Every day I am asked, “How are you?” I ask the same of my husband and children each day. I ask it of strangers on the street, friends on the phone, and dance moms at practice. I can’t imagine the number of times a day that, “How are you?” is uttered. How many times do you reply with something other than, “Great!”? How many times do you truly listen to the response you are given? I think that asking, “How are you?” has simply become a sort of nicety and people rarely actually want to know how you are doing. Since my transplant this has changed a little bit. People do seem more genuine when they ask how I am doing but I am not sure if they really want the answer.
Last month in my blog post I mentioned Trevor, the 15 year old who received a heart transplant, and some of the horrible judgmental comments that were made about his gratitude toward the donor family. I imagine that when people ask him, “How are you?” that he sticks with the simple “Great!” Although I can’t speak for Trevor, my guess that he remains with a simplistic answer stems from my own experiences. I often reply with, “Great. Learning to cope with side effects but I’m so happy to be alive!” All of this is 100% true. It also feels good to be able to share some of the difficulties without being judged.
So, how am I?
I take 29 pills a day. I take 10 to prevent rejection, two for blood pressure, one for cholesterol, one for reflux (caused by the anti-rejection), three for magnesium (depleted by anti-rejection), two for calcium (depleted by anti-rejection), one for vitamin D, one to prevent pneumonia, one anti-viral, three for migraine prophylaxis, one aspirin, two spironolactone (I’ll explain this one in a minute), and the almighty prednisone. My phone has four alarms set daily for medication.
While I was in the hospital I had two seizures caused by one of my anti-rejection medications. They immediately switched the medication but my brain was still swollen with posterior reversible encephalopathy syndrome (PRES). As of April, my head CT is completely clear and I am off of my anti-seizure medications but I am still suffering the consequences. I can’t drive until August. I have a new found empathy for people with chronic seizures (call me if you need a ride!).
Oh prednisone! This one ever so necessary drug causes so much trouble! I’ve gained 30lbs. I could eat nothing but lettuce and run all day but the prednisone holds fat like Lennie holds a rabbit. I constantly feel hungry. It doesn’t matter if I just ate Thanksgiving dinner my brain no longer recognizes being full. I can’t sleep. My hair is falling out of my head. So far I have avoided becoming diabetic but as long as I’m on prednisone I’ll have to be very careful.
Earlier I mentioned my prescription for spironolactone. This medication will hopefully help me combat my least favorite side effect courtesy of the anti-rejection medication cyclosporine. I’m growing body hair… EVERYWHERE! Yes! I said it! My hair is falling out of my head and growing everywhere else. My four-year-old has actually asked, “Mommy, does your new hair keep you warm?”! Needless to say, I’m skipping the bikini this summer!
I am in the doctors office at least once a month. Immediately following transplant I was in the hospital once a week for a cardiac biopsy. I am taken into a catheterization lab and given lidocaine shots in my neck as the doctor reminds me, “This is the worst of it”. At this point I’m resisting the urge to ask him when he was in my shoes last to be able to tell me which part is the worst. They then insert a small catheter through my neck and into my heart where they take a tiny sample of heart tissue and send it off to the lab to check for rejection. The results don’t come back for 24 painful hours. My biopsies are now down to once a month. I also have frequent chest x-rays and echocardiograms (ultrasound of the heart).
I feel like a stranger in my own body. The weight gain, scars, and side effects make me feel like I am living in someone else’s body. I’ve had to buy all new clothes which, when you’ve gained 30 lbs, isn’t as fun as it sounds. Don’t even get me started on shopping for swimsuits. I’m trying to remind myself that my kids won’t remember that I looked like Sasquatch but they will remember that I swam with them.
I’m a little paranoid. I feel like people who don’t know me talk about my weight and extra fur. I feel compelled to explain that medications have taken over my life. I went to get a massage a week ago and overly tipped. Who wants to massage the hairy girl?
My family and I are still fighting a battle. When I close my eyes I can hear Dan’s voice shouting for help as I succumb to my first seizure. Knowing that I can’t get that sound out of my head I’m sure Dan can’t un-see my seizures, me being rolled out of surgery unconscious, the horrible amounts of pain that followed. Upon my return home, Mary Ann would hug me and say, “My hugs and kisses will last until you die.” I was devastated.
It is easy to think that once you receive your transplant everything will be fine, easy even. My battle post transplant may even be harder that the battle before.
I AM GRATEFUL TO BE ALIVE – I LOVE MY DONOR AND TEAMMATE
That being said, post-transplant is a hard road. I am still fighting for my life. My family is still recovering and supporting each other emotionally. I think of my donor daily and what she and her family gave up for me. I think of how her family would give anything to be in my shoes and have her back. I will fight every day to show my appreciation for this gift. I will take care of my pristine new heart, but it will not be easy.
How am I?
Great. Learning to cope with side effects but I’m so happy to be alive!