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  • Writer's pictureEmily Breeden

Tips from a COVID Long-Hauler’s Daughter

Hearing my dad tested positive for COVID November 2nd was pretty… anticlimactic, actually. I had been terrified of my 73-year-old parents testing positive since the beginning of the pandemic. But, my dad didn’t sound worried at all, so I didn’t think it was going to be that bad.

He had flown down to Florida, where my snow-bird parents spend winters, for a fall golf outing… and started feeling sick after a few days, right before Halloween. Some congestion, but nothing too crazy. He was bummed about having caught this stupid virus and having to quarantine for 2 weeks, because 1) not being able to leave his condo sucked, and 2) it was messing with his flight back to Wisconsin. The urgent care clinic just told him to quarantine himself and go to the ER if things started going downhill.

On November 6th, he drove himself to the ER. He had a small fever. They sent him home with a Z-pack and told him if he started to feel “short of breath” to go back in. The Z-pack seemed to “help,” a.k.a. just suppress the flu-like symptoms. He wasn’t sure about the “shortness of breath” thing… What did that even mean? He had run 7-mile races and done a lot of swimming, he thought he knew what shortness of breath meant. Monitoring this “symptom” seemed pretty vague.

One of the many COVID phenomenons is that some people who are losing oxygen don’t even realize it is happening. This is what was happening with my dad. I had been talking to him every day, and although he seemed irritated still that he had to quarantine and overall, just sounded a little crappy… he didn’t seem “call 9-1-1” crappy.

November 9th, his neighbor who is a retired nurse, asked him if he’d been checking his oxygen. He said he actually had started feeling good (“happy hypoxia” is where people start to feel okay, even when they are at dangerously low oxygen levels) but agreed to try out her pulse oximeter to see. He was at 73% – she checked it a few times because she could not believe how low it was. Once she was sure it was for real, she called 911. This is where his journey began. (Update: This journey is still continuing. After 30 days in the hospital the first time around, he came home for 5 days… then on Sunday, Dec. 13th, I had to call 911 after his symptoms came back with a vengeance.. more on that on the last bullet point.)

Things We Learned & What to Expect (as if there’s any consistency with this…)

First off, I want to say, I am assuming this whole experience is different for everyone. I am not claiming to know anything, but want to be open about our family’s experience and what people could possibly expect. And maybe some things that could possibly help.

So here we go, some things I’ve learned for anyone who gets COVID or has a family member test positive:

  1. Get a pulse oximeter & monitor oxygen percentages. This way “shortness of breath” isn’t just a guess, it’s a measurement. Everyone has a different baseline, so it’s good to KNOW your baseline. That way you’ll know if it is decreasing. From what I’ve read, healthy baselines are in the 90’s (preferably high 90’s) so if it starts falling below 90% consistently, go to the doctor ASAP. My dad ended up in the hospital having to get get multiple rounds of resmedvir, plasma antibodies, antibiotics, steroids; literally every treatment besides the vent (which he got very close to) for 30 freakin’ days… He thinks that if he’d gone in earlier this all may have been easier to fight with an overall shorter hospital stay, which could have alleviated resources for everyone.

You can order one online, or get one at Walgreens/CVS.

  1. Expect a lot of ups and downs. It seemed like every time there was a “good” day, a “bad” day would follow. It was such a roller coaster the entire time. Very unpredictable, and not linear in any way. There was a lot of crying, waiting for updates, and praying involved. So don’t get discouraged, just be prepared for ups and downs.

  2. Stay positive/faithful! The mind is extremely powerful. Do not give up hope. It can be really hard when there is so much uncertainty (like I mentioned, there was also a lot of crying involved.) But overall you have to keep sending love, hope and healing energy to your family member and yourself every day. Meditation, affirmations, journaling, yoga and breath-work helped me a ton to stay grounded and strong. I even did two hypnotherapy sessions for the first time and focused on sending my dad healing energy. I texted him positive affirmations and googled various “healing energy” meditations for him to try out. If you’re not into spirituality/energy healing it may sound weird, but I swear it made a difference, even if just for my own sanity. Having your family member hospitalized with COVID feels very scary and helpless, so I felt it was the least I could do.

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Pretty much did this every day for my own sanity

  1. Get personal items/valuables home if you can, because the hospital may lose track of them. My dad went from the ambulance, to an ICU room, to another ICU room, to a different “rehab” hospital once he was deemed not contagious anymore. Moving that many times takes a lot of coordination of personal items. On the 17th day, when he moved to the second hospital, his clothes/shoes/wallet/keys all did not make it. After 10 days of a million phone calls to every company involved and several trips to talk in-person to security, Hospital #1 (where we KNEW it was) magically found it… and all of his cash was missing from his wallet. We were just relieved to get all of his cards, keys, etc back… it was just an unnecessary stressor that I would have never thought about if we hadn’t gone through this.

  2. Get some immune system support ASAP. My newest subject to obsess about is vitamin D. There are COVID studies coming out showing how much it can help with recovery/outcomes (here is a good summary of the studies & the benefits, in general.) So I “snuck” my dad vitamin D3/K2 at the second hospital when I could finally visit him… and had him start taking 30,000 IU per day. I got the idea from a friend and then heard about it again on this podcast. I’m not a doctor, dietician, nor nutritionist but honestly, I knew it was low risk and had to do it after all I was reading/hearing. Especially since he was stuck inside; obviously anyone who is stuck inside is going to be vitamin D deficient. I had him take Amy Myers, MD since the pills come in 10,000IU. And for people who get a lot of sun, you probably don’t need that much per day (here and here are other good quality options with more flexibility with how much IU you take.) Besides sleep, exercise, stress management, and nutritious foods, some other supplements that can help the immune system: Vitamin C, magnesium, zinc, and elderberry supplements. Plus just a multivitamin is a good idea since food nowadays is completely lacking in nutrients due to the soil etc… (that could be a whole other blog post.)

  3. If supplemental oxygen is needed once out of the hospital, demand you get a newer machine… and if it malfunctions at all, demand the tech comes out ASAP to give you a new one. Once my dad finally got to come home, a company came out to deliver an InvaCare machine that delivers supplemental oxygen 24/7 (it turns room air into oxygen & delivers via nasal cannula tubing.) It worked alright for a few hours and then started alarming REALLY loudly and shutting down. It was extremely frustrating, and scary for all of us. It started happening right before he was going to sleep. I called the company 3x trying to troubleshoot it… and the last time, they finally sent me to the on-call tech. She sounded irritated to be getting a call at 10pm. After I said we put my dad on the “bigger emergency tank” to sleep with, said “ohh he’ll be fine on that through the night” and that she’d call me in the morning. I didn’t sleep at ALL that night; I was so worried my dad would run out of oxygen. Every time I heard a cough or anything, I’d freak out. Well, my dad did run out of oxygen but luckily, it wasn’t for long and he was fine, we got him another backup tank right away. The tech never called me, so once again I was calling the company all day to get help, as he was using up his “backup” tanks. We were all frustrated. Finally, a guy from the company came out, and got us a new machine immediately when he saw how old it was and how it was acting. Then he reprimanded us for not demanding the tech come out right away and to never wait on that again. Lesson learned…

  4. Have a rehab plan in place. My dad was discharged without much of a plan besides getting some home healthcare visits and occupational therapy. One thing he has been doing is practicing with a spirometer to strengthen his lungs. He also did a bunch of research on COVID rehab resources and put together a PDF… if you send me your email or post on this blog requesting it, I can send you the PDF he created. Lots of good public info out there, like this from Johns Hopkins. My dad is the most resourceful person I know!! 🙂

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This thingy is a “Volumetric Spirometer”

  1. Thank your healthcare providers. Medical workers on the front lines right now are busting their asses. My dad may not be here if it weren’t for the amazing medical workers who helped him fight this virus. Despite some of the little things above (like the lost items) it all could have been a LOT worse. It’s a chaotic time for everyone. Handwritten cards, and/or maybe some COVID-safe treats or gifts will go a long way, and can help the amazing front-line workers see what a huge difference they’re making for families during this pandemic, and always.

  2. Ensure there is a good “tapering-down-of-meds” and monitoring plan. Sadly, after I posted “draft 1” of this blog post, after my dad first came home and we were all celebrating, he ended up having a terrible rebound of the infection and having to go back into the hospital. It started with a cough that kept sounding worse (it sounded uncomfortable, like an unproductive dry cough), had abdominal pain, got a small fever… I finally called 911 when he started losing oxygen. Thankfully he got help in time to be okay, but it was scary. Turns out, he had oral steroids that he hadn’t been taking so the whole rebound was largely due to going cold turkey off steroids after 30 days of treatment. Apparently, you can’t do that, you have to slowly taper them down. So now, he is at the hospital again (as of 12/27/20, it’s been 2 weeks) until he can safely get out again.

Despite some of the scares and frustrations, we are all extremely lucky my dad is in good hands right now. Though he has a lot of recovery ahead, the silver lining is that it brought my family together to create some new meaningful memories, and hopefully what I’ve shared can help others in some way. I’d love to hear what others have learned too if they’ve gone through this.

Thank you to everyone who has reached out and/or just kept my dad in your prayers. We are sending tons of love to those who have lost loved ones or are dealing with the aftermath of this horrible virus. Stay safe everyone, and never take your family or the small moments for granted – family is everything.

Grateful daughters!

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