My cytomegalovirus (CMV) has been under control for three months now and as a result I’ve been able to do things I haven’t done for a long time. I went to my parents’ cabin and stayed overnight, spent a week at my sister Holly’s house sharing a room with my five year-old niece Natalie, and I organized and attended my friend Sofia’s Bachelorette Party. Things haven’t been completely anxiety-free, but still a stark improvement from my CMV days.
As discussed in my previous post, Re-Entry, Otherwise Known as the Emergence From Crisis Living, at long last, my life is starting to feel somewhat stable again. My new normals include weekly bloodwork instead of monthly and a Creatine Kinase (CK – an indicator of muscle damage) level that is higher than I ever could have imagined possible, but life is generally good and worth living. I feel like once again I am the master of my own fate, and once I pull myself up by my bootstraps, things will be great again. Maybe even pre-heart failure great, with adaptations.
So when my latest heart biopsy turned up level two organ rejection last week, I freaked out. Since my heart transplant every other time I’ve had level two rejection (three times) I’ve either had to get my butt to the hospital for a couple of days of an intravenous (IV) drug called Solu-Medrol or my immunosuppression drugs got increased.
Except as I’ve heard from my transplant doctors in the past two years so often that I could probably recite it in my sleep, every transplant recipient has a window of therapeutic drug use that keeps them from both rejection and infection. Too many immunosuppressive drugs and your immune system can’t function sufficiently enough to keep infection at bay. Too little immunosuppression and rejection sets in. It’s a delicate balance.
I write that statement with gritted teeth because I am sick and tired of hearing it. If I see another doctor raise their palms up in front of me trying to mimic a scale balancing two objects, I am seriously going to have to take a page from Natalie and use my words to convey my frustration.
I freaked when I heard about the level two because I know that playing with my immunosuppression drug levels opens me up to another CMV recurrence. I freaked because a recurrence of CMV means at least three weeks in hospital, and who knows how many weeks of daily hospital visits. I freaked because I don’t know if I can do it again after having my three months of relative freedom. I freaked because I fear untreated rejection will cause permanent damage to my new, healthy, normal, beautiful heart.
When my transplant coordinators told me that sometimes they don’t treat level twos, opting instead to re-biopsy in a couple of weeks and hope for a lower level, I was surprised, scared, relieved and anxious. I had assumed I’d be immediately called in for a Solu-Medrol IV and hoped that maybe I could delay it until the next week so I would still have the energy to be a bridesmaid in my friend Sofia’s wedding over the weekend. Instead I was faced with something I wasn’t expecting: No Man’s Land. A threat to my health and well-being had been identified, but nothing was going to be done about it for at least two weeks. From a CMV standpoint, good news, but from a rejection standpoint, not so good news.
In the meantime, they told me not to worry about it.
But right now I’m in the middle of No Man’s Land with another week to go before my next biopsy. Another week of wondering what the results are going to be and hoping that the level two will just magically reveal itself as a fluke by turning into a level zero. Another week of wondering what I am going to do if the level two doesn’t go away and treatment for rejection opens me up to infection. I have good reason to worry and I hate the lack of control I am feeling.
From March 2002 to April 2011, the government of the United States employed a Homeland Security Advisory System to assess the country’s risk of terrorist attacks. The system used five colours to indicated the level of risk, Green for low risk, Blue for general risk, Yellow for significant risk, Orange for high risk and Red for severe risk of terrorist attack.
As I related the story of my level two rejection to Holly and how I just wasn’t supposed to worry about it, she agreed that worry was inevitable but also suggested that maybe there were levels to worry in my case. After further consideration, I realised she was right, and that the Homeland Security Advisory System was actually an apt system for assessing the worry level required for each situation.
In my body, three terrorist factions exist. My original problem: Glycogen Storage Disease, Type 3A (GSD), the potential for rejection from my body’s immune system, and the potential for infection depending on my immunosuppressive drug level. Thanks to the fact that my GSD is never going to go away and will continue to cause damage to my body, I will never achieve a Green, low risk for terrorist attack situation. Instead, my base level is Blue, indicating an ongoing, general risk of terrorist attack.
Back in October when my CMV level was high and I found out I was resistant to the drug my doctors had been using to treat it, my Homeland Security level was Red, seeing as I was facing an imminent terrorist attack of infection on my body. Treatment with Foscarnet downgraded me to Orange, or high risk for terrorist attack, and for these past three months I have finally come back down to being a Blue.
But now the stakes are being raised again, and although I`m trying not to let worry run my life, I know I am no longer a Blue. For the next week I will be a Yellow, knowing that level two puts me at significant risk of terrorist attack from rejection and through treatment, infection.
Ultimately I just have to live out this week and let the chips fall where they may. The challenge is continuing to live my life in the meantime without letting fear paralyze me completely, no matter what the level of my Homeland Security is.