“Yeah, Doug? If you want to go over the contract, we can work on that meeting next week.”
“Mr. Fiore, this is the nurse. Did you need something?”
In the days following my dad’s heart transplant two years ago, he lost touch with reality and did many bizarre things. One was mistaking the nurse-call button for a telephone. He kept activating it and assuming the answering voice—a female one—belonged to Doug, a man who serves on a board with him. That was Doug Day.
There was also Espionage Day, when he thought people on the hospital room TV were watching him and talking specifically to him. Then came Backwards Day, when he was very cold and kept tossing off his blankets, because—as he tried to explain—being cold meant his body was actually hot and needed fewer blankets so that he could warm up. He also had vivid hallucinations of people dying on the floor of his hospital room, the entire medical staff conspiring against him, and air-vac’d patients being left on the helicopter pad in the rain. It was disturbing, because it was so real to him. That week I learned that temporary psychosis was a normal side-effect of his time on the heart-lung machine. I didn’t learn this from his doctors. I learned it from chat rooms designated specifically for transplant recipients.
Truly, I believe the journey to and from transplant is a little easier when you have comrades in arms, whether they are farther ahead or father behind in the journey. In that sense, transplantation is a little like becoming a new parent. There are many other parallels between transplantation and having a baby: expectancy, uncertainty, fear, new life, more fear, profound adjustment, and finally, a new normal.
I’m amazed that none of these parallels occurred to me before talking yesterday with a woman named Cindy Herbst. She’s the cofounder of Restoring Hope Transplant House in Middleton, Wisconsin. As a relatively new grandma, she could easily see the parallels between birth and transplantation. They’re abundant.
I’ve been curious about Restoring Hope Transplant House ever since my dad received his heart. During one of my many late-night Internet searches while he was recovering in the cardiac ICU, I stumbled across news of this “home away from home.” It would be an affordable and comfortable hostel of sorts for non-local transplant recipients and their caregivers before, during, and after transplantation. And it would be opening not more than 20 minutes from my front door. I’m happy to say it is now up and running, thriving even. But it’s quickly outgrowing its space. The 5-bedroom, 3-bathroom house has already had to turn away families due to periods of no vacancy. Fundraising is now underway to expand it into a 16-bedroom house with private baths.
STARTING TODAY AND THROUGHOUT THE MONTH OF MARCH, I will be donating 80 percent of the profits from the sale of my book, After Birth: Unconventional Writings from the Mommylands, to the Restoring Hope Transplant House. I want this nonprofit to thrive! Here are a few things to know:
- Families pay $35 per day for a stay at Restoring Hope. The actual cost of keeping each room open and running is $107 per day.
- Restoring Hope has hosted more than 160 families since the end of 2013. Yes, you read that number and date correctly.
- Madison is one of the few places in the country where veterans can receive transplants through the VA program, at the University of Wisconsin Hospital. So, many veterans travel here from distant states to receive transplants. My husband, who was a physician assistant at the VA hospital, once had an out-of-state patient who lived in a hotel here for an entire year while awaiting transplant. (A waiting recipient really must be ready to go, right away, when the moment presents itself.)
- Right now, I can almost guarantee you that you know someone—or will know someone—who is the recipient of a transplant, waiting to receive a transplant, or a future organ donor.
- Right now, I can almost guarantee that you know someone—or will know someone—who is expecting, is a new parent or grandparent, or plans or hopes to be one of these things. My book is inexpensive and makes a great gift for anyone in that boat. Buy it for a baby shower. Buy it for a mom. Or buy it for a dad (seriously, read this dad’s review of it here).
I want to raise money for Restoring Hope but also awareness about it. And because there are fewer than a dozen such transplant houses in the country, I’d also love to spread the concept and hope it catches fire. Please share this post right now. Then please take the simple and life-changing steps it takes to be an organ donor. If nothing else, file this post away for your future reference: Life truly turns on a dime. You can read a past post about my dad’s transplant here.