Pandemic Post-Transplant Life

Well, hello, there, friendly blogger friends!

It's been a while since I've dusted off the ol' blog, and like most medical update websites, that's because no news is good news. Things in my medical mystery tour have been going swimmingly, and I've been doing very well, all things considered. 

Of course, there are things going on in the world...LOTS of things, in fact. 

But one of the biggest things recently has been COVID-19. As a transplant recipient, I've been following developments of the novel coronavirus diligently since January when the first rumblings of this illness began making their way into the news.

At first, we all just kind of assumed that this would be one of those things that would creep up and then just sort of disappear, but man...we were wrong. This illness has shut down life as we know it. Social media feeds are filled with people bickering over whether masks are political statements, whether our government has responded appropriately and done enough to intervene and protect our citizens, how we can return to normal life, etc. It's just about all anyone can talk about, it seems.

Having several of the conditions that qualify me as high-risk has certainly increased my anxiety around this whole thing, but I have to give a major shout-out to my team at UT Southwestern. There have been several times throughout this whole ordeal when questions have come up where I felt I needed some specialized advice, and every time, my doctors have emailed me, called me, or responded to requests for feedback. They have monitored my medications, make sure I have felt safe and ensured I have had everything I needed. My Walgreens transplant pharmacy team has been diligently sending me my prescriptions well in advance to ensure I have plenty of meds on hand, calling to check my stock, dosages, side-effects, etc. It has been "all hands on deck" as they have made sure all of their patients are being well-managed.

These months in quarantine have also seen some milestones. Mike and I celebrated our 14th wedding anniversary with a DoorDash dinner from Saltgrass, and we commemorated my 2-year transplant-iversary with dinner and a movie at home (of course).

Also, this coming January marks 10 years since I was diagnosed with granulomatosis with polyangiitis. 

That day, nearly 10 years ago, a doctor told me I had 3-6 months to live.

For almost a decade, my health has come first. I've fought organ failure, brain infections, blood infections, fungal, bacterial, and viral infections, and I've been hospitalized more times than I can count. And I'm tired. I'm tired of it. I'm weary of worrying about my health, and this stupid virus is annoying. 

These last few months I've been thinking about one thing my transplant team told me right after transplant, which was that they do transplants to improve one's quality of life. The goal of transplant is to help me get out and enjoy life more. Ironically, now, we're all stuck at home in hopes of avoiding infection. One silver lining is that at least I'm not alone now. This isn't something that I'm doing because I'm a transplant recipient. It's something I'm doing because I'm human, and just like everyone else, I'm vulnerable to this COVID mess.

But like all of those other infections, I know that this virus will pass. There will be a time when COVID will be under control, and we'll all come out of our little hobbit holes, maybe a little plumper and paler, but we'll come back out and be together - safely - again.

I've been pretty proactive in reaching out to my friends these last few months because I know that this kind of social isolation can be draining. It can start to mess with your mind a bit, especially when it seems so endless. If I could give any message to my friends, it would be to keep checking in on each other and to reach out to our doctors if we have questions or concerns. I have learned that we can't trust the Internet. Truly. Ask the medical professionals who know you and your medical history. If it's been a while since you've had a check-up, consider scheduling one. Make sure you know if you have any of those risk factors for COVID. Check your blood pressure and blood sugar. Listen to your body. Speak up and ask qualified professionals if you have questions. Don't ask your Facebook friends. Your buddy from high school who barely passed science class isn't an expert on infectious diseases. But more than anything, please, please advocate for yourselves. So many of us are afraid of speaking up, so we just do what we're told. It took me getting seriously sick to learn to do that. If you don't feel safe to go back to work in the environment your employer is putting you into, ask your physician about it. See if they think it's safe, and if they don't, see what documentation they can provide for you to continue working from home until the risks are reduced. 

I know that we'll get through this. Sometimes it's hard to see the forest for the trees, as they say, and those trees are pretty dang big some days. If there are days when the trees seem impassable, please reach out. Call a friend, send someone a text, or message me. If social media or the news is ramping up your anxiety, give yourself permission to put it away and tune out for a bit. I've found that being highly informed can either calm my anxiety or ramp it up, depending on the day. 

But more than anything, please know that you're not alone. We're going to get through this, friends!