"I wasn't even sure I wanted to go through with another transplant."
In her new book, My Glory Was I Had Such Friends, she tells her story of surviving a heart transplant, a double mastectomy after her breast cancer diagnosis, and another heart transplant when her first donor heart failed, and the role her friends played in getting her through those hardships.
The book highlights her female friendships, though its dedication is to her husband, who she focused on in her first book Sick Girl."I want to mention here the vital presence and extraordinary role played by my husband, Scott, who was with me in this story every day in every way with infinite heart and mind," she writes. "Scott has been gracious to support my writing him into the background of this book when, in fact, the inimitable power of his love was front and center."
Read on, be inspired, and then go call up your BFFs to tell 'em how much you love them.
Due to sudden heart failure, I had my first heart transplant at age 25. I would be out of breath walking, my feet were swollen, and when I would lie in bed, I felt uncomfortable, like something was sitting on me. My doctor sent me for a bunch of tests.
Long story short, after much testing (and an admission to the hospital, where I had invasive testing including a heart biopsy and an angiogram), it was determined that I had a virus in my heart and that it would get better in about six months. But, instead, the heart failure worsened and in six months I needed a transplant.
It wasn't until the surgeon removed my native heart that it was discovered, on autopsy, that I was born with a severe heart defect called ARVD (arrhythmogenic right ventricular dysplasia), which meant that my heart was fated for an early demise.
Doctors gave me 10 years to live with a new heart, since over time, the body will reject the transplant organ, but I went on to live nearly 26 years with it. Around the same time it failed (26 years later), I was also diagnosed with breast cancer. Doctors advised a lumpectomy because the tumor was small and seemed to be in an early stage, but I opted for a double mastectomy—I knew that my transplant medicines were cancer-causing, so I figured it was smart to do all I could to rid the cancer from my breast.
Plus, all of the invasive tests that go along with heart-transplant life—the angiograms (I've had 32 of those) and the heart biopsies (I've had 93) are done under a prolonged X-ray to the chest, which can also raise the risk of breast cancer over time.
Two months after that is when I found out my donor heart was failing. I had felt pain down my arms during exercise and rest, but my transplant doctor told me it could not be cardiac pain (transplanted hearts are severed from nerves and these nerves cannot be reattached). But my exercise became really hard, and I couldn’t run anymore. And then I realized my feet were swollen, and I knew from experience that this meant trouble. I told my doctor I wanted to have another angiogram, and it revealed extensive transplant artery disease, called vasculopathy. It’s deadly and incurable. Because of my complexities, my husband and I found out that we would have to go to California to wait for another heart.
My friends watched me go through my first transplant at 25, but with the exception of driving me to the hospital in the event of an emergency, there wasn’t much they could do for me at that time, so my parents took care of me.
Then, 26 years later, after my double mastectomy surgery, I was out of the hospital in less than 24 hours. Even though it was the easiest surgery I've ever had, my friends were amazed. I think that really solidified for them the strength that I had garnered over the years with the heart transplant.
When I found out that my donor heart was failing and my husband and I would have to go to California for a heart, I wasn't even sure I wanted to go through another transplant. But my friend Jill, my best friend from the second grade, put together a spreadsheet for nine friends to rotate flying out there to be with us while I waited. Here was an opportunity for them to finally do something. And once I saw that these woman could commit to me, I realized that I could commit to going through this again. So a spreadsheet was born with nine women on it, and they all flew cross-country from wherever they lived, and I never slept a night without one of them beside me.
I literally never spent a night alone, and as I got sicker and sicker waiting, two friends would come at once and there would be two cots in that room with me.
For the first month, I was able to slowly walk the halls with them, but there was a swift downfall to the point I could only walk a few steps. I was getting much sicker.
My friends would have to straighten out my bed and pillows because I didn't have the strength to do that. They rubbed my feet, and I needed them to help me shower.
At first it was a little weird to stand naked in the shower next to my friend or to have her hands on my back in that way, but it really got me through. We had spa nights, and they decorated my room.
We also had laughs and our best talks ever because I thought I was going to die—that really was the anticipated outcome because after only three weeks in the hospital, my condition worsened, and I was bumped from a middle-point on the transplant list to a high priority status (typically meaning that you have a life expectancy of about two weeks). But having my friends there saved my life as much as the transplant did because I had to make it to that point of getting one. Throughout the two months I waited, I never had to suffer through a night of heart pain without them there.
We know what happened in that room, and it was war-like in many ways. And we won, incredibly so. And we are all here to tell that story. We get together for barbecues, or whatever, we've had some gatherings, there’s a look among all of us, there's a sparkle in our eye because we know what took place.
I appreciated them listening to me even if they couldn’t help, but I also wanted to hear about their problems and feel needed. I wanted a two-way relationship because I could only open up to them if they opened up to me as well. There was an complete openness and understanding among us.
I am living a completely different life after this second heart transplant. I do not live with daily debilitating illness anymore, I am taking only the smallest amount of transplant medication (and less medicine means fewer side effects). And Cedars Sinai in Los Angeles (where I receive my care) is also devoted to the minimum of heart biopsies, which means less trauma to the body and mind.
That being said, I have lived with a transplanted heart for 29 years, which means that I have taken transplant medication for most of my life. That plus all of the invasive testing that I have accumulated means my body has been exposed to extensive X-rays, leaving me at a significant risk of having cancers. And because I am a patient with antibodies (proteins that might attack my donor heart), I am at a higher risk for vasculopathy.
And this is why I live every day with enormous presence and energy and gratitude. I literally bend down and sniff flower after flower. When I jog, I can’t help but smile with each step. When I sit with a friend, I am all hers—my attention does not wander for a second.
Same thing when I am with my husband or son. I am determined to enjoy the hell out of feeling well—it is such a gift. That sounds trite, I know. But life has taught me this lesson and it is deep in my core: today, today, today. It’s as simple as that.