Hey everyone,

Thanks for all the love, prayers and support on sharing that I have tested positive for Covid. Many of you are just as surprised as we were, given how isolated we are/have been, except for medical appts. Are we nervous? Yes. Are we scared? Yes. Do we know how my body will handle an infection immune compromised? No. Do we have a lot of questions? 100% yes.

It’s 5:30 am as I write this and I just signed the consent to receive plasma. Hopkins is currently only offering this to mostly two groups of people: transplant patients and immunocompromised for other reasons, so I am able to receive it. It will help my body fight the infection. As a transplant patient it is not without risk to introduce new antibodies into the system, but all teams gave the go ahead and feel the benefits outweigh the risk. As this is a blood product, there is always a risk of a reaction but they are going to watch very closely. Prayers appreciated.

Speaking of the heart..what do we know/not know?

We are doing an echo, CT scan and I’m getting troponins drawn and an EKG every 4 hours to watch for even the smallest change. So far, the heart is looking good. Working a little harder, but doing well, with a slightly higher BP/HR.

Does Covid increase my risk of rejection? Not much is known specific to Covid, but any time your immune system is activated for any infection, it increases the risk of rejection.

Will they check with another cath/biopsy? TBD. I was actually scheduled for one next Tuesday but they generally do not want to take Covid+ patients to the lab because it’s not negative pressure meaning more risk of aerosol particles, thus exposing others. It requires the lab to be shut down and disinfected, thereby limiting access for critical patients. They will make the decision in the days ahead. It is likely I will remain inpatient until they can do a biopsy/cath likely when I test negative. This likely will not be a brief admission.

What else are they planning? I have had labs drawn pretty much every two hours for a variety of tests, per cardiomyopathy’s guidance. They also started me on a broad spectrum antibiotic until blood cultures result in case there is another infection anywhere else. They are still deciding about giving me some other medications for COVID. They also have to pull back on some of my anti-rejection meds to give the ability a little help to fight Covid.

It’s certainly a lot of coordinated care and transplant makes it way more complicated. But they are providing the same great level of care.

Symptomatically, overnight dealing with a lot of chest tightness and nausea but both are being managed.

One day at a time…because Hope Wins.

Another week down in the recovery process. As of yesterday, I am on modified sternal precautions. I can now start lifting, pushing, pulling more than 5 pounds. 🙌🏻 Every hospital has a different policy and Hopkins was 10 weeks of strict sternal precautions and it is suggested that I do two additional weeks of modified precautions given this was my second sternotomy.

We were so grateful to be home for thanksgiving. And we both admitted Friday, we didn’t exhale until Friday morning: both anxious we’d actually spend a holiday at home. Especially since I was having some abdominal pain for a few days. The team thinks it’s muscular, as it was right where my chest tubes were and I’d been hunched over working on a puzzle, but we are watching it.

We also had a metal ceremony for our turkey trot we did the week of thanksgiving. It’s still hard to believe I have walked a few 5Ks with no chest pain, when I couldn’t even walk down the hall without chest pain, just 3 short months ago.

We just returned from a quick 24 trip to Baltimore to pick up prescriptions, do some transplant labs and an appt with dermatology. Transplant patients and specifically cardiac transplant patients, are at increased risk of developing skin cancers, due to immunosuppressants. As part of my care, a transplant dermatologist is added to my list of specialists.

Today was to establish a baseline, discuss what precautions I need to take (SPF 50 everyday, sun protectant clothing, hats, etc) and to examine my peeling skin from my new meds. I really liked the dermatologist and she suggested starting with an $8 OTC cream for my feet and if that doesn’t work then we move to a more expensive prescription cream. I followup in one year and reach out if I need anything in the meantime.

We also redrew some labs today to check my electrolytes, kidney function and tacrolimus level. We are closely watching my kidney function as it’s a little above my baseline which is likely due to the diuretics that my heart still needs. The team will likely have to try backing off the dose a little if my kidneys are still a little cranky. My PCP immediately picked up that my creatinine was high off the last labs and was going to redraw, but since transplant was already drawing, we stuck me once. The electrolytes also help them to know if I’m becoming dehydrated or “too dry” and of course tacrolimus is a routine transplant lab to ensure I am on the right dose of my anti-rejection med. My general cardiologist also added an A1C and ID who is also following my case, added labs. So that’s 4 different doctors ordering labs. Bless it! That also means I had to coordinate with each of them about which labs they wanted. 🤪

I think the coordination mentioned above for just the labs, kind of explains my life right now. Every new medication that anyone prescribes has to be run by the transplant team to check for interactions and get their approval. So when my PCP suggested 3 last week, I had to contact the transplant office, who then had to check with the transplant pharmacist and then my transplant cardiologist. I generally talk with the transplant team at least 2-3x/week and with my general cardiologist and my PCP at least once/week and any other specialists as needs arise. At this point, my general cardiologist resumes care of the day to day management of my case (HR/BP, lipids, etc) and the transplant team manages anything transplant related (immunosuppressants, steroids, etc). Thankfully, they are all at Hopkins so they just cc/call each other to coordinate.

Unfortunately, I would like share something that has come up the last few weeks. We are hearing of people speaking on our behalf, that I am “doing great”. While we have been blessed so far in this recovery, you are seeing the highlights version, not the day to day management that transplant requires or the 10pm phone calls to the transplant NPs to manage a new symptom or report a change in how I’m feeling. You have caught a glimpse of our story, not the entirety.

If you are asking someone how we are doing, but haven’t asked us, I’m going to call you out on that one. Perhaps you could have picked up the phone and reached out to us to ask that question. Call/message and don’t stand behind “we didn’t want to bother you”. Trust me, we won’t answer if it’s not a good time. I share my story to help others but when I hear of people who we haven’t heard from speaking on our behalf, it makes me not want to share at all. Please don’t speak on our behalf and if we come up in conversation, I’d ask you to just say, “I’m sure they’d love to hear from you”.

Rejoice with us in the victories and continue to lift us up in prayer and please be mindful that the transplant itself was just beginning. The real work begins now…

#becauseofjesusandadonor #hopewins