My oh my, 2020 certainly ended with a bang for us girls. Last time I wrote, it was day one of being admitted to Hopkins for Covid. How’d I get it? Who knows. But likely, I came in contact with a surface or person infected with the virus when I went to get labs or to an appointment at Hopkins. Medically necessary appointments, but likely how I picked up Covid none the less.

You may have noticed, I’ve been a little quieter on facebook since I arrived home. I removed all social media from my phone for a couple of reasons. But the biggest reason has to be that when I see people posting not following Covid protocols or refusing to wear a mask, it breaks my heart in more ones than one. To be honest, I can not reconcile those who claim to be ‘pro-life’ yet cannot protect other human lives by wearing a face mask or staying home. Its truly the simplest act of christian charity you can do for me right now, by helping stop the spread of covid. While I will continue to share my story, progress, victories and challenges this year, they will be less frequent on social media. I will post any blog updates on social media and any of the big stuff, but for my own mental well being, I’ve limited social media to only on my laptop for a very limited time each day.

Y’all this virus hit close to home and its the first time in my life, I laid in a hospital bed and I wasn’t sure I would survive. I’ve had 5 heart attacks, 30+ Cardiac Caths, multiple surgeries and the big kahuna of Cardiac Surgeries, a transplant, and Covid was the first time I feared for my life. One night I even considered typing a note to my mom to find on my laptop, should I not make it, because of the severity of the situation and the conversations the team was having.

While many followed along on facebook, the severity of the situation was reserved for mom and I and for 72 hours it was the scariest of our lives. The team was talking intubation, transfer to the CVICU, concern that my inflammatory response was so severe that they weren’t sure if I would respond to treatment….and things took a turn very quickly.

Days 1-6 of being admitted, we were dealing with a lot of nausea, vomiting, pleuritic pain from pneumonia and congestion/coughing. Thankfully, on day 2, I received my first dose of plasma, which seemed to halt the progression of the symptoms. I still had lots of crappy symptoms but they weren’t getting worse.

On day 5, the Infectious Disease team tried to discharge, only I was still vomiting and after a lot of drama, the transplant team got involved and halted all discharge. They then looped in Transplant Infectious Disease to consult and the following day they came by.

Day 6 (Day 9 of Symptoms), Dr. A of Transplant ID, came by who explained she didn’t think that I was past the worst of it and in her experience, transplant patients usually worsen around day 10 of symtoms, when their bodies go into a heightened inflammatory response. She fully expected that I would get worse over the next 48 hours. And she was spot on.

On day 7 of being admitted but day 10 of symptoms, Thursday, my nurse happened to be a PCCU (Cardiac Unit) nurse who had been floated to the floor to cover. She had me many times on the PCCU and she is a gentle giant. An advocate. She is always calm, cool and collected, even in stressful situations, but she also knows how to get her patients what they need. She immediately came on shift and got the resident to order a higher dose of nausea meds, because they had ordered the smallest dose possible, it wasn’t working and she knew what I had needed/tolerated in the past in the PCCU. She came in for evening vitals around 10 and was concerned about my BP/HR being elevated and my oxygen sitting in the mid 90s, the resident instructed her to monitor for now. Only around 2am for the next round of vitals, I couldn’t catch my breath or stop coughing and my oxygen was in the high 80s and my heart rate in the 140s. She paged the resident who immediately came to the bedside, put me on oxygen, got me some water and was able to get my oxygen levels back into the mid 90s. Things were definitely getting worse.

Day 8-10 admitted, 11-13 of symptoms, were the scariest as my lungs continue to worsen. Because I had agreed to enroll in a study, they were doing regular ultrasounds of my lungs and could see that the inflammation was worsening. They had to switch up their plan. This was around the time that the chief of transplant got involved in my case, so we had Infectious Disease, Cardiomypathy/Transplant, Transplant Infectious Disease, Chief of Transplant and Transplant Pharmacy all involved in my case. Afterwards, they explained that there were some differing of opinions on how to treat me by those involved. I learned after discharge that Transplant ID and Cardiomypathy had to do a little bit of ‘getting everyone on the same page’ with ID. Generally, most teams are constantly reaching out to the transplant team with “tell us what you want us to do” and unfortunately this team wasn’t doing that.

Given that I was in so much pain (which was never adequately addressed, but thats a story for a different time) and they needed to control the inflammation/symptoms, I was started on Remdesovir, Dexamethasone-High Dose IV Steroids (this was to protect the heart from rejection as well as covid symptoms), another dose of plasma & doxycycline (antibiotic). Let me just say, those medications make you feel like crap. I literally ate mango Italian Ice and saltines for 3 days. If I see another italian ice anytime, it will be too soon. They wanted to insert a feeding tube if I was unable to eat by the next day. Transplant ID had explained that after about 48 hours of treatment, she expected me to turn a corner and she was right.

Day 11 of admission (14 of symptoms), I began to turn a corner. I still cried myself to sleep, because I was in so much pain and I required IV nausea meds every 6 hours, but I was finally able to eat something and was back off oxygen. On Day 12, from a Covid perspective, I was stable enough that they started talking about discharge. But the Transplant team was looking at my labs with a big fat NO. My kidneys had taken a hit from all the medications, not being able to eat or drink and from the virus. They fully expected them to bounce back, but they were being stubborn, so we pushed bags of fluid. Only slight problem is that you have to do it very slowly with heart patients so you don’t fluid over load them. So we literally ran a bag of fluids for 10 hours. The nurse and I just shook our heads, they weren’t running them slow, they were running them like a glacier could move faster slow. So the IV pole and I were good friends for hours a day and I became that patient that just hit the restart button when it beeped because I moved my arm in a weird way.

Days 12-14 were really about my kidneys and my labs being off. On day 13, December 23, the Transplant Attending said she wanted to see my kidney number come down to at least 1.5 before I went home and if it did, she would discharge me late on Christmas eve. On December 24, the results came in with what number? 1.5. The ID attending when he rounded at 11 had already contacted the Transplant team to say “lets get her home”. And around 2pm, Transplant came by with news I was good to go home. I was annoyed that transplant was saying “we have to see her before she can be discharged”, but learned later that was due to the team the week before trying to discharge too quickly and giving them bad information that I was stable when I wasn’t. Transplant wasn’t being difficult, it was there way of protecting their patient. It took 4 more hours, because we all know no one discharges patients quickly, but at 6pm, I was busting a move out some back entrance (literally) to a designated area for Covid+ patents to be picked up. We were going home and had broken the streak of 4 Christmases in a Hospital.

The week after getting home was spent doing a lot of resting, hydrating, eating what sounded good (I was given a ‘eat/drink what you want this week..we just need you eat/drink’ by the transplant team.) and followup appointments via zoom. I had to taper off the high dose IV steroids to a taper of oral steroids and back to my post transplant steroid dose, so I spent a lot of time dealing with sugars, talking with the team, etc. We have also been chasing elevated blood pressures since I have been home. The team believes it is because we pulled me off my diuretic and my blood pressure med had to be discontinued inpatient due to my kidneys. We restarted it after discharge, but my blood pressures are being stubborn. We changed the frequency, the dosing but my little ticker is just being pesky. We are trying a higher dose all at one time versus a smaller dose 2x/day and if that doesn’t work than we will have to add a second medication. If you are of the praying kind, please pray for my BP to stabilize.

We will also see on Thursday, how the heart is doing as I will be heading into my next Right Heart Cath/Biopsy at Hopkins. This will give the team the best indication of how my heart is doing post covid, from a rejection standpoint, a filling pressures perspective and if lasix is still needed. They also generally do a limited echo at each right heart Cath, but have decided to do another complete echo to check my heart. Pre-Covid the team was very pleased with how my heart had settled in and now everyone is anxious to see how its doing during the post Covid recovery period. I was the ‘freshest’ out of Transplant patient to contract Covid, so really not much is known about the long term effects, but the team assures me that we will address whatever issues arise. Any infection increases your risk of rejection, so we pray that the treatment protocol they followed, helped to prevent that. We will likely get those results on Friday.

Because I am immune compromised, I was told to isolate for 21 days versus the usual 11 days, as I was likely infectious for 21 days. Mom and I lysol’ed everything in sight, stripped the beds and disinfected and washed anything we could, in the hopes we got this virus the heck out of here. Because I would likely still test positive, but not be infectious, I did not have to get a Covid test before this Right Heart Cath on Thursday, nor will I for 90 days post infection. And my nose rejoiced! Hopefully, given that Mom also had Covid and has the antibodies, they did not feel that she would likely be re-infected when I came home, but we are keeping a close eye and disinfecting frequently. Overall, Mom had a mild case and had differing symptoms (Thank God…that would have done me in if otherwise), and she is continuing to recover. She has a lingering fatigue and cough (which our doctor said is to expected for a few weeks). And for that we are grateful. Thank you to everyone who did meal drop offs, tea drop offs, goodie bag drop offs while she was sick, it did my heart good to know she was well taken care of while I was inpatient.

I resumed my daily walks this week and its low and slow. I am starting back at 30 minutes and 1.5 miles which is half of where I was pre-covid. To say its frustrating would be an understatement as I was finally feeling like I was making forward progress from a cardiac perspective. I am allowing myself to grieve the fact that I had covid and took another hit to end the year and thats okay. I am grateful for my new heart, because had I had the old one, the team tells me I would not have survived. Its okay for grief and gratitude to coexist. To mourn that what was lost or challenging. I stood at deaths doorstep more than once in 2020 and thats a big pill to swallow. The Transplant team NPs have been so good checking in how I am doing mentally and physically and recognizing that Covid was another trauma on top of an already trauma filled year. All of us experience trauma in 2020, who could you reach out to and check in on this week? What if we started 2021 by adding a calendar reminder to reach out to one friend a week to see how they are doing, how you could pray for them or what great thing happened for them this week? 2021 is here, the pandemic is still here. We must all help carry each other through this year.

Perhaps my perspective is different about Covid because I’m immune compromised and it almost killed me, but I would beg you to follow all protocols. Wear a mask. Stay home.

#HOPEWINS
#BECAUSEOFJESUSANDADONOR