 63 yrs old on W&W and had it in November. It felt like the sinus infections I seem to get from allergies every year, so my doctor gave me cough meds and z-pac. I had a really bad cough with drainage and was very tired. Never had a fever but had cold chills. I also lost taste and smell. (which sometimes happens with my sinus infection) My husband had a slight cough but we both tested positive. Never went to the hospital or had bad breathing problems but had chest pressure. ( I have that a lot though because I had histioplasmosis and had part of my lung resected. I use Vicks vapor rub when it feels tight.) I did go get tested for antibodies and still have them from November.

Yes. I started coughing on Nov 16th and was so sick by Dec 2nd that my oncologist called me at home and said he wanted me in the hospital NOW! I was in Vanderbilt Medical center in Nashville, TN on 15 liters of oxygen for a week and then was transferred to their rehab unit for the next 11 days. Total 18 days. I didn't get to stay there long because I had a sudden and thankfully brief respiratory arrest. Could have been a bronchospasm, a mucous plug or blood clot. No clot was ever found on CT scan. Shortly after that my white count started to climb and it was decided that I was going into a double bacterial pneumonia. I was put on 2 antibiotics IV round the clock for the next 4 days and was reluctantly released on the 19th to go home. I had arranged while hospitalized to have home care RN, PT and oxygen at home. I was very, very weak for the next 6 weeks, needing oxygen around the clock. But I pushed myself to move and get up. After 2 weeks at home, I began walking with my husband and the dogs, dragging my oxygen tank with me. I could only do a half a block at first but over time I got further along. I now can do everything I did before getting ill. Walk in morning, cycle for 45 minutes after that, garden a lot. Some of it pretty heavy stuff. Haven't taken my kayak out yet but maybe soon.It has been a real struggle. I still need oxygen with exertion. I wasn't using it but my pulmonologist insisted. I've had some symptoms of anxiety which I come to find out is common several weeks to months later, possible linked to brain inflammation due to hypoxia. Had trouble with lightheadedness for several weeks. Found out my thyroid got turned upside down and I became hyperthyroid. My internist reduced my levothyroxin dose and it normalized after that.

I'm still on this side of the sod but it was a struggle for a while but I'm pretty much back to my active self. It's a nasty bug but with good care and I did have that through Vanderbilt, it can be beaten.

So stay in close touch with your doctors . You can get through it. Everybody is different with this virus. But it is beatable.

Pat

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