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 hate 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

His Power Is In Your Hands!

When we were about the age that our grandchildren are now, our upbringing was of the free-range kind. Basically, we were sent out to play and admonished to come in when the six o’clock siren went off. Usually Saturday mornings were spent watching cartoons while we ate breakfast and doing our chores before we were free to set off on our adventures. Wildly different than anything we had ever seen before were the early anime offerings of Speed Racer, Astro Boy and Gigantor in the mid 1960’s. No Looney Tunes these! Wide eyed kids with an almost James Bond arsenal at their fingertips. Their theme songs were simple earworms that would not give up.

As Rich had limitations while his meds were being optimized, we figured a Roomba would help take care of what are still, in our adult lives, Saturday chores. So it was fitting, that, given the option, our little self-propelled vacuum would be named after one of those anime characters: “Gigantor the space aged robot, He’s at your command….” Yes, please vacuum.

My phone could and did set him on his path around the house, sucking up debris and dust. If I was at work and Rich activated him, I would get messages when my space aged robot got into trouble and these would make me laugh, “Gigantor needs your help” or better yet, “Gigantor is stuck near a cliff!”

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A cliff.

 

 

Lately, it has been feeling like our household is stuck near a cliff; a precipice that may or may not be the way we want to go.

A couple of weeks ago, Rich had another episode of syncope; he blacked out without warning while walking through the house; no cliff dive this… he was walking on a flat surface without obstructions. He has taken care when getting up from sitting to center himself before moving to avoid any dizziness or lightheadedness. But there are times when a quick drop in blood pressure will manifest and hit unexpectedly. Or was it an irregular heartbeat?

This time, his fall landed the bulk of him relatively safely on the dining room rug. His shoulder wasn’t so lucky. A huge open scrape went down his arm, his shirt having ripped. From what we can tell, he hit the outer corner of the baseboard molding of the bookcases. Sharp. Mom heard the fall and sat with him and did her best to help him, bringing a chair to his side for him to push himself up on. When I got home, we cleaned the sizeable wound and did what we could to get him comfortable. Bruises began to blossom.

We meet with an orthopedic and he tells us that the floating calcification he sees on the x-ray may have been in his shoulder before; we have no slides to tell us when this occurred. His take is that we just need to allow the inflammation to go down and see how Rich’s shoulder feels from there. A well placed cortisone shot helps in the days to come and Rich is advised to do mild exercises as home physical therapy to avoid frozen shoulder syndrome.

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We had a follow-up with our Heart Failure guru regarding the fall as well as to discuss the results of the CPET testing to see if a pacemaker may be of benefit to him. She spouted numbers and statistics as I frantically jotted down notes. Then she went into the down and dirty bottom line:

The overall test results indicate something called oscillatory breathing… almost a type of apnea… while exercising. This ties in well with her previous decision to have Rich evaluated at a sleep clinic. Oscillatory breathing is very much associated not only with CHF but also with the centralized sleep apnea she suspected. The guru offers to see if she can get us an earlier appointment than the July one we currently have. Then she’d like to have another CPET done after to see if there is improvement with whatever suggested therapy the sleep group has. CPAP or BPAP therapy in the overnight are generally the solution. And this helps the heart to rest and heal. The option of a pacemaker for support that we discussed in our last post is now a stronger contender given the results and Rich’s fall …and we’re getting closer to yes!

To add to the data and to perhaps help find a definitive cause to the syncope episodes, we discuss heart monitoring options. The best choice seems to be a loop monitor which would be implanted below the skin (Borg once more!) and will provide downloadable information on heart rhythms. After her discussion with our cardiologist, it’s decided to go forward with this. In two weeks, our One of Ten (formerly of Nine) will get this procedure done and another level of data will be added to the pacemaker decision. We will now be welcoming a cardiac electrophysiologist to our list of experts. There is a measure of relief with this; to have the support of some monitoring and get some real-time information as issues occur. If needed, again, a pacemaker will add to the ongoing support.

We also find we should revisit one of our meds that had been with us since we began prednisone at the beginning of this journey but was dropped two years ago. Zoloft had helped with the depression that prednisone brought upon the adrenals. When the pain management group gave Rich Cymbalta to help with neuropathy pain, they kept the Zoloft active as well. For a year he took both. And then we slowly weaned off, keeping only the Cymbalta for the neuropathy. But Rich has felt the difference.

Now that we’re coming to a year of continual med changes and tweaks, non-stop testing to optimize energy and healing, and a whole lotta everchanging rules, we think it’s time to consider Zoloft again. The cortisone shot Rich received in his shoulder could not have helped; steroids always depress his adrenals. And it is well known that chronic illnesses of all kinds can bring a discombobulation that is tough on the patient and that is detrimental on this path. Again, we welcome this available support.

Lastly, our doctor admonishes us to keep to the clean way of eating we did when we first met last year. With all the changes in the last six months, we’ve gotten a little off track. It’s time to pull back from that cliff we, like our Gigantor, were stuck near. If we need to send out a distress signal, we have a whole bunch on our team to respond, but ultimately, we are responsible for doing everything we can on our end… like our vacuum, we need to be reset onto firm ground, set the big button to GO and start anew.

Bigger than big,

taller than tall,

Quicker than quick,

stronger than strong.

Ready to fight for right, against wrong.

Gigantor the space aged robot,

He’s at your command.

Gigantor the space aged robot,

His power is in your hands.