App Fatigue Is Real

There is an app.

There is always an app. This one is a link to Rich’s medical records in abbreviated form. Results of blood work. Results of MRIs, CAT scans, X-rays. Reports of his implanted loop monitor. A little microcosm of our journey in abbreviations and code numbers assigned by health care professionals.

In that app are ambulatory documents that pop up after each visit to a specialist. There we find whatever changes to medications or protocols that were discussed. But before you get to that, there is a list of every single side effect and problem that has come Rich’s way. There are listed forty-five issues. When we first saw our oncologist seventeen years ago there was one. A diagnosis of Non-Hodgkin’s Lymphoma. At that point, the specific type was not yet known.  Our first visit with the oncologist had a humorous moment when, lifting up a single piece of paper from his file folder he said “This is it? This is all you have?”

And it was.

As we’ve discussed before, our journey began in 2003 as we were getting ready for a family vacation along the St Lawrence Seaway in a rented houseboat. To make things easier on the water, the guys were all getting a buzz cut, no flyaway hair for my men!

As I began Rich’s barbering, there were two tiny raised bumps on his scalp. Little cysts that I said casually he should have looked at. A few weeks after our return from the locks, islands, bays, passing cargo ships, lighthouses big and small, swimming, fishing, cooking and stargazing into the night, Rich had those cysts removed. The surgeon said they looked like nothing to be concerned about. That single page report begged to differ.

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We’re now seventeen years since that trip on the river. The one little piece of paper has grown one by one, and now forty-four of those problems have been addressed. Like that river we boated on in 2003, Rich keeps on keeping on, sometimes with a bit of a stop and wait like the locks along the way.

In a few weeks, what we hope is the last of these problems will be taken care of. Rich has had a left bundle branch blockage since he ended his first rounds of chemo in 2004. It was never really on our radar until it was discussed that heart issues can come from the chemo proposed in 2014. Anyone who has been a reader here, knows that the last two years, that LBB has been problematic and compounded by the beneficial poisons that brought Rich to remission.

Our doctors have been talking about giving our former Borg an implanted CRT-D device which is a combined pacemaker/defibrillator for a couple of years. CRT stands for Cardiac Resynchronization Therapy… it works to get the heartbeats from the ventricles to work in sync. In this case, the D indicates a defibrillator is part of the package as well.

When he had his ketamine infusions this May, our pain relief guru shook his head and consulted with our cardiologist… “his heart wants to go into a-fib, but then it refuses to.” Ever the fighter!

A couple of weeks ago our patient ended up in the ER overnight from a combination of factors affecting a combination of his issues. A hot day, congestive heart failure, gardening work, reduced kidney function, sweating, how much water intake was viable… a fine line of where the tipping point involves several decisions. Staying outside in the heat, doing just a bit too much yardwork, drinking the limited but recommended amount of daily fluid yet not accounting for sweating brought Rich’s blood pressure down to 71/41. We tried to bring back up but he needed a bit more than we could provide at home. This time, even the walker couldn’t get him to the door; our doctor arranged for an ambulance. We had immediate thoughts of another TIA, but what it boiled down to is that his LBB is making his heart work too hard against himself.

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That ER visit showed that now it was time for Rich to go full on Borg again. In two weeks, his loop monitor will be removed, and the CRT-D will be installed. This pacemaker/defibrillator will help his left and right ventricles beat at the same time. That LBB will not be able to have that little blip where the left ventricle doesn’t quite contract at the same time as the right. Resistance is futile!

In the meantime, we’re working on getting the little room on the first floor set up as a neutral level place to relax and recuperate. Testing is in progress now as Rich is a little more tired, a little more out of breath, retaining a little more fluid. Thankfully, we can now release it into the beta level… planning our meals out and figuring which streaming platforms might be fun for after. Because, ya know, there’s always an app.