Living With CMV

One of my biggest fears has successfully become my reality. I knew about the possibilities and this was always an acronym that was talked about amongst the doctor visits and kitchen counter top – CMV. How to prevent it, the risks, and all other things involving this disgusting inconvenience were things I knew. But here’s the thing… I never planned for this. CMV never made it to my nightly routine or next Saturday’s plans. How do you even plan for something so uncomfortable? It’s like knowing your destination but referencing a roadmap that doesn’t make sense. CMV was indeed distant cousins to transplant rejection and best friends with misery.

What is CMV?

So what is this ugly thing anyway? Other than the devils child, CMV is short for Cytomegalovirus. It mimics the flu and most people infected show no signs or symptoms. If one were to show signs, they can expect their immune system to fight it off within several days to a week. However, to those with compromised immune systems due to immunosuppressants (such as me), CMV is no walk in the park. Transplant patients are among those most vulnerable to CMV infection. Not to mention it is one of the most dangerous infections for transplant patients causing organ complications and even death. You can treat it but you can’t cure it.

How did I get CMV?

After a year of living with my desperately needed gift, CMV is something I ruled out as defeated. Prior to my heart transplant I had never been exposed to CMV but, my donor showed signs of having it in the past. Now this only presented itself as a concern to me during the first couple of months post-transplant because it’s typical that infections such as CMV make their debut during months 2-6 after transplant. With making it to the year milestone with little to no complications, I considered myself blessed to have beat the CMV statistic. Well, like all things in my life I was taken by surprise.

About 3 weeks ago I noticed my energy level going down and I ruled out the cause to weather change. With the temperatures reaching single digits, I used my best judgement and predicted it was time to increase my fluid intake and get a grasp of this before it turns into something worse (how ironic). A couple days go by and what seemed to be just depleted energy turned into what I thought was a fever. Going to work was out of the question and my temperature was up to the 100’s. After speaking with my transplant team, my dad and I made our way to the Abbott Northwestern Emergency Department late Tuesday night. After 2 days of testing and receiving basic fluids, I was diagnosed CMV positive.

How do you treat CMV?

I was sent home on Thursday with the same medications I was on fresh after transplant called Valcyte. This is an antiviral medication used to prevent and treat the CMV virus in both HIV/ AIDS and transplant recipient patients. Over the next 3 days my symptoms worsened drastically. The CMV infection was no longer just in my blood stream but it successfully made its way to my GI tract which caused me even more problems and discomfort.

Come Sunday I was questioning a lot of things. I was past the point of dehydration due to constant bathroom trips, I couldn’t keep fluids yet alone food down long enough for my body to absorb any nutrients and I was down 8 pounds. Unable to sit up for long periods along with the mental and physical stress of consistently fainting was enough for me to check myself back into the hospital.

I felt like I had failed myself and my donor. CMV was something that would “get better with time” but it took all of me. Emotional agony from my parents not knowing the answers and from me continuously crying due to frustration brought back thoughts and memories that had been locked away for months. I was facing a low white blood count, chronic headaches, EKG’s, spinal punctures, and bone marrow biopsies just to name a few. 6:30am blood draws became the norm again and daily walks around the Cardiovascular Unit were the highlight of my days.

I thought, “How could God do this to me?” I neglected to realize that I have no control over my life without his guidance. I brought myself back to September of 2017 when I had questioned his judgement before and that’s when it all made sense. That’s when I was reminded that God will never put you through something he knows you can not handle. That he’s already figured everything out so there’s no room for fear or doubt. That you must trust him in all things – good and bad.

It’s been 10 days and I’m still here at Abbott Northwestern Hospital. But I’m here with my best friend (my new heart) and with a different perspective on life’s obstacles. I could be back at my NYC apartment, traveling the world, on a state-to-state expedition… but that’s not where I’m suppose to be. We often lose sight of where we are in life and why we’re there. I encourage you to focus on the now and really absorb your surroundings. Enjoy your kids being toddlers and be patient with your job search. Wholeheartedly understand that you’re exactly where you’re suppose to be in life – I know I am. Until next time…

xoxo, B.

Abbott Northwestern Hospital | 6:30am room view

One thought on “Living With CMV

  1. That’s a lovely perspective. It takes a truly creative and tough person to try to look at what these situations teach you. Much love xo.

    Mikayla @

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