CLL and Covid 19: A Personal Story

After posting all kinds of pretty valid, but ultimately useless advice on how to prevent Covid 19, I caught it. Here is, briefly I hope, my Covid-19 timeline.

October 23, 2020:

My husband left work early with cold symptoms. It is a family business and our son is the general manager, and told my husband that not only did he need to go home (as would any employee) but that he had to get tested. So he did, with the 15-minute test. It turned out he tested positive, and by that evening he ran a 103-degree fever. Our two sons wanted me to go to our cottage (45 minutes away) and quarantine there without my husband. At the time, so suddenly, he was bedridden and too ill to look after himself. I couldn’t leave him. So I very carefully started our homebound isolation. He was already in the guest room, as soon as he came home with the positive diagnosis. I moved all his bathroom items into a separate bathroom as well, aired out the remainder of the house and wiped everything down with Clorox wipes. Initially, he only ate what I brought to his room onto a TV table I’d brought up from the basement. Once he could leave bed, we both wore masks and never stayed in the same room. I would air and wipe down any room he’d been in, which included only the kitchen or the home office. It was difficult, tedious and lonely, but I persisted.

October 30 – November 13, 2020

Eight days later, I figured I was going to beat this and not catch the virus. Ha! On the ninth day, I started to have symptoms of an upper respiratory illness. But I was okay, and kept working remotely with my laptop in the family room (the office was taken up by hubby). I did develop a cough, but it wasn’t anything to write home about. Then came the loss of taste and smell, along with loss also of appetite. It’s hard to eat when food has only texture. I forced myself to eat at least a little bit. I was diagnosed November 1. By the following weekend, I’d been advised to sleep on my stomach to avoid pneumonia. It was either this sleep position, or the cough, that created a horrific back ache. By November 9, I called my husband (who was now back at work, totally recovered) to come home as it was hard for me to function as I was terrified to cough for fear of the pain that shot through my body like jolts, with each cough. He came home and insisted we go to the hospital. We went. After a chest x-ray and a quick examination, I was given a 600mg Motrin and sent home.

I spent the next five days living on Motrin, taking as much as I could, according to the bottle (6/day, max) My body stopped coughing. I would feel the urge, but my body stopped the impulse. It was not intentional, but a response to the pain reflex. I took my temperature and oxygen reading several times a day. I’d not yet spiked any fever, but my oxygen level was slowly dropping.

November 14, 2020

By Saturday evening, the 14th of November, when my husband came home from work, my oxygen level was 77. Time to go to the hospital again. This time, they admitted me. The weird thing is that I almost immediately spiked a fever, right in the ER. I know it was in the 100s, but I was too spaced out to recollect for certain. They left me lying on the exam table for hours, as I waited for an available room. I was in terrible pain from my back, making it very hard to lay on the exam table, but the staff was more concerned about the Covid, understandably, and pretty much ignored my pain. Later that night, I was escorted up to my room where I would be oxygenated and poked till the following Friday when, thank you God, I was released.

My hospital stay was difficult. No visitors allowed, which while understandable, made it hard for both me and my husband. I did keep my cellphone charged, but I could speak for two to three minutes before I would get exhausted from the effort. I could also text, but that, too, was a challenge. TV was boring, which was a good thing, as it meant to me that I wasn’t doing that bad, or I’d just be sleeping. There was no special treatment available, as (in my opinion) all emphasis has been on vaccinating. There was no hydrochloroquine, no ivermectin, no regeneron, no convalenscent antibodies (several friends who’d had Covid volunteered, but it didn’t work that way). All that was available was steroids. Thankfully, the famous (or infamous) ventilators were no longer used as quickly as they were a year ago. They did give me an immunoglobulin infusion, and that apparently helped. As I had the infusion on a Wednesday, and was released the following Friday afternoon.

It took about two weeks till I was functioning normally. It was hard for me to walk, not only from the pain (diagnosed in the hospital via my husband’s remote pleading) as a fracture of my L4 vertebrae (low in the small of the back). Now it is March 11 as I write this, and I’m (finally!) 99% better. I will give bullet points so as not to bore you with an even longer story.

What I did to prevent getting Covid

What I did to treat Covid

               At home: two different antibiotics, Motrin, nebulized hydrogen peroxide (food grade), nebulized cortisone, supplements: beta glucan/lysine, zinc, quercetin, plus all the others I normally take.

               In hospital: steroids via IV, eventually immunoglobulin via IV, and for pain: pain patches every 12 hours, and Tylenol.

Medical Issues since hospital discharge:

  • Horrific Acid Reflux. This was so bad I walked the neighborhood at night to try and recover. This was part of the steroid withdrawal, and lasted just one night. Thankfully!
  • Palpitations and swollen ankles, weight loss. Fearing I was experiencing a new heart condition brought on by Covid, I saw a cardiologist who assured me my heart was fine. Blood tests revealed signs of hyperthyroidism. A visit to an endocrinologist a month later indicated this was a temporary condition brought on by either the steroid use or the Covid itself.
  • Back ache persisted. At first, so debilitated from Covid and hospital stay, I had a home visiting nurse and physical therapist. Now I’m nearing the end of my second round of physical therapy, this time in the same building as my orthopedic doctor.

My conclusion:

  1. All the things I do to keep myself healthy for CLL helped me survive my Covid ordeal (although it didn’t seem so when I was in the middle of it, especially while hospitalized.)
  2. I believe I worsened in the hospital because I was not allowed to take all my immune-enhancing supplements.
  3. I was tested and do have the antibodies for Covid.
  4. It is my choice, at this time, to let others who are more eager than I to get the coronavirus vaccine, in any form. I don’t agree that natural antibodies are any less viable than those created by a new vaccine, so I will go with Mother Nature at this time.
  5. Should I go with a vaccine in the future, I haven’t researched thoroughly, but my inclination would be, given a choice, to have the Johnson and Johnson, as it is less experimental. But again, I prefer to wait until I see data about this.

I’m not certain what I can suggest. This was my experience, and if it helps you, or gives you hope that you can survive should you get the infection, that’s a good thing. It’s not good to live in fear. I wish you life. I wish you good health and hoping we can all get back to normal sometime this year.

– Denise

CLL Covid-19 Update

Denise in her grandkids’ backyard playhouse.

So it’s August 3, 2020, and despite all my expectations, all of us (CLL or not) are still dealing with the COVID-19 pandemic. I have good news to share. While I am still absolutely careful (and “safe”), despite my long-term CLL diagnosis, I’m not nearly as crazed, worried and frightened as I was earlier in the process. Why? There are a few reasons.

Keeping track. I’ve been watching the stats for Michigan, where I live. In fact, we live in one of the “hot spots,” and early in the course of this thing I live close enough to a main street to hear the ambulance sirens wailing on their way to either Beaumont or Providence Hospital. Very unsettling, to say the least. I knew many people who took ill, some who we’d been with socially just about when they’d become infected — two generations of the same family. Thankfully, they’ve all had a full recovery and no hospitalizations.

We are no longer a hot spot. (Yay!) Yes, there are more cases. But I also look at the daily deaths. And daily deaths are way down. I’m sure one of your local stations would have the same where you live. Be sure to click on all three tabs so that you can see the cases, the recoveries, and the deaths. If you look at the accumulated death rate (scroll down to find this), it’s horrible, going up, up, up! But if you look at the daily deaths, you can see that the numbers are way down.

Why is the death rate down? I truly don’t have a definitive answer. We only get the information that is given us. I can make an educated guess. It could be that younger people are among the ill, and they are, as a group, more able to recuperate. It could be we’re better protecting our residents in nursing homes. It could be that the disease itself has mutated and is now less lethal. It could be that we have better treatments that are keeping people from going into that final deadly stage with the cytokine storms we’ve been hearing about. Whatever the case, in southeast Michigan, right here in a former epicenter, we’re doing pretty well. Thank God!

So what am I doing to be safe? (Disclaimer here: this is what I do, and not a blanket recommendation. Consult with your own physician or trusted health professional if you have reservations. Or research it further — which is always a good idea.) Despite these wonderful Michigan indicators, we still have to be careful. Just like we have to be careful all the time, because of our CLL diagnosis. Here is a list:

  1. I wear a mask. I don’t like it, particularly when it acts like summer here, and the temps are in the 90s, along with the attending humidity. I don’t wear it all the time, though. I wear it at work, but only when I have to leave my one-person (me) office and mingle with others.
  2. Disposable gloves. When I go to the market (yes! I go to the market), I wear not only the mask, but also some disposable gloves. I know, I know. “They” have told us not to wear gloves. Sorry! “They” used to tell us not to wear a mask, either. So there. No harm done. I wear some disposable plastic gloves made for sandwich making 🙂 and remove them and my mask, once I return to my car.
  3. Supplements. I’ve added to my boatload of supplements. Time for a list within a list: a.) Quercetin with zinc is supposed to be the next best thing to hydrochloroquine. The recommendation is to take it as soon as you suspect symptoms. I take it prophylactically. Which means I take it all the time, ‘just in case.’ I believe it fortifies me and keeps me from getting ill to begin with. I have no discernible side effects.
    b.) Beta Glucan. Beta glucan with l-lysine. Read the beta glucan article for information about this immune enhancer, which I ‘m now taking regularly. I take the product that includes l-lysine, which is an anti-viral I’ve used before to successfully get rid of cold sores. c.) N-A-C (N-acetylcysteine) Here is an article that includes information about N-A-C, as well as many other helpful supplements. I’ve been taking N-A-C for over a year now to help prevent hearing loss (along with other supplements –ai yi yi, I do take a lot!) It does help for that as well.

Please keep in mind that these supplements are just that…supplements. I still keep to a healthy diet with no added sugar, etc., etc. Get sleep, exercise, clean water, clean air, reduce stress (when possible), and all that other healthy stuff. Read through this blog for more of that.

The bottom line is that I’m treating the pandemic, now, the same way I treat CLL. I take precautions, I stick to them like glue. And then, I just live my life. It feels a lot more normal.

What are you doing to make yourself feel safe during these crazy times? Please write and let me know.

As always, wishing you the very best of health,

Denise