The general idea is known widely: some people just have a higher risk of getting sick. Those people are those with underlying health issues, those with compromised immune systems and those of certain age groups. But, what is not known widely are the affects those of us have who are a higher risk. It doesn't just equate to an extended time period for having to deal with symptoms of whatever cold or flu we manage to brush by and pick up. It also doesn't mean a simple vacation to the hospital for a few days to lay in a bed, having food served to you and nurses take care of you while you leisurely watch TV and rest. NO! It is NOT like that, healthy people.
Let me tell you first hand what this COVID-19 virus means to me at the present time.
It means worry- another germ to have to fight while I'm wanting my body to make sure those lung nodules don't grow. I need my good cells focused right now.
It means higher anxiety and panic- because if I end up with this, I'll end up with more tests... which ultimately comes with pain... and thus possibly more trauma. Anesthesia does not work on me like most, I wake up during surgeries and remember things. I am diagnosed PTSD and for good reason, so procedures scare me, to put it lightly. That's not the only thing to be anxious about- anxiety and panic about the possibility of cancer coming back because my immune system is hit already. Can it fight off more than one thing at a time? Or three? Or four!?!
It means a simple cold or flu could result in an ER visit. That then will expose myself to additional unnecessary potential health threats.
It means that if I have any new symptom, they'll test for EVERYTHING because of my medical history.
It means guilt- feeling bad for my family who I can't do fun things at home with because I have stronger symptoms that last longer than the average person.
It means depression- self-loathing and pity coming in and out every day.
It means frustration- because I want to be healthy and do not feel I am.
It means confusion and put-downs- is it all in my head like people say it is? Am I a hypochondriac? (The answer to those are NO- if you are immunosuppressed... your concerns are ALL VALID! So, stay strong in the mind!)
Healthy people get the symptoms and can care for themselves at home. But someone like me... we go to the ER - per doctor's orders.
Yesterday, I awoke with excruciating pain moving around right lung area on the back side. It shot through my chest into the front (lower than my heart so I wasn't too worried about it being that). I felt pain straight up through my neck and into my head. I was not able to take in a full breath. It was this pain that woke me up. I had my husband try to massage those areas in hopes it was muscular to no avail. I was nearly in tears; the pain was so agonizing. Of course, since I suffer from anxiety and panic, I ended up taking my panic medication right away. I did stretches and meditated. I went through all my breathing techniques... this over the course of an hour and with no relief.
Let's go to the beginning of my symptoms. It's February 1st... COVID stories are just beginning. In the couple weeks prior, I was exposed to others who were sick with fevers who did not get professional care but continued to work over the last couple of weeks because those individuals generally do not need a doctor for a cold or flu. COVID was not a big concern in the US at this point. I am now showing the first symptoms of being sick. I quickly lose out on 2 weeks of work (aka pay) because I am so sick. I visit my primary care physician and an urgent care doctor because any sign of respiratory illness can be serious for me and pretty much automatically means x-rays and bloodwork. I get a prescription for an antibiotic among other things like nasal sprays, allergy meds, and then a couple other things. I rest. Housework piles up. Work people start wondering how long it will be before I can get back to my duties because it's taking a toll on others. Our trip (my husband and I) to Phoenix is canceled for the time being. My psychologist appointments and my physical therapy appointments are canceled as well.
It's February 14th. We didn't get to celebrate Valentine's Day on the day because I was so sick. The whole family understands, but I feel guilty and frustrated that I'm not better at this point, though I can feel my body fighting and recovering a tiny bit each day. I'm physically and mentally spent at this point.
By Monday, February 17th, we decide I'm well enough to take that trip and I am now at least able to designate a few hours each day on the computer a day for work. That can be done at my parents' out in Phoenix. So, we book our flights for Wednesday and head to the airport then. We've had no known exposure to COVID at this time.
We are in Phoenix now... and I'm finally feeling like the sun is giving my body some extra strength it so very much needs to finally kick this cold out! On the third day, I wake up to a completely different feeling though. My chest is tight- very tight. I can breathe, but I'm worried about not having my inhaler with me. I don't usually need one other than when I am attacked by a germ of any kind because inevitably, it always ends up in my chest. I can't find a doctor who will prescribe one over the phone for me on a weekend, so I get the OTC version, which is ABSOLUTELY DISGUSTING to taste! It helps a little. I'm now worried about our return flight because I'm clearly not better and today obviously getting much, much worse; but, I need to get home. When I was a child, if I flew when congested, it would always end up with ear pain often requiring medical attention. My mom used to give me a decongestant before every flight, which was smart and actually did help prevent that ear pressure. Now that I'm in my 40's, I am managing high blood pressure and am not able to take those decongestants safely under any circumstance. So, I call my physician to see if this one time it may be ok. No. No and just in case I didn't get it the first two times: NO! Alright then... now what? I can only pray for the best as I board the flight home on February 23rd.
OMG... the pain in my ear is one I've never felt before during the landing of that flight into Chicago. I really didn't know what was going to happen during the whole ordeal, but of course, my worst case scenario pictured my head popping inside and blood shooting out of my ears. (That didn't happen, thankfully.) I get off the plan in panic because I literally have no hearing in my left ear. We drive straight to an urgent care where I'm given a different antihistamine, another antibiotic and I get my inhaler refilled. The next day I can hear, but it's still painful and crackly. This will continue even to today.
Over the next two weeks, I am coughing in fits so hard that I wonder if I can get enough air at times, my throat is raw, I can't sleep, my family can't sleep, I'm wounded from coughing and my prosthetic hip area is achy. I'm not sure how I'm going to get through this at all seeing no light at the end of this tunnel. I end up seeing my primary physician again, and visiting two more urgent care doctors throughout all this. All say the same thing... "if you're not getting better in a few days, I want you back in." (Healthy people... you likely don't hear that every time you're in the doctor's office.) I have extra visits, which makes me a bit more concerned that the doctors are concerned but also makes me wonder if I'm overreacting and they're just trying to keep me calm and validated. I end up on a third round of antibiotics with a new doctor while my PCP was out of town. Now I am given a NEW concern "I'm going to give you this antibiotic in hopes we can get that ear to clear up but I'm concerned about your gut bacteria being on antibiotics so long. You could get C-Diff. So, I want you on a specific pro-biotic for at least 2 months." For those of you unfamiliar, C-Diff can be deadly if not taken care of quickly. So I got that to worry about now on top of everything else. Of course, I go home and immediately google symptoms of C-diff so I can watch for those.
About 5 days into the antibiotic, I start to have symptoms of C-Diff, which are basically symptoms of EVERYTHING, so literally it could be something small and unimportant; but I stop taking the antibiotic anyway just in case. It didn't seem to be helping anything anyway. My symptoms are all still about the same at this point.
Now it's March 18th and I'm still coughing, I still have fevers on and off, I'm still achy, I have bowel issues, my ears are crackly and I'm still experiencing sinus pressure. I'm now overly concerned that my body isn't fighting this off... whatever this is and if it can't fight THIS then can it keep those lung nodules from growing!? That's the thought of a cancer fighter/survivor when we get sick! I am unintentionally put down by friends and family trying to make me think positively and feel better about, but it just makes me feel like it's all in my head and that I'm being overdramatic. Now I feel alone, sad, defeated. I call my primary physician because she said to me on the last visit that If I'm not better in a week, she will call in an anti-inflammatory for me, but given the current COVID status by the time this day arrives, she instead directs me to the ER. I don't go because I don't think I should go and risk more infection when I'm not feeling horrible enough to make a trip to the ER. So, I instead speak with my oncologist's nurses for a second opinion. They inform me that they think I should be COVID tested and they have a hotline for all of my doctor's patients for screening. I call. I'm screened for about 45 minutes over the phone and placed in the yellow risk category teetering between yellow and red. Green is low-risk, yellow is medium and red is high. They tell me my appointment for testing is set for tomorrow at 11:50am at the drive-through tent at University of Chicago. The nurses made it clear to me that if ANYTHING changes between now and the time of my appointment to head straight to the ER. I thought, that's only hours away... this is not something I worried about AT ALL and just plan to be tested in the morning.
This brings us to March 19th, the day I wake up and can't breathe fully. Great! Something changed! A new symptom! Of course this is happening to me. So, after all the things I did, my husband and I get in the Jeep and head to Chicago for testing. I make an agreement with myself that if I can get myself feeling just a little better before we end the COVID test, I won't go to ER; but if I'm still in on the same pain level, I'll just hop over to the UC ER, which is what ended up happening.
We drove up to the test site and were stopped by officers blocking the street. We had to keep our windows up and communicate through the glass. He let us through and we pulled up to the first tent where I had my license in the dash. The woman in full garb held up a sign from a distance stating to keep the window up until told to roll it down. She took my info and directed us to the next tent which was drive through. We entered the tent and when it was time, I rolled the window down to communicate with head nods only then they swabbed one nostril (and possibly my brain) and we were done.
Now I get to show you FIRST HAND what it means for people who are a higher risk to be exposed to something that is not such a big deal. This is why social distancing for COVID-19 is so important... and it's important for EVERYONE to isolate. You could be an unknown carrier who passes it to someone who then carries it to someone else who has a family member or friend who is immunosuppressed, or a red risk!
There's a small line at the door to the ER. They are making EVERYONE wear a mask and they are geared up, screening each individual before even walking into the lobby. Of all the people wanting in, I was the only one not sent away and was taken back instead. Why? Because of my medical history. My husband wasn't even allowed to come with me... nor was he allowed to wait in the lobby! He had to sit in the car in the parking garage the entire time! He wasn't even allowed to pass on a phone charger to me mid-day.
They took me straight into isolation in a COVID-designated room. They took vitals and over the course of 10 hours, I went through more than what most healthy people go through. My left hand gained an attachment in the form of an IV. That went smoothly, but hurt more than usual. My veins gave up some red blood cells to fill multiple tubes for lab testing. Then the x-ray tech came in to check for pneumonia, pleurisy and/or a collapsed lung because I have experienced all of those in the past which makes me more susceptible to them now. My body was attacked by small, gooey stickers for a quick EKG. These are all things I'm generally advised/required to undergo whenever I enter an ER or physician's office for anything more than a small sniffle because of my history. None of them are really that bad... just time consuming and a little worrisome considering there must be a reason for that protocol.
Then comes the CT. Now, CT'S are easy, but the contrast requires an IV. Good news! I already have an IV in, but this particular IV needs a PICC line that goes in the arm above the elbow. MOTHER TRUCKER! SERIOUSLY!?!? I have super deep veins that I'm sure practice dodgeball in their down time. I know this process and now I'm not so calm. (Not so calm is a HUGE understatement.)
Nurse one comes in, stabs me twice. Gets another nurse.
Nurse two comes in, stabs me twice. Gets the doctor.
Doctor comes in with an ultrasound machine, finds the spot... takes a full 10 minutes (not without tears and tension in my face) and about 9 stabs with internal digging as if there's a very delicate archaeological dig going on here. Gets a line in and says "I got it, but it's not long enough for your deep veins, so I have to pull it and get a longer one." DOG GAMMIT! I asked to please take a break, which he agreed to. He finally gets it in and I am crying with the tension in my face so as not to disturb the PICC process. It's so painful. Even to move my fingers it's painful.
I rest while I wait for the CT, but my arm is on the rail of the bed because the PICC line is on the inside of my arm and is too sore already to touch anything including my own body. Now my hand is cold from hanging out there so I wrap it up in my sweatshirt because I have no blankets at this point. Eventually, I get the blankets. Two and a half hours go by before that CT happens.
Healthy people don't worry much about CT's. They're quick and painless usually. I'm used to receiving contrast for CT's, but this one is a little different. They're looking for blood clots. I'm always cautious to remind the techs that I only have one kidney. People with one kidney either need a different type of contrast or a lower dose. Also, my creatinine need to be checked prior to injection. I get the scan and am rolled back into my isolation room.
Good news... everything looks mostly normal. I ask the doctor (one of three I saw that day) what could be causing this pain then. He said that likely it's pain from my kidney working overtime fighting whatever this germ is, but that the good news is that we have now ruled out all the big stuff. It's important for me now to make sure I'm home and resting until I am FULLY recovered so that my kidney can catch a break and my body can heal. I get a couple morphine pushes for the road, a bag of fluids, a lidocaine patch and a few prescriptions.
Please... do your part. Stay home- that means don't go ANYWHERE so that together we can clear this thing out and get back to allowing us warriors to worry only about the big stuff we already have on our plates.
I do not yet have COVID results yet, but I am anticipating it being negative.
...AND I want to put a HUGE shoutout to all the workers at UC... I was treated with such kindness, positivity and care! Please pray for their health and well-being because that was a phenomenal group dealing with more than they ever anticipated they would... with more to come. I wish they had better protection for themselves because those thin layers or paper gowns don't seem like enough.
THANK YOU, staff at UC! You made a terrifying visit so comfortable for me!!! ❤️