The Road is Now Calling, And I Must Away.

I wrote this on Friday night, July 30th before I went to bed. I kept delaying putting my head to pillow; not ready yet for this last night to end. This past weekend was bittersweet. We held my mom’s one year memorial service; her final instructions to me and the Greek tradition now fulfilled. While we raised a glass in her memory, I looked around the circle of friends and family gathered in our garden, glasses in hand waiting for our son Richard to speak, as he so eloquently does. They’ve all been on this rollercoaster journey with us since Rich’s first diagnosis in 2004. As have those who couldn’t join us but have sent their messages of love and support. For seventeen years we’ve been surrounded by a family created over the years who have kept us afloat mentally, physically, and spiritually. They have celebrated and cried with us. It’s hard to relocate far from their warmth although we know it, and they, will be with us always wherever we are. So below are my thoughts on that last night as I walked through the house with only the lights from the street coming through the windows. As I did, the final song of Peter Jackson’s movies ran through my head. Although this is not the last goodbye, they did seem fitting.

July 30th, 11pm:

It’s a bit surreal. As I have been since Covid started, I was working remotely. Only today the house is near to empty. The rugs, lamps, photos, furniture is for the most part gone. What made this house our home for the last thirty-odd years is on its way to Rochester, NY. There waits our new house. In the area of the city known as the South Wedge, we can walk to the river, parks, pubs and restaurants.  Initially it was to be our getaway-near-to-the-kids; a charming 1888 brick townhouse that would host grandkid sleepovers and visiting guests.

And then the reality hit. Rich’s health is better up there. The brick house has always been a two family. Our space on the first floor offers one level living. Without those stairs, Rich’s BP remains steady even as we tackle the expected projects to make this place our own. We’ve tested this for months, alternating weeks up and weeks on Long Island. Every time, within 24 hours of being downstate, Rich’s BP would drop. There is no way to live on one level in this cape style house without some major changes. Our heart failure guru said it best: “You’ve found the problem and you found the solution. You need to implement it.”

News travelled fast. An hour later, we’re at the office of our kidney failure guru. “I hear you’re moving.”

And so here we sit in a near empty house. To our chagrin, we find even the toilet paper has been packed and shipped. The time between decision and today has flown by. What we refused to consider a few months ago is now a reality.

Our files from NSUH will be transferred to University of Rochester Hospital system. What a read that will be, to be brought up to date for our new health care group! Appointments and meetings will take place in the coming months as we learn to navigate this new mental and physical reality.

Tomorrow at 6am we load up the car with some things that we didn’t trust to a truck and for the last time as Long Island homeowners, we cross the bridges and head up to our future.

…Many places I have been
Many sorrows I have seen
But I don’t regret
Nor will I forget
All who took that road with me

To these memories I will hold
With your blessing I will go
To turn at last to paths that lead home
And though where the road then takes me
I cannot tell
We came all this way
But now comes the day
To bid you farewell

I bid you all a very fond farewell

(Billy Boyd, The Last Goodbye)

Come Home ‘Cause I’ve Been Waiting For You For So Long

Funny that my last post ended with talking about planning meals. On Friday (as Rich says, “Why always Fridays?”) I came down from my remote office for lunch and found Rich leaning forward fast asleep. While napping is innocuous, his position was not. Any time I see that posture, it’s a good indicator that we’re in for a bit of a ride.

I woke him up and we chatted for a bit about lunch and then segued onto a discussion on our plans for dinner. As we got up to check the freezer and make some decisions, Rich was a little off balance. It happens. So, we wait for his BP to stabilize from the change in altitude. Called orthostatic hypotension or positional hypotension, Rich is used to this and generally will take a moment when getting up from a chair to allow everything to equalize. Walking behind him as we made our way through the house, I could see he was lightly touching the furniture he passed to orient himself upright. Not a good sign.

Before I knew it, his eyes rolled back, and he began to crumble into himself. Syncope. While trying to catch him, I also pushed him up against the nearby bookcases to help me keep him from hitting sharp corners until I could get myself under his arm properly to support him. With the canon of Ray Bradbury practically up his nose and his nose on the shelf pretty much all that was keeping him from crashing down, I kept saying his name louder and louder to bring him back to consciousness. He’s not a small guy and I needed more than some dead weight to keep him from some serious damage. In his confusion when he began to become aware again, he kept saying he was fine. Fine. Nose hooked onto a bookshelf filled with the yellowing seventy-five cent mass markets of Bradbury’s nostalgic science fiction. Truthfully, there are worse places to be.

Once settled, Rich’s blood pressure seemed elusive. Finally, some readings start to show we’re in low blood pressure territory again. Since his last hospitalization, we’ve had a few of these episodes but with some additional fluids and rest, we’ve been able to bring it back up to the norm. Now was not one of those times. When we finally got a reading, it was 78/45. A call to the heart failure doctor’s office confirmed a trip to the ER was needed.

Once again, with covid protocols in place, I dropped Rich off in a way that felt very much like dropping off some dry cleaning… albeit some with some pesky stains that needed special attention.

As they ran tests, they inverted Rich to keep his brain well supplied with blood. Through some trial and error to get needed data, they took his BP lying down, sitting up and standing. Lying down and standing up our guy was in normal range. But sitting, SITTING, his BP dropped to a low of 70/43. None of this made any kind of sense.

Saturday morning, they ran some blood work specific to heart related issues. These were tests that we’ve never seen before, but we do know that the doctors were looking for any kind of infections that would preclude surgery. Because it looks like Rich’s CRT-D implantation into the Borg collective was getting moved up.

In addition to this expected device, we’re also advised that there is another device that is being considered in addition to the pacemaker/defibrillator. This one is called a Cardiomem. This little piece of magic measures pressure in and around the heart to help control medications having to do with the congestive part of congestive heart failure. By measuring that pressure, it is measuring the indication of fluid buildup before our patient has any sense of water retention or bloating. As it’s constantly monitoring and in communication with the health care community, we can be advised to begin taking lasix to forestall any buildup that can be problematic.

Our consults are via phone; Rich and the doctors in his hospital room on one end, and me at home on the other. The waiting, never my strong suit, is maddening. I’m allowed to visit now that some covid restrictions are lifted. I wait on a long line of visitors. My temperature is taken. A timed visitor badge is given to me. I’m told my visit is limited to two hours.

I’m supposed to check in at the nurse’s station in Rich’s unit. I bypass that protocol, I really don’t want a record of when I came in. I stay for eight hours. At one point, six hours have passed, and I ask Rich’s nurse when she will kick me out. She looks at me and meets my eyes. “I don’t think you want to ask me that.” Got it.

At the end of hospital-wide visiting hours, I leave. There will be no overnight stays yet. We had hoped a doctor would be stopping by while I was there, but the room has been quiet as we binged our current TV show. We treasure the time.



Sunday morning the latest news is that electrophysiology is working to schedule Rich for his CRT-D device on Monday at the earliest. After I hang up from the teleconference, the house is once again too quiet. As is my norm, I turn to music to fill the emptiness and the first of the mix is an earworm that has been stuck in my head these last couple of days. A duo from Ireland that we’ve followed from their days in the The Choral Scholars of University College Dublin. It feels like they’ve been along with us on our CHF journey where we kept insisting in 2018: we have a trip planned to Ireland, we’re going. Their harmonies soothe and, as always, lift us at those moments when we need our spirits to soar beyond the now.  

And yes, soon, it will be time for Rich to come home. Not yet, but soon. Because there’s someone I’ve been missing. Who is the better half of me.

Thank you to glenn&ronan for this cover of Come Home.

Hello world
Hope you’re listening
Forgive me if I’m young
For speaking out of turn
There’s someone I’ve been missing
I think that they could be
The better half of me
They’re in the in the wrong place trying to make it right
But I’m tired of justifying
So I say to you

Come home
Come home
‘Cause I’ve been waiting for you
For so long
For so long
And right now there’s a war between the vanities
But all I see is you and me
The fight for you is all I’ve ever known
So come home

I get lost in the beauty
Of everything I see
The world ain’t as half as bad
As they paint it to be
If all the sons
If all the daughters
Stopped to take it in
Well hopefully the pain subsides and the love can begin
It might start now
Well maybe I’m just dreaming out loud
Until then

Come home
Come home
‘Cause I’ve been waiting for you
For so long
For so long
And right now there’s a war between the vanities
But all I see is you and me
The fight for you is all I’ve ever known
So come home

Everything I can’t be
Is everything you should be
And that’s why I need you here
Everything I can’t be
Is everything you should be
And that’s why I need you here
So hear this now

Come home
Come home
‘Cause I’ve been waiting for you
For so long
For so long
And right now there’s a war between the vanities
But all I see is you and me
The fight for you is all I’ve ever known
So come home