I Am The Gift
I Am The Gift - Sorry, we just need to make sure you're not a robot. For best results, please make sure your browser accepts cookies. As an affiliate, you can donate 10 per month. Anyone can read what you share. Mrs. Silverstein is the author of Sick Girl and My glory was I had such friends.
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I Am The Gift
Today I will explain to my transplanted healthy heart why he—yes, we—will be dead within days or weeks at best. I crossed my arms over my chest and spoke loudly, covering my heart. "I'm sorry sweet girl." He's not used to hearing me like this outside of my head, outside of our bodies.
So far, the understanding between us is internal. As in our daily races, with my 70's yacht rock playlist playing every step; this heart from a 13-year-old donor jumps through my body with the beat Oh puh-lease — and we laugh together as the pace picks up.
She's an athlete," the doctor told me as the surgeon removed my faulty heart (the first transplant—yes, I had two) and stitched this second beauty under my breastbone. Three weeks later in the high school track, I began a process of trial and error to figure out how to overcome the unpleasant staccato of adrenaline-filled bursts caused by a severed nerve that cannot return to function.
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full electric inside. recipient's breast. The idea to run with a heart rate monitor came from a class I took earlier, which taught me the importance of learning how to feel your peak heart rate early on. My 35 years with two different donor hearts (I was 25 when I first transplanted)—going to public school, getting married, being a mother, and writing two books—were
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it felt like trying to survive with a limited life span. With strict adherence, I follow the strictest interpretation of transplant protocols. I honored my life's gifts with self-control: no butter; do not drink alcohol; running mile after mile in hopes of staving off vasculopathy, an insidious blood vessel disease that often overtakes a transplanted heart in about 10 years.
I take the details of my medical records in and out of every doctor's appointment, trying to develop a strategy as well as the doctor's advice to solve serious problems as quickly as possible. I gave everything I could to support the hearts of my donors, despite the difficulties, and the hearts responded to me with an extraordinary year.
I was lucky. But now I have my chin down and I'm whispering the words bad … metastatic … lung … terminal. This is the end of the road for me and my heart - not because we haven't achieved and maintained brilliant heart health.
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But because the state of transplant treatment failed us. Organ transplantation involves outdated science and outdated, inaccurate medicine that fails both patients and donors. And I understand the irony of being two very successful and lucky heart savers doing this, but my patience also gives me a unique position.
Now standing on the edge of death, I feel compelled to use my experience in the export trenches to explain and challenge the status quo. In the past four decades, the triad of toxic immunosuppressive drugs - calcineurin inhibitors, antimetabolites, steroids - has not changed in a limited way.
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These transplant drugs (which must be taken once or twice a day for life because rejection is a constant threat and the immune system will always see the donor organ as a foreign invader) cause disease secondary and dangerous conditions, including diabetes, uncontrolled high blood pressure.
, kidney damage and failure, serious illness and cancer. Adverse effects on the recipient are not controlled by success: current medical methods do not work well to protect the donor's organs from immune attack and destruction. My first donor heart died from the transplant medicine not protecting the donor heart from rejection;
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The second may die as a result of a weakened immune system, resulting in cancer. Transplantation is no different for chronic diseases that require new, safer and more effective drugs. Treatments for lupus, Parkinson's disease, and many other diseases need to be improved. The main difference is that the patient during transplantation only expects the condition of the disease to be a "miracle".
In a transplant it is the pressure to accept what you have been given and not dare to express a desire, let alone a request, for a healthier or longer life. The side effects of immunosuppression can be painful every day, as my brave little friend who is an organ recipient knows;
we're talking vomit bags we keep in our purses, antacid pills we keep in our pockets for quick access to a cocktail party or a performance at work. We encouraged each other to be creative and constantly looking for small fixes or at least improvements.
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But over time, each of us suffers from serious problems and damages, the kind that make us call the phone at night in tears, the kind that prevent us from an incurable disease that forces us to 'the emergency room and the hospital bed, the kind that drives us.
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We remove parts of our donor organs for biopsies. It leaves us with scars and wounds, skin cancer that grows on the eyelids or ears. We have learned that you cannot clean out all cancer cells with the immune system; will be cut over and over again.
But with shaky resolve, we force each other to laugh at our shared experience, imitating all the doctors' voices and all the ways they told us, "You've been taking the medicine for too long." this drug. Things are definitely going sideways.” I've had the opportunity to sit in on a few closed meetings of professional transplant organizations where doctors discuss the issue openly, if briefly, in
the safe place to express their regrets and disappointments. They shout that after the first five years after transplantation, they do not know how well immunosuppressive drugs will protect the transplanted organ and protect the recipient's body from danger. "These 40-year-old drugs have had their day," admitted the doctor at the head of the virtual conference table. "They are not enough to prevent rejection of cells and antibodies in the long term
and if they happen accidentally, their consequences are fatal. I'm talking about cancer." His colleagues lowered their eyes and sighed. However, criticism and even vitriol awaits transplant recipients who express dissatisfaction with the situation. In 2007, in response to my memoir, Sick Girl, in which I shared all my feelings after my first heart transplant, I received hate mail and online comments: Stop whining…
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