When Lee and I were first pulled into this current adventure of pursuing a new heart for him, I kept saying, “I want to write”.
Write about what?
I feel compelled to write about this sense of being propelled separate from, but not against our wills, but also of being guided -- almost ushered -- into a different reality. It’s a road entirely different that any other we’ve taken so far.It’s a through-the-looking-glass, down-the-rabbit-hole kind of reality. Or, in more concrete terms, a reality that normally only opens to us when we’re way up the mountain where the air is very thin but the view transforms us. A new state of being.
What is that John Lennon quote? “Life is what happens while you’re busy making other plans.” We had the plans all laid out. It hadn’t been two months since our victorious departure from dwelling on the land to dwelling in transit across the mountains, deserts and coastlines in our RV. This leap into nomadic living felt a bit like a return to rebellious youth wrapped up in a whole new sense of freedom. We’ve heard our objective aptly described as LESS STUFF/MORE JOURNEY.
One morning in early May in glorious Yosemite, Lee started to weep because he knew his very enlarged heart wasn’t going to take him much further. He was suffering from increasing “air hunger” -- as if someone was holding a pillow over his face. He couldn’t walk to a waterfall less than a half mile’s distance on the flat.
We cut that trip short and drove non-stop to Lee’s cardiologist in Petaluma, who listened and said simply, “I’m sending you to UCSF for a heart transplant.” For me, it was a huge relief. Until then, I hadn’t let my fear all the way to the surface. We looked at each other and knew we hadn’t felt safe in weeks.
What we thought was an appointment to start the process became an immediate admission to the hospital. An avalanche of activity followed --moving out of the RV we’d just moved our few remaining belongings into, putting it back in storage, apartment hunting in San Francisco --and for Lee, daily mega-blood draws, immunizations, colonoscopy, x-rays, cognitive tests, psychiatric assessments -- expedited testing day and night so that the Transplant Team could meet and evaluate his suitability (and mine, as caregiver) to go on THE LIST. It was grueling for Lee, but it was unanimous! He qualified for a heart, and he was classified 1A, top of the list.
Through all the discomfort, lack of sleep and lack of privacy, Lee’s room still became the favorite hangout spot for nurses, doctors, cleaning staff and UCSF students conducting studies.. His irrepressible optimism and compassionate spirit made his hospital room a kind of vortex! People would look in the door and say, “I’ve HEARD about you!”
Next miracle: My nephew responded to my plea for a small, not-drastically inflated rental for the few months we’d be in San Francisco. He had been internet dating a beautiful young woman who owns a home in Noe Valley-- WITH a furnished downstairs studio apartment that had just become available. I called. She asked, “What’s your budget?” My reply: “People have been laughing at my ‘budget’!” We’re in a beautiful, quiet neighborhood with a beautiful secluded garden, a laundry room, great wifi -- for ¼ of the going rate, no lease, no security deposit, no utility costs…. A miracle of no small measure.
I didn’t see our new nest much for the next three weeks. First, there was the week in ICU with Lee hooked up to the IV pole with something called a swan inserted into his neck (which reached all the way through his heart to his lung to keep track of pressures). Waiting. Waiting for an A positive, medium-sized heart to show up. Lee didn’t feel this way, but it made me feel a little ghoulish to be on stand-by for someone to die.
Lee, with his signature wild optimism, was sure he was holding steady and the heart would arrive in time. But despite his positive affirmations and all his record walks around the ICU, his heart kept getting weaker and weaker. Since we started in the hospital with his heart only doing 24% of the work it was supposed to do, the risk of other organs starting to fail due to lack of oxygen soared, and our team came to tell us we would have to accept an LVAD (Left Ventrical Assist Device) as a bridge to transplant. This, too, requires cracking open the sternum and opening up the heart -- so an additional major surgery.
Our constant affirmations that Lee’s new heart would show up in time made us resistant to the LVAD and the trauma of what we thought of as an “extra” surgery. For decades we’d each operated on the stay-focused-on-what-you-want, not-what-you-don’t-want life strategy. It was Jim Keegan’s visit that brought us the perspective and the peace to accept the LVAD as a bridge to transplant. Jim had travelled our road 2 years previously and looks like a triathalon competitor 18 months in with his new heart. Because Jim made such a dramatic difference for us, Lee is determined to pay it forward and become a resource for other heart transplant candidates.
May 27th at 4 pm, Lee was wheeled into the special elevator that goes to the 4th floor operating rooms, and neither of us was worried.It was a night I’ll never forget. Six hours passed, which was expected, and not long after, I watched as they wheeled Lee into the ICU. They said, “Wait while we get him settled and then we’ll come get you.” I waited in the hallway and Dr. Wiesenthaler finally came down the hall. He walked up to me and let out a huge exhale, and my fear rose a few degrees, and then he said, “It was rough. His heart is so friable. It was like trying to sew two sticks of butter together. We’ll just have to see.” And when I started to fight tears, he said, “We have to stay positive.” With every word out of his mouth my fear escalated.
During the half hour I waited to get into the ICU, I paced and cried, paced and cried -- gulping air in the effort to keep my emotions under control -- all the time fighting the thought that this could be the end and I’d never see that big grin again. Lee could actually fall into the 2 and ½ percent that don’t survive this procedure.
I sat hunched out of the way in Lee’s ICU room all night, watching as 5 nurses worked frantically to replace the blood that kept pouring out of him, punching new holes in him, ordering more pints of blood, adjusting drip medications, discussing his numbers.
In the morning, a nurse took me firmly by the shoulders and told me I HAD to go eat and get some rest. I fought it, saying “REST? Like that’s going to happen!” But she was right; I wasn’t helping and wouldn’t be able to help later if I didn’t rebuild my reserves. My son Duncan got me home, walked to a nearby store, and cooked me a fabulous meal while I showered. I ate and was out cold before my head hit the pillow.
The phone woke me up. It was the LVAD team asking my permission to go back in and see what was causing all the bleeding.
They never did find out why Lee was bleeding so much, but they cleaned up the chest cavity, closed him back up and he began to stabilize.
I didn’t tell Lee for several days how close he’d come to dying, and when I did, he kept apologizing -- not sure why. He says it’s because he knows how scared he would have been if I were the one hovering close to death.
I don’t want to go through anything like that any time soon, but I also know that this was a trial by fire, an epic battle between fear and faith that has dramatically expanded my capacity for both compassion and love. I’ve always said, “We’re are constructed of what we overcome.” Clearly, Lee and I are in the process of adding a few more stories on our highrises.
After just over 2 weeks of painful recovery in the hospital, we came home and started to see the exponential daily improvement we’d been promised, as Lee began to enjoy food again and get full nights of sleep. Throughout this whole journey, Lee has experienced explosions of gratitude -- which worried him at first, not normally being subject to such emotional peaks. Now, not just the outpouring of support and love all around us, but just breathing easily sometimes moves him to tears.
We both realize that what we had been calling a detour in the grand nomadic journey we had begun is not a detour at all, but rather one of the highlights -- one of the truly awe-inspiring vistas. We’re determined to make the most of it. After all, people travel from all over the world to visit San Francisco. Why not explore all there is here while we climb this mountain to a new heart for Lee.
As we often do in our travels, we’re looking at each other and saying, “I wonder what’s down this road.”
So far, the view has been more inward than outward -- but it’s awe-inspiring just the same.
Write about what?
I feel compelled to write about this sense of being propelled separate from, but not against our wills, but also of being guided -- almost ushered -- into a different reality. It’s a road entirely different that any other we’ve taken so far.It’s a through-the-looking-glass, down-the-rabbit-hole kind of reality. Or, in more concrete terms, a reality that normally only opens to us when we’re way up the mountain where the air is very thin but the view transforms us. A new state of being.
What is that John Lennon quote? “Life is what happens while you’re busy making other plans.” We had the plans all laid out. It hadn’t been two months since our victorious departure from dwelling on the land to dwelling in transit across the mountains, deserts and coastlines in our RV. This leap into nomadic living felt a bit like a return to rebellious youth wrapped up in a whole new sense of freedom. We’ve heard our objective aptly described as LESS STUFF/MORE JOURNEY.
One morning in early May in glorious Yosemite, Lee started to weep because he knew his very enlarged heart wasn’t going to take him much further. He was suffering from increasing “air hunger” -- as if someone was holding a pillow over his face. He couldn’t walk to a waterfall less than a half mile’s distance on the flat.
We cut that trip short and drove non-stop to Lee’s cardiologist in Petaluma, who listened and said simply, “I’m sending you to UCSF for a heart transplant.” For me, it was a huge relief. Until then, I hadn’t let my fear all the way to the surface. We looked at each other and knew we hadn’t felt safe in weeks.
What we thought was an appointment to start the process became an immediate admission to the hospital. An avalanche of activity followed --moving out of the RV we’d just moved our few remaining belongings into, putting it back in storage, apartment hunting in San Francisco --and for Lee, daily mega-blood draws, immunizations, colonoscopy, x-rays, cognitive tests, psychiatric assessments -- expedited testing day and night so that the Transplant Team could meet and evaluate his suitability (and mine, as caregiver) to go on THE LIST. It was grueling for Lee, but it was unanimous! He qualified for a heart, and he was classified 1A, top of the list.
Through all the discomfort, lack of sleep and lack of privacy, Lee’s room still became the favorite hangout spot for nurses, doctors, cleaning staff and UCSF students conducting studies.. His irrepressible optimism and compassionate spirit made his hospital room a kind of vortex! People would look in the door and say, “I’ve HEARD about you!”
Next miracle: My nephew responded to my plea for a small, not-drastically inflated rental for the few months we’d be in San Francisco. He had been internet dating a beautiful young woman who owns a home in Noe Valley-- WITH a furnished downstairs studio apartment that had just become available. I called. She asked, “What’s your budget?” My reply: “People have been laughing at my ‘budget’!” We’re in a beautiful, quiet neighborhood with a beautiful secluded garden, a laundry room, great wifi -- for ¼ of the going rate, no lease, no security deposit, no utility costs…. A miracle of no small measure.
I didn’t see our new nest much for the next three weeks. First, there was the week in ICU with Lee hooked up to the IV pole with something called a swan inserted into his neck (which reached all the way through his heart to his lung to keep track of pressures). Waiting. Waiting for an A positive, medium-sized heart to show up. Lee didn’t feel this way, but it made me feel a little ghoulish to be on stand-by for someone to die.
Lee, with his signature wild optimism, was sure he was holding steady and the heart would arrive in time. But despite his positive affirmations and all his record walks around the ICU, his heart kept getting weaker and weaker. Since we started in the hospital with his heart only doing 24% of the work it was supposed to do, the risk of other organs starting to fail due to lack of oxygen soared, and our team came to tell us we would have to accept an LVAD (Left Ventrical Assist Device) as a bridge to transplant. This, too, requires cracking open the sternum and opening up the heart -- so an additional major surgery.
Our constant affirmations that Lee’s new heart would show up in time made us resistant to the LVAD and the trauma of what we thought of as an “extra” surgery. For decades we’d each operated on the stay-focused-on-what-you-want, not-what-you-don’t-want life strategy. It was Jim Keegan’s visit that brought us the perspective and the peace to accept the LVAD as a bridge to transplant. Jim had travelled our road 2 years previously and looks like a triathalon competitor 18 months in with his new heart. Because Jim made such a dramatic difference for us, Lee is determined to pay it forward and become a resource for other heart transplant candidates.
May 27th at 4 pm, Lee was wheeled into the special elevator that goes to the 4th floor operating rooms, and neither of us was worried.It was a night I’ll never forget. Six hours passed, which was expected, and not long after, I watched as they wheeled Lee into the ICU. They said, “Wait while we get him settled and then we’ll come get you.” I waited in the hallway and Dr. Wiesenthaler finally came down the hall. He walked up to me and let out a huge exhale, and my fear rose a few degrees, and then he said, “It was rough. His heart is so friable. It was like trying to sew two sticks of butter together. We’ll just have to see.” And when I started to fight tears, he said, “We have to stay positive.” With every word out of his mouth my fear escalated.
During the half hour I waited to get into the ICU, I paced and cried, paced and cried -- gulping air in the effort to keep my emotions under control -- all the time fighting the thought that this could be the end and I’d never see that big grin again. Lee could actually fall into the 2 and ½ percent that don’t survive this procedure.
I sat hunched out of the way in Lee’s ICU room all night, watching as 5 nurses worked frantically to replace the blood that kept pouring out of him, punching new holes in him, ordering more pints of blood, adjusting drip medications, discussing his numbers.
In the morning, a nurse took me firmly by the shoulders and told me I HAD to go eat and get some rest. I fought it, saying “REST? Like that’s going to happen!” But she was right; I wasn’t helping and wouldn’t be able to help later if I didn’t rebuild my reserves. My son Duncan got me home, walked to a nearby store, and cooked me a fabulous meal while I showered. I ate and was out cold before my head hit the pillow.
The phone woke me up. It was the LVAD team asking my permission to go back in and see what was causing all the bleeding.
They never did find out why Lee was bleeding so much, but they cleaned up the chest cavity, closed him back up and he began to stabilize.
I didn’t tell Lee for several days how close he’d come to dying, and when I did, he kept apologizing -- not sure why. He says it’s because he knows how scared he would have been if I were the one hovering close to death.
I don’t want to go through anything like that any time soon, but I also know that this was a trial by fire, an epic battle between fear and faith that has dramatically expanded my capacity for both compassion and love. I’ve always said, “We’re are constructed of what we overcome.” Clearly, Lee and I are in the process of adding a few more stories on our highrises.
After just over 2 weeks of painful recovery in the hospital, we came home and started to see the exponential daily improvement we’d been promised, as Lee began to enjoy food again and get full nights of sleep. Throughout this whole journey, Lee has experienced explosions of gratitude -- which worried him at first, not normally being subject to such emotional peaks. Now, not just the outpouring of support and love all around us, but just breathing easily sometimes moves him to tears.
We both realize that what we had been calling a detour in the grand nomadic journey we had begun is not a detour at all, but rather one of the highlights -- one of the truly awe-inspiring vistas. We’re determined to make the most of it. After all, people travel from all over the world to visit San Francisco. Why not explore all there is here while we climb this mountain to a new heart for Lee.
As we often do in our travels, we’re looking at each other and saying, “I wonder what’s down this road.”
So far, the view has been more inward than outward -- but it’s awe-inspiring just the same.
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