Earlier this year, when COVID19 became a known threat and quarantine was imposed, I felt the range of emotions that you too, probably felt. I also became a keen observer of the actions and reactions of others. It was dizzying to take it all in while seeking a personal stance, due to the wide range of inputs: disbelief in the reality of a threat, obsession over cleanliness, frantic tracking of the news, catastrophic projections of impact, and finger-pointing because someone, apparently, has to be blamed.
When a two-week quarantine proved not to be enough, and human separation stretched on and on, I heard more emotions being shared, centering largely around the impact of disconnection. I felt and saw the sadness of missing each other and being unable to help those who are fragile. There continue to be expressions of anguish over celebrations not observed, worshippers not gathering, hugs being unwelcome, and more. For me, the indefinite nature of this loss of relationship hits the hardest. It hurts.
Early in this pandemic, I knew that these circumstances were somehow, familiar to me. And this is why:
A family going through the organ transplant journey feels similar shock, fear, uncertainty, and isolation every day, for a very long time.
“I can’t believe we are in this situation. Two weeks ago, we were normal people.”
“Will my loved one remain well enough to undergo the surgery, but become sick enough to
qualify for the limited supply of organs?”
“All of this waiting does strange things to your mind.”
All are quotes from guests at Transplant House of Cleveland, with the last being words of a devoted husband/caregiver who sat in our apartment with his wife, waiting many hours to hear if the donor lungs were going to be “good enough” for her transplant. They had already had one call that was a “dry run.” Talk about waiting. People waiting for an organ transplant cannot wait long, and there are no guarantees.
Recently, a Transplant House guest said “…let us tell the world about quarantine!” Even after being fortunate enough to receive a life-saving transplant, patients have to be cautious of exposure to others, to particular foods, to children who have received live vaccines, and more.
Today, as a nation, we are seeing COVID headlines replaced by news of terrible acts of prejudice and racism, violence and destruction, all mixed with peaceful and impassioned protest and new promises to be better. Our senses are overloaded with the attacks on our dreams, our understanding, and our hope.
Similarly, the transplant journey subjects families to an unpredictable and seemingly unending barrage of new and complex information and change. One husband whose wife needed a heart told us: “You know the Charlie Brown cartoons in which Lucy holds the football for him, and at the last second, yanks it away? That’s how we feel. One plan of action is decided, we cling to it and set our eyes on it, and then something changes, and that plan is yanked away.” And there he sat, recognizing his lack of control.
Thanks to YOU, our supportive community of donors and advisors, organ transplant families who choose accommodations with or attendance at supportive gatherings at Transplant House of Cleveland, find important connections that help them stand strong during the toughest of times.
“The Transplant House provided us a refuge of emotional support during a very hard time. I am convinced that the Transplant House was critical to my husband’s survival, and to my sanity.”
“I feel loved here.”
“Our stay at the Transplant House was a real godsend. It was a very stressful time, but the peace, love, understanding and kindness … made life so much easier. I will continue to spread the word about how much you were able to help me, especially, during those dark days.”
Reflect on What We’ve Done Together!
Transplant House of Cleveland has remained open and operational every day since July 20, 2014. You have made this a reality! Through quarantine, economic ups and downs, new development in our University Circle neighborhood, advances within both of our Cleveland transplant centers, the changing of academic years at adjacent Case Western Reserve University, we’ve been here all the while.
Your giving made this possible! Your input also made the vision clear and obtainable. Thank you.
Small but mighty, Transplant House has become known for its “radical welcome” and rapid growth from 7 apartments, to 15, and then to 25, and finally (last September) adding a temporary community space that became alive with people coming together organically, creating a healing community. Local families and out-of-town, finally have a place of refuge here in our community space- away from the world that “just doesn’t understand” the nature of the transplant journey and the layers of complexity within it. We now have a clinical transplant social worker on our staff, who is taking leadership of the support services we have established in our first five years and improving those. More than 940 families have stayed with us here at the House, using more than 30,000 nights of housing. Very typical lengths of stay at the time of transplant and recovery is 4-6 weeks, though 4-9 months with us is common, and some stays have been years long.
The COVID-19 Financial Impact
Transplant House of Cleveland is funded through:
- Earned income from guests who call Transplant House “home,” for a time
- General operating support from Cleveland Clinic and University Hospitals
- Philanthropy- charitable gifts that come in response to direct appeals, through participation in House fundraising events, through social media campaigns, and sometimes unsolicited
Each of these revenue streams has decreased this year, unfortunately. Starting in January, for reasons that are not known, occupancy in the House dipped from a usual 85%+ to 69%. By March it was clear that the “pipeline” that comes via the local hospital transplant programs was being greatly diminished due to COVID 19, as living donor liver and kidney procedures stopped, lung patients were brought into the hospital only if absolutely necessary, and potential new transplant patient appointments were delayed.
The total revenue reduction we are experiencing at this time due to the occupancy dip, the Cleveland Clinic’s difficult decision to reduce support for at least the second quarter, and the cancellation of our 2020 gala, totals $220,000.
Our board is actively monitoring a revised financial forecast and identifying areas where costs can be reduced or delayed. We are also going forward optimistically with our June 5K run event (virtually), and Trustee Brian Vitale is leading that effort with a strong appeal to his personal network. It looks as though we will surpass our original goal of $30,000 (net) for this event. We are managing a “pivot,” so to speak, but the more than $200,000 in anticipated lost revenue is nonethels concerning. We miss our House volunteers terribly, and the workload of operating our 25 apartments and community space is burdensome without them.
Innovations at the House
Our talented staff member, Wesley McDonald, created a system for welcoming our newly-arriving guests remotely, through online registration forms (a practice that will remain), and a tour of campus with instructions for finding one’s apartment through videos (a practice that will only be used in special circumstances once the pandemic subsides). Though we miss greeting people in person and reassuring them, for now the system suffices and is enabling us to remain safely operational. Guests understand and are very grateful for this system and a space where they can quarantine while accessing medical care.
Our Social Work Manager, Annette Humberson, who joined us in March, is connecting with our guests by phone, coaching them through searches for financial resources, and discussing their emotional needs, in the way that only a transplant social worker can. She is planning for summertime outdoor gatherings at a distance and virtual discussion groups with our guests (current and past), for mutual support.
We are Nothing if not for our Valued Relationships: A Call to Action
I genuinely thank you for being among our supporters, and I hope that you will continue to give to Transplant House of Cleveland, as you are able.
I also hope that you will give thought to your relationships, both personal and professional, and introduce some of your friends to Transplant House of Cleveland. I encourage you to invite them to see and experience it, through a personal visit or a virtual one that I can help you host.
I know there are people in and around Cleveland who would feel great synergy with this mission and be instrumental in the furtherance of it. I welcome your input on this and will drop everything I’m doing to have those meetings.
I believe that many people are transformed by being here in this community that emanates compassion, acceptance, gratitude and a spirit of self-efficacy. The spirit of caring and commitment in this place goes much wider and broader in its ripple effect than what we might first think, and touches more than the patients and caregivers we serve. Please, help me invite people to see!
Looking to the Future
Transplant recipients already know that life post-transplant never goes back to “the way it was.” There are new restrictions and requirements, new self-care practices and more medical appointments. There are new reasons to worry. But life is better. We witness that, and they say it. Families have new awareness, a greater sense of daily appreciation, and an earnest desire to turn their remarkable gift of life into amazing good for others.
Coming out of quarantine, maybe we can help others act on their new awareness of how much we value life and each other.
Please stay with us on our journey and let me know how I can help you stay informed and involved here. I will reach out to as many of you as I can, but please call me with your ideas for relationships you envision to be powerful for this House. I can be reached at 440-340-3906.