Don't Panic! It's Just Life.
Surviving CMV infection after a Double Lung Transplant
I wonder who decided on the tones that emanate from the medical equipment in hospital rooms? One particular eerie melody disrupts my spirit, leaving me on edge. "Do-deedo-dodo. Do-deedo-dodo." I'm certain it was playing when I was comatose-- a forgotten memory only to emerge when my ear catches that robotic song.
I am uneasy, shaken by the trauma. Even though this time is different, memories of my past stay here cannot be ignored.
I was admitted here on what would have been my mother's birthday and was placed in a single-occupancy room. The room number was the same as her death date. My omen alarms were sounding off internally.
The last time I was in this hospital, I stayed for nearly a year. Since that time, I haven't had any health complications that warranted another overnight stay until now.
I was readmitted to the Lung Center at the hospital responsible for saving my life almost 2 years ago. Not as a critical patient in ICU awaiting organs for a double lung transplant this time around, but as a patient suffering from a virus commonly acquired by transplant recipients.
For nearly 2 years, my blood tests came back negative for a viral infection called Cytomegalovirus (CMV). I was taking antiviral medication as a preventative measure since CMV is a common condition transplantees may deal with at some point. Once the meds were removed from my daily regimen, the virus was detected in my blood and I began to experience symptoms.
Post-transplant, it is standard protocol for the antiviral medication Valganciclovir to be administered to patients as a preventative measure to protect them from the CMV infection. Typically, patients take it for a year. I was on the meds for 18 months, which wasn’t long enough. I had to learn the hard way that I will require this medication for the rest of my life.
CMV can be contracted by babies in utero, it can be passed around in daycare, and it can even be sexually transmitted. It’s contagious through bodily fluids. In my case, it was passed to me by my donor. Many people have been exposed to it without knowing because they’re asymptomatic or just think they have a bit of a cold.
The thing is, CMV is a pathogen that seemingly preys on the immunocompromised or vulnerable like babies and people like myself. It makes me think of Darwin, survival of the fittest, and Mother Nature culling the herd. But I’ve always been a bit of a rare breed, not cut down so easily.
When it comes to a lung transplant patient with CMV, breathing can become labored, you're more easily winded, there may be extreme fatigue and vomiting. I experienced all of the aforementioned and became concerned.
It's hard not to worry about dying when you've come so close to not being alive. On the one hand, you look at life with so much more appreciation. The beauty in each moment is magnified. You notice what was once overlooked like a bright red rose growing amongst weeds in an abandoned lot.
You take on this mindset like you have zero tolerance for nonsense because time is too short for B.S., but you also watch the clock a little more closely because you're hyper-aware that your days are indeed numbered.
So, when my health began to noticeably decline and basic tasks were nearly impossible to do without heavy panting, pausing, and silently panicking-- I wondered if I was saved from dying 22 months ago just to die now?
Had I handled all that I needed to handle? Are my kids better prepared for life without me now — compared to when I first fell ill unexpectedly? Have I made amends for wrongdoings and now gotten it right?
I'm improving as I lie in bed 615A writing this. The treatment is going well and the virus is no longer detected in my system just 3 days in.
I question what I've learned in my 43 years? What I know is I'll continue to cherish the moments I have. I'll do my best to prepare my kids for life and although death is a part of that process it's not the central focus. Appreciating the gift of living and enjoying all life can offer is the point.
So, as I hear the popping and crackling of the bed designed to prevent sores by periodically shifting my weight; when I hear the alarms from the IV pump or the "Do-deedo-dodo" from across the hall-- I appreciate the fact that I'm still here to complain about it. So, I tell myself not to panic because it's just life and I'm blessed to be living it.