The annual biopsy and other fun stressors :)


I find it ironic that I wrote my last post saying I thrive when life is full of mayhem. I pretty much shot myself in the foot there, because my stress got pushed to the max over the last few weeks!
My two day long annual biopsy was suddenly pushed up earlier because of a potential nurse strike at Brigham and Women’s Hospital (which they have since won! Hooray for no strike!) I hate the idea of leaving Ethan for two full days, and had to scramble together to find childcare for him. Luckily, my parents are close by and they were able to take him for one of the days, and I was able to find a sitter for the other day. I was highly anxious going into this biopsy, since I never know when I am going to have rejection. I always say – heartburn is never just heartburn when you’ve had a heart transplant. Before I got sick, anytime I felt any bodily discomfort, it was no big deal. Since my transplant, I am always panicking that any symptom that I have could potentially indicate rejection. Rejection is exactly what every transplant patient dreads, when your body is smart enough to identify the foreign organ as something that does not belong there, and the body starts fighting against it. If that is not caught early, it can be truly deadly. If it is caught it soon enough, it is treatable with high-dose steroids, and in some cases, chemotherapy. Fortunately, mine has never been severe enough to hospitalize me, though I did have some pretty severe rejection right after my transplant and was treated with a three day long intense infusion.
Being married to someone who has medical anxiety takes this to an entirely new level. I generally want to try to keep it to myself if I am feeling unwell, since I don’t want to send Andrew into panic mode. I can’t even imagine the worry involved being married to me! There are times where I have had indigestion, or have felt as if my ankles were swollen, and the anxiety that I feel inside of myself is indescribable. I spend a lot of my time worrying that I will not have a long life, or that something may suddenly happen to my new heart. I have to remind myself to take deep breaths, and stay present without panicking about how long this new heart will last me. I also like to remind myself that new advances in medicine are happening every day, so perhaps I won’t need another heart transplant in the future. Honestly? The transplant itself was not that bad! The hard part is the emotional aftermath, the side effects of all of the medications, and coming to grips with everything that has happened to me over the last few years without being angry at the world. I know how strong I am, and I know that I could do it again if I needed to.
It is always a huge relief when I have a clear biopsy, since most of the time I do seem to have a very mild rejection happening in my body. This time around, I got word that there is zero rejection, and the heart looks great!  I am slowly starting to wean off of my prednisone. Hallelujah! The day after I got this wonderful news, I was offered a contract with a small publishing company to publish my book! Words can’t describe how excited and honored I am! More to come on this.
Finally, we are still trying to sell our house, which makes me feel pretty much an incessant amount of anxiety at all times of the day.  It is not easy trying to keep the house impeccable and properly staged for any potential buyer! I am excited to move and begin this next stage of our life, but also nervous about the changes. Many of my memories of our house are tied into me lying on the couch with my legs elevated on pillows while I was really sick with my heart failure. I am ready for a fresh start! Lots of changes to come this summer, all very exciting. I am looking forward to spending the weekend with family for the Fourth of July, and I will update again soon!

Author: Alibarton

A mom with a new heart.

9 thoughts on “The annual biopsy and other fun stressors :)”

  1. Stay strong Ali. The whole process cannot be understood unless you have lived it. The stress bubbles with every appt however so much better than where you were before.

    Love the pic of Ethan with the Dunkin cup! Have a wonderful 4th!

  2. The stress is REAL!! I can’t tell you how many times I’ve been sitting on my couch generally feeling weird, thinking “am I overtired? Getting sick? …or AM I DYING.”
    Huge congrats on the publishing deal!

    1. It’s so crazy, who thinks like that? Apparently those of us who have had
      ” heart replaced by transplantnt” !

  3. You are your own hero and such an inspiration. I am giving you a humongous hug right now (and when I see you next too). Life IS precious and impermanence enables us to love its blossoms even more.

  4. You seem to handle all of it with strength and smarts Ali! I have had times where I think the transplantnt didn’t work and I have heart failure again. The mind can trick you since we are so vulnerable it seems. Congratulations on the publishing deal! Good luck with the house as well. We just closed yesterday! Happy to be done with that stress.

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